Evaluation of the Big Lottery Fund Palliative Care Initiative

Final Report

September 2007

PRINCIPAL INVESTIGATORS

Professor Yvonne H Carter Professor Roland PetcheyDean, Warwick Medical School Professor of Health ServicesPro-Vice Chancellor (Regional Engagement) Research and PolicyThe University of Warwick City University,Coventry, Northampton SquareCV4 7AL London, EC1V 0HBTel: +44(0)24 7657 4007 Tel: +44(0)20 7040 8796Fax:+44(0)24 7652 8375 Fax:+44(0)20 7040 8595

Email: yvonne.carter@warwick.ac.uk Email: r.p.petchey@city.ac.uk

LEAD RESEARCHER

Ms Jacky Williams Senior Research Fellow (Warwick Medical School)

CO-RESEARCHERS

Ms Alison Copeland Researcher (Queen Mary, University of London)

Dr Daniel Kelly Reader in Cancer & Palliative Care (Middlesex University)

Dr Alastair Owens Lecturer in Geography (Queen Mary, University of London)

Professor Mari Lloyd-Williams Professor and Honorary Consultant in Palliative Medicine (Liverpool)

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Acknowledgements

The research team are extremely grateful to the many people involved within case study sites and elsewhere, who gave up their valuable time to participate in this evaluation and also to the staff of the Big Lottery Fund (policy officers; programme managers; case managers and evaluation managers) who provided information and guidance over the course of the evaluation.

We would also like to acknowledge additional members of the evaluation team:

Dr Mohen Asadi-Lari (previously of University of Warwick)

Professor Sarah Curtis (previously of Queen Mary, University of London)

Jamie Fagg (previously of Queen Mary, University of London)

We would also like to thank Kimberly Thomas for survey data input and Christopher McConkey for data analysis (both at Warwick University.)

Thanks are also due to Marianne Mann and Alison Taylor; their administrative and clerical support has been invaluable.

Thanks also to Antonia Murphy for providing professional supervision for Jacky Williams throughout the evaluation.

Interim evaluation reports can be found on the BIG Lottery Fund web pages at: http://www.biglotteryfund.org.uk

Copyright: Big Lottery Fund 2007Published by: Big Lottery Fund,1, Plough Place,London EC4A 1DE

Tel: 0207 211 1800Fax: 0207 211 1750Email: e&r@biglotteryfund.org.uk

Use of material in this report must be appropriately acknowledgedThe Big Lottery Fund

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Foreword

Professor Mike RichardsNational Cancer Director, England

The BIG Lottery Fund Palliative Care initiative led to the investment of £84m in a wide range of palliative care services across the UK over a three year period. Each country determined its own priorities for funding. In Wales funding was mainly directed towards investment in capital equipment. England, Scotland and Northern Ireland each put considerable emphasis on developing services for patients with conditions other than cancer. In England, a particular emphasis was placed on services for children, which were allocated £48m out of the total of just over £70m for England.

This report provides an independent evaluation of what has been achieved through this major initiative. The researchers from Warwick Medical School, City University London and Queen Mary University of London are to be commended for the quality of this evaluation which involved both a questionnaire survey of grant recipients and detailed case studies of a sample of schemes.

In total 275 grants were made as a result of the BIG Lottery Fund initiative. 780 staff were recruited from a wide range of professional backgrounds, along with around 450 volunteers. Many of the schemes provided additional training for staff and better information for patients. Importantly, new services were established for groups of patients who have historically been poorly served. These include patients with Huntington’s disease, Motor Neurone Disease and those from black and minority ethnic groups.

The authors of the report conclude that the BIG Lottery Palliative Care initiative has to be accounted a success on a variety of fronts. The diverse range of innovative services should be applauded, especially the establishment of services for non-cancer patients. In addition the programme has led to improved collaboration both within and across sectors. Importantly, many of the services have secured continuation of their funding from statutory sources, a clear indicator that they are valued locally.

Mike RichardsNational Cancer Director

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Table of contents

Acknowledgements..............................................................................................iiiForeword......................................................................................................................ivExecutive summary.....................................................................................................ixOverview of the report................................................................................................xivSection 1 Background..................................................................................................11 Big Lottery Fund palliative care initiative...................................................................1

Table 1 Allocated Budget and Programme Focus by Country.....................1Additionality..................................................................................................1

1 1 Palliative care programmes in Northern Ireland & Scotland...........................11 2 Palliative care programme for adults in England............................................21 3 Palliative care programmes for children in England.......................................21 4 Evaluation scope............................................................................................2

Additional notes............................................................................................31 4 1 Evaluation team...........................................................................................31 5 Methods..........................................................................................................31 5 1 Case studies................................................................................................3

Table 2 Typology of case study schemes for in-depth evaluation................51 5 1 1 Methodological reflections........................................................................61 5 2 Networking...................................................................................................71 5 3 End of grant life survey to all schemes........................................................81 5 4 Systematic literature review.........................................................................91 5 5 Geographical analysis.................................................................................9

Map 1: Location of the 15 Palliative Care case study sites across the UK 102 Developing policy....................................................................................................12

2 1 Northern Ireland............................................................................................122 1 1 Northern Ireland palliative care programme..............................................12

Table 3 Overview of grant schemes across Northern Ireland....................132 2 Scotland........................................................................................................142 2 1 Scotland palliative care programme..........................................................15

Table 4 Overview of grant schemes across Scotland................................162 3 England, palliative care for adults................................................................172 3 1 Cancer services in England.......................................................................182 3 2 End of Life Care Strategy..........................................................................182 3 3 England adult palliative care programme..................................................19

Table 5 Overview of adult grant schemes across England........................192 4 England palliative care for children..............................................................192 4 1 Voluntary sector funding............................................................................192 4 2 Independent review of children’s palliative care........................................202 4 3 Development of a National Framework for children’s palliative care.........222 4 4 England children’s palliative care programme...........................................23

Table 6 Overview of children’s grant schemes across England.................242 5 Key points.....................................................................................................24

Section 2 Findings......................................................................................................253 What worked?.........................................................................................................25

Table 7 Survey Response (%) by country and programme........................273 1 National stakeholder views...........................................................................273 2 Service innovations......................................................................................303 3 Awareness raising........................................................................................353 4 Staffing projects............................................................................................37

Table 8 Paid posts across all schemes......................................................383 4 1 Volunteers.................................................................................................39

Table 9 Matching volunteers with patients and carers...............................393 4 1 1 Managing volunteers..............................................................................40

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3 5 Partnerships.................................................................................................423 5 1 Organisational partnerships......................................................................42

Table 10 Key partners and most important partner (% all schemes).........423 5 2 Practical partnerships................................................................................453 6 Organisational change..................................................................................46

Table 11 Impact on schemes of health service reorganisation (% schemes responding).................................................................................................47

3 7 Key points.....................................................................................................474 Who did the Lottery-funded schemes work for?......................................................49

4 1 The family.....................................................................................................494 1 1 Children’s services....................................................................................494 1 2 Adult services............................................................................................524 2 Siblings.........................................................................................................524 3 Adolescents and young people....................................................................554 4 Health and social care professionals............................................................604 5 Patients with conditions other than cancer...................................................62

Table 12 Number of adult schemes that reported providing services for patients with conditions other than cancer (% of all adult schemes.).........63

4 6 Referrals.......................................................................................................65Table13 All referral agencies and main referral agency (% of all schemes)....................................................................................................................66Table 14 Appropriateness and timeliness of referrals (% of all schemes). 67Table 15 Mean numbers of patients and carers aged under and over 65..69

4 7 Key points.....................................................................................................715 Why did grant schemes work?................................................................................73

5 1 Success factors............................................................................................735 1 1 Service champions....................................................................................735 1 2 Partnership working...................................................................................745 1 3 Effective steering groups...........................................................................755 1 4 Teams........................................................................................................755 1 4 1 Effective support mechanisms...............................................................755 2 Key points.....................................................................................................76

6 Sustainability...........................................................................................................776 1 Findings adult schemes................................................................................77

Table 16 Adult schemes that tried to obtain continuation funding (% respondents)...............................................................................................77Table 17 Adult schemes continued in their entirety (% of those that had tried to obtain continuation funding)...........................................................77Table 18 Adult schemes main elements continued (% of those that had tried to obtain continuation funding)...........................................................78Table 19 Adult services continued indefinitely (% of those that had tried to obtain continuation funding).......................................................................78

6 1 1 Discussion on the sustainability of adult services.....................................79England..............................................................................................................79Northern Ireland..................................................................................................79Scotland..............................................................................................................796 2 Findings children’s schemes........................................................................80

Table 20 Children’s schemes that tried to obtain continuation funding (% respondents)...............................................................................................80Table 21 Children’s schemes continued in their entirety (% of those that had tried to obtain continuation funding)....................................................80Table 22 Children’s schemes main elements continued (% of those that had tried to obtain continuation funding)....................................................81Table 23 children’s services continued indefinitely (% of those that had tried to obtain continuation funding)...........................................................81

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6 2 1 Discussion on the sustainability of children’s services..............................816 2 1 1 The future of children’s home-based services........................................836 3 Key points.....................................................................................................85

7 Conclusions.............................................................................................................877 1 Achievements...............................................................................................877 1 1 Diversity and innovation............................................................................877 1 2 Extending the boundaries..........................................................................877 1 3 Within sector and cross sector partnership working..................................877 1 4 Country differences...................................................................................887 2 Challenges....................................................................................................887 2 1 Organisational change...............................................................................887 2 2 Sustainability.............................................................................................887 2 3 Terminology and definitions......................................................................887 2 4 Transition between young people’s and adult services.............................897 3 Key points.....................................................................................................89

References.................................................................................................................91Appendix 1 National overview of grant schemes...................................................94Appendix 2 Table of selected schemes..................................................................97Appendix 3 National stakeholder participants......................................................101

Big Lottery Fund.......................................................................................101Department of Health...............................................................................101

England............................................................................................................101Children’s strand.......................................................................................101Adult strand...............................................................................................102

Scotland............................................................................................................102Northern Ireland................................................................................................102

Appendix 4 Interview schedule for national stakeholders....................................103Appendix 5 Follow up interview schedule for national stakeholders....................104Appendix 6 Vignettes...........................................................................................106

Vignette 1 Huntington’s Disease, palliative and social care project, Northern Ireland........................................................................................106Vignette 2 St John of God Hospice, Community liaison sister, Newry, Northern Ireland........................................................................................109Vignette 3 Scottish Motor Neurone Disease Association, Scotland wide.111Vignette 4 Rachel House children’s hospice at home scheme, Inverness, Scotland....................................................................................................114Vignette 5 ‘Caring Together - Making a Difference in adult palliative care at Home’ Sunderland....................................................................................117Vignette 6 Somerset coast adult hospice at home service.......................120Vignette 7 South Worcestershire Adult community joint palliative care project.......................................................................................................123Vignette 8 Waltham Forest, adult palliative care scheme,........................125Vignette 9 Naomi House children’s hospice, Winchester.........................127Vignette 10 Nottingham children’s Butterfly home-based and bereavement schemes...................................................................................................130Vignette 11 Bradford children’s bereavement project...............................134Vignette 12 Brent & Harrow palliative care home-based scheme............136Vignette 13 Western Sussex, Snowdrop home-based and bereavement services for adolescents and young people.............................................138Vignette 14 Grimsby, St Andrew’s Hospice scheme................................141Vignette 15 Stockport Dragonfly project...................................................143

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Executive summary

Section 1 Background

Chapter 1 Big Lottery Fund Palliative care initiative

The Big Lottery Fund Palliative Care initiative allocated £84 million to a range of schemes focusing upon the provision of palliative care for adults and children with cancer and other life threatening / life-limiting conditions. Funding was intended to facilitate the support and development of local children’s hospices, increase the number of community teams and bereavement support services, improve the response to patient preference and enhance the provision of support and information services.

A total of 275 grant schemes were funded, but 3 schemes in Northern Ireland were revoked, resulting in 272 schemes. The highest concentration of adult grant schemes and a large proportion of children’s grant schemes were in areas where deprivation and deaths from cancer were highest.

The evaluation adopted a multi-method approach, collecting both quantitative and qualitative data. A purposive sample of 15 case study sites covering 18 grant schemes was evaluated in-depth. Over the duration of the evaluation 30 case study visits were completed, involving 135 interviews (including a number of group interviews) with a total of 139 people (many of whom were interviewed on more than one occasion.) In total, 24 key national stakeholders were interviewed at the outset and towards the conclusion of the initiative.

A survey was distributed to all 272 schemes as they approached the end their of grant funding.

Chapter 2 Developing Policy

Northern Ireland is undergoing a review of Public Administration and the Northern Ireland Assembly has been restored.

The Scottish Partnership for Palliative Care has increased access to palliative care support and services for people with life-threatening conditions other than cancer and promoted the integration of palliative care principles in the care of people with a range of progressive life-threatening conditions.

The National Cancer Director for England is leading on a Cancer Reform Strategy and an End of Life Care Strategy, both due for publication later this year.

An Independent Review of Children's Palliative Care has been published and a National Strategy for children’s palliative care is being developed for publication early in 2008.

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Section 2 Findings

Chapter 3 What worked?

There were divergent viewpoints among professionals and also between them and the general public about the appropriateness of various terms such as ‘palliative care’ and ‘hospice’.

The BIG Lottery programmes funded service development that met previously unmet needs, such as specialist disease services (e.g. Huntington's Disease), chemotherapy at home and children’s hospice at home services.

A total of 173 schemes (64%) responded to the end of Lottery-funding survey.

The initiative contributed to raising awareness of palliative care. 80% of all schemes that responded to the survey had developed some form of information and 80% of schemes developed training at some level.

A total of 780 paid posts were created, with a high proportion being for nurses and unqualified health and social care workers.

32 schemes recruited a total of 446 volunteers who provided a range of services and in many cases, were matched with equal attention to patients and carers. Turnover of volunteers was problematic for some adult schemes.

Partnership working was a success with 28% of schemes working in partnership within the same sector and 78% across sectors.

A statutory health organisation was identified as the most important partner by 44% of adult schemes and 69% of children's schemes. The new services were well integrated within the local economy of palliative care provision.

Chapter 4 Who did the Lottery funded schemes work for?

Both adult and children’s programmes were developed to meet the needs of the entire family (sometimes including extended family), and many addressed social and psychological functioning.

Specific services were set up for siblings of children with life-limiting conditions, to address issues of grief and loss and to provide them with time and space of their own.

Some children's schemes addressed the specific needs of adolescents and young people but found that transition to adult services was often highly problematic.

Health and social care professionals benefited from having access to increased levels of information and training on palliative care and other associated issues.

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Schemes made considerable efforts to increase the level of referrals for people with conditions other than cancer. Turning abstract need into an actual client base turned out to be more complex than first anticipated.

The survey analysis across all programmes identified nurses working in the community as the most reported referral agencies, with district nurses being the main referrer for 24% of adult schemes and children's community nurses for 40% of children schemes.

The difference between social services referrals to adult services and children’s services was statistically significant and may reflect cultural differences between statutory children’s health and social care organisations.

27% of all adult schemes and 31% of all children’s schemes reported that some referrals were inappropriate. 58% of all adult schemes and 66% of all children’s schemes agreed that referrals were made at the right time. 53% of all adult schemes and 65% of all children’s schemes agreed that the referral process improved over time.

The highest percentage of adult patients receiving services were aged over 65 years and male patients accounted for slightly more than female patients. More carers were aged over 65 and female.

Chapter 5 Why did the schemes work?

Some services were ‘championed’ by people at strategic levels who were committed to the development of palliative care services, particularly for those with conditions other than cancer.

Multi-sector and multi-agency partnerships contributed to the success of schemes. Steering groups, where they were put in place were also a contributory factor.

Larger teams appeared to be more effective in supporting each other. A majority of schemes provided additional support mechanisms to ensure the (physical and emotional) well being of staff.

Chapter 6 Sustainability

Most adult schemes attempted to secure continuation funding, with the exception of Scotland, where some of the schemes were time-limited and achieved their objectives within that time-scale.

97% of the adult schemes in England that had sought continuation funding were successful in securing some form of funding to continue their service(s) either in their entirety, main or minor elements. The majority of these schemes were funded indefinitely. There remained some uncertainty about the duration of funding for the remainder.

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Statutory sector organisations were the main commissioners of continuing adult services in England.

50% of the schemes in Northern Ireland that had sought continuation funding were successful in securing funding to continue their service(s) either in their entirety, or main elements. A mixture of statutory and voluntary sector organisations funded the majority of these schemes for an indefinite period.

41% of the schemes in Scotland that had sought continuation funding were successful in securing funding to continue their service(s) either in their entirety, or main elements. Many of the schemes had been time-limited and produced information or training that would continue without additional funding. The funding picture for Scotland is mixed, with a higher level of voluntary sector schemes that secured funding from a combination of voluntary and statutory sector organisations.

41% of children’s schemes in England that had sought continuation funding were continued in their entirety. A further 35% of schemes succeeded in obtaining funding to continue main or minor elements of the service that was previously supported by a Lottery grant.

Children's schemes reported that the elements that were not funded were generally those that were most valued by families, relating to psycho-social care and support.

Continuing children’s home-based services may operate in a different way, and some will continue with reduced capacity. In some cases, considerable uncertainty remained for both service providers and service users about the long-term sustainability of their services.

Chapter 7 Conclusions

Lottery funding supported the development of service innovations that enriched and diversified the range of services available for adults and children.

Lottery funding accelerated the diversification of services from cancer to non-cancer conditions, from the hospice to the community and the home and from individual patients to families.

The initiative succeeded in its stated aim of encouraging partnership working between agencies and across sectors.

There were differences in the administration of programmes across the United Kingdom.

Lottery funding coincided with a number of key palliative care policy developments.

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Organisational change impacted on schemes, particularly within the children’s programmes.

Continuation funding for children’s services may result in a narrowing back to the clinical core.

Definitions of palliative care terms need to be clearly explained to health professionals and the general public.

There is a risk that the policy gap between adult and children’s palliative care may have widened as a result of Lottery funding.

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Overview of the report

Section 1 Provides the background to the palliative care initiative, the evaluation framework and policy developments.

Chapter 1. Describes the £84 million Palliative Care initiative and provides an overview of the programmes within each of the countries. The evaluation framework includes details of the case study sample selected for in-depth case study evaluation. Chapter 2. Sets out policy developments for each of the countries included within the national evaluation (i.e. Northern Ireland, Scotland and England).

This section is likely to be of specific interest to policy makers and academics.

Section 2 details the analysis of data collected and examines what worked, for whom and why.

Chapter 3. National stakeholder views; service innovations; their contribution to raising levels of awareness; who provided the services and the partnerships arrangements that emerged.

This chapter is likely to be of specific interest to policy makers and service planners; funding bodies and academics.

Chapter 4. Service beneficiaries including: the family; siblings; adolescents and young people; health and social care professionals and patients with conditions other than cancer; referral agencies and details of referrals.

This section is likely to be of specific interest to policy makers, service planners; funding bodies and academics.

Chapter 5. What factors made services successful.

This section is likely to be of specific interest to policy makers and service planners; funding bodies and academics.

Chapter 6. Sustainability of grant schemes.

This section is likely to be of specific interest to policy makers and service planners; funding bodies and academics.

Chapter 7. Conclusions.

This section is likely to be of specific interest to policy makers and service planners; funding bodies and academics.

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Section 1 Background

1 Big Lottery Fund palliative care initiative

Big Lottery Fund (previously known as the New Opportunities Fund), as part of its Palliative Care initiative, allocated £84 million to a range of schemes focusing upon the provision of palliative care for adults, children and individuals with cancer and other life threatening conditions. This funding was intended to facilitate the support and development of local hospices, increase the number of community teams and bereavement support services, improve the response to patient preference and enhance the provision of support and information services. The programme in Wales was excluded from this evaluation as the funding was mainly directed towards investment in capital equipment. The focus for grant schemes in each of the other three countries, are outlined below, together with their allocated budgets. (Table 1) An overview of all grant schemes included within the evaluation is provided as Appendix 1.

Table 1 Allocated Budget and Programme Focus by Country

Country Programme Focus Allocated BudgetNorthern Ireland Children and Adults £4,100,000Scotland Children and Adults £5,400,000England Adults £22,470,000England Children £48,000,000

Source: www.nof.org.uk

Additionality

Historically, palliative care services in the United Kingdom have been largely funded through the voluntary sector, with adult and children’s hospices in particular receiving just a small proportion of their income from the statutory sector (averaging 31% and 5% respectively, (personal communication, Help the Hospices.)) The Lottery-funded programmes therefore provided opportunities for the development of services that were additional to, rather than overlapping with, existing services.

1 1 Palliative care programmes in Northern Ireland & Scotland

In Scotland and Northern Ireland, BIG-funded schemes provided palliative care, support and information services for children and adults with cancer and other life threatening conditions. In Scotland, local NHS Boards coordinated 55 grant schemes within their areas. In addition, a separate strand funded 4 national schemes that mainly focused on the non-cancer palliative care needs of the entire population of Scotland.

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Health and Social Services Boards worked with cross-sectoral organisations in Northern Ireland to develop 25 grant schemes (subsequently reduced to 22 schemes after 3 schemes were revoked) that addressed local needs. The BIG Lottery Fund managed both of these programmes within their own countries.

1 2 Palliative care programme for adults in England

The aim of this programme was to improve the quality of life of adults with a life-limiting or life-threatening condition and to provide support for their families. The programme was specifically targeted at areas of the country identified as having the highest palliative care need. Awards were made to 56 multi-professional teams to enable them to care for people in their own homes. These teams offered therapeutic, nursing and emotional support and a number also made use of complementary therapies. Many of these schemes also extended the availability of care for longer periods of the day.

1 3 Palliative care programmes for children in England

The aim of this programme was to improve the quality of life for children with life-threatening or life-limiting conditions and their families. Seventy-one awards were made to home-based care teams to enable them to provide a range of services to allow children to be cared for at home. Thirty-nine bereavement teams helped families who had experienced or were likely to experience the death of a child. Twenty-five children’s hospices benefited from a grant that enabled them to sustain or develop their provision.

1 4 Evaluation scope

The main aims of the evaluation comprised an assessment of the:

Success of the initiative in extending and increasing the provision of services, and in increasing the amount and quality of provision in areas (notably rural areas) where such provision had generally been weak.

Success of the initiative in widening access to services, including its success in reaching new target groups.

Impact on quality of life for those using services (including people with life-threatening illnesses, their families and carers).

Sustainability of projects and of gains made.

Extent to which the initiative supported BIG’s mission and values, and in particular its’ aims of social inclusion and partnership working.

BIG was also interested in finding out:

How far staff skills were shared and developed, both for new staff and staff

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groups in existing services and in the context of extending provision to conditions other than cancer.

How far services for children were successfully co-ordinated.

How holistic the range of services provided was perceived to be by service beneficiaries, including families and carers.

How far funded projects provided beneficiaries, families and carers more choice and control.

Additional notes

Analysis of data across all funded projects provided an overview of the initiative and enabled the team to assess issues of coverage, access and availability of services. However, much of the evaluation was undertaken by working closely with a sample of 15 case study sites (18 grant schemes.) BIG and the evaluators ensured that sampling took due account both of differences between countries and of the relative weighting of the children's and adults' programmes in England.

The evaluation commenced in April 2003 and was completed at the end of September 2007.

The evaluators produced annual interim reports, from which BIG published summaries (these are available on the BIG Lottery Fund web pages: www.biglotteryfund.org.uk)

1 4 1 Evaluation team

A partnership, comprising Warwick Medical School, The University of Warwick; the Institute of Health Services Research and Policy, City University and a selection of appropriate colleagues from a range of University departments, including Queen Mary, University of London, was established to evaluate this programme. Co-investigators are listed on page ii.

1 5 Methods

The evaluation research design was phased, multi-method, multi-level and flexible. A range of data collection methods was utilised (including interviews; focus groups; observation of service delivery within schemes; attendance at steering group meetings; visits to service users’ homes; documentary analysis; analysis of routine data and a survey of all grant schemes carried out towards the end of each programme.)

1 5 1 Case studies

In the initial phase of the evaluation a detailed overview of all funded grant schemes was developed. In the second phase of the project, we carried out a detailed evaluation of a sample of sites by means of case studies. A carefully

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selected purposive sample of 18 schemes was investigated at different levels of detail over their grant lifetime.

(NB. 6 case study sites involved combined schemes (e.g. children’s home-based service plus bereavement service or two adult home-based schemes covering a wide geographical area. This resulted in 15 case study sites in total under investigation, 5 at Level 1 and 10 at Level 2.)

We carried out two levels of case study:

Level 1 consisted of in-depth, longitudinal case studies of sites over the entire duration of the evaluation. An initial visit of up to one week was followed up by means of annual follow-ups consisting of site visits of up to three days duration and / or telephone interviews. The purpose of these case studies was to investigate in-depth the origins and subsequent development of schemes, including their evolving role in the local economy of health and the dynamics of their relationships with other local stakeholder organisations. They were also used to generate hypotheses / tentative conclusions for further investigation. 5 Level 1 case study sites were visited annually.

Level 2 consisted of in-depth, but briefer case studies. These studies consisted of a single visit of up to three days, with annual telephone interview follow up. The emphasis was on understanding the operation and development of the project itself, (i.e. the ‘internal context’, (Pettigrew, 1992)) but a limited number of external key informants were interviewed. The purpose of Level 2 case studies was to cross-check the generalisability of findings from Level 1 cases studies and to expand the breadth of case study coverage. All 10 level 2 case study sites were visited once, with annual follow up by telephone.

Additional contact was maintained with all case study schemes by telephone and email throughout the duration of the evaluation.

The table below illustrates the range of case study schemes, including those with a focus on children; adolescents; adult schemes that mainly addressed the needs of cancer patients and adult schemes that specifically addressed the needs of patients with a condition other than cancer. The table also identifies the country location and sector of lead organisation. Light shading indicates voluntary sector schemes. Each scheme is described in some detail within a vignette, all of which are provided within Appendix 6.

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Table 2 Typology of case study schemes for in-depth evaluation Children’s schemes

Children’s schemes focusing on adolescents

Adult schemes Adult schemes focusing on conditions other than cancer

Rachel House hospice at home Scotland Voluntary sector (Vignette 4)

Naomi House children’s hospice EnglandVoluntary sector (Vignette 9)

St John of God hospice Northern IrelandVoluntary sector (Vignette 2)

Huntington’s Disease Northern IrelandStatutory sector (Vignette 1)

Nottingham Butterfly hospice at home and bereavementEnglandStatutory sector (Vignette 10)

Western Sussex hospice at home and bereavement

EnglandStatutory sector(Vignette 13)

Caring together, Making a difference Sunderland EnglandStatutory sector(Vignette 5)

Scottish Motor Neurone Disease(national scheme)

ScotlandVoluntary sector (Vignette 3)

Bradford COSI bereavement EnglandVoluntary sector (Vignette 11)

Somerset Coast hospice at home EnglandStatutory sector (Vignette 6)

Brent & Harrow children’s home based EnglandStatutory sector (Vignette 12)

South Worcestershire palliative care EnglandVoluntary sector(Vignette 7)

St Andrew’s children’s hospice EnglandVoluntary sector(Vignette 14)

Waltham Forest hospice at home EnglandStatutory sector(Vignette 8)

Stockport Dragonfly hospice at homeEnglandStatutory sector(Vignette 15)

Over the three-year duration of the evaluation, a total of 30 case study site visits were made. Case study interviews were carried out at a variety of locations including project headquarters (voluntary and statutory sector organisations), adult and children’s hospices and in people’s own homes.

In total 135 interviews were carried out with 139 people.

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(NB. Many of the interviews involved groups of participants (e.g. service users; district and community nurses) and many of the participants were interviewed on more than one occasion.)

Participants included:

service users (including adults, children and young people and their families)

caregivers service managers community nursing staff (e.g. district nurses) community palliative care nurses heath-care assistants palliative care social workers children’s specialist nursing staff play therapists acute sector nursing staff volunteers consultant community paediatricians GPs counsellors and therapists (including a dietician)

Interviews followed a flexible topic guide and were supported by:

documented observations data collected during the course of site visits e.g. newspaper

cuttings routine monitoring reports survey responses national stakeholder interviews

Detailed analysis of case study data was supported by ongoing interviews with key national stakeholders (24 in total); ongoing review of policy developments; analysis of documentation and review of routine monitoring data supplied by the BIG Lottery Fund and by the case studies themselves.

A list of national stakeholder participants is attached at Appendix 3.

Early on in the evaluation, BIG Lottery Fund commissioned an additional piece of work to provide a more complete picture of the children’s programme in England. This entailed a review of all 135 schemes’ monitoring data and a second visit to the Level 2 grant schemes that would only have been visited once and followed up by telephone in the original evaluation schedule.

1 5 1 1 Methodological reflections Gaining the agreement of case study schemes to participate in the evaluation required considerable sensitive negotiation. Services that had been in existence for many years (e.g. children’s hospices) needed to be clear about the difference between the standard monitoring process required by the funding body, the statutory inspection process and the national evaluation.

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Visits to all case study schemes required careful planning and negotiation in order to access key stakeholders and service beneficiaries. Second and subsequent visits allowed greater possibilities of meeting with adult patients and sick children and their families. In the main, access was arranged via a senior project worker and the evaluation team is extremely grateful for their help and support in setting up the various interviews and focus groups, and frequently accompanying the researcher to people’s homes (sometimes in remote locations).

Working within an environment where people (including children and young people) are dying, can be difficult, stressful and emotionally draining. It was an essential part of the planning of this evaluation that the field researcher had adequate time for preparation and reflection on site visits. Debriefing with team members took place after every site visit. There was also the provision of regular access to an independent professional supervisor, who, as a qualified psychotherapist is trained to listen to the concerns of the researcher and assist in minimising any emotional disturbances. Regular team meetings ensured mutual support and opportunities to feedback and update on the evaluation progress.

All interviews were recorded digitally, transcribed, checked and coded within a computer package (NUD*IST), which is designed for the management, storage and analysis of qualitative data. Observation of service delivery, particularly within hospices (both children’s and adults) and within people’s own homes provided a unique insight into service delivery and has been a genuine privilege. The commitment and sincerity of all the staff involved in these schemes was evident throughout.

In some cases, it was possible to meet with service users, including children and their carers, in order to discuss their views on the appropriateness of and satisfaction with new services. The evaluation team is extremely grateful to the project co-ordinators who arranged for these interviews to take place, including one that required a translator.

Case by case site visit notes were prepared following an initial content analysis of interviews and a review of all routine data collected during the course of site visits. These notes were used to develop emerging themes and were circulated to the principal investigators (YC and RPP) for comment and validation, before being sent back to the schemes for further validation. This process ensured reliability and provided the basis of follow up site visits and telephone interviews. Further in-depth analysis of interview data across the initiative, as opposed to case by case, was carried out for the interim and final reporting process.

1 5 2 Networking Access to and information about a number of grant schemes outside the case study sample was possible due to extensive networking throughout the evaluation. The evaluation team had previously recommended the value of networking across Lottery-funded ‘Living with Cancer’ schemes. Most of the

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Lottery-funded schemes for children across the United Kingdom were linked to the national umbrella organisations: Association of Children’s Hospices (ACH) and Association for Children with Life-threatening or Terminal Conditions and their Families (ACT). These charitable organisations set up a number of national events and conferences.

A course specifically for the Lottery-funded children’s schemes was designed and run by the University of the West of England for those schemes that chose to participate.

There have also been regional network meetings specifically for the Lottery-funded children’s schemes in England, usually facilitated by Strategic Health Authorities (SHAs). The lead researcher (JW) had access to quarterly meetings in the East Midlands region. Participants at these events confirmed the value of regular meetings as a support mechanism, in terms of regular contact with peers; exchanging information and discussing developments; sharing achievements and explaining how challenges were overcome.

More recently (2006), a series of regional workshops, ‘kick-off’ meetings, were instigated by the then Care Minister, (Liam Byrne, MP) to emphasise the importance of strategic planning at regional and local levels through the development of managed local networks.

The lead researcher also attended local and national conferences and other appropriate events. Information gathered from these events enhanced the evaluation, provided contact with schemes outside the case study sample and opportunities to validate emerging findings through presentations and seminars.

A number of grant schemes were linked into additional networks such as the National Forum for Hospice at Home and single condition organisations appear to have made contact across country boundaries. For example, the Northern Ireland Huntington’s Disease Association and a Lottery-funded scheme in Northern Ireland developed strong links with the Scottish Huntington’s Disease Association. These links provided a valuable support mechanism for the (voluntary sector) organisations and for personnel working within the schemes.

1 5 3 End of grant life survey to all schemes A survey was developed, adapted from an earlier questionnaire that was used by the same evaluation team in the BIG Lottery-funded ‘Living with Cancer’ evaluation and was sent to all 272 palliative care schemes as they approached the end of their grant funding.

The survey analysis is provided within this report and offers a more complete picture of the evaluation overall, providing information on:

partnership working scheme beneficiaries referral patterns

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organisational change continuation funding sustainability plans.

Schemes received an initial mail out with up to two further mailings and telephone follow-up for non-responders.

Data from the returned questionnaires were input into SPSS (Statistical Package for Social Science) and subjected to bi-variate statistical analysis.

1 5 4 Systematic literature review As a complementary exercise to the evaluation, the University of Warwick Research Development Fund awarded a small grant to support the preparation of a qualitative systematic literature review on a theme related to the BIG Lottery Fund palliative care initiative objectives. An article reviewing the literature on the knowledge and information needs of informal caregivers in end of life settings has recently been submitted to an academic journal (Docherty et al, 2007, submission). This study has helped to inform our evaluation and enabled us to understand the wider significance of its outcomes. Reviews of other literature have been included in our interim reports (2004, 2005 and 2006).

1 5 5 Geographical analysis An important component of our evaluation was to undertake a geographical analysis of funded projects, exploring the relationships between spatial patterns of service provision and key indicators of need.

There were two stages to this analysis. The first, national scale investigation (discussed in detail in our first annual report, 2004) showed how the highest concentration of adult projects and a large proportion of children’s projects were in areas where deprivation and deaths from cancer were highest.

The second stage of the geographical analysis explored the socio-economic conditions in the areas covered by the 15 case study sites. A key concern was to investigate whether the broad trends observed at the larger (national) scale study were also present at the more local scale. This was achieved by carrying out an ecological study using data aggregated to electoral wards and employing geo-demographic profiling techniques supported by Geographic Information Systems (GIS).

A map illustrating the location of all 15 case study schemes is provided below.

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Map 1: Location of the 15 Palliative Care case study sites across the UK

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Maps were also produced to show how the schemes related to the geography of socio-economic deprivation, standardised mortality rates for all deaths and cancer deaths, and ethnic breakdown for the country as a whole. Each of the schemes was then explored. The analysis included an investigation of population density, deprivation, standardised mortality rates for both cancer and all deaths, deaths per 1000 population, and the ethnic breakdown of each area. In each case the data were shown aggregated to electoral wards, and statistically compared to the country as a whole and the UK.

The following key trends were observed:

Most of the case study schemes were located in relatively deprived areas of the UK.

Many schemes were in urban areas, with relatively high population densities

The percentage of the local population who were from black and minority ethnic backgrounds varied widely per case study scheme. Those schemes in Northern Ireland and Scotland served fewer populations from the black and minority ethnic groups.

The death rate varied considerably between the 15 case study sites, ranging from 7.05 deaths per 1000 to 15.75.

There was also variation in the standardised mortality rates (all deaths), although for the vast majority of sites the rates were above the UK average.

In 9 out of the 15 case study sites, the standardised mortality rates for cancer deaths were also higher than the UK average.

The detailed findings from this element of the study can be found on a CD-Rom, which is available from BIG Lottery Fund.

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2 Developing policy

This section provides a summary of policy developments in Northern Ireland, Scotland and England. Information has been drawn from policy documents, web-based searches and national stakeholder interviews.

2 1 Northern Ireland Northern Ireland is undergoing a review of public administration that is “ the most fundamental change to the health and social service system for decades.” (Review of Public Administration, Northern Ireland, 2006) The review is recommending the demise of the existing structures, which currently consists of four (regional) Health and Social Services Boards (HSSBs), in favour of one Health and Social Services Authority, charged with promoting the health and well-being of the community; implementing the government’s policies for health and social services and managing the overall performance of the system. The new organisation will come into being on April 1st 2008. The impact of the new structures on the continued sustainability and mainstreaming of the Lottery-funded schemes located within the existing HSSBs remains uncertain.

A new Chief Medical Officer has been appointed for Northern Ireland, Dr Michael McBride sees the RPA as an “opportunity to drive forward further improvements in health service frameworks and quality standards.” (Lundy, 2007)

The Northern Ireland Assembly had been in suspension throughout the initiative, but following elections in March 2007, the Assembly was restored under a power sharing arrangement on 8 th May 2007, with full legislative and executive authority.

Northern Ireland has a population of approximately 1.7 million.

2 1 1 Northern Ireland palliative care programme The table below sets out details of the palliative care programme in Northern Ireland. Here the programme focussed to a great extent on conditions other than cancer and a relatively high proportion (40%) of the projects were located within the voluntary sector.

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Table 3 Overview of grant schemes across Northern Ireland

Health and Social Services Board

Total schemes within the umbrella

Schemes led by statutory organisation

Schemes led by non-statutory organisation

Schemes completed

Schemes sustained/ mainstreamed.

Eastern 11 7 4 9 9Western 4 3 1 3Northern 5 3 2 5Southern 5 2 3 5Totals 25 15 10 22

Three schemes were suspended or revoked: two in the Eastern Board area and one in the Western Board area, leaving 22 schemes to complete.

Each of the HSSBs appointed a programme manager, with responsibility for delivering the Umbrella Grant Scheme (UGS) on time and within budget. We were able to collect detailed information on schemes by telephone when following up survey non-responders, however, we do not have this level of detail for the programmes in each of the other countries.

Contact with the Eastern Health and Social Services Board (EHSSB) programme manager enabled the evaluation team to build up a more complete picture of the programme within this area through direct communication and an external evaluation report. EHSSB commissioned Deloitte MCS Limited to undertake an evaluation of the Big Lottery-funded UGS, including coronary heart disease and stroke and palliative care. The report, published in 2006, found that senior personnel were appropriately involved in steering the aims and objectives of the programme. The analysis of treatment services (including Huntington’s disease, see Appendix 6, Vignette 1) found that they were providing additional services that were improving the quality of life for groups of individuals suffering from particular conditions. (Deloitte MCS, 2006)

Some of the grant schemes were slow in drawing down money and there were some time-scale slippages. This has resulted in many of the schemes continuing until well beyond the life-time of this evaluation. Two schemes were selected for in-depth case study evaluation: one statutory sector led project at Level 1, within the Eastern Health and Social Services Board (Huntington’s Disease project, see Appendix 6, Vignette1) and the other, a voluntary sector led project at Level 2, within the Southern Health and Social Services Board (see Appendix 6, Vignette 2.) An overview of all grant schemes is attached at Appendix 1.

The palliative care initiative fitted well within strategic developments in Northern Ireland, following on from the Campbell Report, (DHSSPS, 1996) which focused on cancer, and Partnerships in Caring, (DHSSPS, 2000) which further developed the approach to palliative care. A national stakeholder

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commented that in order to progress these developments, “a greater degree of co-ordination” between providers in the voluntary and statutory sectors would be needed, to enable services to ‘join-up.’

One of the key successes of the palliative care initiative in Northern Ireland was evidence that:

“We can work across sectors and make a difference and just really strengthen everything that’s happening,” (National stakeholder)

The initiative increased networking opportunities across sectors, and was timely, as:

“There were aspirations for a number of things, but we would never have been able to make the progress that we have or demonstrate the needs [without the Lottery grants].” (National stakeholder)

In addition, the programme was seen as providing:

“Opportunities for specialist staff to try new roles and new developments … [and] new management skills.” (National Stakeholder)

The Gold Standards Framework (GSF) (Thomas 2003a, 2003b) and the Liverpool Care Pathway (LCP) (Ellershaw, 2001; Ellershaw, 2002; Ellershaw and Ward, 2003; Ellershaw and Wilkinson, 2003) have been rolled-out, although Northern Ireland is not currently participating in the Preferred Place of Care initiative.

A revised cancer control plan has been published, strengthening issues around palliative care, to enable more people to die at home and recognising the need for a workforce plan around specialist palliative care. (DHSSPS, 2006) In October 2005 Professor David Clark was appointed as Visiting Professor of Hospice Studies at Trinity College Dublin and University College Dublin and he is currently working towards the establishment of an Ireland-wide Institute for palliative care.

2 2 ScotlandThere have not been any major policy developments in Scotland since our 2004 interim report. However, with a change of administration at the Scottish Parliament in May 2007, there is a possibility that health services and within that, palliative care services, may come under future review.

We have however, provided a brief overview of developments in palliative care. The Scottish Health Plan (Scottish Executive Health Department, 2000) and The Scottish Cancer Plan (Scottish Executive Health Department, 2001) committed the country to developing a managed clinical network approach to palliative care; three regional cancer networks were subsequently developed, covering the South East, West and North of Scotland. (Macmillan Cancer Relief, 2003)

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The Clinical Standards Board for Scotland published their own Clinical Standards for Specialist Palliative Care in 2002 covering: access to specialist palliative care services; key elements of specialist palliative care; managing people and resources; professional education; inter-professional communication; communication with patients and carers; therapeutic interventions; and patient activity. These standards were devised to assess service performance across a range of settings from hospices and hospitals, to the home and are being implemented by the NHS boards.

NHS Quality Improvement Scotland published a national overview of Specialist Palliative care in 2004, (NHS Quality Improvement Scotland, 2004). While noting the general high quality of services, in relation to the provision of palliative home care, this study highlighted deficiencies in the availability of 24-hour services and a shortage of trained personnel in specialist palliative care (especially nurses).

The Scottish Partnership for Palliative Care (SPPC) works very closely with the Scottish Executive. SPPC received one of the 4 national Lottery grants within the current palliative care initiative:

to increase access to palliative care support and services for people with life-threatening conditions other than cancer

to promote the integration of palliative care principles in the care of people with a range of progressive life-threatening conditions.

Amongst its findings, the Lottery-funded project report highlighted the needs of young people who were making the transition between children’s and adult services, the report also suggested that the flow of communication between health and social care professionals needed to be strengthened. In conclusion, the SPPC project reported “that access to palliative care should be available on an equitable basis to everyone diagnosed with a progressive life-threatening condition” and that importantly, “policy developments and healthcare initiatives have continued to evolve in general acceptance of this stance.” (SPPC, 2006.)

The Marie Curie Delivering Choices programme (see below) is being piloted in Tayside.

2 2 1 Scotland palliative care programmeFour national schemes focused on conditions other than cancer. 55 umbrella grant schemes addressed a range of palliative care issues. The table below sets out details of the palliative care programme in Scotland.

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Table 4 Overview of grant schemes across Scotland

Health Board Total no of schemes

Schemes led by statutory organisations

Schemes led by non-statutory organisations

Local / non-local schemes

Argyll and Clyde

5 2 3 Non-local

Ayrshire and Arran

2 1 1 Non-local

Borders 2 2 Local

Dumfries and Galloway

6 3 3 Local

Fife 4 2 2 Non-local

Forth Valley 8 1 7 Non-local

Grampian 6 2 4 Local

Greater Glasgow

2 2

Highlands 2 1 1 Local

Lanarkshire 4 4

Lothian 4 1 3 Local

Orkney 1 1 Non-local

Shetland 1 1 Non-local

Tayside 5 4 1 Non-local

Western Isles 3 3 Non-local

Direct grants 4 4 National

Totals 59 21 38 19 local 29 non-local 4 national

Two grant schemes were selected for in-depth evaluation, one national voluntary sector scheme at Level 1 (See Appendix 6, Vignette 3) and one voluntary sector children’s hospice at home scheme at Level 2 (see Appendix 6, Vignette 4). An overview of all grant schemes is attached at Appendix 1.

Although a national stakeholder was identified at the outset, we were unable to identify a national stakeholder with a current overview of palliative care development.

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2 3 England, palliative care for adultsOur third evaluation interim report to the BIG Lottery Fund, (www.biglotteryfund.org.uk/er_eval_palliative_report_yr3.pdf) provided details of a number of developments, such as the End of Life Care programme (DH, March 2006) and Delivering Care, Marie Curie’s flagship initiative. (www.deliveringchoiceprogramme.org.uk)

Initiatives to enhance the role of palliative care and enable patients to die in their place of choice for adults with cancer and conditions other than cancer are all ongoing at this time. These include: The Gold Standards Framework (GSF), the Liverpool Care Pathway (LCP) and the Preferred Place of Care (PPC).

The Gold Standards Framework (Thomas, 2003) provides guidance for primary health care professionals in order for them: “to provide the best possible care when people are likely to be in the last six to nine months of life. It was started to help GPs plan care for these patients and to make sure that information about their likely needs was shared with others involved in their care. This helps with managing symptoms and by giving the patient and their family confidence in their care, especially by planning ahead for what might happen”. (DH, 2006) www.goldstandardsframework.nhs.uk

The Liverpool Care Pathway (Ellershaw, 2003) was developed to: “take the best of hospice care into hospitals and other settings. It is used to care for patients in the last days or hours of life once it is known that they are dying. The LCP involves prompting good communication with the patient and family, anticipatory planning including psychosocial and spiritual needs, symptom control (pain, agitation and respiratory tract secretions) and care after death. The LCP has accompanying symptom control guidelines and information leaflets for relatives.” (DH, 2006)www.lcp.mariecurie.org

The Preferred Place of Care tool (PPC) is an example of an advance care plan (ACP) and is “a document that the patients hold for themselves and take with them if they receive care in different places. It has space for the patients’ thoughts about their care and the choices they would like to make, including saying where they would want to be when they die. Information about the family can also be recorded so that any new care staff can read about who’s who and what matters to them. If anything changes, this can be written in the plan so it stays up to date”. (DH, 2006) www.cancerlancashire.org.uk/ppc

The GSF is attracting international interest. It “is now firmly embedded within primary care and has raised the profile of palliative care both professionally and politically.” (Munday and Dale, 2007) Work is also being carried out to examine how palliative care is delivered in care homes. Help the Hospices are

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developing their focus on ethnicity, disability, poverty and social exclusion. Help the Hospices programme of Care Beyond Cancer grants is due to publish an evaluation in 2007.

Following the recent cabinet reshuffle, Ivan Lewis MP is now Parliamentary Under Secretary of State with a brief that includes End of Life Care. Ann Keen MP is Parliamentary Under Secretary of State with responsibility for cancer and chronic diseases and long-term conditions, including neurological conditions.

2 3 1 Cancer services in EnglandEarlier this year, Professor Mike Richards, the National Cancer Director, announced the development of a Cancer Reform Strategy to build on the achievements of the NHS Cancer Plan. (2000) The Strategy aims to save lives, improve patients’ experience of care; reduce inequalities and build for the future through education and research. Six new working groups have been set up and will report to an advisory board of experts, led by Professor Richards. The aim is to publish this Strategy by the end of the 2007. The working groups are as follows:

Service models Commissioning and levers for change Costs, benefits and value for money Clinical outcomes data collection Public awareness and early detection Patient experience

The development of this Strategy involves both the statutory and voluntary sectors; health professionals; civil servants; researchers; industry personnel and patients. Contributions to the Cancer Reform Strategy can be made by emailing: crs@dh.gsi/gov.uk

2 3 2 End of Life Care StrategyProfessor Richards is also leading on the development of an end of life care strategy, which will be designed to increase choice to all patients regardless of their condition, about where they live and die, and provide them with the support to make this possible. (DH, Gateway Ref 7775.) Working groups have been set up and have been meeting to produce the strategy, which is due to report to Ministers by the end of 2007. The working groups are as follows:

Care pathways and service models Commissioning and levers for change Analysis and modelling Care homes Measurement of quality and outcomes Workforce development.

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The strategy will pull together successful elements of initiatives that have already been tried and tested, such as the Gold Standards Framework and Liverpool Care Pathway.

2 3 3 England adult palliative care programmeThe table below sets out details of the adult palliative care programme in England. Fifty-six adult schemes were funded as part of the BIG Lottery initiative.

Table 5 Overview of adult grant schemes across England

Schemes led by statutory organisation

Schemes led by non-statutory organisation

Local / non-local schemes

Total

44 (79%) 12 (21%) All local 56

Four projects (representing 5 grant schemes) were selected for in-depth case study evaluation including: 1 statutory-sector scheme at Level 1 and 3 (2 statutory-sector led and 1 voluntary-sector led) at Level 2. Vignettes providing details of these grant schemes can be found at Appendix 6 (Vignettes 5,6,7 and 8.) An overview of all grant schemes is attached at Appendix 1.

2 4 England palliative care for childrenBy contrast to this year’s policy developments for adults, there has been considerable movement in the children and young people’s palliative care world.

2 4 1 Voluntary sector funding

At the end of May 2006, the Secretary of State for Health pledged £27 million over the next three years, to support children’s hospice services within the voluntary sector “whilst they develop a long-term statutory funding strategy” (DH guidance notes for grant application, 2006) The funding effectively replaced BIG Lottery grants that had run their term, and were designed to allow those children and young people not expected to live into adulthood to access hospices or hospice at home services provided by the voluntary sector.

Grants were allocated via Department of Health, ‘Section 64’ funding,

“Funding will be distributed by grants made under section 64 of the Health Services and Public Health Act 1968. The Secretary of State for Health, through the Section 64 General Scheme of Grants (S64 of the Health Services and Public Health Act 1968), has power to make grants to voluntary organisations in England whose activities support the Department of Health’s policy priorities. Organisations must meet the criteria set out under Section 64 of the Health Services and Public

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Health Act 1968 to be eligible to receive a grant under the Section 64 Scheme.”

(Guidance notes for grant application, DH, 2006)

Arrangements for the subsequent years of funding remain under review, as per the 13th March 07 Parliamentary Question below:

Bob Spink: To ask the Secretary of State for Health when her Department expects to give guidance to the Association of Children’s Hospices on the distribution of (a) year two and (b) year three funding of the monies allocated to children’s hospices to replace the loss of Lottery funding; and if she will make a statement. [119140]

Mr. Ivan Lewis (Care Services Minister): We are currently reviewing the process used for the hospice service grants in 2006-07 and are collecting information on the hospice service schemes supported this year. We will be discussing with the Association of Children’s Hospices and other key stakeholders any revisions necessary to the process for 2007-08 and 2008-09.

The May 06 funding announcement also indicated that a review of children’s hospice funding arrangements would be undertaken. The (then) Secretary of State for Health, Patricia Hewitt MP, asked that the review should encompass children’s palliative care services more generally.

2 4 2 Independent review of children’s palliative careThe independent review of the long-term sustainability of children’s palliative care services commenced in autumn 2006 under the auspices of the Department of Health and led by Professor Sir Alan Craft and Sue Killen, alongside an economic evaluation conducted by Dr Karin Lowson at the University of York. The review was designed to focus on the following:

How hospice services and palliative care services for children and young people in both the voluntary and statutory sector can work collaboratively to ensure young people and their families have access to integrated services focused on their individual needs;

Current funding arrangements for services provided to children and young people who have life limiting conditions (LLCs) and require palliative care. What are the current sources of finance, how sustainable are they, and to what extent does the availability of funding lead to variations in service provision?

Mapping which services are available to which children and young people, the extent to which this varies across England and the drivers behind this;

Reviewing the accessibility of services and how they respond to local need;

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Examples of good practice that we can build on, and areas where things are not working so well that we can learn from them;

Any barriers to change and levers we can use to improve delivery.

(CYPPC review, DH, 2006)

The review was published on May 17th 2007 and is available at: http://www.dh.gov.uk/en/Publicationsandstatistics/Publications/PublicationsPolicyAndGuidance/DH_074459

Findings from the review largely support those within this evaluation and it is recommended that anyone with a specific interest in palliative care services for children and young people should read the document alongside this evaluation report.

The key findings from the Independent Review are as follows:

Children and young people’s palliative care is not well understood and is often confused with end of life care

There is considerable overlap between children and young people with palliative care needs and those with disabilities and complex needs

There is little evidence of effective joint planning, commissioning and delivery between health, education and social care

There is a lack of information on the numbers of children and young people with palliative care needs, their location and future trends

The development of regional Paediatric Palliative Care Networks has been patchy and often unsupported

Existing resources are not being used effectively, with little evidence of sharing of good practice and insufficient engagement of the voluntary sector within strategic planning and commissioning

Families wanted more community services, offering help and advice 24 hours per day, 7 days a week, including end of life care

There is a lack of transition services to manage the transfer between children and young people’s services and adult services

Short term funding (e.g. BIG Lottery funding), whilst prompting innovation, did not necessarily lead to long term sustainability

(Department of Health, 2007)

Key recommendations from the review included:

Services for children and young people with palliative care needs should be planned together with those of children with disabilities and complex needs

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Planning and commissioning should be improved and should include greater involvement with the voluntary sector

Services should be planned and commissioned across total populations of 1 million

Improved data collection is required, including national data on prevalence and trends

The umbrella organisations ACH and ACT should work more closely together and be given a stronger national voice.

(Department of Health, 2007)

In support of the Independent Review, the University of York health economics consortium was asked to conduct an investigation of the costs and benefits of a range of methods of delivering care to children and young people with palliative care needs, alongside an investigation of current funding mechanisms and sustainability of funding. The review examined comparative costs and suggests that:

“...by increasing the number of children dying at home to at least the percentage of the best performing SHA (25%) would release £860,000 to £1.14 million for community services for the children and families.” (York Health Economics Consortium, 2007)

The investigation concluded that providing palliative care services in the community could be cost effective, as opposed to expensive hospital admissions:

“We can say with certainty that the majority, if not all of the costs of a community palliative care team, can be met by refocusing elements of the management of children requiring palliative care.”

(York Health Economics Consortium, 2007)

2 4 3 Development of a National Framework for children’s palliative care The (then) Care Services Minister, Ivan Lewis, MP (now Parliamentary Under Secretary of State with a brief that includes End of Life Care) provided an immediate response to the publication of the review (DH, 2007), saying that a National Framework should be developed for children and young people’s palliative care. Work on developing a framework is being taken forward by a team at the Department of Health and a palliative care strategy steering group, made up of key stakeholders from children’s statutory and voluntary sector organisations.

The National Strategy is due to be launched in January 2008. There are four work streams providing input to the Strategy including:

Understanding (to include definitions and terminology) Shaping services (to include early intervention, needs

assessment and transition)

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Shaping the system (to include relationships between the statutory and voluntary sectors)

Having an impact (to include networks, champions, accountability and workforce.)

Key individuals are leading on each of the work streams and are reporting back to the Department of Health at regular intervals to co-ordinate efforts. Once published, implementation of the National Strategy will be monitored.

The Minister also indicated that the review of children’s palliative care should not be seen in isolation, but should be examined alongside the Every Disabled Child Matters (EDCM) review, published on May 21st 2007. This is being taken forward within the strategy development.

The EDCM report from the Treasury and Department for Education and Skills, Aiming high for disabled children, better support for families, (HM Treasury and DfES, 2007), was published just four days after the Independent Review on palliative care for children and young people, (DH, 2007) and was underpinned by £340 million investment over the Comprehensive Spending Review (CSR) period. This report highlighted three priority action areas to improve outcomes for disabled children (including those with palliative care needs), as follows:

Access and empowerment Responsive services and timely support Improving quality and capacity.

Within these priorities, a number of developments are likely to benefit children and young people with palliative care needs. These include:

A transition support programme (supported by £19 million) A national disabled children indicator Evaluation and benchmarking of good practice (as part of the

Centre for Excellence for children and family services) Improved data collection at Local Authority (LA) and Primary

Care Trust (PCT) levels Short breaks (respite) for disabled children (supported by £280

million) (HM Treasury and DfES, 2007)

2 4 4 England children’s palliative care programme The BIG Lottery programme for children’s services in England comprised 3 distinct strands: hospice, home-based and bereavement, as set out in the table below.

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Table 6 Overview of children’s grant schemes across England

Strand Statutory sector (%)

Voluntary sector (%)

Local / non-local

Totals

Children’s Hospice

25 (100%) 17 local8 non-local

25

Children’s Home Based

66 (93%) 5 (7%) 66 local5 non-local

71

Children’s bereavement

21 (54%) 18 (46%) 35 local4 non local

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7 children’s schemes were selected for in-depth evaluation, 2 at Level one (1 statutory-sector and 1 voluntary-sector led) and 5 at Level 2 (2 voluntary sector and 3 statutory-sector led). Vignettes providing details of these grant schemes can be found at Appendix 6 (Vignettes 9; 10; 11; 12; 13; 14 and 15.) An overview of all grant schemes is attached at Appendix 1.

2 5 Key points

Northern Ireland is undergoing a review of Public Administration. The Northern Ireland Assembly has been restored.

The Scottish Partnership for Palliative Care has increased access to palliative care support and services for people with life-threatening conditions other than cancer and promoted the integration of palliative care principles in the care of people with a range of progressive life-threatening conditions.

The National Cancer Director for England is leading on a Cancer Reform Strategy and an End of Life Care Strategy, both due for publication later this year.

An Independent Review of Children's Palliative Care has been published and a National Strategy for children’s palliative care is being developed for publication early in 2008.

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Section 2 Findings

3 What worked?

“We're actually going into their environment and they're in control, and I think that for families with a child with a life threatening condition, that's really important.” (Lead nurse, statutory-sector children’s home-based service.

“When you’ve looked after a patient for three or four days and they’ve died on your shift, you’ve done the last rites, you’ve supported them and you come away sometimes with a huge sense of achievement and job satisfaction and you feel good. Fair enough the patient has died, but you come away and you think, I did a good job there and I’ve eased it as much as I could possibly ease it for them, I’ve organised the vicar, I’ve organised the funeral director and I’ve found it a really nice job to do the majority of the time.” (Hospice at home nurse, statutory sector led hospice at home scheme.)

“It was brilliant… when they were there at the night, I could sleep…I would have been exhausted [without them]. I wanted her [Mum] there [at home].” (Daughter and carer whose mother died with support from a hospice at home team.)

To a large extent, Lottery funding provided the opportunity to set up and develop new services that could fill gaps in service provision and enhance existing services, mainly in the community. We have reported previously (see interim reports at www.biglotteryfund.org.uk) on the problems that some schemes faced in recruiting staff to new posts (particularly within the children’s schemes) and difficulties in getting services and staff known and trusted, so that agencies and individuals would refer patients and families to the new services. Not withstanding these difficulties, a range of innovative service models was successfully developed across the Lottery-funded programmes. Here we describe in detail the range of services within the case study sample; what made them successful and what the challenges were, including sections on staffing, referrals and partnerships.

The three interview extracts above are included for two reasons. Firstly, to illustrate the difference that schemes made to the lives of families and secondly, to bring into sharp contrast the difference between children’s and adult schemes. Children’s schemes were largely concerned with enabling children with life-limiting or life-threatening conditions to develop as whole individuals during the course of their short lives and for their families to experience some ‘normal’ times in their totally abnormal situations. Adult schemes on the other hand, were largely designed to make the dying process more comfortable and dignified for the patient and their carers. In both cases, but particularly for the children’s schemes, services extended beyond clinical care into social functioning, psychological and social support – in other words,

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adopting the holistic approach that was developed within the hospice movement some forty years ago. Almost all of the schemes maintained contact with families, often for an extended period, beyond the point of death.

As we have stated in previous interim reports, in a variety of ways, schemes pushed back the boundaries of palliative care by:

Extending the age range catered for, from children to adolescents, and young adults

Broadening the focus of care, from the individual to the family Shifting the locus of care, from the hospice (or other institutional

setting) to the home Shifting the vehicle of care delivery, from the single agency, to

multi-agency (or even multi-sector) working Expanding the range of conditions from cancers to other life

limiting conditions Shifting the clinical interface from acute care to chronic illness

care From partnership with secondary (or even tertiary) services to

primary and community services

The following sections illustrate these achievements and wherever possible, we have included direct quotations from the original interview transcripts, so that project staff and service beneficiaries can speak for themselves. We have also provided brief extracts from the vignettes (which have been approved by the schemes) to reinforce and illuminate the points made.

We distributed a survey to all 272 Lottery-funded grant schemes across the United Kingdom as they approached the end of their Lottery funding. We anticipated that end dates would vary across and within country programmes and therefore sent the survey out on a rolling basis. Dispatch commenced in April 2006, as the first schemes reached the end of their funding, with the final dispatch in April 07. Non-responders were followed up with up to two reminders, after which further attempts were made to contact project leads by telephone and email.

We relied upon contact information supplied by BIG Lottery Fund, from the original grant applications that formed the basis of our database of all schemes and from formal and informal contact with grant schemes.

NHS reconfiguration across England has led to mergers of Primary Care Trusts (PCTs) and a change of role for many personnel within those organisations. This frequently impacted on our ability to contact the lead person for a number of schemes.

BIG Lottery Fund’s Operations Division (for England) was also reconfigured and moved from the central London base to two regional centres during 2006-2007. The palliative care operations team for England was re-located from London to Birmingham in May 2007, resulting in a cut off for the exchange of data.

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The overall response rate to our survey was 64% and the response distribution by programme is detailed in the table below. 272 schemes were ‘live’ at the time of the distribution of the survey, three schemes in Northern Ireland had been revoked and the finances re-distributed.

Table 7 Survey Response (%) by country and programme

Country Responses ( %)England (adult) 37 (66%)England (children’s) 85 (63%)Scotland 33 (56%)N Ireland 18 (82%)UK Total 173 (64%)

3 1 National stakeholder viewsA number of national stakeholders were interviewed, at the outset and towards the conclusion of the national evaluation. A list of these individuals is attached at Appendix 3.

National stakeholders were in agreement that the BIG Lottery palliative care initiative served to raise awareness of many issues around death and dying, alongside policy and other developments in this area:

"I've never seen the plethora of activity in relation to policy change….that goes for both adults and children's....the move for palliative care beyond cancer, the end of life strategy is a big driver and the recent review of children's palliative care...captured the issues." (National stakeholder)

Prior to the initiative, it had been perceived that:

“Palliative care was very much focused on cancer…. and it was also very much focused on the specialist palliative care end of the spectrum and much less looking at how we could skill up non-specialists to provide care at the end of life… we really ought to be looking for something nearer to 75% non-cancer…..” (National stakeholder)

The initiative allowed projects to extend palliative care to conditions other than cancer and to move away from traditional hospital / hospice settings, to provide services in or closer to home:

“…move beyond the traditional model of cancer, looking at the different needs in different settings.” (National stakeholder)

Although some schemes focused specifically on conditions other than cancer, those that did not have a specific disease focus, but attempted to increase the levels of referrals for people with non-malignant conditions, such as heart

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failure, Chronic Obstructive Pulmonary Disease (COPD) as well as neurological conditions, often found this more problematic than first anticipated. These challenges will be discussed below (Chapter 4, sections 4 5 and 4 6.) The issue of ‘who’ provided the services is discussed below (Chapter 3, sections 4 and 5.)

There were divergent viewpoints among professionals and also between them and the general public about the appropriateness of various terms.

“I don’t think it’s a terribly helpful term and awful lot of people haven’t got a clue what palliative care is, if we’re talking to the public, and partly this is not just talking about professionals, but if we’re trying to explain to people what we’re talking about, I find the end of life care an easier term.” (National Stakeholder)

This suggestion was borne out by our analysis of case study interviews:

"You can't say to somebody, we want to put you into this palliative care [scheme]..because ..a lot of the time ..people don't know they are actually terminally ill.” (Service provider)

"There's an ethical issue about saying to somebody...we're going to refer you for palliative care, if they haven't been told that they've got a terminal condition." (Service provider)

"People don't know what palliative [means], people don't understand" (Service provider)

"I think the issue is that people confuse the word ‘palliative’ for ‘terminal’." (Service provider)

"We have a little boy at the moment who's been really poorly, whose family are still not really in the place that they can think about ‘palliative care’." (Lead nurse, children's hospice at home scheme)

“Heart failure nurses had a distorted or misperception of what palliative care means, and what's involved." (Service provider)

“Our local Care of the Elderly consultant will often say to his patients “You’ve got heart failure,” and they’ll say “Oh, thanks doctor, I thought you were going to tell us it was something serious, like cancer.” Because…you say cancer to somebody and people automatically think of death and dying, but with heart failure…people don’t understand the implications of it.” (Specialist palliative care nurse.)

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The role of hospices was also often misunderstood amongst the general public and indeed, some health and social care professionals who believed that the role of hospice was to facilitate death rather than providing respite and support to patients and carers.

“And the concept of hospice just doesn't sit easily and neatly with a lot of people.” (Service provider)

Perhaps more importantly, for families who might benefit from hospice services, a misunderstanding about the nature of hospice and the services available could mean that they did not achieve the maximum benefit.

"I think when you're told your child is going to pass away [at the point of a terminal diagnosis], it's hard to accept that and then accept taking the child to a hospice, because, you think well, if you take your child to a hospice, that's the end, but it's not like that." (Bereaved mother, whose child and family had benefited from both hospice and hospice at home services.)

"Some families won't come here [children’s hospice] because they know a hospice is about dying and they can't emotionally accept that." (Children’s hospice support worker)

The term ‘hospice at home’ could also be problematic

"...the world has moved on...the hospice at home type of model is probably a good one, but only if it works across both health and social care...and only if everyone buys into it....the problem we have with hospice at home is, we haven't got a common definition....we're not actually able to do a service specification for them, because they're all so different across the country. " (National stakeholder)

"I'm not sure that we were ready to face that X [child] was so ill ... and being introduced to hospice at home ... I think psychologically that you start down that road of 'my goodness, what's going to happen and what's the longer term?... but it was the right time whenever we heard about it...” (Mother of life-limited child receiving regular respite at home.)

There was general agreement that partnership working, particularly between voluntary and statutory sector providers improved over the course of the initiative. However, issues around the independence and funding of the voluntary sector providers, including full cost recovery for adult hospices remained an issue for further debate and consideration. In addition, health and social care partnerships were welcomed, but concerns were raised about the sustainability of some of these arrangements under the new payment by results regime proposed in England.

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Throughout the initiative, there remained a shortage of palliative care consultants, certainly across England and specifically in rural areas (e.g. Lincolnshire), which, stakeholders suggested, to some extent may have hampered the development of specialised palliative care training and support.

Whilst it was acknowledged that new and enhanced services had led to increased choice, particularly in terms of delivering services in the home, national stakeholders recognised that a great many patients were still not dying in the place of their choice.

Some national stakeholders expressed concerns about the problems of short-term funding and issues around the sustainability and mainstreaming of services, where they had proved to be effective, faced with reconfiguration of health organisations in England and more broadly, the current NHS financial climate.

3 2 Service innovationsMany of the Lottery-funded services were innovative, often because there had been no service previously. The BIG Lottery palliative care programmes funded service development that met previously unmet needs.

“It has been able to provide a unique service that's just not really been there before… and something that's been so needed in the past and ignored really, and I just think that being able to provide a service at home is just so helpful." (Lead nurse, statutory sector children’s hospice at home service)

As this service provider suggested, services did not necessarily need to be complex in design:

"A lot of what… people ask for, it’s not complicated, it’s not rocket science. People often want very simple things." (Children’s service manager)

Many of these ‘simple things’ are described in more detail throughout this report.

Innovations included specialist services for people with conditions other than cancer:

Lottery funding created a specialist service, which provided both outreach to those affected by Huntington’s Disease and training and support to health and social care professionals who were likely to come into contact with affected families (within one Health and Social Services Board area of Northern Ireland). (See Appendix 6, Vignette 1 for further details)

This scheme was deemed to be a huge success by the voluntary sector partner, the Huntington’s Disease Association (HDA). It provided an opportunity for Huntington’s Disease to be included in strategic developments

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at Health and Social Services Board level; for training to be offered to health and social care professionals and perhaps most importantly, it provided a specialist home-based service. This involved home visits by a specialist nurse for families affected by this condition. Visits were designed to make life a little more comfortable for the families, often just by being there and listening. The carer quoted below had spent years caring for members of her family including her husband, sons and daughter, all of whom were affected by Huntington’s Disease. She reported that previously she had had nowhere to turn. She demonstrated the importance of having contact with someone with a specific interest in the condition and the difference that the new role had made:

“If it weren’t for X [name of nurse] … we’d have nowhere to go love. We’d have nowhere to look. We say we’re forgotten people.” (Long-suffering carer.)

The next scheme focused on Motor Neurone Disease and represented a voluntary sector organisation that developed an additional service that had been highlighted by service users and charity subscribers as a ‘missing element,’ amongst a range of services already in existence.

Lottery funding enabled the development of a new service, which filled a previously unmet need, for people with or affected by Motor Neurone Disease across Scotland, recruiting more than 20 volunteers in total, to provide a (mostly telephone) counselling service. (See Appendix 6, Vignette 3 for further details.)

The scheme offered a counselling service, largely provided by trained volunteers. It was reported that counsellors were mostly called upon to address ‘anticipatory grief,’ for those affected by Motor Neurone Disease, which could be the patients’ themselves, or more often, family members.

Other schemes provided services in or closer to home, for people with cancer, as well as those with conditions other than cancer. The availability of Lottery funding provided an opportunity for a partnership between statutory and voluntary sector providers (Caring Together) to extend services to those with cancer and non-malignant diseases and to develop additional services where gaps existed. Services included: extended out of hours nursing service; a specialist palliative care practice development nurse; home-chemotherapy and supportive treatments; extended social care provision; counselling; complementary therapies; volunteer befriending and sitting service; financial and welfare advice and a programme of further learning opportunities for health and social care professionals. (See Appendix 6, Vignette 5 for further details.)

The Caring Together scheme was deemed a success by the many partner agencies involved and the recipients of the varied services on offer. The service offered chemotherapy at home to certain (cancer) patients who met

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specific criteria, which often made life much easier for them and their carers and helped staff to better understand their home circumstances, often referring them to other aspects of the service:

“The things that you find out about patients that you didn’t know… when we first started [providing chemotherapy at home], some of the patients we’d known them for months and months and you went out to the home and ..one of the gentleman, his wife was disabled and he just never told us. She’d never turned up for treatment with him and you ask, “Is your wife in good health?” and it’s part of the assessment at the start, but he never told us that and you think, how many difficulties he must have in his life, coming and attending for treatment himself.” (Chemotherapy at home nurse.)

The next example was based in a rural area of England, and offered support in the home for those who had reached the last days of life, enabling families to spend time together at home, throughout the dying process, supported by a caring team.

This scheme aimed to facilitate an increase in overall provision of specialist, multi-professional, community palliative nursing care via a partnership between statutory and voluntary sector organisations, to enable patients (with cancer and other conditions) to be cared for at home (largely by health care assistants, supported by specialist palliative care nurses and district nurses) during the final days of their lives. The service offered 24-hour therapeutic nursing, emotional and respite care. (See Appendix 6, Vignette 6 for further details)

It became clear that different services were required to suit different populations and geographical areas. The service described above was situated in a rural area, which meant that it was more practical for the nurses or health care assistants to remain in the home for longer periods, as required. The scheme described below however, was situated in an urban area and offered the facility of crisis or emergency call-outs if and when required.

This Lottery-funded service was available between 11pm and 8am, with nurses based overnight at the GP out of hours centre, located within a walk in centre, at a local hospital. Close liaison with the out of hours GPs provided a two-way back-up system, with the nurses assisting on GP palliative care call-outs and the GPs assisting with prescribing and advice to the palliative care nurse sitters. A triage system ensured that all patients on the current list for palliative care services had a nightly telephone call, to see if they required a service during the night. (See Appendix 6, Vignette 8 for further details)

This scheme was deemed a success by GPs, nurses and hospital staff, as it offered a tailored service to allow people to die in the place of their choice. For patients and their carers, it provided a sense of security, knowing that there was someone they could contact in case of a crisis.

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“We’ve had lots of thank you notes, even if we haven’t seen the patient … expressing their thanks for just being at the end of a phone, just to let them know that somebody is out there if they need them at night.” (Project lead, hospice at home scheme)

New services for children were designed and developed very much around the needs of the whole family:

A children’s hospice, based in Scotland, developed a service designed to ‘provide prompt and effective support in the family home in a flexible way, encompassing the needs of the whole family living with a child / young person with a life limiting / life threatening disease, with an identified palliative care need.’ The service focused very much on social aspects of care and was largely driven by the families, some of whom lived in rural and remote locations. (See Appendix 6, Vignette 4 for further details.)

Families engaged in social activities, such as a Christmas meal, that allowed them time to be a family rather than ‘24/7 carers’, whilst their children were cared for by trained staff and volunteers. At other times, the service allowed families to feel a little more ‘normal’.

“They’ll [ the home-based team] do anything, it doesn’t matter what it is. But if you didn’t have that, you wouldn’t have a break at all, it’s twenty-four hours a day, seven days a week, throughout the child’s life. So if you didn’t have somebody coming into the house and giving you even half an hour away, even with the other siblings or taking them, to be able to do a thing with both siblings, that’s even better than just taking one sibling along. I mean like swimming, you couldn’t take two people, the two of them, because it’s so difficult with the one in the wheelchair and all that, so X [name of project worker] would help with that and things like that. It’s just making your normal life.” (Mother whose child had died)

The scheme described above was located within a rural area, which meant that parents often had difficulties getting out and about, on their own or with their children. By contrast, a children’s scheme based in an urban area adopted a different approach:

Two linked home-based and bereavement Lottery-funded schemes were designed to enhance the quality of ‘referred’ children’s lives, along with those of their siblings and families, by assessing individual needs and arranging for appropriate services (mainly social care) to be put in place. After lengthy delays, a BME project worker was recruited.

Services were provided in part by volunteers who had been recruited and were supported by a (limited) budget to provide ‘therapeutic’ enhancements to the quality of life of the referred children and their families. The scheme was also designed to ensure that other professionals (e.g. teachers) involved with

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the child and family, had appropriate levels of support and guidance. (See Appendix 6, Vignette 10 for further details.)

Families could speak to the BME project worker in their own language and she was able to resolve benefit payments and housing issues.

[Mum and Dad] were also saying that when I [BME worker] do visit …the children are really pleased and in our culture it’s not unusual for children to say Auntie to anyone who’s older, so I’m like their Auntie, who comes to visit and they’re very happy. So the children benefit as well as [name of Mother]….we can look at issues that affect them as a family. (Translated interview from ‘kick-off’ conference, BME project worker.)

“…having a volunteer, we’ve had her for about two years now and she’s excellent. ..They go to the farm one day or they might make cakes or play games or whatever she [child] wants to do on that day, but that’s been so useful. She visits X [name of child] when she’s in hospital as well, which is really nice and it’s just been a lifeline for me really. If I just want to go and do a bit of shopping or have a bath or, or anything, just to use that time on whatever I want to do really and know that she’s being looked after. So that’s been really positive. (Mother of life-limited child)

Service beneficiaries used the term ‘life-line’ or similar on a number of occasions to describe what the new Lottery-funded services meant to them.

“they [counselling centre] were an absolute life-line.” (Service user)

Other innovations included the purchase of portable videophones that could be used when parents and children were apart from each other. Videophones were used both for children of adult hospice patients and where the child was an in-patient of the hospice. They enabled children and their families to maintain visual and audio contact, which was very reassuring for all parties. They could also be used as a tool for nurses or carers in the home to obtain advice from hospice staff. The videophone is a compact and portable unit, which connects to a standard telephone socket and electric plug. (See Appendix 6, Vignette 14 for further details.)

Several other services within the children’s programme focused on adolescents, providing appropriate services for their age group and allowing them to have visits and events planned separately from the younger children, whose needs and capabilities were very different.

One hospice scheme developed themed weekends and special events such as a military ‘boot camp’; an Egyptian weekend; a weekend under canvas in the grounds of the hospice; trips to sporting events such as football and rugby and attractions such as the London Eye. Young people were invited to these weekend events as part of their planned respite allocation to the hospice. The

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young people were consulted on their choice of activities and these were planned to meet the capabilities of the young people. (See Appendix 6, Vignette 9 for further details.)

Another scheme appointed a part time palliative care specialist nurse for adolescents and a part time qualified counsellor to support adolescents and their families. The ethos of this service was to empower families to make appropriate choices, and where possible, for the young people themselves to make decisions about their future care. (See Appendix 6, Vignette 13 for further details.)

One of the young service users reported that she benefited by having access to the counsellor, as he had could provide practical support and liaison with her school.

“Sometimes I’m just so tired..….but now [name of project worker] is helping me, he …goes in [to school] and asks them to sort work out for me. Yes, so that’s quite nice.” (Teenage girl with a heart defect, describing how the adolescent project worker assists her with school-work and relationships within school.)

The relationship between this young person and the counsellor was developed through a ‘book club’ approach, whereby they both read the same book and then discussed it together, with the counsellor building trust and confidence and allowing exploration of ideas and concerns. Other examples included taking young people out to favourite fast-food outlets or fishing trips, during the course of which they had the opportunity to express their fears and concerns about home, school or anything that might be troubling them.

3 3 Awareness raising80% of all schemes that responded to the survey reported that they had developed information of some kind. This included information leaflets about their services, produced by 73% of schemes; directories of local services produced by 20% of schemes and the development of a web site, 23% of schemes. The spread of information through these various routes contributes to raising the profile of palliative care and general awareness-raising of palliative care issues.

“It’s not a question of going in there piling in information, there’s a need for information, but I call it the vitamin theory, a little bit is good, so a lot is better, not true. You only need a certain amount of vitamins, you only need a certain amount of information.” (Stakeholder, adult hospice at home scheme.)

The findings from our systematic literature review of the knowledge and information needs of informal caregivers in palliative care (Docherty, 2007, submission) emphasised the importance of providing appropriate information to informal caregivers, to enable palliative care to be delivered effectively in people’s own homes.

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Some children’s schemes also reported having developed specific guidelines, such as ‘do not resuscitate’; end of life care plans; education guidelines and bereavement booklets. Other resources such as memory boxes were also developed, specifically within these schemes.

The quotations below refer to the development of a very specific care pathway, developed by a joint hospice at home and bereavement team, to provide guidance for those who might be called in to attend when a child dies (e.g. ambulance staff; general practitioners or community nursing staff.)

“We’ve got ..the Nottingham version of the care pathway for children with life limiting and life threatening conditions. We did it, and we wouldn’t have been able to do it without my post …[and] the bereavement nurse, because she led all the development of the end of life assessment tool and so on.” (Community paediatrician, children’s hospice at home scheme.)

In addition a box was developed for each community nursing team base across the locality, containing the care pathway, an ordering of what happens next (e.g. calling the funeral director) and bereavement guidelines.

“…one box for each community nursing team base, so it’s for the nursing staff who are out there and caring for the child, when the child dies and caring for the family at that time… within the box they have ..the community bereavement guidelines, which … covers all the information that nurse needs to know …looking at [the] principles of bereavement care, looking at an ordering of what happens, the pathway and when a child dies at home, what things do you take into consideration.” (Bereavement support worker, children’s hospice at home scheme.)

These tools were developed in response to identified need, as sometimes when a child with a life-limiting condition dies unexpectedly, or even when death is expected, those attending may not be aware of the planned wishes of the family. An example was provided of a child with a life-limiting condition who had died peacefully at home in her mother’s arms and subsequently, ambulance staff had attempted to resuscitate the child and admitted her to an accident and emergency department. These actions clearly created considerable distress for the family, but the ambulance crew had been following procedures. The care pathway should avoid this type of occurrence.

80% of schemes developed some training. This included formal and informal, internal and external sessions for health and social care professionals, on topics such as communication and specialist palliative care skills. It also included working with families to help them to cope better with caring for their child(ren), including feeding techniques, such as bolus feeding and simple hand massage.

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"We can teach the families how to pass the gastrostomy tube or we can teach them how to administer gastrostomy feeds" (Lead nurse, hospice at home scheme)

Without exception, the case study schemes provided training at some level, and most reported that it was well received.

“…the communication stuff, using an actor, dealing with the ‘how long have I got’ question… On the [hospice] ward, there have been a few challenging situations with angry relatives, and I’ve been on the ward this morning and a patient was very angry, for all sorts of reasons and it’s hard to deal with. But the ward staff have said, we need some teaching, can we do it with the actors? And all the staff on the ward have been on this course.” (Stakeholder, adult hospice at home scheme, linked to NHS hospice)

“Because the evaluations [for 3 study days] have all been hugely positive, …they all [local professionals working with children with life-limiting conditions] say they want more, but nobody can actually quantify what ‘more’ of. And it’s like … just more children’s palliative care. …So they’re hungry for information …and they were very clear about how they would use what they’d learnt, back in their work places.” (Project lead, children’s hospice at home scheme)

One of the recommendations from our systematic literature review of the knowledge and information needs of informal caregivers in palliative care (Docherty, 2007, submission) was that enhanced training should be available for those providing services, to improve communication skills, develop cultural competence, improve understanding of non-cancer conditions and address the non-medical needs of caregivers.

3 4 Staffing projectsOne aspect that was confirmed throughout observations at all case study site visits and interviews across the UK, both adult and children’s schemes, was the level of dedication and commitment by the staff towards their patients and service users. (Professor Sir Alan Craft also made reference to this finding in the preface to the Independent Review of children’s palliative care.) Staff also confirmed the high level of satisfaction that was achieved through supporting families in the home.

"They see it as what they call 'real nursing'...and they build up relationships with the family and the patient and they're able to give total care." (Service co-ordinator, adult home-based scheme.)

In our first interim report, we described the difficulties that some schemes, particularly the children’s schemes, had in recruiting staff, and how this often led to delays in delivering services. Over time, the staffing situation improved considerably, and with the exception of one children’s scheme that lost all of its staff, mainly due to the lack of any firm commitment on continuation

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funding, the other case study schemes retained most of their staff, apart from some maternity leave and ill health.

The figures provided below are taken from survey responses, which accounted for 64% of all schemes. These figures therefore do not represent actual totals for all Lottery-funded schemes. In some cases, survey forms were returned with incomplete information and whilst efforts were made to ensure that information was as complete as possible, following up in all cases was not practical.

A total of 780 paid posts were created, with a high proportion being for nurses and unqualified health and social care workers.

The number of staff employed ranged from 1-44, with most schemes employing small teams of between 3-8 people. A high proportion of all staff worked part time.

The table below provides a summary of new paid posts created within the Lottery-funded schemes that responded to our survey. ‘All adult schemes’ includes England, Scotland and Northern Ireland, and ‘all children’s schemes’ includes the home-based, bereavement and hospice schemes across England.

Table 8 Paid posts across all schemes

Paid Staff Totals All adult schemesN = 88

All children’s schemesN= 85

All paid posts 780 340 440

Medical 18 6 12

Nursing posts 326 124 202

Allied health professionals

56 20 36

Qualified Counsellors

19 3 16

Qualified social care workers

42 9 33

Unqualified health and social care workers

189 120 69

Complementary therapists

22 20 2

Administrative / clerical

78 44 34

Other 74 25 49

Posts listed as ‘other’ included: dieticians; BME project workers, play specialists and nursery nurses. The term ‘nurse’ is likely to have covered a

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wide range of nursing skills and qualifications, from G grade, specialist nurses, to nursing assistants.

16 (20%) children’s schemes reported difficulties in recruiting to nursing posts, compared to 13 (15%) adult schemes.

12 (14%) children’s schemes reported staff turnover as a major problem and 31 (36%) schemes as a minor problem. 13 (15%) adult schemes reported staff turnover as a major problem, and 20 (23%) as a minor problem. There are no significant differences between the children’s and adult schemes on these findings.

3 4 1 Volunteers32 schemes (18%) reported that they had recruited or used volunteers to provide a range of services. 19 (22%) adult schemes recruited a total of 198 volunteers and 13 (15%) children’s schemes recruited a total of 248 volunteers.

Volunteers were recruited and trained (by a Scottish national scheme) to provide telephone-counselling services (for further details see Appendix 6, Vignette 3.)

Others were recruited (to a children’s scheme) to assist at organised events and summer play schemes (for further details see Appendix 6, Vignette 15.)

Others provided a variety of services in people’s homes.

Volunteers were often able to provide the sorts of things that made a real difference to the quality of life for patients and carers, for example, befriending; shopping; fetching prescriptions; walking the dog; playing with siblings, taking a mum shopping, or transporting patients to hospital appointments and waiting to bring them home again.

In the survey, we asked schemes when they matched volunteers to service users, whether more attention was paid to matching to the patient’s needs or the carer’s needs?

Table 9 Matching volunteers with patients and carers

Adult schemes Children's schemes

Equal attention to patient and carer

13 13

More attention to carer’s needs

4 2

More attention to patient’s needs

8 7

Some schemes had responded to this question even though they had not recruited new volunteers for their BIG Lottery scheme, implying that they

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already had some volunteers in place. We have therefore not included percentages, as they would add up to more than the total of schemes that reported that they had recruited volunteers.

It is interesting to note the similarities here between adult and children’s schemes, where respondents reported that they focused attention equally on patients and carers.

The illustrations below highlight how some children’s services perceived the role of volunteers.

“We only use volunteers during the school holidays and usually they’re young people that are either at medical school, or are just going to medical school or whatever and they come and help us with the children on the play scheme. And they’re there really just for support and play really, they don’t do any hands on care or any hands on personal care for children, we do that, but.. it’s been very helpful really.” (Lead nurse, children’s hospice at home scheme.)

“I aim to have a group of volunteers who will be able to provide flexible support, so that families can come to us and say we need a volunteer who can come in for two or three hours a week, or may be a fortnightly basis, while either we have a break ourselves or to do some practical things. It might be they do some tasks around the home …they could also be talking to parents, supporting them, listening and just being there as another adult.” (Volunteer co-ordinator, children’s hospice at home scheme.)

"And my vision for the future of volunteers is, that we'll have a little team who'll be available to pilot into families homes and cook them a meal once a week on a Friday night, so that they can sit down as a family and just have their food dished up." (Lead nurse, children’s hospice at home scheme.)

Recruiting volunteers for all schemes required careful consideration, but for children’s schemes, it presented numerous challenges, not least ensuring that police checks were carried out and that sufficient training and support was provided.

3 4 1 1 Managing volunteersIn our evaluation of the BIG Lottery Living with Cancer initiative, (Petchey et al, 2006) we identified a number of issues relating to the recruitment and management of volunteers.

The literature on volunteering suggests that the reasons for offering volunteer services relate to both altruism and individualistic self-interest. (Payne, 2001) In other words, the volunteer ‘needs to be needed’ and to feel that whatever services they are providing are valued, by both the service user and service

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providers. Volunteers also appreciate being part of a ‘team’ and supported by that team.

Having a pool of volunteers to provide the sort of services that make a difference to people’s quality of life, particularly at the end of life, was seen as a real advantage by many of the schemes that had successfully recruited. The services that volunteers could provide were far above the levels that could be offered within the confines of professional health and social care daily routines. However, there were a number of issues involved in the management of volunteer pools.

Managing supply and demand of volunteer time and services took up a considerable amount of management time. Volunteers were frequently willing to provide services, but there was often insufficient demand for them.

“The service is one of fluctuation as well and there are occasions where perhaps we’ve had 20 something volunteers, we haven’t had the capacity or the demand for 20 something volunteers. And …people who aren’t then being used as frequently as they would have wished.” (PCT lead, adult hospice at home service.)

Some volunteers could only work at evenings or weekends, which did not necessarily match the requirements of service users, who often had specific needs at various times. For example, parents generally get extremely tired when caring for a life-limited child, and might just need someone to look after their child while they catch up on some sleep. It was difficult for services to provide anyone at short notice and on an ad hoc basis.

Project managers reported that when matching volunteers to service users, it was often the carer requirements that were matched as opposed to the patient’s. The fragility of volunteers (for example, relating to their own cancer experience) was also an issue that required good management, time and communication skills.

“It presents more of a challenge actually teaching volunteers, because you have to choose your words very carefully to get them interested, some communication stuff and something very, very important to look at: loss and grief, because there’s an awful lot of volunteers come this way. “My mum died and I want to give something back.” And I make it very clear to any volunteer coordinator that my role as a trainer is to make sure that they know what they’re going into.” (Trainer, hospice at home scheme.)

We asked schemes if the turnover of volunteers presented them with a problem. 12 adult schemes reported that turnover was a problem, against 3 children’s schemes. This difference was statistically significant at p=<0.05. 1

1 Chi Square = 4.33; df = 1; p=0.0374

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3 5 PartnershipsIn our 2006 interim report (www.biglotteryfund.org), we focused on partnerships and provided a list of examples identified through the initiative:

health and education health and social care traditional medicine and complementary therapies palliative care services and non-cancer acute specialities children’s hospice and adult hospice children's hospice and children's hospice at home schemes adult hospice and adult hospice at home schemes voluntary sector and statutory sector

3 5 1 Organisational partnershipsOur survey findings show that 28% of all schemes reported working in partnership within the same sector, and 78% across sectors. This is a very encouraging finding, as the Lottery initiative was designed to encourage partnership working, particularly between the voluntary and statutory sectors.

We wanted to establish how well schemes had integrated with other health and social care organisations involved in palliative care in their locality. We asked which organisations schemes had worked closely with during the course of their grant life. The table below sets out the key partners and most important partner for those adult and children’s schemes that responded to this question.

Table 10 Key partners and most important partner (% all schemes)

Sector of organisational partner

All adult schemes (%)N=88

Most important partner

All children’s schemes (%) N=85

Most important partner

Statutory health(e.g. PCT, Health Board)

82 (93%) 39 (44%) 82 (96%) 59 (69%)

Statutory non health (e.g. social services)

65 (74%) 10 (11%) 77 (91%) 5 (6%)

Non statutory national (e.g. national voluntary organisations)

41 (47%) 4 (5%) 37 (44%) 2 (2%)

Non statutory local (e.g. local hospice)

72 (83%) 12 (14%) 68 (80%) 7 (8%)

BIG Lottery Fund 55 (63%) 3 (3%) 65 (76 %) 5 (6%)

These findings show considerable similarity between adult and children’s schemes, however, this is not surprising, since the initiative was designed to enable the statutory and voluntary sectors to work together in partnership.

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61% of children’s schemes identified an Education Authority as a key partner, which demonstrates that many children’s (health and social care) schemes were successful in crossing sectoral boundaries, and linking with schools. However, just 31% identified a Strategic Health Authority (SHA) as a key partner, despite the intended growth of managed networks, led by local SHAs. More than two-thirds of all schemes identified the BIG Lottery Fund as a partner.

71% of all schemes felt that by the end of the scheme they had a good knowledge of other organisations involved in the delivery of palliative care services in their locality and how they worked. 67% of schemes felt that other organisations delivering palliative care services in their locality had a good awareness of them and 72% felt that their contribution was valued by other organisations delivering palliative care services in their locality. Our survey findings would appear to reflect that the new services were well integrated.

We have previously suggested that although some partnerships are highly effective, the level of participation and risk and reward can remain highly variable. The example provided below demonstrates how in some cases at least the level of risk can be mitigated by close working between a voluntary sector hospice and a PCT.

The home-based service represented a partnership between a PCT and an established (adult) hospice. Strong links between the PCT and the hospice proved beneficial in terms of training community staff and extending the availability of complementary therapies to those in the community (either directly or by training hospice at home staff or caregivers.)

This service acted as a lever for the development of a county-wide hospice at home service, delivered by health-care assistants. (For further details see Appendix 6 Vignette 6)

The hospice was keen to develop at hospice at home services, but:

"To set up another service independently would [have been]….corporately… a high risk.. so, from the hospice's perspective, working in partnership has many benefits, in terms of being low risk for any financial consequences of setting the service up.." (Hospice manager)

For the PCT (statutory sector organisation), the value of the cross-sector partnership arrangement hinged to a large extent on the focus and expertise of the voluntary sector hospice organisation.

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“They’re [the hospice] more focused…. they’re not having to take their eye off the ball because suddenly you’ve got another target or another initiative to take on, they can provide a service.” (PCT manager.)

New partnerships often provided the opportunity to value different perspectives and examine new ways of tackling problems. The hospice at home scheme illustrated above provides a good example of this, with both partners learning more about each other’s ethos and priorities and working through difficulties by meeting each other face-to-face and exploring options. This brought an added value to the new service.

Other examples within the adult programme illustrated a history of collaborative working:

"There is a very good relationship between health and social services, particularly at the front end, I mean there's always tensions at the money end, ....but... we've worked closely together in a collaborative way for a long time." (Social services manager, adult hospice at home scheme)

Not all partnership arrangements were as successful as these adult models would suggest however, and in particular, children’s schemes appear to have faced the greatest challenges in terms of developing and sustaining new partnerships.

Those children’s schemes that were dependent on social services for referrals and the provision of social care identified some difficulties:

“Sometimes …I think because it's such a new service, it's expanded and may be we've taken on more than was originally thought we would, or may be more than we should and I do feel Social Services may be could do that bit more.” (Nurse, children’s hospice at home scheme.)

“There's more of a gap in social care, particularly with palliative care, than there is in health I think. I think it's very difficult to convince social care about palliative care needs.” (Nurse manager, children’s home-based scheme.)

"But actually, there is a cultural difference, a medical model is different from the social work model." (Children's bereavement service manager)

This cultural difference between (children’s) health and social care was reported on a number of occasions,

"We had a great deal of difficulty engaging social services, well we've had some social services support, but it's been very disappointing… in general." (Community Paediatrician)

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"And we speak health speak and they speak social services speak, and I'm sorry, I really do try and learn social services speak, but I'm born and bred health and it is a different language... you don't have a service that you fit clients into, you need to have a service that meets the clients needs." (Lead nurse, children’s hospice at home service)

This finding was also reported anecdotally at network meetings and children’s palliative care conferences (e.g. ACH annual conference.)

Relationships between agencies and organisations took time to establish:

"It's only this year, and this is into our third year that we're included in meetings [with schools where the children / young people attend]" (Project manager, children’s hospice at home service)

Some partnerships broke down as the grant life came to its conclusion, with each partner looking to its parent organisation for continuation funding:

“In trying to get continuation, partnership services fragment, because they each go to their own funding streams... and then... it all sort of breaks down." (Children’s hospice at home service, PCT lead.)

Another example illustrates the difficulties of bringing together a range of agencies with different priorities:

"I think it was quite radical thinking in terms of looking at agencies working together and using the expertise from different agencies... I think the problem is kind of keeping that communication level going." (Voluntary sector partner to children’s hospice at home scheme)

3 5 2 Practical partnerships We identified a number of tensions, particularly between groups of community nurses, some of whom had been in established teams, enjoyed working with dying patients and often felt threatened by the development of new ‘specialist’ palliative care roles. The illustration provided below led to a change of focus for this adult scheme:

There were some difficulties at the outset, as there appeared to be some misunderstandings about the role of the new liaison sister, particularly by those with an existing palliative care role in the community:

"People thought we were stepping on their toes." (Nurse manager)

The original proposal to focus on hospice to home discharge was amended, with the agreement of the BIG Lottery Fund, to focus on hospice referrals and admissions. In addition, considerable efforts were made to overcome feelings of mistrust and to raise awareness of the benefits of the new role, all of which have subsequently led to a marked improvement in relationships:

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“We have developed a very good professional working relationship with all the other professionals out there and so much so now, they've come to value our support and our expertise…now we have this fantastic relationship.” (Nurse manager.) (See Appendix 6, Vignette 2 for further details)

In order for schemes to be successful in achieving their objectives, it was essential that any resentment was identified and managed.

"One of the biggest issues...is that kind of relationship out in the field you know, the relationship between the Hospice at home nurses and the community nurses, because...the district nurses are very strong independent practitioners." (PCT manager, adult hospice at home service)

Some children’s community nurses also felt threatened by the new roles initially:

“When we met with the community nurses, it was very much I think they were quite threatened, they thought probably I would come in and do all the sitting, all the care and they might be excluded. …and they thought, oh well we can do that. And very true they could and I wasn’t denying it, but …it was extending the service…if you want to do the night sitting, then I’ll do your day work, if the family need more night sitting, then we’ll take it in turns, because obviously they need to sleep. And people seemed much happier with that.” (Lead nurse, children’s hospice at home service)

These tensions were generally alleviated over time, as schemes developed their teams and both they and their counterparts became more competent and confident and less competitive. However, managing relationships did require considerable sensitivity at both personal and organisational levels.

3 6 Organisational changePrevious experience of longitudinal evaluation has made us aware of the impact of organisational change on developing services.

We asked all schemes to what extent health service re-organisation nationally or in their locality had been a problem for them?

The table below sets out the responses to this question. However, some respondents did not complete this section. We have therefore adjusted the totals to reflect those that did respond.

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Table 11 Impact on schemes of health service reorganisation (% schemes responding)

England children’s schemesN = 80

England adult schemes

N= 35

Scotland

N= 33

Northern Ireland

N =17Major problem

28 (35%) 11 (31%) 3 (9%) 2 (12%)

Minor problem

25 (31%) 17 (49%) 7 (21%) 9 (53%)

No problem 27 (34%) 7 (20%) 23 (70%) 6 (35%)

The most widespread health service re-organisation took place across England during the course of the BIG Lottery palliative care initiative and clearly impacted to some extent on children’s schemes (66%) and adult schemes (80%). The impact of re-organisation was also felt across Scotland (30%) and Northern Ireland (65%).

The impact of organisational change is also discussed in our conclusions as it may have impacted on the level of sustainability.

3 7 Key points

There were divergent viewpoints among professionals and also between them and the general public about the appropriateness of various terms such as ‘palliative care’ and ‘hospice’.

The BIG Lottery Fund palliative care programmes supported service development that met previously unmet needs, such as specialist disease services (e.g. Huntington's Disease), chemotherapy at home and children’s hospice at home services.

A total of 173 schemes (64%) responded to the end of grant life survey.

The initiative contributed to raising awareness of palliative care. 80% of all schemes that responded to the survey had developed some form of information and 80% of schemes developed training.

A total of 780 paid posts were created, with a high proportion being for nurses and unqualified health and social care workers.

Thirty-two schemes recruited 446 volunteers who provided a range of services and in many cases, were matched with equal attention to patients and carers. Turnover of volunteers was problematic for some adult schemes.

Partnership working was a success with 28% of schemes working in partnership within the same sector and 78% across sectors.

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A statutory health organisation was identified as the most important partner by 44% of adult schemes and 69% of children's schemes.

The new services were well integrated within the local economy of palliative care provision.

Key learning points for service providers and commissioners Volunteers can successfully provide services in the home, but

require good management and support. Building effective relationships within and across sectors is key to

success. Partnering relationships require nurturing in order to maintain their

effectiveness. The development of new services or even incremental development

of existing services can be complicated and more time-consuming than originally planned.

Organisational change can impact on developing services..

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4 Who did the Lottery-funded schemes work for?

This section will examine who the beneficiaries of the Lottery-funded schemes were and how successful referral mechanisms were. It was a privilege for the lead researcher to be invited to meet a number of service users in their own homes. Five case study schemes were able to facilitate visits, including three children’s hospice at home schemes (a total of seven families visited) and two adult schemes (three families visited.) Other service users were interviewed by arrangement or opportunistically at various other locations, including a counselling centre, district general hospitals and hospices.

4 1 The familyThe key finding within the evaluation of the children’s programme and according to respondents, the most profound success factor in delivering services, was that they were developed to meet the needs of the entire family, (and often extended family) in the home, extending beyond (clinical) health needs to encompass psychological and social needs.

Each of the case study schemes addressed the needs of families in some way. Examples of how services focused on the families are provided below.

4 1 1 Children’s services

Children’s hospice at home services were developed to: ‘provide prompt and effective support in the family home in a flexible way, encompassing the needs of the whole family living with a child / young person with a life limiting / life threatening disease, with an identified palliative care need.’

Respite care offered families the opportunity to have a short break from the 24/7 care of their sick child, providing them the chance to: "have lunch together or get some shopping, or just do things that they couldn't [otherwise] do, because their child had so many needs." (Lead nurse, hospice at home scheme)

A number of the hospice at home nurses took on the role of key-worker for many of the families and were able to liaise with other agencies as appropriate, managing and often reducing the level of direct contact from other professional groups. Flexibility was seen as key to meeting the needs of families, much of which focused on social support rather than specific health needs.

Many of the hospice at home services were linked to a bereavement service, in accordance with the way the children’s programmes had been designed. Working together, services were designed to: ‘enhance the quality of ‘referred’ children’s lives, along with those of their siblings and families, by assessing individual needs and arranging for appropriate services (mainly social care) to be put in place.’

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Bereavement services provided support to families, many of whom who also had multiple complex needs and in some cases required long-term support.

Lottery funding enabled hospices to enhance their existing services and mainly supported additional staff, including: contact workers for each family; play-teams; sibling support workers and family support teams.

Some of the schemes focused on adolescents, empowering families to make appropriate choices, and where possible, for the young people themselves to make decisions about their future care.

The emphasis of moving beyond the clinical needs of the sick child, to address issues around the social functioning of ‘the family’ is hopefully clear from the examples above.

Project staff were acutely aware that:

"Parents are more like carers rather than parents, they don't have the time to be a proper parent to the child, they're caring for most of the time." (Project support worker)

"We never all go out together" (Mother of life-limited child)

These factors could sometimes lead to family breakdown:

"It's very common for the parents to split up through those years that they're looking after the child, because they spend all their time caring and the relationship goes, because they're not the same person, they can't be." (Family support worker)

Services were therefore developed, to try to provide families with some time to do ‘normal’ things, even if what ‘normal’ meant was having a bath, reading a magazine, going shopping or having a couple of hours’ sleep:

"They [project workers] can just be at home with the family, or they [parents] can leave the child at home for a few hours, which is quite normal and go off and do what they need to do and come back" (Project lead re respite services in the home.)

In a number of cases, just having someone else to spend dedicated time with the (life-limited) child, was valued:

"I think that's the nice bit...that somebody can spend that amount of time purely for [name of child]... and realising that actually, enjoying yourself is doing what you [the child] want to do." (Mother of life-limited child)

However, it was often difficult for parents to leave their children in the care of someone else, unless they had absolute confidence in them:

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"And I think it's about the parents actually feeling confident who they're leaving their child with " (Community nurse manager, hospice at home scheme.)

"And it's not something that some of the volunteers can do, because they can't be left alone with that child, they haven't got the training to be able to resuscitate, or to manage that type of fit….it's why nurses do end up being the key person in the child's life and the person that the family want to do everything for them." (Community paediatrician)

"She [life-limited daughter] needs to play with someone other than me, have fun with somebody [else] ...it's a valuable thing for us [having respite at home], because you get really tired….it's great, being able to hand over to somebody else...and be confident that they're going to look after her, as well as I can myself.” (Mother of life-limited child)

Children’s schemes often consisted of small teams, caring for a small number of families. Resources were therefore limited and they could not necessarily meet all the needs of all the families:

"The model I would like would be to have care when I need care and not when it can provided....when I'm really, really tired and I would love sometimes just to be able to say, "can somebody come and let me just sleep for an hour” or something like that...if there was more flexibility, it would suit me better." (Mother of life-limited child)

"Some families are extremely needy, and that isn't always parallel to their medical need...there are some families who are hugely emotionally needy and other families who get their emotional support elsewhere...or there are families where there are major social issues." (Community paediatrician)

Most of the children’s schemes employed nurses, some of whom were highly skilled (Grade G). Protecting their professional boundaries could be problematic with the demands placed on them:

"It is difficult, because when you're visiting [families with a life-limited child] you often end up having to sort out other issues for them... you can't just have such tight professional boundaries." (Community Paediatrician)

However, some of the nurses, even those who were highly skilled, believed that by undertaking key worker roles and resolving a variety of issues for the family, they were satisfying their needs as far as possible:

"We act as key worker, so that in situations where families are seeing all these professionals, that is taken away from them, because we do that for them....we feel that that is part and parcel of working with these

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families and that is one of the biggest helpful things …that families have identified....we work in a really holistic way." (Lead nurse, hospice at home project)

4 1 2 Adult servicesThe adult case study schemes also focused on ‘the family’ and were designed to: ‘improve the quality of life for people and their carers, through effective medical, palliative and social care.’ In some cases, for example, some of the neurological conditions such as Huntington's Disease and Motor Neurone Disease, this could involve long-term care, including counselling, particularly around ‘anticipatory’ grief.

Some schemes focused on the provision of support and respite for caregivers, setting up respite provision within the home to enable caregivers to have some ‘relief’ from the constant burden of caring for someone with palliative care needs, illustrating the “clear recognition by health and social care professionals that carers have a pivotal role in end of life care and that their support is essential.” (Project proposal, community-based service.)

One scheme worked in partnership with the local Citizens’ Advice Bureau, to provide professional advice on financial matters, which are often a concern to people who are dying and their carers and families.

Other schemes were designed to provide short-term care, facilitating death at home, if that was what the patient and their families chose.

“We actually fit in with the family when we go there, to make it feel more relaxed for them...trying to make it feel as normal as possible to be at home and that's the ...natural place for them to be to die." (Service co-ordinator)

4 2 Siblings Many of the children’s schemes set up specific services for siblings of those children with life-limiting and life-threatening conditions that they were providing care for. These services were designed to provide a range of activities including: ‘access to normal social outlets through respite care, access to play therapy and improved preparation for school.’ Siblings were recognised as having a range of psychological, emotional and social needs that had not previously been addressed, or only addressed to a limited extent. This included coping with the diagnosis and what it could mean to them and their family. The BIG Lottery funding allowed schemes to expand on existing service provision or develop services where there had been none previously.

These services were largely well received, and provided an ‘escape’ for the siblings, enabling them to have their own time and space, with experienced workers available to deal with any issues around grief and loss that might arise. In some cases this service was offered after the death of the sick child, but many addressed the needs of siblings who were coping with change and

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often providing care and support to their sick sibling and indeed often, supporting their parents as well.

This aspect was largely provided within the voluntary sector and generally involved play and other activities that enabled children to express themselves within a safe environment. Some examples are provided below.

A children’s hospice enhanced existing services and mainly supported additional staff, including: a contact worker for each family; a play-team; sibling support worker and family support team. Part of the development work was targeted towards siblings, an area where it was felt that there was an unmet need.

"Because the parents are more like carers rather than parents, they don’t have time to be a proper parent to the child... so inevitably siblings are sidelined and it will lead to lower self-esteem." (Sibling support worker).

A bereavement team was also developed, to provide support to children and families, including siblings. This team worked within the hospice and in schools, enabling siblings to remove themselves from “the emotions” of the home situation and supporting teaching staff.

“This has been a very successful development in the support of parents, and siblings in particular….” (Head of care)

For further details, see Appendix 6, Vignette 9

The next scheme addressed sibling issues wherever that child chose to be seen, which was often within their school. Visits by a sibling support worker from the children’s hospice helped to reinforce the issues that the child was trying to grapple with:

“Schools are very important and the thing that’s really grown is - when I see children at home ...they constantly are looking round behind them to see if mum or dad is coming.. and …they don’t feel they can open up at home. And the majority of that is because they just feel guilty about doing so.

When I’ve given them the opportunity to see me at school, it’s always lovely, great idea, then I see them at school, then I will give them the option again: home or, “Oh school please, I can talk to you at school.”

It’s obvious it makes a big difference.

But also in that the school is such a big part of these kids’ lives, that me going into the school shows that actually, if the school doesn’t believe that these children have got an important issue, that it really is affecting their school life. “(Sibling support worker)

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Other children’s hospice schemes offered sibling services in the hospice, holding special events:

This hospice scheme was very successful at delivering support services to (more than 100) siblings.

“We have dedicated days where the siblings of the children from the children’s unit and the children of adult patients come in and we focus specialist activities on them, giving them a chance to be able to talk about how they’re feeling, giving them an opportunity really to get to meet the nursing staff and then also to be able to build up relationships with them”. (Nurse manager)

For further details see Appendix 6, Vignette 14

Community based schemes generally brought siblings together in groups, often separated according to their age and specific needs. Services were provided on a regular basis in some cases and in others they focused on school holidays, when life at home could be more fraught.

Sibling groups were organised on a regular basis and run by the project workers employed by the voluntary sector partner.

For further details see Appendix 6, Vignette 10

This home-based scheme organised specific sibling groups and activities.

For further details see Appendix 6, Vignette 15

Other schemes also referred to identifying the needs of siblings, and staff would address these needs as they arose:

"I'm doing two lots of sibling work...one is with a family whose daughter has a long-term illness and there were issues that the Mum has never really told the sibling, and the sibling is very bright and keeps saying, well Mum, you said last year she wasn't going to walk, why is she not walking, so I'm doing one to one work….and I’m building up the relationship and if I can continue that work I will." (Specialist palliative care nurse, who subsequently left home-based scheme)

"But especially with the younger siblings, I talk to them while I'm treating their brother or sister and explain exactly what I'm doing and how and why." (Specialist children's palliative care nurse.)

Sibling support workers were very clear about their objectives in increasing the children and young people’s confidence, self-esteem and social skills:

"The main thing...is to get the young people in similar situations together, and I think that has helped the older group...they've got to know each other and become more established as a group….its more

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the older ones supporting each other...the aim of the group is to bring these young people on ..socially and bring up their self-esteem. The children in the little group, some of them need one to one... they do need lots of attention...it is about building their confidence, their play skills, their social skills." (Specialist voluntary sector young carers service manager)

Sibling support, particularly activities away from the home, were welcomed by parents:

"Some of the parents have commented that it's nice to see them [the siblings] enjoying themselves and that they're having some time out... and they deserve some time out and they deserve a break." (Specialist voluntary sector young carers service manager)

One of the findings within the development of sibling services was that in some cases, insufficient resources had been allocated within project budgets: firstly to allow workers (paid) time to plan group sessions and outings and secondly for transporting siblings to group sessions and outings, as parents / carers often needed to focus their attention on the life-limited / life-threatened child(ren) and were not able to take siblings to the sessions provided.

“…more funding for transport, like a driver escort, I would allow more time for visiting families ..and also more time for me to work with [the lead nurse]. (Specialist voluntary sector young carers service manager.)

The researcher attended one sibling session as a non-participant observer from which she became aware that this problem was likely to exist wherever this type of sibling service was provided.

4 3 Adolescents and young peopleWe raised issues around adolescent needs and concerns about transition to adult services in our two previous interim reports, (see www.biglotteryfund.org). We also discussed how some voluntary sector (hospice) organisations in particular have been approaching adolescence and transition. Here we describe how Lottery-funded schemes provided services for young people.

Two schemes specifically addressed the needs of young people. The first was a (voluntary sector) children’s hospice, located in the South of England, where part of the development work was targeted at the adolescent group of referred children.

Prior to the Lottery funding, the adolescent group of referred children, had made it clear that they would like to have services more appropriate for their age group and separate from the younger children, whose needs are very different. There were approximately 40 adolescents on the books at the time of the grant proposal, aged up to age 24. Young people with complex

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conditions are now living longer than previously, due to medical advances. Transition to adult services is sometimes deemed inappropriate. In addition, the 2002 Care Standards Act requires care to be provided for ‘young people’ at separate times to younger children (although this has clearly been expressed as a requirement by the young people themselves.)

"The difficulty does come when they're [young people] living longer and longer." (Care team member)

"With medical technology keeping people alive longer, the demands that puts on society and their families are huge and so that urgently needs to be addressed." (Care team member)

Teenage themed weekend ‘treats’ included trips to popular attractions in London; rugby and football matches; a visit to a casino; an Egyptian weekend and an overnight ‘under canvas’. Great efforts were putting into decorating the hospice on a particular theme and groups of young people come along specifically for these planned weekend events.

A new unit is planned, designed specifically for the requirements of young people, and based largely on the model developed by Martin House, to include a post life suite; hydrotherapy unit and training space.

For further details, see Appendix 6, Vignette 9.

Three visits were made to this scheme, and on one occasion, the researcher met with a group of six young men, (aged between approximately 14-21 years) who had come to the hospice for a weekend ‘event’. All the young men had Duchenne Muscular Dystrophy (DMD) and were at various points along the disease trajectory. Informal conversations with these young men (and some of their parents) indicated that whilst they expected to have some fun during the weekend, they acknowledged that the main benefit would be to their parents, who could have a break from the constant (physical and emotional) strain of caring for them.

At the Association of Children’s Hospices (ACH) 2006 conference (Chateau Impney, Droitwich Spa), two young men gave a talk on ‘independent living.’ Both had DMD, and both had achieved university entrance, one had completed his degree and had set up a business in order to provide the information and means by which others in similar circumstances could attain independent living.

These examples are used to illustrate that for some of this group of life-limited young people, access to services that provide them with a ‘normal’ life within the confines of their condition is extraordinarily difficult.

The second example was a linked home-based and bereavement scheme, and was also situated in the South of England. This project focused on giving young people the chance to prepare for transition to adult services, providing

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them and their families with the information and support to make informed choices.

Lottery funding supported the appointment of a part time palliative care specialist nurse for adolescents and a part time qualified counsellor to support adolescents and their families.

The ethos of this service was to empower families to make appropriate choices, and where possible, for the young people themselves to make decisions about their future care.

Services could be delivered at the place of choice of the young people:"I tried to arrange my visits where it would be most acceptable to the child, whether it be at home, so that the rest of the school friends don't know about...the blood letting and ...the medication, or whether they prefer me to go into school as part of their daily routine...some children will really reject the thought of you going into the school at all, because at school they are just part of their peer group, they don't want to be different." (Lead nurse)

The scheme provided support and awareness raising within local schools, offering services for the client group of young people within school where this was their choice, as well as supporting teaching staff in their understanding of issues around death, dying, grief and loss.

Another success factor related to accessing age appropriate, relevant information / literature for this client group, which formed part of a tailored service to meet their needs. (For further details, see Appendix 6, Vignette 13)

These vignettes largely speak for themselves. However, many other health and social care professionals raised concerns about age appropriate care and transition to adult services. This issue was also raised in the Independent Review of Children’s Palliative Care (DH, 2007) and the Every Disabled Child Matters (EDCM) review (HM Treasury and DfES, 2007). The National Framework strategy work streams are also examining issues around transition of young people to adult services, and the Association of Children’s Hospices (ACH), along with the children’s palliative care forum (ACT) are meeting with the National Council for Palliative Care (NCPC) and Help the Hospices in July 2007, to discuss research issues in this area.

Our detailed analysis has identified a number of issues that Lottery-funded schemes raised. Firstly, differences between chronological age and the cognitive and developmental age of young people with life-limiting conditions was acknowledged as being highly problematic for both policy and practice.

“What's a child and what isn't a child, I think is quite difficult and you know, one 14 year old you might say is an adult and another 14 year old is very much a child.” (Children’s community nurse manager, children’s home-based scheme)

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“There are the over 18's that are out working and at school...then there are the over 18s who are like real children, in a grown up body.. and that is the more difficult thing. The NSF, the Children's Act, the Care standards...is all pointing to if a child is over 18, but still a child, we should still look after them...the difficulty comes when they're living longer and longer.” (Stakeholder, hospice scheme)

"Its 19 [the upper age limit for children’s services] from what I understand, but the reality is if there's nowhere for them to go and they're coming to the end of their life, we can't just say to the families that we're shutting our doors on you, when we've supported them for 10 years before that....a lot of the teenagers have conditions where mentally they are quite aware of what's happening, so they actually know that there's nowhere else for them to go, and its difficult for them.. boys with muscular dystrophy in the past would never have got to 19 or 20, they're definitely living longer than they used to....If you've got a 24 year old who has gone through his life with a progressive illness, they don’t want to be in a hospice...in some ways teenagers with cancer might have a better deal, because they've got the Teenage Cancer Trust, at least in some areas, they have got an alternative." (Hospice stakeholder.)

Secondly, recent advances in medicine and technology mean that many young people are now living into adulthood who would not have done so in the quite recent past.

“Not only has transition traditionally been difficult, but we're transitioning a whole lot of conditions that never got to adulthood in the first place and the, I mean we're only, it's only in the last few years that adult chest physicians have taken any interest in cystic fibrosis.” (Community Paediatrician, children’s home-based scheme.)

This means that to a great extent, adult services were perceived to be unprepared for the uptake of care (and support) for this group of young people and there was no forum in which dialogue could take place between children’s and adult service providers.

“The thing is they're expecting you to transition people: 1 is there's very, very few places to transition onto, there's no services and 2. you're often, if you have to cut off blanket eighteen…you're asking to transition people who first of all are reaching a key stage in their life, so it's very emotional for these families, they never thought their child would reach that age and 3. because they're usually reaching that age is because of medical technology, so actually they're much more dependent and they're more much ill than they would ever have been had they, you know a few years ago they may have died. So you're asking them to move away from services they know to very few services at a time when they're more dependent than they were before. So it's really hard.” (Lead nurse, children’s hospice scheme)

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Some of the schemes highlighted issues on the children’s service side that indicate that they had not done enough to prepare the young people and their families:

“You can't suddenly start thinking right, well this is a young adult actually, and we've never allowed that young adult to have any choices in any of this, because we've always worked with what the family's choices were. And we've never even told that young person that they're dying or taught them to care for themselves, or taught them to advocate for themselves.” (Community Paediatrician, children’s home-based scheme )

“I think traditionally …we've been very bad at actually handing over and that transition and that whole process of how do we recognise what the needs are and how we do it, for anything, irrespective of whether there's an end of life issue at stake here, as well and people are even more possessive about wanting to retain those children. “ (Bereavement manager)

“That family has gained trust and all those things with you, and over a long period of time …they inevitably aren't sure that they want to take that next step to a whole group of new strangers and so it's how do you integrate some of those… there's got to be groups of services on the adult side where people have an interest in younger age groups and it's trying to click those two together really and start them coming in when the children are 14, 15, 16 and being involved in the care, so that actually when they move over, they are already known and established. That's the challenge at the minute.” (Community Paediatrician, children’s home-based service.)

“ We haven't actually got any guidelines together for transition for these children, but that's one of the things that we really do want to develop.” (Lead nurse, children’s home-based scheme.)

Some schemes provided examples of efforts to facilitate the transition of young people to adult services:

“Transition was a hot topic, the transitional services, it's so difficult that period of time and the interface with the adult services, there were a lot of problems with this particular child with trying to get the right services for this girl in that in between stage. No easy answer, but it is an area that there is a huge gap with transition and again with the skills of the community team, going into the adult services it's difficult.” (Nurse manager, children’s home-based scheme)

“We started the transition, we've been involved with adult services, we've managed to go along with them to a a local respite centre and she's started to go there …when she was 18. So we've been working

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with them, I've done some of the teaching at this place …I've been along there and done teaching sessions of tracheostomy care for them….so that they know kind of what we do.” (Lead nurse, children’s home-based scheme)

We are aware that a number of children’s hospices are discussing the registration of young people with the Healthcare Commission; some are developing new services specifically for young people and some are even building new units to address the specific needs of this group.

A survey of 40 children’s hospices conducted by one of our research team, reported that: “care of adolescents with life-threatening illness was identified as an issue with more than 50% of the hospices, stating that they had difficulty in liaison with adult hospices to offer support for adolescents.” (Mash, E & Lloyd-Williams, M, 2006)

Not all families wish to take up the offer of hospice services however, and in the community, many services that had been accessible to this group of life-limited young people whilst under 19, e.g. college courses, hospice at home services including respite, cease to be available once they reach the age of 19 or 20.

“Sometimes I get frustrated with there’s things I want to do when I leave school….there’s college things I want to do and they’re saying they don’t have the resources to do it.” (18 year old service user)

“A lot of the issues are not around palliative care, they’re around living and being in the community and being part of something and having purpose and meaning in your life and yet as palliative care providers, we’re the ones who are striving to try and demonstrate a need for services. And it’s about things like going to college and getting jobs.” (Project lead, hospice at home service.)

As young people are now coming through the system, although the numbers are very small, they are likely to increase over time. Adult hospice and hospice at home schemes rarely mentioned adolescents and young people. Some adult services had provided at home services to people in their late teens and early twenties, but these were mostly cancer patients with whom they felt more competent and confident.

4 4 Health and social care professionals Health and social care professionals benefited from Lottery funding through improved access to information and training on palliative care and other associated issues.

We reported earlier that 80% of all schemes that responded to the survey replied that they had developed information of some kind, and 80% of schemes that responded had developed some training (including formal and informal, internal and external sessions for health and social care

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professionals, on topics such as communication and specialist palliative care skills.)

Information produced included:

Clinical guidelines for nurses Information sheets / protocols Referral protocols / criteria Education packages for care homes

Education and training included:

Group sessions with ward based staff Signposting sessions Basic counselling skills Communications skills Bereavement workshops Clinical skills training Palliative care skills for community staff

Those case studies that included training reported that it was very well received:

“…different health professionals involved, it was the people who actually deliver the services, it was the complementary therapies people, it was the respite services. They were well attended…we did have GPs come, but mainly nursing staff, district nurses, secondary care nurses, mainly primary care though. And I do believe, although I haven't got the figures, that the referrals have increased since we held those sessions. We held I think it was three of them over the space of a couple of months…I think there was about twenty to thirty people attended those sessions.” (Specialist nurse, adult hospice at home service)

“We've got a big education department here anyway, [we] will pull in various professionals within our specialist areas, to teach… the training that's going on.” (CEO, adult hospice.)

“We invited professionals from the area to come in and we had over eighty people came in for the day. The response to the evaluations were fantastic, it was really a positive response.” (CEO children’s hospice.)

Professionals working in the community (e.g. district nurses) also benefited from having additional services to refer adults and children with palliative care needs, knowing that those services had greater capacity than they did within each home:

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“We [district nurses] go in and out and it’s, you can go in and it’ll be, “Oh lovely to see you,” just have a chat or it can be in your face like “This, this, this has gone wrong, what are you going to do about it?” you know. And if the hospice nurse is there for a period of four hours, six hours, eight hours they get a bigger picture, we can’t be there for that time.” (District nurse, adult hospice at home scheme.)

4 5 Patients with conditions other than cancerIn our previous interim report, we discussed how, in relation to conditions other than cancer, efforts were being made to raise awareness amongst health and social care professionals and how different illness trajectories made it harder to define end of life care needs.

Here we focus on the success (or otherwise) of targeting people with conditions other than cancer.

Two schemes focused specifically on conditions other than cancer. The first, focused on Huntington’s Disease, and was based in Northern Ireland.

This 3-year grant scheme was designed to improve the quality of life for people with Huntington’s Disease and their carers, through effective medical, palliative and social care in one of four Health and Social Services Board (HSSB) areas of Northern Ireland. The scheme was developed in close association with the Scottish Huntington’s Disease Association, which had previously demonstrated that a specialist service could have a significant impact on the quality of life of those affected by Huntington’s Disease. Lottery funding created a specialist service, which provided both outreach to those affected by the disease and training and support to health and social care professionals who were likely to come into contact with affected families.

(For further details, see Appendix 6, Vignette 1.)

Beneficiaries of this scheme, mostly carers, expressed their relief at having access to a service where none had been available previously.

"Nobody cared, nobody heard of Huntington's and nobody seemed to want to know of Huntington's Disease. If you said Huntington's to anybody they didn't know it, they didn't want to know. She's [specialist Huntington's nurse] the only one that's ever done anything for me.” (Widow to Huntington's disease and carer of two sons with the condition)

"We are the poor relation of neurological disorders, because it's rare enough, but does that mean we can't have the same services that are given maybe with MS [Multiple Sclerosis] or Parkinson's disease? (Chair person, Huntington's Disease Association)

The second example focused on Motor Neurone Disease and extended across Scotland.

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This charitable sector grant scheme provided a new service, which filled a previously unmet need, for people with or affected by Motor Neurone Disease across Scotland. The BIG Lottery grant enabled the organisation to recruit more than 20 volunteers in total, to provide a counselling service. Once fully trained, volunteer counsellors were in a position to offer specialised counselling to those affected by Motor Neurone Disease, across Scotland.

Counselling was delivered face to face at a mutually convenient location such as a health centre and was provided free of charge for patients, their carers and others affected by the condition. The majority of clients were carers and the focus of the bereavement counselling was around ‘anticipatory’ grief: “It’s largely pre-counselling or preparing people for bereavement, which was always what we wanted to do, but that really seems to be making the majority part of it.”

"My view is that as soon as somebody is diagnosed with MND, they should be put into the palliative care side of it...as soon as you're diagnosed with it, then in my view, it's palliative care.” (CEO Voluntary sector service provider.)

(For further details, see Appendix 6, Vignette 3.)

Our survey asked schemes to report on the range of services that they delivered. The table below illustrates those adult schemes that provided services for people with conditions other than cancer.

Table 12 Number of adult schemes that reported providing services for patients with conditions other than cancer (% of all adult schemes.)

Respite in the home

N=88

Respite in a hospice

N=88

End of life care in the home

N=88

End of life care in a hospice

N=88

Support (including psycho-social)N=88

45 (51%) 11 (13%) 56 (64%) 16 (18%) 64 (72%)

Respite, end of life care in the home and social, emotional and psychological support, including bereavement services for patients with conditions other than cancer were clearly key objectives of a majority of schemes.

Some case study schemes made considerable efforts to increase the level of referrals for people with conditions other than cancer, but as the vignette and comments below demonstrate, this was an uphill struggle despite best efforts and working with specialist nurses.

Lottery funding provided an opportunity for a partnership between statutory and voluntary sector organisations to extend cancer services to those with non-malignant diseases, particularly heart disease and to develop additional services where gaps existed. Services included: extended out of hours

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nursing service; a specialist palliative care practice development nurse; home-chemotherapy and supportive treatments; extended social care provision; counselling; complementary therapies; volunteer befriending and sitting service; financial and welfare advice and a programme of further learning opportunities for health and social care professionals.

It was estimated that more than 8000 people (patients, their carers and health and social care professionals) benefited from these activities over the course of the grant life. Almost 50% of beneficiaries were caregivers and patient’s families. A specialist palliative care social work team was able to arrange respite to provide "relief for the carer." (Service provider)

However, despite best efforts to achieve a 10% caseload, just 8% of those referred for respite in the final year had conditions other than cancer.

(For further details, see Appendix 6, Vignette 5.)

The quotations drawn from interview transcripts provided below, illustrate some of the frustrations experienced by (mostly) healthcare professionals, who were attempting to promote the extension of palliative care for people with conditions other than cancer.

"I think it's something like 3% [of referrals] have been non-cancer... but I feel convinced that there's still a lot out there and I still think that there's an element of training healthcare professionals, that this service is for adults, irrespective of diagnosis at end of life." (Manager, adult hospice at home service.)

“Those patients [with conditions other than cancer] are going to be going through acute services aren’t they, at some point so, at that point I think it’s probably… GPs should be making those links, because they should be aware of what’s happening with those patients. So there is a long way to go with education, a long way to go. (PCT lead adult hospice at home service.)

Despite the fact that we engaged various training and education processes at the outset, posters, various communication, newsletters, a whole range of communication devices and medium. Using the [specialist] nurses… despite all of that, we’ve had very few of those people through. (Project co-ordinator, hospice at home scheme)

“The non-cancer referrals we’re still not getting an awful lot of those, we have had some, but not as many as the cancer referrals. I mean in the last year I’ve identified that we’ve had five non-cancer referrals.” (Project co-ordinator, hospice at home scheme.)

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We discuss further the issue of turning an unmet need (i.e. patients with conditions other than cancer) into an actual client base in the following section on referrals.

4 6 ReferralsOur findings relating to turning abstract need into an actual client base were the same for this evaluation as those of the Living with Cancer initiative evaluation and we repeat them here.

The reality on the ground often turned out to be much more complex than schemes assumed when they submitted their initial estimates of the numbers and types of beneficiaries they would serve. It is possible that the grant application process imposed a (perceived at least) need for a degree of precision and confidence about these guesstimates of need that actual local knowledge could not sustain. Be that as it may, even where the original estimates turned out to be accurate, schemes were seldom in a position at the outset to be able to identify and locate the individuals who constituted the unmet need. Turning an abstract unmet need into an actual clientele required considerable effort and ingenuity on the part of schemes.

In our survey, we asked schemes to tell us which agencies their referrals had come from and which was the main referral agency. The table below sets out all referral agencies and the main referral agency.

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Table13 All referral agencies and main referral agency (% of all schemes)

Referral agency All adult schemes N=88

Main referrer adult

All children’s schemesN=85

Main referrer children’s

District nurses 57 (65%) 21 (24%) 18 (21%) 1 (1%)

Community nurses 47 (53%) 7 (8%) 68 (80%) 34 (40%)

Specialist palliative care nurses

55 (63%) 9 (10%) 55 (65%) 8 (9%)

GPs 52 (59%) 8 (9%) 40 (47%) 2 (2%)

Community Paediatricians

3 (3%) 64 (75%)

Hospital paediatricians 6 (7%) 68 (80%) 15 (17%)

Hospital consultants 41 (47%) 6 (7%) 42 (49%) 3 (4%)

Social services 51 (58%)** 3 (3%) 64 (75%) **2 1 (1%)

Local voluntary health organisation

24 (27%) 20 (24%)

Local voluntary non-health organisation

19 (22%) 22 (26%)

Self referral 32 (36%) 51 (60%) 3 (4%)

*Other 30 (34%) 12 (14%) 22 (26%) 8 (9%)

*’Other’ mainly included other groups of nurses that schemes did not consider fitted within our suggested categories (e.g. hospital nurses and hospice nurses); occupational therapy, physiotherapy and education.

Although there were differences in referral patterns between adults and children’s schemes, these were almost all predictable and easily accountable (such as the importance of paediatric referrals in children’s palliative care, or district nurse referrals for adults.)

The only significant difference that was not expected was between adult’s and children’s schemes reporting of social services which was significant at: p= <0.05. This may be due to the difficulties that we described in terms of relationships between some health and social care agencies in Section 3 5 1. None of the remaining differences were statistically significant.

It is not surprising that district and community nurses were most frequently mentioned by adult and children’s schemes respectively and were also the

2 Chi square = 5.83; DF 1; p = 0.02

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main referral agency. These nurses would have had the greatest contact with adults and children with palliative care needs in the community.

We also asked whether referrals were made appropriately (for example, the patient was in need of palliative care services), at the right time (for example, soon enough for a relationship to be established with the patient and carers), and whether the referrals process had improved over time. Our previous interim reports indicated that many services took some time to become established as referral agencies needed to develop confidence in them.

Table 14 Appropriateness and timeliness of referrals (% of all schemes)

Adult agreed (strongly or agree)

N=88

Adult disagreed (strongly or disagreed)

N=88

Children’s schemes agreed (strongly or agree)N=85

Children’s schemes disagreed (strongly or disagreed)N=85

Some referrals were inappropriate

24 (27%) 30 (34%) 26 (31%) 31 (36%)

Most referrals were made at the right time

51 (58%) 6 (7%) 56 (66%) 6 (7%)

Over time, the referral process improved

47 (53%) 7 (8%) 55 (65%) 4 (5%)

These findings suggest that in some cases, inappropriate referrals were made to both adult and children’s schemes. This was often due to a lack of understanding on the part of the referral agency.

A high proportion of schemes agreed that referrals were made at the right time, which often avoided crisis situations arising. It is comforting that more than half of all schemes reported that the referral process improved over time, often as a result of education and improved communication with referral agencies.

These findings have also been confirmed by the Bristol team (Beringer, 2007) in their study on staff perspectives of working within the BIG Lottery-funded children’s teams.

Schemes mostly operated an open referral system:

“I do have an open referral system and anyone can refer to me.” (Specialist children’s palliative care nurse.)

Whilst our survey findings demonstrated that the majority of schemes received referrals from community nurses, some case study schemes reported that most of their referrals came from within the acute sector:

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“The majority of the referrals really come from the acute sector.” (Project lead, children’s hospice at home service)

The reason for this could be that some of the children’s hospice at home schemes were located within hospitals and had close contact with the patients and staff on the wards.

Other case study schemes reported that they were able to assist with discharge planning from the acute sector.

“We have been encouraging community hospitals to make referrals to our Hospice at Home, as part of discharge planning and a couple of instances of that have been really, really helpful.” (Palliative care nurse, adult hospice at home scheme.)

Case study schemes commented on the value of having referrals made early enough for the hospice at home teams to make themselves known to families, in order to build a relationship:

“I'd like to introduce them as early as I can, even if they're not actually needed so that they may have met one or two of the nurses, perhaps they've gone and done an afternoon sit or relieved somebody while they went shopping or something like that so that if I do need a big input in the last few days or weeks they'll already know the service and have identified some of the nurses… you can have somebody who's still got weeks to go, but there's problems with agitation, there's poor management of the pain control and you might need to introduce nurses for a period of a week or ten days, because they don't want to go into the hospice, they don't want to go into hospital, but you need to get it right and you can pull them out and may be go back in again. .” (District nurse, adult hospice at home scheme.)

Some case study schemes talked about the difficulties facing their community colleagues in knowing when to refer:

“When the [community] teams are talking about … when do we refer …I think if a patient has a need that can't be met by the existing team, you source the people who can meet the needs, and if that happens to be palliative care or I don't know… whoever…you make that contact …on behalf of the patients. So it's just about …knowing where the services are and who to access… people are looking for some magic point to refer people into palliative care. And I think by the nature of the disease, that that magic point doesn't exist, but if the patient has a need that can't be met by the Heart Failure Team, but can be met by the specialists in palliative care, then …. that's the point you access it.” (Heart failure specialist nurse, hospice at home scheme.)

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“It has to be that at some point along the patient trajectory, that the issue of palliative care and the pathway, where the patient is in terms of pathway, enables us to pull together…and from that we hope the referral criteria will become more clear. But it's not at the moment, it's not clear.” (Specialist palliative care nurse, adult hospice at home scheme.)

We asked all adult schemes (only) to estimate the total numbers of male and female beneficiaries, (under and over 65) i.e. patients and all their informal carers. The response rate to this question was lower than anticipated (46% of adult scheme respondents), as many schemes had not collected appropriate data in order to respond with any degree of confidence.

Table 15 Mean numbers of patients and carers aged under and over 65

Mean numbersMale patients aged under 65 86.7Male patients aged 65+ 189.7Female patients aged under 65 121.4Female patients aged 65+ 183.3Carers, male aged under 65 101.0Carers, male aged 65+ 206.2Carers, female aged under 65 151.0Carers female, aged 65+ 223.2

These numbers need to be interpreted with caution, as we know that data was not rigorously collected in this format and that whilst some schemes made an effort to provide estimates, others did not respond to this question at all.

It is likely that the number of patients recorded is a more accurate reflection than the number of carers, as it was frequently estimated that each patient had just one carer, which may not have reflected the true situation, and is likely to under-represent the number of carers, including close family, that may have benefited even in some small way, from these services.

What is apparent from this table is that a higher percentage of patients receiving services were aged over 65 and of these that male patients accounted for slightly more than female patients. For the group of patients aged under 65, females exceeded males. The same conclusions can be drawn about carers, i.e. that most carers were aged over 65, and not surprisingly, more carers were female.

A number of schemes reported that the reasons for referral were often due to carer needs rather than patient needs:

“If you look at the reasons for referral, a lot of reasons for referral are for support for the families, are for respite, that's one of the greatest needs, rather than the actual ..very skilled specialist nursing, although

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there is a need for that, so it's getting that balance.” (Key stakeholder, adult hospice at home scheme.)

“67% of referrals were for carer respite.” Service co-ordinator, adult hospice at home scheme.)

“In terms of numbers, I guess there might well be more carers benefit from this.” (Social services manager, adult hospice at home scheme.)

“A lot of the services such as counselling, such as complementary therapies are direct to the carer, which of course enables them, and again this is a difficult area that you can't basically measure, to see how much better that then makes them able to care.” (Service co-ordinator, adult hospice at home scheme.)

Others acknowledged that the needs of the patient were their priority, but that their focus was also on the family.

“The patient is the main focus, because yeah, we ensure that the patient has a good death and then also to give time to the families as well… once I've finished with the patient, got the patient settled I would then go back to the family and then sit down and talk to them.” (Lead nurse, adult hospice at home scheme.)

There had been fears initially, that by adopting a very broad and holistic definition of palliative care, schemes might be opening the ‘flood gates’. However, this did not happen and indeed, many adult schemes struggled to raise awareness amongst health and social care professionals who might have been likely to refer people with conditions other than cancer. This largely related to a lack of understanding about how palliative care services might benefit this group of people, and concerns about when to refer, as we have discussed above.

Although many schemes put enormous effort into raising awareness amongst health and social care colleagues, there was often a sense that they were struggling against the tide.

“We’ve tried really, really hard to inform people what’s going on, done quite a few drop in sessions, lots of information out to people, lots of booklets, and then you still get people saying that they didn’t know some of these services existed. And I think that to me is the biggest disappointment, because there’s been an awful lot of effort and energy put into that.” (Key stakeholder, adult hospice at home service.)

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4 7 Key points

Both adult and children’s programmes were developed to meet the needs of the entire family (sometimes including extended family), and many addressed social and psychological functioning.

Specific services were set up for siblings of children with life-limiting conditions, providing them time and space of their own.

Grant schemes within the children's programmes addressed the needs of adolescent and young people, but found that transition to adult services was problematic.

Health and social care professionals benefited from having access to increased levels of information and training on palliative care and other associated issues.

Schemes made considerable efforts to increase the level of referrals for people with conditions other than cancer. Turning abstract need into an actual client base turned out to be more complex than first anticipated.

Nurses working in the community were the most reported referral agencies, with district nurses being the main referrer for 24% of adult schemes and community nurses for 40% of children schemes.

The difference between social services referrals to adult services and children’s services was statistically significant and may reflect cultural differences between statutory children’s health and social care organisations.

27% of adult schemes and 31% of children’s schemes reported that some referrals were inappropriate. 58% of adult schemes and 66% of children’s schemes agreed that referrals were made at the right time. 53% of adult schemes and 65% of children’s schemes agreed that the referral process improved over time.

The highest percentage of patients receiving services were aged over 65 years and male patients accounted for slightly more than female patients. More carers were aged over 65 and female.

Key learning points for service providers and commissionersSibling services require resources for planning and transporting siblings to groups and events.

Transition to adult services for adolescents is currently problematic as there are few services available to cater for the needs of this group.

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Increasing the level of referrals for patients with conditions other than cancer requires considerable effort.

Health and social care professionals value additional training and education on palliative care.

Referrals to end of life care services are inherently problematic and require a good understanding of the needs of the patients and carers and the service availability.

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5 Why did grant schemes work? 5 1 Success factorsMany of the schemes took time to become established, as we have discussed here and in our previous interim reports. However, within the time taken to become established, the new projects often developed their informational materials; reviewed the staffing required to meet the local needs and developed relationships within and across palliative care service provision.

“You can get over burdened if you're not careful very, very quickly you know and for me that was a fundamental part and it was actually establishing that structure of support and we focused a lot of time in that first year and that's why neither of us actually got hands onto families until we had that in place” (Children’s Bereavement team)

By identifying the gaps in existing service provision, many schemes developed effective services to fill them.

“One of the successes, is thinking through really what were our real gaps, not just opportunities for development, but really thinking about what our current gaps in the service are, what is really going to make a difference to the patient.” (Key stakeholder, adult hospice at home service)

5 1 1 Service championsThere were a number of service champions, often people at a senior level who had recognised the level of unmet need and contributed to the original grant proposal. These people were therefore often well placed to ensure that key stakeholders were aware of the developments and benefits and that the schemes were considered at strategic levels, so that they were included within the Local Development Plans (LDPs), and in some examples, as a mainstream service.

The first of these examples was located in Northern Ireland, where although there has been a review of services, the Lottery-funded grant scheme secured funding through the Eastern Health and Social Services Board and was expected to form part of a national strategy for the development of services for people with conditions other than cancer.

The Huntington’s Disease scheme has been championed at strategic level, with funding obtained for a second nurse post within the EHSSB. Permanent ongoing funding has been secured from the Board. (Although this may be subject to future scrutiny under the Review of Public Administration) (For further details, see Appendix 6, Vignette 1)

The second example was a voluntary sector scheme, where the parent organisation was a key player in the development of the Scottish Neurological

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Alliance, which lobbied and succeeded in gaining the support of Quality Improvement Scotland, (QIS) to carry out a pre-scoping exercise leading towards the development of standards for neurological conditions. This organisation also worked closely with the Scottish Partnership for Palliative Care (SPPC) and the Scottish Council for Voluntary Organisations (SCVO) and has been successful in raising awareness of the needs of people with conditions other than cancer at a strategic level. This organisation, whilst small, might be described as ‘punching above its weight.’

Lottery funding for this Motor Neurone Disease counselling service is due to continue beyond the life of this evaluation and thereafter, sustainability of the service is likely through extended fund-raising. However discussions have also been ongoing with Health Boards and the Scottish Executive for additional long-term funding and security. (For further details, see Appendix 6, Vignette 3.)

Effective project leads (or project coordinators) were also key to the success of schemes. In the example below, even though there had been no specific budget for a co-ordinator, a key person was willing to take on the role. The success of the scheme was widely attributed to his efforts:

"And it's almost like he's a conductor in a way and he's got these different parts of the orchestra who know what they're doing and get on with it. And if you're given something which you're passionate about, you can do it." (Stakeholder, adult hospice at home scheme.)

5 1 2 Partnership workingWe have already reported in detail on organisational partnerships and integration into the local economy of health and social care. (Chapter 3 Section 5 1) Not surprisingly therefore, partnership working was also a contributory factor to success. The example below highlights how a multi-agency, multi-sector partnership developed and delivered successful services. There was strong evidence here of a history of partnership working, particularly between statutory and voluntary sector organisations. An additional factor here was that organisational reconfiguration did not feature during the course of the grant life.

This three-year adult palliative care grant scheme built on the experience and learning of an earlier BIG Lottery Fund Living with Cancer grant scheme: Offering Options. Partnership working was key to the success of both schemes, and evolved from an effective steering group made up of a range of highly committed stakeholders from statutory and voluntary sector organisations. (For further details, see Appendix 6, Vignette 5.)

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5 1 3 Effective steering groupsSteering groups were another key factor in the success of (some) schemes, but only if the participants were willing to attend and were committed to the service development as the two examples provided below demonstrate.

“It's been really beneficial, because the steering [group]...everybody is committed." (PCT lead, children's hospice at home scheme.)

"It's just the people round the table who are committed…to the services that they're providing" (Modern Matron, adult hospice at home scheme.)

5 1 4 Teams Both adult and children’s schemes worked best where there were large enough teams to be able to provide appropriate support mechanisms and not allow a single person to take on greater responsibility than necessary. In our previous interim reports we have described how working in people’s homes can leave staff feeling isolated.

The location of the team was also an important factor. For those children’s teams that were located close to hospital wards, this was found to provide access not only to the children and their families during periods of admission, but also access to clinical staff such as hospital consultants. This proximity on occasion facilitated early discharge.

The importance of location was confirmed in the findings of research conducted by the Bristol team that ran the children’s palliative care course and had contact with a number of children’s teams throughout the grant period. (Beringer, 2007)

5 1 4 1 Effective support mechanismsEffective support mechanisms were essential to maintain the efficiency of staff and to ensure their physical and emotional well-being, particularly within the adult hospice at home schemes, where a number of patients died whilst receiving end of life care.

Most of the schemes had a robust induction period:

“They [palliative care nurses] have a very robust induction period, with a number of shifts spent at the in-patient unit at the hospice, because they will be exposed purely to palliative care patients in that setting. So they will do an early, late and a night shift in that setting and have the support of people who are totally devoted to specialist palliative care. They also spend shifts with the district nurses and the community palliative care nurse specialists. So it's very rounded and then there's all the sort of mandatory training. They also have a two-day

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introduction to palliative care and then they have communication skills training.” (Nurse manager, adult hospice at home scheme.)

The majority of schemes recognised the importance of good support mechanisms for staff:

“I have one to one support with a clinical psychologist, who works with [the] children who we work with and the other one is I have the psycho-counsellor from X [locality] which is group supervision. I can also access Y or Z [nurse managers] if I have an issue that I'm not happy about.” (Specialist children’s palliative care nurse.)

“The staff have clinical supervision, we have regular team meetings, we have multi disciplinary team meetings as well as meetings with the senior nursing team…. I often have debriefing sessions, that the chaplain actually puts on and there's lots of education and so that's opportunities for education, all the staff have appraisals and professional development plans.” (Modern Matron, adult hospice at home scheme.)

The Bristol team also identified staff support as key, suggesting that sometimes a sense of isolation emerged due to the “relative rarity of their [children’s palliative care nurses] roles together with a lack of common understanding, even among other health professionals, about what palliative care for children involves.” (Beringer, 2007)

5 2 Key points

Some services were ‘championed’ by people at strategic levels who were committed to the development of palliative care services, particularly for those with conditions other than cancer.

Multi-sector and multi-agency partnerships contributed to the success of schemes. Steering groups, where they were put in place were also a contributory factor.

Larger teams appeared to be more effective in supporting each other. A majority of schemes provided additional support mechanisms to ensure the (physical and emotional) well being of staff.

Key learning points for service providers and commissioners Service champions can be key to the success of service

development. Teams need to be large enough and have the resources to provide

effective services in the home. Palliative care staff need good models of induction and continuing

support mechanisms.

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6 SustainabilityIn terms of sustainability, we asked all schemes if they had tried to obtain continuation funding. The tables below illustrate which schemes attempted to obtain continuation funding, which were successful and the extent of the funding they secured. Voluntary sector schemes are indicated by light shading throughout.

6 1 Findings adult schemes

Table 16 Adult schemes that tried to obtain continuation funding (% respondents)

Adult voluntary Sector England N = 8

Adult statutory sector England N = 28

Northern Ireland Voluntary sectorN = 9

Northern Ireland Statutory sectorN = 9

ScotlandVoluntary sector

N = 19

ScotlandStatutory sector

N = 14Tried to obtain funding 8 (100%) 27 (96%) 8 (89%) 6 (67%) 11 (58%) 6 (43%)Did not try to obtain funding 0 1 (4%) 1 (11%) 3 (33%) 8 (42%) 8 (57%)

The table above demonstrates that, as might be expected, most adult schemes attempted to secure continuation funding, with the exception of umbrella grant schemes across Scotland. We discuss this finding below.

We then asked those schemes that had attempted to secure continuation funding if they had been successful in securing funding that would allow them to continue providing the service(s) originally funded by BIG Lottery in its entirety, or if main or minor elements of the service had been maintained through continuation funding. The tables below provide the responses for adult schemes.

Table 17 Adult schemes continued in their entirety (% of those that had tried to obtain continuation funding)

Adult voluntary Sector England N = 8

Adult statutory sector England N = 27

Northern Ireland Voluntary sectorN = 8

Northern Ireland Statutory sectorN = 6

ScotlandVoluntary sector

N = 11

Scotland Statutory sector

N = 6Continued service in their entirety

4 (50%) 15 (56%) 2 (25%) 4 (66%) 4 (36%) 0

Funded byNS = Non-statutory and S = Statutory

4 S (2C) 13 S (1C) 1 S 3 S (3C) 1NS

(c) = combined continuation funding secured from both statutory and voluntary sector organisations.

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The table above shows that adult schemes within both the voluntary and statutory sectors mainly secured continuation funding from the statutory sector.

Table 18 Adult schemes main elements continued (% of those that had tried to obtain continuation funding)

Adult voluntary Sector England N = 8

Adult statutory sector England N = 27

Northern Ireland Voluntary sectorN = 8

Northern Ireland Statutory sectorN = 6

ScotlandVoluntary sector

N = 11

Scotland Statutory sector

N = 6Main elements continued

3 (38%) 9 (33%) 1 (13%) 0 2 (18%) 1 (17%)

Minor elements continued

3 (11%)

Funded byNS = Non-statutory and S = Statutory

1 NS

2 S 10 S (1C) 1 S (1C) 2 S 1 S

(c) = combined continuation funding secured from both statutory and voluntary sector organisations.

As with those schemes that secured continuation funding for the service(s) to continue in its entirety, the majority of adult schemes that secured funding for the main (and minor) elements of the service that had been provided with BIG Lottery funding, also secured statutory sector funding. Some information was missing from survey responses.

One Scottish statutory-sector scheme reported that another organisation had taken over providing the service originally funded by BIG in its entirety. One adult voluntary sector scheme in England and one statutory sector scheme in Northern Ireland also reported that another organisation had taken over providing the main elements of the service(s) originally funded by BIG Lottery.

We asked schemes if their continuation funding was for an indefinite period or time-limited. The table below illustrates the level of indefinite funding secured.

Table 19 Adult services continued indefinitely (% of those that had tried to obtain continuation funding)

Adult voluntary Sector England N = 8

Adult statutory sector England N = 27

Northern Ireland Voluntary sector N = 8

Northern Ireland Statutory sector N = 6

ScotlandVoluntary sector

N = 11

Scotland Statutory sector

N = 6Service continued indefinitely

7 (88%) 17 (63%) 4 (50%) 2 (33%) 8 (73%) 3 (50%)

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6 1 1 Discussion on the sustainability of adult services

EnglandFrom the survey data we can conclude that 86% of the adult schemes in England that had sought continuation funding were successful in securing funding to continue their service(s) either in their entirety, or main elements. In addition, one scheme had been taken over by another organisation that would continue services previously funded through the BIG Lottery. The majority of these schemes (77%) were funded indefinitely. There remained some uncertainty about the duration of funding for the remainder.

“Confusing really, but basically the service is continuing, the PCT has commissioned the service from X [hospice] in partnership with Marie Curie. The PCT has put in a pot of money, X [hospice] has put in a pot of money, Marie Curie has put in a pot of money.” (Voluntary sector lead, adult hospice at home scheme.)

“The PCT haven't actually at this moment made any firm commitment to us, but the service will continue, but it looks like they will then change it slightly.” (Project co-ordinator, adult hospice at home scheme.)

Our data confirm that statutory sector organisations (PCTs) were the main commissioners of continuing adult palliative care services in England, although there was the suggestion that services may continue to be delivered in a slightly different way, for example, by using health care assistants rather than nurses, as was the situation at one case study site, or altering the timing of the availability of services as was the situation at another case study site.

Northern IrelandIn Northern Ireland, 50% of the schemes that had sought continuation funding were successful in securing that funding to continue their service(s) either in their entirety, or main elements. In addition, one scheme had been taken over by another organisation that would continue the services previously funded through the BIG Lottery Fund. Successful schemes reported that funding (from a mixture of statutory and voluntary sector organisations) was for an indefinite period.

ScotlandA number of the Scottish grant schemes were time-limited and achieved their objectives within the specified time-scale, by virtue of producing information, developing training or purchasing / providing equipment. Of those schemes that had sought continuation funding, 41% were successful in securing funding to continue their service(s) either in their entirety, or main elements. In addition, one scheme had been taken over by another organisation to continue the services previously funded through the BIG Lottery Fund. It was reported that services would be continued indefinitely in 65% of schemes, regardless of funding. The funding picture is mixed in Scotland, with a high

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level of voluntary sector schemes that secured funding from a combination of voluntary and statutory sector organisations.

6 2 Findings children’s schemes The tables below provide details of the continuation funding for the children’s programmes in England. Information on sustainability was obtained from 82 (96%) of the 85 children’s schemes that responded to the survey.

Table 20 Children’s schemes that tried to obtain continuation funding (% respondents)

Children’s voluntary sector bereavement

N = 9

Children’s statutory sector bereavement N = 12

Children’s home-based voluntary sector N = 5

Children’s home-based statutory sector

N = 43

Children’s hospice (voluntary sector)N = 13

Tried to obtain funding

8 (89%) 12 (100%) 3 (60%) 41 (95%) 11 (85%)

Did not try to obtain funding

1 (11%) 2 (40%) 2 (5%) 2 (15%)

As with the adult schemes, a high proportion (91%) of children’s schemes attempted to secure continuation funding. The survey response rate for the children’s programme was the lowest overall, which raises some cause for concern.

We asked schemes if they had been successful in securing funding that would allow them to continue providing the service originally funded by BIG in its entirety, or if not, whether main or minor elements of the service had been continued through continuation funding. The tables below provide the survey responses for children’s schemes.

Table 21 Children’s schemes continued in their entirety (% of those that had tried to obtain continuation funding)

Children’s voluntary sector bereavementN = 8

Children’s statutory sector bereavement N = 12

Children’s home-based voluntary sector N = 3

Children’s home-based statutory sector N = 41

Children’s hospice (voluntary sector)N = 11

Continued service in their entirety

6 (75%) 4 (33%) 1 (33%) 14 (34%) 2 (18%)

Funded byNS = Non-statutory and S = Statutory

3 NS 2(C ) 4 S 1 NS 1 (C) 13 S 1 NS 1 S

NB * (C) = a combination of voluntary and statutory sector funding.

One child hospice scheme, one statutory sector bereavement scheme and two statutory sector children’s home-based schemes reported that another organisation had taken over providing the services originally funded by BIG in their entirety.

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The continuation picture for children’s services is different to the adult picture, where the voluntary sector picked up a higher percentage of voluntary sector schemes. This is not surprising, as the voluntary sector children’s schemes were largely providing ‘stand alone’ services, for example bereavement services, attached to children’s home-based schemes that were generally located within the statutory sector and hospice services.

Table 22 Children’s schemes main elements continued (% of those that had tried to obtain continuation funding)

Children’s voluntary sector bereavementN = 8

Children’s statutory sector bereavement N = 12

Children’s home-based voluntary sector N = 3

Children’s home-based statutory sector N = 41

Children’s hospice (voluntary sector) N = 11

Main elements continued

1 (13%) 1 (8%) 13 (32%) 4 (36%)

Minor elements continued

3 (13%)

Funded byNS = Non-statutory and S = Statutory

1 (C) 1 S 1 (C) 13 S 2 NS 1 S

NB. (C = a combination of voluntary and statutory sector funding)

One voluntary sector child bereavement scheme and one children’s home-based schemes reported that another organisation had taken over the provision of main elements of the service originally funded by BIG.

Two children’s statutory sector home-based schemes reported that another organisation had taken over the provision of minor elements of the services originally funded by BIG.

Table 23 children’s services continued indefinitely (% of those that had tried to obtain continuation funding)

Children’s voluntary sector bereavementN = 8

Children’s statutory sector bereavement N = 12

Children’s home-based voluntary sector N = 3

Children’s home-based statutory sector N = 41

Children’s hospice (voluntary sector)N = 11

Continued service indefinitely

5 (63%) 6 (50%) 2 (66%) 27 (66%) 12 ( >100%*)

* NB. Some schemes may have continued without seeking continuation funding.

6 2 1 Discussion on the sustainability of children’s servicesThe overall sustainability of the children’s programme was in doubt for some time, with evidence of considerable uncertainty about the extent to which new statutory sector organisations (PCTs) would be willing and able to pick up the funding of the Lottery-funded services or commissioning of these services. Mergers, reconfiguration and personnel changes meant that the new organisations were often not familiar with the Lottery-funded services and did not necessarily feel obliged to commit to them.

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The children’s hospice sector was able to bid for a share of the £27 million over three years that had been announced in May 2006, for distribution annually on the basis of successful applications.

In some cases, anecdotal evidence showed that although many of the voluntary sector partners had originally anticipated that schemes would be picked up in their entirety by the lead PCT, once it became clear that this was not likely to be the case (through PCT mergers and publicity surrounding financial constraints) they looked to their parent organisation for further funding and did not attempt to secure external funding.

Voluntary sector schemes appeared to have faired better than statutory sector schemes, some of which were still in negotiation with prospective commissioners.

“The difficulty is with the PCT organisation and the Trust and the structure…” (Stakeholder, children’s scheme)

From our survey data, we can conclude that just 41% of the children’s home-based schemes that reported they were seeking continuation funding were continued in their entirety. A further 35% were funded to continue main or minor elements of the service.

From our survey data and a review of all monitoring data for the children’s programme, we can report that 5 schemes were discontinued, including 3 home-based schemes and 2 (linked) bereavement schemes.

From the review of monitoring data, we have ascertained that a further 7 schemes (4 home-based schemes and 3 bereavement schemes) were successful in obtaining at least some funding from their local PCTs to continue their services and a further 4 schemes received funding from voluntary donations or a share of the £27 million Government funding. However, we do not have any information as to whether this funding was time-limited or for an indefinite period, or whether it funded the service in its entirety or partially.

Overall, from the information that was made available to us, we can report that 50% of the 135 Lottery-funded children’s schemes achieved some level of continuation. This is likely to slightly underestimate the true picture, as hospice schemes may have been successful in securing funding from the Section 64 monies mentioned above. It is also possible that despite best efforts, we have no information on the continuation or sustainability of 27 of the children’s schemes (18 home-based schemes; 3 hospice schemes and 6 bereavement schemes). This may be due to incorrect contact details, changes of personnel and organisations. It is possible that at least some of those schemes may have continued in some way.

Schemes reported that the elements that were not funded were generally those that were most valued by families, (as described in Chapter 4) relating to psycho-social care and support. Health commissioners restricted many

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schemes to providing clinical care, without the added “frills” that were possible within the Lottery funding period.

“We’ve been allocated funding … from the PCT … and that’s for the health side of things…So they’re funding our team here basically, the assistant practitioner, our support worker, and myself. They’re also providing 50% of the [bereavement] Centre monies … and the funding for the community dietician. But that leaves [voluntary sector organisations that provided respite and sibling support]. Now they’re not providing any funding for those two organisations. (Project lead, children’s home-based service.)

“And now it’s gone into mainstream funding from PCTs, we don’t have any social care funding or education, I mean that’s something that I need, or my [successor] needs to pursue in the next 12 month,.” (PCT lead, children’s home-based scheme)

Some of the case study schemes remained uncertain about the future.

“They [the PCT] will look at the costing, they’ll be saying how many children are these people seeing, how much are we paying them to see certain families… we’re such a small area, I just don’t think we have the numbers of clients….” (Manager of linked home-based and bereavement scheme)

Some staff resigned from their posts, as they were uncertain about future funding.

“I left because I was very unsure earlier on in the year about funding, whether or not I would have a job or an income after September.” (Nurse who had previously worked for a home-based scheme.)

Another issue of concern was that information was drawn from our survey, which resulted in a 63% response rate therefore at this stage we cannot draw conclusions about the outstanding children’s schemes. However, our findings are supported by the Bristol research team, who reported that: “only a handful of services in this sample [21 nurses from 12 BIG Lottery-funded children’s teams] had secured ongoing funding [at the time of the interview].” (Beringer, 2007)

6 2 1 1 The future of children’s home-based services

There were 66 ‘home-based’ teams set up with Lottery grants. Survey responses indicated that just 14 (34%) of the statutory-sector home-based schemes were continued in their entirety and 13 (32%) secured funding for main elements to continue.

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A number of respondents from the children’s home-based schemes added written comments on the end of funding survey, regarding service delivery beyond the Lottery-funding. These comments suggested that some of the previously Lottery-funded services would be delivered in a different way in the future. One scheme reflected that once their grant restrictions were lifted, they would expand their services beyond palliative care to include all children with continuing care needs. However, other schemes reported that they would be required to continue in a reduced capacity. The quotes below, drawn from survey responses, reflect a common theme.

“It is frustrating that at the moment, we have no guarantees that the service we give to children and families… will continue in its entirety.” (Survey response)

“We are still in discussion with our PCT regarding funding, but have been told that the service will have to change, if it is funded, which is uncertain.” (Survey response)

“ [Reduced] funding from one of the three PCTs we serve means that we have to provide a 2-tier service based on post-code.” (Survey response)

Changes involved at least two home-based schemes (including one case study scheme) transferring elements of their services to established community children’s nursing teams rather than the specialist teams; several schemes reported that social workers who had been part of their home-based team would no longer be funded through their respective local authorities and that their contribution would be lost.

A number of schemes indicated that they were still in negotiation with commissioners to continue their services. Schemes reported that they had submitted business cases and proposals, as requested, but changes to the configuration of PCTs, personnel movement and financial pressures meant that they did not have a response, leading to considerable uncertainty for both service users and providers.

Other schemes reported that whilst they had secured short-term funding, the longer-term provision of services remained uncertain. Many of the schemes had represented multi-agency, multi-sector partnerships and there had been an expectation at the outset that continuation funding would be forthcoming for the entire service from the statutory sector lead organisation. This sometimes turned out not to be the case, and whilst some of the voluntary sector partners were able to support continuation, others were not.

We feel that there could be some benefit in conducting a follow-up survey of the children’s home-based teams, to determine their future funding and service delivery arrangements more systematically and in greater detail. A proposal has been submitted to the Department of Health to undertake this work, but no decision has been taken at this time.

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6 3 Key points

Most adult schemes attempted to secure continuation funding, with the exception of Scotland, where some of the schemes were time-limited and achieved their objectives within that time-scale.

83% of the adult schemes in England that had sought continuation funding were successful in securing funding to continue their service(s) either in their entirety, or main elements. The majority of these schemes were funded indefinitely. There remained some uncertainty about the duration of funding for the remainder.

Statutory sector organisations were the main commissioners of continuing adult services in England.

47% of the schemes in Northern Ireland that had sought continuation funding were successful in securing funding to continue their service(s) either in their entirety, or main elements. A mixture of statutory and voluntary sector organisations funded the majority of these schemes for an indefinite period.

50% of the schemes in Scotland that had sought continuation funding were successful in securing funding to continue their service(s) either in their entirety, or main elements. 38% of schemes were continued indefinitely. The funding picture is mixed, with a higher level of voluntary sector schemes that secured funding from a combination of voluntary and statutory sector organisations.

41% of the children’s schemes that had sought continuation funding were continued in their entirety.

76% of the children’s schemes that responded to the survey were continued either in their entirety or with main or minor elements being funded.

5 schemes were discontinued.

Elements that were not funded were generally those that were most valued by families, relating to psycho-social care and support.

From the information available, 50% of the 135 children’s schemes that were funded achieved some level of continuation.

Continuing children’s home-based services may operate in a different way, and some will continue with reduced capacity.

Some children’s home-based schemes remain uncertain about longer-term sustainability.

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Key learning points for service providers and commissioners Planning for the continuation of new projects needs to start early in

the development of the service with robust data to support the business case proposed.

Health service reconfiguration can hamper service continuation.

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7 Conclusions 7 1 Achievements The BIG Lottery Palliative Care initiative has to be accounted a success on a variety of counts.

7 1 1 Diversity and innovation First, in funding a wide range of innovative schemes providing information, support and care for adults and children with and affected by cancer and other non-malignant conditions, this initiative has undoubtedly succeeded in making a significant contribution to enriching and diversifying the range of services provided to them. Also, by stimulating and funding innovation in mode of delivery and in prioritising the needs of individuals, families and communities previously under-served by existing forms of provision, it made care and support accessible to many. Our case studies provided rich evidence of a huge diversity of provision, which our respondents were adamant would not have been created without BIG Lottery funding.

7 1 2 Extending the boundariesPalliative care services had already embarked on the process of moving away from cancer as the traditional focus of care and from the hospice as the locus of care. Lottery funding has accelerated the diversification of services from cancer to non-cancer conditions, from the hospice to the community, and the home and from individual patients to families. In so doing, it has enabled service providers to address the needs of all sectors of society, including young people and people from black and minority ethnic groups.

7 1 3 Within sector and cross sector partnership working It is clear also that the initiative has succeeded in its stated aim of encouraging partnership working between agencies and across sectors in the development and delivery of palliative care. Our case studies and survey identified a wide range of pioneering partnerships often involving agencies and sectors – statutory and voluntary, health and non-health - with little (if any) prior experience of working together. Creating and sustaining such partnerships in the face of differing structures, systems, accountabilities and organisational cultures (all held to be inimical to effective partnership) often required intensive and sustained effort, but we were encouraged by the evidence of their robustness and by the overwhelmingly positive evaluations of them. We were encouraged also by the evidence that by the end of the initiative so many of the schemes felt able to report that they had achieved a good strategic fit with their local economy of cancer care and that other agencies were both aware of and valued the service that they were providing.

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7 1 4 Country differencesThe programmes in Northern Ireland and Scotland were administered in different ways to England and appear to have been successful in a) extending palliative care to conditions other than cancer and b) achieving sustainability (particularly Northern Ireland.) This is in part explained by the fact that the countries are relatively small, with a lower population base than England. The fact that the four Health and Social Services Boards in Northern Ireland appointed programme managers was beneficial to the schemes and largely ensured that they achieved status within strategic developments.

The end of the BIG Lottery Fund palliative care funding coincided with the emergence of a number of national strategies for England including: the Cancer Reform Strategy; End of Life Care Strategy and the Children’s Palliative Care Strategy. We are confident that this emerging policy framework will support the continued development of many of the achievements that Lottery funding has helped to bring about.

7 2 Challenges

7 2 1 Organisational change Health structures have been subjected to massive reconfiguration across England, in some cases twice during the course of the Lottery initiative. Whereas we described Living with Cancer grant schemes as being ‘orphaned’ in infancy (Petchey et al, 2006), many of the palliative care grant schemes, particularly within the children’s programme, were orphaned as they approached maturity. Organisational memory was sometimes lost, and indeed, the institutional commitment to continuation funding that had been assured at the outset, as part of the original funding process was lost in some cases, not only through the reconfiguration of health structures, but also due to financial constraints facing the new organisations.

7 2 2 Sustainability The impact of decisions about continuation funding of children’s services all too often resulted in the broadened out service that had been provided with Lottery funding, narrowing back to an essential clinical core, as PCTs were reluctant (and indeed constrained in their ability) to fund what was perceived as the ”frills,” (i.e. the psychological and social care aspects.) Thus, innovative attempts to integrate health and social care are likely to have been only partially successful. Many of the children’s schemes were delivering social care and support but of those that have achieved sustainability, a number reported that social care elements were withdrawn or placed in a position whereby funding was being sought from elsewhere, leading to some fragmentation.

7 2 3 Terminology and definitionsThe terms: ‘palliative care’; ‘end of life care’; ‘hospice’ and ‘hospice at home’ need to be clearly defined, so that the general public as well as health and social care professionals, across the statutory and voluntary sectors understand exactly what they mean, what sort of services are involved and for

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whom. It would appear that, once people do understand what they mean, they value the approach and philosophy that underpin this kind of care far more than other kinds.

The term palliative care appears to be used as a ‘catch all’ phrase, when in reality, although some of the services that were developed were highly specialised, the majority had been developed to provide supportive care.

7 2 4 Transition between young people’s and adult servicesOur perception is that, at the start of the palliative care initiative, children’s palliative care was already better integrated into children’s clinical services than adult palliative care was into adult clinical services where palliative care provision was patchier and more fragmented. While all of the Lottery-funded schemes were innovative, we observed the scale and pace of innovation to be significantly greater in the children’s schemes than adult schemes. There is a risk therefore, that the policy gap between adult and children’s palliative care services might actually have widened as a consequence of Lottery funding. Against this however, the development of palliative care for adolescents and young people has identified transition as a policy priority and we have been pleased to note systematic efforts to address the problem of transition by an increasingly wide number of the agencies and organisations involved.

In summary, therefore, the BIG Lottery Palliative Care initiative made a substantial contribution to developing innovative services for those people with palliative care needs and their families.

7 3 Key points

Lottery funding supported the development of service innovations, which enriched and diversified the range of services available for adults and children.

Lottery funding accelerated the diversification of services from cancer to non-cancer conditions, from the hospice to the community and the home and from individual patients to families.

The initiative succeeded in its stated aim of encouraging partnership working between agencies and across sectors.

There were differences in the administration of programmes across the United Kingdom.

Lottery funding coincided with a number of key palliative care policy developments.

Organisational change impacted on schemes, particularly within the children’s programmes.

Continuation funding for children’s services may result in a narrowing back to the clinical core.

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Definitions of palliative care terms need to be clearly explained to health professionals and the general public.

There is a risk that the policy gap between adult and children’s palliative care may have widened as a result of Lottery funding.

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Petchey, R.P., Carter, Y and Williams, J. 2006 Final report on the National Evaluation of the BIG Lottery Living with Cancer initiative. (www.biglotteryfund.org.uk/er_eval_living_cancer_report.pdf)

Review of Public Administration, Northern Ireland. 2006. Better Government for Northern Ireland. Final decisions of the Review in Public Administration. Belfast. Northern Ireland. (www.rpani.gov.uk)

Scottish Executive Health Department. 2000. Our National Health; A plan for action, a plan for change, Scottish Executive, Edinburgh.

Scottish Executive Health Department. 2001. The Scottish Cancer Plan 2001: Cancer In Scotland; Action for Change 2001, Scottish Executive, Edinburgh.

Scottish Partnership for Palliative Care. 2006 Joined up thinking, Joined up care. Report of the Scottish partnership for Palliative Care BIG Lottery Fund project: “Increasing access to palliative care for people with life-threatening conditions other than cancer.” Scotland.

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Thomas, K. 2003a. ‘The gold standards framework in community palliative care’, European Journal of Palliative Care 10 (3): 113–115.

Thomas, K. 2003b. Caring for the Dying at Home: Companions on a Journey, Radcliffe Medical Press, Oxford.

York Health Economics Consortium, 2007. Palliative Care Services for Children and Young People in England. An Independent Review for the Secretary of State for Health. York.

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Appendix 1 National overview of grant schemes

Overview of grant schemes across England

Strand Schemes led by statutory organisation

Schemes led by non-statutory organisation

Totals

Adult 44 (78%) 12 (22%) 56

Children’s Hospice

25 (100%) 25

Children’s Home Based

66 (93%) 5 (7%) 71

Children’s bereavement

21 (54%) 18 (46%) 39

Sample selection:

Level 1: 1 Adult - statutory1 Children’s Hospice - non Statutory1 Children’s Home- based / bereavement - statutory

Level 2: 4 Adult – 3 statutory / 1 non-statutory2 Children’s home-based – 1 statutory / 1 non-statutory2 Children’s bereavement –1 statutory / 1 non-statutory1 children’s hospice – non-statutory.

Overview of grant schemes across Northern Ireland

Health Board Total No. of schemes

Schemes led by statutory organisation

Schemes led by non-statutory organisation

Eastern 11 7 4Western 4 3 1Northern 5 3 2Southern 5 2 3Totals 25 15 10

Sample selection

Level 1: 1 statutory

Level 2: 1 non-statutory

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Overview of grant schemes across Scotland

Health Board Total no of schemes

Schemes led by statutory organisations

Schemes led by non-statutory organisations

Argyll and Clyde

5 2 3

Ayrshire and Arran

2 1 1

Borders 2 2

Dumfries and Galloway

6 3 3

Fife 4 2 2

Forth Valley 8 1 7

Grampian 6 2 4

Greater Glasgow

2 2

Highlands 2 1 1

Lanarkshire 4 4

Lothian 4 1 3

Orkney 1 1

Shetland 1 1

Tayside 5 4 1

Western Isles 3 3

Direct grants 4 4

Totals 59 21 38

Sample selection:Level 1: 1 National project non-statutory.

Level 2: 1 grant scheme, non-statutory.

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Appendix 2 Table of selected schemes

Funded Schemes Selected for Level One Case Study (in-depth)England

Lead organisation Status Strand Amount funded

Base Region

Short description

Primary Care Trust Statutory Adults £399,878.00 North East Development of current services through out of hours nursing support, home based therapies, complementary therapies, counselling, practical support and respite care; developing existing service partnerships.

Hospice Non-statutory Children's Hospice

£561,861.00 South East Expansion of services offered by children's hospice.

Primary Care Trust Statutory Children's Bereavement

£74,989.00 East Midlands

Development of home based bereavement service at a medical centre; targets siblings, parents and grandparents of hard to reach groups.

Primary Care Trust Statutory Children's Home-based

£399,987.00 East Midlands

Enhancement of existing services through play/art/music therapy; and lead community paediatric consultant; targeting minority ethnic and socially excluded children.

Funded Schemes Selected for Level Two Case Study (briefer)England

Lead organisation Sector Strand Amount funded

Base Region Short description

Primary Care Trust Statutory Children's Home-based

£399,865.00 London Partnership scheme to improve home-based services aims to be flexible and responsive to local needs.

Primary Care Trust Statutory Adults £399,960.00 South West Improvement of services, including 24 hour therapeutic, nursing, emotional and respite care; 3 nurses and administrator to be employed at hospice.

Family Service Unit Non-statutory

Children's Bereavement

£72,425.00 Yorkshire and the Humber

Families to be offered counselling and group work with Asian Social Worker and student on university diploma course.

Primary Care Trust Statutory Children's Home-based

£399,878.00 North West 24 service including nursing, care co-ordination, training for carers, home help, play therapy, nutritional advice, day and night respite, psychological and family support.

Primary Care Trust Statutory Children's Bereavement

£64,704.00 South East Employment of bereavement practitioner to support adolescents in their transition to adult services; develop out of hours provision with volunteer support.

Primary Care Trust Non-statutory

Adults £399,476.00 London Development of hospice at home scheme including new overnight nursing service, extended Marie Curie service; access to occupational therapy, physiotherapy, language therapy and dietician.

Primary Care Trust Non-statutory

Adults £399,476.00 London Development of hospice at home scheme including new overnight nursing service, extended Marie Curie service; access to occupational therapy, physiotherapy, language therapy and dietician.

Hospice Non-statutory

Adults £268,738.00 West Midlands

Day hospice and home based multi-disciplinary palliative care including physiotherapy, family therapy, social worker and Citizens Advice Bureau support.

Hospice Non-statutory Children's

Hospice

£337,909.00 Yorkshire and the Humber

Improve sibling and carer support and develop bereavement counselling by appointing 2 new staff, installing videophone links between children in the hospice and their families at home; provision of other new therapies.

Funded Schemes Selected for Level One Case Study (in-depth)Scotland and Northern Ireland

Lead organisation Sector Amount Funded

Base Region Short description

National disease association

Non-statutory £100,170.00 Glasgow (Scotland)

The scheme aims to improve the mental well being of all those affected by a specific life-limiting disease by providing a new telephone counselling service and by training volunteers to provide face to face counselling for people with the disease and their carers.

Hospital trust Statutory £126,236.00+ £68,000

Eastern Health and Social

Services Board (Northern Ireland)

The project will - i) assess the palliative care needs from a holistic perspective of people living with a specific life-limiting disease ii) Provide an innovative user and needs-led community based palliative care service.

Funded Schemes Selected for Level Two Case Study (briefer)Scotland and Northern Ireland

Lead organisation Sector Amount Funded

Base Region Short description

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Hospice Non-statutory £124,991.00 Southern Health and

Social Services

Board (Northern Ireland)

The provision of a ‘seamless continuity of care’ for discharged patients. The hospice nurse would co-ordinate the transfer of the patients palliative home care needs, catering specifically for the individual needs of the patient.

Hospice Non-statutory £130,244.00 Highland NHS Board

(Scotland)

To provide support in the family home to families with children with palliative care needs, train staff in other organisations who work with children with life threatening/ limiting disease. Carry out a needs assessment with young people with palliative care requirements

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Appendix 3 National stakeholder participants

Big Lottery Fund

Suzannah Beazley: Operations manager, London. (Now left).

Judith Hendley: Policy manager, London. (Now left).

Eric Samuel: Senior Policy Officer, Scotland

Julia Holmes: Programme manager, Scotland.

Joanne McDowell: Head of policy development & public affairs, Northern Ireland.

Gavin Adams: Programme manager, Northern Ireland.

Jill Wiltshire: Senior policy officer, health programmes, London.

Department of Health

Katrina McNamara-Goodger: Policy lead for children's palliative care nursing and advisor on children's services, England only. Involvement in programme from February 2002 and observer status on grant selection committee. (Now moved to free-lance consultancy post.)

Kathryn Halford: Children's nursing advisor, Department of Health. (2006-2007) Sue Hawkett: Nursing Officer, Cancer and Palliative care services, Department of Health. Involved in policy direction for programme; observer status on grant selection committee.

Professor Mike Richards: National Cancer Director, England.

England

Children’s strand

Barbara Gelb: Chief Executive Association of Children’s Hospices (ACH) Consultation and advice during programme development; committee member.

Ann Goldman: Paediatric Palliative Care Consultant, Great Ormond Street; Vice Chair of ACT

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Simon Lenton: Consultant Paediatrician; Chair of Bristol care pathway group; co-author of paediatric palliative care course for Lottery-funded schemes; previously advisor to the Department of Health on paediatric palliative care.

Adult strand

Ms Valerie Greenhill: Lead nurse, Mid Trent Palliative care strategy.

Mr Peter Tebbit: Palliative Care Development Adviser, National Council for Hospice and Specialist Palliative Care Services (now NCPC), commissioned by Big Lottery Fund to establish PCT target areas.

Lucy Sutton: National policy lead, National Council for Palliative Care.

Mary Casey: Joint professional advisor for palliative care to the Healthcare Commission and CSCI

Nick Pahl: International Development Director, Help the Hospices

Scotland

Dr Anna Gregor: Lead Cancer clinician for Scotland (Cancer Csar); Director of the SE Regional Cancer Advisory group.

Liz Porterfield: Head of the clinical strategy of cancer. Scottish Executive Health Department.

Patricia Wallace: Director, Scottish Partnership for Palliative Care.

Colin Brown: Branch head, Patients and Quality Division, Directorate General for Health.

Northern Ireland

Judith Hill: Chief Executive of Northern Ireland Hospice Care; Visiting Professor to the School of Nursing, Queens’ University, Belfast, and formerly, Chief Nursing Officer at the Department of Health, Northern Ireland.

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Appendix 4 Interview schedule for national stakeholders

Context.

1. Could you please briefly describe your role, function and responsibilities?

2. Could you please describe your perception of the relationship between NOF and the Government, and in particular, the Department of Health in relation to the palliative care Initiative?

3. Could you please explain the rationale for palliative care to be selected as a priority initiative for NOF funding?

Content.

4. In your view, what aspects of current palliative care services need to be changed, in terms of:

a) organisational cultures, (e.g. flexibilities; inclusiveness; sharing of information and ideas.)b) organisational structures (e.g. partnership working; infrastructure; human resources)c) systems and d) policy?

5. Why do these require change?

Process.

Workability

6. To what extent can the palliative care initiative meet the challenges as mentioned at 4 and 5.

7. How will you know if those objectives have been accomplished:(e.g. through the palliative care initiative or other means?)

Sustainability/ transferability.

8. To what extent should any changes become mainstream a) policy b) structures?

9. How would you expect the ‘normalisation,’ or mainstreaming process to be achieved?

10. Is there anything else that you would like to add?

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Appendix 5 Follow up interview schedule for national stakeholders

Discussion will extend across the UK, covering children’s and adult services, and in relation to adult services, both cancer and conditions other than cancer.

Context

1. Could you please briefly describe your current role, function and responsibilities?

a) Has your role changed over the life-time of the BIG Lottery palliative care initiative (i.e. 2002 -7)

Content

2. In your view, prior to the initiative (i.e. 2002) what aspects of palliative care services needed to be changed, in terms of:

a) organisational cultures, (e.g. flexibilities; inclusiveness; sharing of information and ideas.)

b) organisational structures (e.g. partnership working; infrastructure; human resources)

c) systems

d) policy.

Process

Workability

3. To what extent do you think that the BIG Lottery Fund palliative care initiative had an impact on each of the four issues (a-d) listed above?

a) Organisational culturesb) Organisational structuresc) Systemsd) policy

4. How do you think any changes were accomplished? (What were the key drivers?)

Sustainability/ transferability.

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5. To what extent do you think that these changes have become mainstreamed in terms of:

i. policy

ii. structures

6. How would you have expected the ‘normalisation’ or mainstreaming process to be achieved?

a) To what extent do you think this has been achieved in terms of i. normalisationii. mainstreaming

7. What are the key successes of the initiative?

8. What elements do you think have been less than successful?

9. Is there anything else that you would like to add?

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Appendix 6 Vignettes

Vignette 1 Huntington’s Disease, palliative and social care project, Northern Ireland

This 3-year grant scheme was designed to improve the quality of life for people with Huntington’s Disease and their carers, through effective medical, palliative and social care in one of four Health and Social Services Board (HSSB) areas of Northern Ireland. The scheme was developed in close association with the Scottish Huntington’s Disease Association, which had previously demonstrated that a specialist service could have a significant impact on the quality of life of those affected by Huntington’s Disease. Lottery funding created a specialist service, which provided both outreach to those affected by the disease and training and support to health and social care professionals who were likely to come into contact with affected families.

The project, which was one of nine successful schemes within the HSSB ‘umbrella’ programme, was located within a statutory sector organisation, working in partnership with the Northern Ireland Huntington’s Disease Association, a small voluntary sector organisation. The Board had set non-cancer as one of its priorities for this programme.

The scheme received some additional funding (£68,000) due to the revocation of another scheme within the Board ‘umbrella’ and had an extension to its original timeline. Early into the project, strategic directors at Board level became convinced of the need for the service, with strong evidence presented by the nurse and the results of a Board wide-needs assessment.

Huntington’s Disease (HD) is a high risk, familial and hereditary, progressive, degenerative, neurological condition, affecting both physical and mental states. The patient may be identified as having palliative care needs almost from the point of diagnosis, but death can often take up to 25 years. Evidence suggested that many health and social care professionals lacked understanding of the condition and were therefore ill equipped to meet and manage the needs of this complex client group. As the condition has many aspects to it, in terms of services: “it doesn’t quite sit nicely anywhere” (Key stakeholder.)

People living with HD and their families describe themselves as “the forgotten people”. Families affected by Huntington’s Disease frequently live with multiple loss and serial bereavement. Until the development of this project, there had been no specialist Huntington’s Disease nurse or specialist service for Huntington’s Disease in Northern Ireland. There was no dedicated respite facility and hospices are not generally appropriate for this client group. By 2007, the incidence of Huntington’s Disease was put at 250 people across Northern Ireland, which is considerably higher than the 150 predicted and may still not reveal the true level of the disease.

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Three visits were made to the scheme. 11 interviews were carried out with nine people at a variety of different locations, including the acute trust hospital, Health and Social Services Board Headquarters and people’s homes. The researcher attended a training event for health and social care professionals and a steering group meeting.

Once the scheme was established, a senior Health Board respondent said: “I think the improvements in quality of life are immense….we haven’t had [a nurse specialist focus on] Huntington’s disease until X came into post…this [Huntington’s disease] is one of the most complex and horrendous diseases that we have.”

Lottery funding was timely, with a scheme champion stating:

"If we hadn't had the Lottery funding, ...we might be in the position where we were 10 years ago, that we're still shouting and saying these patients have very high needs and nobody is meeting them." Another said: "We would not have done all of this for Huntington's, there's no way, without the Lottery funding."

The scheme added credibility to and strengthened the voluntary Huntington’s Association in Northern Ireland, which had been struggling to survive, as it is constituted mainly of those with or caring for people with the condition. “Getting involved with the project saved my life.. [the] team’s dedication and loyalty to us [the HD association] are tremendous.” (HDA Chairperson)

Recruitment for the specialist nurse post proved difficult and delayed the start of the project, as the skills required necessitated a fairly exceptional person, with a good grounding in health and social care and a resilience to withstand the stresses of the role.

“It is a very exhausting job and … it can be a very stressful environment to work in.” (HD Nurse specialist)

The original nurse specialist retired from the post on ill health grounds and there was a gap before anyone else was appointed. It had been intended that the specialist nurse would have a support nurse, however, during the course of the evaluation, this was not achieved, and there was only ever one person in the nursing post. During the gap, the service was able to continue with the project secretary providing telephone advice and guidance until an appointment was made. The project achieved a caseload of more than 80 people, which was higher than original expectations. However, it was predicted that there remained unmet need amongst the ‘at risk’ group.

Health and social care professionals suggested that they were previously unaware of the extent of [largely emotional and social] problems surrounding those people with the disease and those caring for them, until this project began to raise levels of awareness and provided training resources:

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“it was a very interesting situation that caused us to look differently at how we provide care and begin to look at the whole concept of exceptional packages for people as they become more dependent and more needy. So that has been a very interesting outcome.” (Senior social services manager)

As a result, service providers have been encouraged to think more creatively about developing care packages for those with Huntington’s Disease, creating models that could be adapted for those with other disabilities and complex needs.

With raised levels of awareness, a neuro-psychiatrist who had been appointed by the hospital trust for other conditions, was able to provide some additional support to the multi-disciplinary team for Huntington’s Disease.

The scheme takes account of Section 75 of the Northern Ireland Act, 1998, regarding the need to promote equality of opportunity, with the specialist nurse having a caseload of families from across the locality. However, this scheme was limited to operating within the boundaries of one HSSB and could therefore be regarded as inequitable to those who live in other parts of Northern Ireland. Under the Review of Public Administration (RPA), reconfiguration of services may impact on the future development of this (and other) service(s). A needs assessment across Northern Ireland will provide evidence of need and current service availability and prepare a case for a Northern Ireland-wide service.

The scheme has been championed at strategic level, with funding obtained for a second nurse post within the EHSSB. Permanent ongoing funding has been secured from the Board. However, this arrangement may be subject to future scrutiny under the Review of Public Administration, (RPA) which is ongoing.

Contact details:Majella McConvilleHuntington’s Disease Nurse SpecialistBelfast Health and Social Care TrustBelfast City Hospital CampusA Floor, Medical Genetics DepartmentLisburn Road,Belfast, BT9 7AB.Tel: 028 9026 3982Email: majella.mcconville@belfasttrust.hscni.net

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Vignette 2 St John of God Hospice, Community liaison sister, Newry, Northern Ireland.

Since 1989, the St John of God Hospice, a voluntary sector organisation in Newry, a rural area of Northern Ireland, has been providing palliative care (symptom control and terminal care) for people with cancer, multiple sclerosis, motor neurone disease and HIV/AIDS across the Southern Health Board area. The hospice works closely with statutory services in providing services that fit within developing palliative care strategies (e.g. Campbell Report, 1996; Partnerships in Caring, 2000) including the aim of facilitating death at home, if that is what the patient and their families choose.

In 2002, a proposal was submitted to the Big Lottery Fund for a ‘3 rd party grant’ under the auspices of the Southern Area Health & Social Services Board. The grant proposal of £125,000 over three years, was to support the appointment of a community liaison sister to streamline services, improve communication and provide quality care to patients and their families.

Five service providers were interviewed during the course of two site visits.

There were some difficulties at the outset, as there appeared to be some mis-understandings about the role of the new liaison sister, particularly by those with an existing palliative care role in the community: "People thought we were stepping on their toes." (Nurse manager)

However, the original proposal to focus on hospice to home discharge was amended, with the agreement of the BIG Lottery Fund, to focus on hospice referrals and admissions. In addition, considerable efforts were made to overcome feelings of mis-trust and raise awareness of the benefits of the role, which have subsequently led to a marked improvement in relationships:

“We have developed a very good professional working relationship with all the other professionals out there and so much so now they've come to value our support and our expertise…now we have this fantastic relationship.” (Nurse manager)

Two people now fill the liaison nurse post, as a job share, both of them with considerable palliative care experience. The post-holders now assist with referrals into and discharges out of the hospice, creating better utilisation of beds. They also provide specialist advice to GPs and nurses working in the community, as required. The liaison nurses also provide support to those professionals who attend regular multi-disciplinary meetings, as they can off-load some of their concerns about working with terminally ill patients in the community, which is often isolated. This support mechanism is regarded as a ‘knock on’ benefit, as it had not been anticipated at the outset

Four specific areas of internal improvement have been identified: all telephone calls are now centralised; doctors do not have to be disturbed

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whilst delivering patient care; referrals are co-ordinated, giving priority to the most urgent and those with the greatest need, and the admission process is streamlined.

Some of the patient group have multiple sclerosis and require periods of respite, (of up to two weeks at a time) which allows their regular carers to have a break. Where possible respite is planned, but the nature of palliative care means that beds may be required for people who are in urgent need of symptom control or terminal care. The hospice receives 50% funding from the Board towards the cost of caring for patients.

The majority of patients (90%) have cancer and 10% have a neurological condition.

Two visits were made to this grant scheme, one opportunistically at the outset, at a time when the scheme was still facing difficulties and re-negotiating the grant proposal and a final visit towards the end of the grant, when the role of the liaison nurse had become extremely successful. In terms of sustainability, an internal review was underway at the time of the final visit and the hospice board was due to make the final decision.

Contact details:Name: Ann CooneyAddress: Southern Area Hospice Services, St John’s Hospice,Courtney Hill, Newry, Northern Ireland. BT 34 2 EBTelephone: 028 302 67711Email: cooneya@southernareahospiceservices.orgWebsite: www.southernareahospiceservices.org

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Vignette 3 Scottish Motor Neurone Disease Association, Scotland wide.

This charitable sector grant scheme provided a new service, which filled a previously unmet need, for people with or affected by Motor Neurone Disease across Scotland.

The Scottish Motor Neurone Disease Association (SMNDA) was launched in 1981, set up by a man with the condition, who could not find an existing organisation that could meet his specific needs. Since then, it has become a well-established voluntary sector organisation, with in excess of 800 members. The vision of the Scottish MND association is to raise awareness of MND, and ensure that those living with the condition can expect consistent, high standards of care, and that work is carried out towards a cure.

The charity also plays a key role in campaigning, and impacts on national palliative care policy development, as one of a limited number of non-cancer organisations within the Scottish Partnership for Palliative Care. It is also part of the Scottish Neurological Alliance. Despite being a small charity, it has contributed to raising awareness and recognition of the needs of conditions other than cancer. The charity had additional Lottery grants for befriending schemes in Fife and Tayside.

Motor neurone disease (MND) is a rare condition, which requires palliative care almost from the point of diagnosis. Patients with MND and their carers argued that specialised counselling should be available. The Big Lottery Fund grant enabled the organisation to expand and deliver this new service.

MND affects 1:12,000 of the population, with an incidence of 1:50,000 cases per annum. In Scotland, there are an average of 120 new cases of MND diagnosed each year. At any one time, therefore, there are on average 240 people living with MND in Scotland.

Age of onset is usually between 40-70 years. Survival from first symptom is on average 2-5 years (14-16 months from diagnosis). The Motor Neurone Disease Association of England, Wales and Northern Ireland developed a pathway for the management of the condition within the English health system. Counselling (for both patients and carers) formed one small, but key element of this pathway.

The BIG Lottery grant enabled the organisation to recruit more than 20 volunteers in total, to provide a counselling service. Volunteers were required to have existing counselling qualifications and experience. Additional bereavement training was provided through collaboration with the specialist bereavement organisation, CRUSE. In addition, specialist MND nurses provided more detailed training on the nature of motor neurone disease. Once fully trained, volunteer counsellors were in a position to offer specialised counselling to those affected by Motor Neurone Disease, across Scotland.

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Six people, including one volunteer counsellor and one client were interviewed during the course of three site visits.

Counselling was delivered face to face at a mutually convenient location such as a health centre and was provided free of charge for patients, their carers and others affected by the condition. The majority of clients were carers and the focus of the bereavement counselling was around ‘anticipatory’ grief:

“It’s largely pre-counselling or preparing people for bereavement, which was always what we wanted to do, but that really seems to be making the majority part of it.” (CEO)

The organisation operates through the four neurological centres in Aberdeen, Dundee, Edinburgh and Glasgow, with specialist nurses funded by the association located in each, providing care, information and support to those affected by the condition. All those who have been referred to a specialist centre were therefore provided the information pack, which offered the full range of services available, including counselling. People ‘dip in and out’ of the counselling services according to individual needs, there were no fixed time constraints or limitations to accessing the service.

Referrals were made via the service co-ordinator, who is a fully trained counsellor, employed through the BIG Lottery grant and based at the organisation headquarters. This person was responsible for the recruitment, training and ongoing support of the volunteer counsellors and matched clients to an appropriate counsellor as far as possible. The service co-ordinator also offered professional telephone counselling for people who could not or preferred not to access a volunteer counsellor.

Although there were initial problems with staff recruitment, the scheme was successful in delivering a counselling service to those in need and continued to train additional volunteer counsellors.

Evaluation of the service showed that more than 100 people benefited directly, although it was not possible to measure the indirect benefits. The majority of beneficiaries were family and friends of those directly affected by the condition. It is possible that the impact of the condition and its progression makes sufferers socially passive and therefore less likely to request counselling, however, the impact on family and friends throughout the progression of the condition can be profound.

Much of the counselling work was around "anticipatory grief” addressing:

“the loss of people's wellness, the loss of people's status, the loss of people's physical abilities, ...mental powers and sometimes their financial and all that loss goes on." (Counsellor)

The benefits of partnership working between two voluntary sector organisations (CRUSE and SMNDA) was an unanticipated benefit of this grant scheme.

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Lottery funding for this scheme is due to continue beyond the life of this evaluation and thereafter, sustainability of the service is likely through extended fund-raising. However discussions have also been ongoing with Health Boards and the Scottish Executive for additional long-term funding and security.

Contact details: Scottish Motor Neurone Disease Association 76, Firhill Road ,Glasgow G20 7BA

Website: www.scotmnd.org.ukEmail: Craig.Stockton@scotmnd.co.uk Telephone: 0141 945 1077

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Vignette 4 Rachel House children’s hospice at home scheme, Inverness, Scotland

The Child Hospice Association Scotland (CHAS) provides hospice services through two hospices, Rachel House based at Kinross and Robin House based at Balloch. A BIG Lottery grant, through the Highland Board umbrella grant scheme, allowed the organisation to further develop its services, to provide hospice at home services, based in Inverness. It was estimated that there might be 50 children up to the age of 19 yrs with a life limiting condition within the Highland Board area, 25 of whom might require active palliative care.

Seven interviews were completed involving nine people during the course of a single site visit. Participants included two bereaved mothers, three young people and their mothers, as well as service providers. Three of these interviews were carried out in people’s own homes. Follow-up was carried out by telephone.

The service was designed to ‘provide prompt and effective support in the family home in a flexible way, encompassing the needs of the whole family living with a child / young person with a life limiting / life threatening disease, with an identified palliative care need.’ The service focused very much on social aspects of care and was largely driven by the families, some of whom lived in rural and remote locations:

"A lot of the issues are not around palliative care, they're around living and being in the community and being part of something and having purpose and meaning in your life.” (Service manager)

Although there was some initial staff turn-over, stability was achieved over time. Two project workers provided the home-based service to families within the locality, supported by a range of volunteers, who mainly provided assistance at organised events. There were 10 families receiving active care and support and 7 bereaved families receiving support on the caseload at the time of the case study visit.

The scheme was managed from Rachel House hospice, with staff making regular visits to the scheme and the families receiving the home-based services. The service focused on the needs of the families, providing support and play in the home as well as opportunities for children to socialise through ‘Wednesday clubs’, with families also joining in the quarterly Ceilidh’s and other events, such as a Christmas dinner.

"I can just let go and just hand her over to somebody else and be confident that they're going to look after her...as well as I can look after her myself." (Mother of a child with life-limiting condition)

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Training on children’s palliative care was provided for (other) health and social care professionals in the locality who work with life-limited children e.g. teaching assistants, physiotherapists, community nurses. Due to the positive feedback, this training may be extended across other Health Boards. The first day looked at pain and symptom control, the second looked at psycho-social issues e.g. grief, loss and bereavement. Support was also provided for teaching staff in local schools where the sick children and young people attended.

The scheme worked in partnership with the local community paediatrician; local children’s community nurses, schools and other professionals involved in the care of the children and young people as appropriate. There were links with the (adult) Highland Hospice, which provided office accommodation for the project staff and a venue for the various ‘away from home’ activities such as training and the Ceilidh’s.

Referrals were mainly from amongst existing users of Rachel and Robin House hospices, and enabled those children and their families to receive services in the home when travel to the hospice was not possible or appropriate.

"The voluntary sector can .. contribute to what the statutory sector are providing. ..we're not plugging gaps that the statutory sector should be doing, we're making life a little bit better, and the whole thing of adding value... a lot of the families can't actually quantify it, because they're just getting by and anybody that comes in and helps makes a difference.... It's the fact that there's been a regular appearance of somebody we know, or that you’ve felt confident to nip out and do some shopping or they've been able to come together and meet others socially, which is a very normal part of family life, but some of these families struggle to do that. It's just those little extras." (Service manager)

Social interaction was a key feature of this scheme, particularly with families living in remote locations, sometimes with more than one child in the family affected by a particular condition. The children and young people can often be unwell and not able to attend school or college, at which time, they become totally reliant on their families for their care, including toileting and feeding. Families find it difficult to get out and do ordinary things such as shopping and meeting with friends and relatives. Having one of the team come to the house once a week allowed the mums to do ‘normal’ things that they couldn't do whilst caring for their sick children.

"It was a real relief to have that, just to do everyday things." (Mother of child that died.)

Not only was it about doing things, but also, having some company.

"It's just like part of the family, you take them in as part of the family." (Mother of sick child.)

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The parent organisation, CHAS has been able to support the financial costs of sustainability.

Contact details: Deputy Head of Care (home-care co-ordinator)Rachel House, Avenue Road, Kinross, KY13 8FXTel: 01577 865777www.chas.org.uk

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Vignette 5 ‘Caring Together - Making a Difference in adult palliative care at Home’ Sunderland

This three-year adult palliative care grant scheme built on the experience and learning of an earlier BIG Lottery Fund Living with Cancer grant scheme: Offering Options. The cancer scheme had been extremely successful, developing a range of services, the majority of which were mainstreamed, including: information; support groups; respite. Complementary therapies and counselling for patients and their carers were not mainstreamed at this stage, but rolled-into the new palliative care project. Partnership working was key to the success of the scheme, and evolved from an effective steering group made up of a range of highly committed stakeholders from statutory and voluntary sector organisations.

Three visits were made to this scheme and included observation of steering group meetings, visits to Primary Care Trust headquarters; the acute trust; the NHS hospice, voluntary sector provider offices and one person’s own home. 25 people participated in 22 interviews, involving service providers and service users.

The availability of Lottery funding for palliative care provided an opportunity for the partnership to extend cancer services to those with non-malignant diseases and to develop additional services where gaps existed. Services included: extended out-of-hours nursing service; a specialist palliative care practice development nurse; home-chemotherapy and supportive treatments; extended social care provision; counselling; complementary therapies; volunteer befriending and sitting service; financial and welfare advice and a programme of further learning opportunities for health and social care professionals.

It was estimated that more than 8000 people (patients, their carers and health and social care professionals) benefited from these activities over the course of the grant life.

The success of this scheme hinged largely on the commitment of all the partners. The PCT maintained managerial responsibility for the scheme with services delivered by both statutory and voluntary sector providers.

The scheme represented a good fit with local strategic development, with key members of the steering group also representing their organisations on the Cancer Modernisation and Reform Group (MARG). The MARG also fed into the (Northern) Cancer Network.

Services were designed to meet patient’s needs and provide choice. For example, chemotherapy services were delivered at home for those who met the service criteria, relieving anxieties around transport and logistics of frequent hospital visits. 195 people received chemotherapy at home. This

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service also relieved pressure on the chemotherapy suite for those for whom chemotherapy at home was not appropriate.

An overnight nursing service situated within the hospice provided specialist telephone advice to patients, caregivers and /or professionals and arranged planned or crisis home visits as necessary. 1206 extra calls and visits were made as a result of this extended service.

Services were also designed to provide support and respite for caregivers. Data collected throughout the duration of the funding demonstrated that almost 50% of beneficiaries were caregivers and patient’s families. A specialist palliative care social work team was able to arrange respite to provide "relief for the carer." (Service provider) Levels of people with conditions other than cancer referred for respite increased to 8% in the final year.

The scheme also provided opportunities for health and social care providers to access information and education from the specialist practice development nurse and a senior lecturer in palliative care, thereby raising awareness. 374 community nurses benefited from specialist advice and education; 243 health and social care staff and 37 GPs attended education and development courses.

The scheme was designed to benefit at least 10% people with non-malignant disease. Increasing the level of referrals for this group of patients was recognised by key stakeholders to be much more difficult than had originally been anticipated. Despite intensive working with specialist nurses, for example, in heart failure, it is unlikely that the 10% target was achieved:

"I think that probably the provision of non-cancer services is more difficult than anybody thought, they just thought once we open the doors, we'll get inundated with work." (Service provider)

Stakeholders suggested that variations in disease trajectories for non-malignant disease may have been a contributory factor to the lower than expected level of referrals for this group of patients. In addition, patient's and their caregivers may not have been made aware of their prognosis:

“....there's an ethical issue about saying to somebody, oh, we're going to refer you for palliative care, if they haven't been told that they've got a terminal condition." (Service provider)

Timing of referrals, whilst an issue of some concern at the outset, improved over time, allowing for better levels of understanding between nurses and the development of relationships with patients and their caregivers.

Most elements of this scheme have been sustained and mainstreamed by the statutory parent bodies. Other aspects (e.g. services provided by volunteers and complementary therapies) require further ongoing consideration. Lottery funding provided the initial impetus for additional initiatives such as the

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Preferred Place of Care (PPC) and End of Life (EoL) initiatives to be piloted, which it is anticipated may lead to increased levels of referral for non-malignant disease.

Feedback from service users was positive, with the counselling service described as:

“an absolute lifeline…. I mean I get anxious and I get panicked and if you come and talk to somebody, if you know you're being irrational, that you can come and get rid of that and somebody can listen….and put things in focus for you...” (Service user)

Volunteer services were claimed to have: “.. made a huge difference, a huge difference, because I know I can go out on a Tuesday and it's like, what am I going to do today, we'll go shopping....” (Service user)

Contact details: Katherine HendersonModern MatronSpecialist Palliative Care ServicesSt. Benedict’s HospiceMonkwearmouth HospitalSunderlandTel. 0191 56565256Email: katherine.henderson@suntpct.nhs.uk

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Vignette 6 Somerset coast adult hospice at home service

This home-based service represented a partnership between a PCT and an established hospice, located within a rural area of South West England with pockets of deprivation and a higher than average level of elderly population. Somerset Palliative Care Strategy (April 2002) demonstrated that only 30% of cancer deaths were occurring in the home, with 59% occurring either in hospitals or hospices. This scheme aimed to facilitate an increase in overall provision of specialist, multi-professional, community palliative nursing care to enable patients (with cancer and other conditions) to be cared for at home during the final days of their lives. The service offered 24-hour therapeutic nursing, emotional and respite care.

One site visit was carried out with attendance at a steering group meeting, seven interviews including twelve nurses; three managers; one GP and two service users. Follow -up was completed by telephone.

This service (in common with many other schemes) took longer than expected to become established due to: recruitment difficulties; establishment of the statutory / voluntary sector partnership; awareness raising of the scheme amongst those likely to refer patients and establishing confidence in the service amongst both health and social care professionals and service users.

Recruitment of (three) health care assistants in particular proved difficult, mainly due to the anti-social working hours, extent of travel across the locality and the degree of flexibility required within the post. The recruitment period also coincided with other local agencies increasing staff levels. Staffing levels were achieved by seconding some staff from the hospice to the scheme.

Strong links between the PCT and the hospice proved beneficial in terms of training community staff and extending the availability of complementary therapies to those in the community (either directly or by training hospice at home staff or caregivers.)

Referral to the service, which was originally designed for the last five days of life proved problematic, despite the experience of the local district nursing team. Referrals were therefore initially less than anticipated. A decision was taken to relax the operational policy, to expand the service to provide additional respite for patients and their caregivers during the last two weeks of life. This enhancement provided the means to create more regular working patterns and “led to opportunities for staff to establish effective therapeutic relationships” (with patients and carers).

311 patients and their carers benefited from the 3-year grant-funded scheme. An average of 36 hours of care was provided, with the majority of shifts (62%) requested at night.

During the final year, 96% of deaths occurred within the home.46% of discharges from the hospice at home service reflected cases where services were no longer required; whilst 54% of those discharged from the

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hospice at home service were reflected admitted to either hospital, hospice or care home.

Almost half of referrals reflected a ‘crisis’ rather than a planned intervention. In the final year, two thirds of referrals related to caregiver emotional, psychological and support needs, illustrating the “clear recognition by health and social care professionals that carers have a pivotal role in end of life care and that their support is essential.”

Nearly 40% of referrals reflected patients’ emotional and psychological needs. Almost a quarter of patients lived alone. A number of referrals facilitated discharge from hospital or hospice to home, with levels increasing by 10% in the final year. Less than 7% of referrals related to a non-cancer diagnosis, possibly reflecting a lack of awareness amongst those likely to make a referral.

Service managers recognised the need for regular marketing of the service, in order to maintain referral levels. The PCT were planning to adopt the Gold Standards Framework, which might lead to improved service planning.

An audit tool was developed to identify priorities for both patients and carers. This tool has been adopted nationally by the National Forum for hospice at home. The referral form was also adapted to reflect carers’ preferences for place of care and death, which is was acknowledged may differ from patient preference and may change as the patient’s disease trajectory progresses.

Satisfaction levels amongst those who benefited from the service (including patients and caregivers) have been high:

“It was brilliant.” (Daughter / carer of deceased patient who was cared for and died at home.)

"There's something quite special about a death at home …you can see the family get a great sense of achievement.” (Community specialist palliative care nurse.)

“We used [hospice at home nurses] very successfully, for a young man who wanted to die at home….everybody was able to say their goodbyes… that made the death a lot more peaceful, it made it more dignified. ” (District nurse.)

A high level of co-operation between the local district nurses, community nurses, community palliative care specialist nurses and hospice at home nurses served to gain the best advantage from this service for their patients.

An effective steering group of highly committed individuals from the various partner agencies met regularly to monitor the service and provided guidance on advancement. The scheme had always been assured of sustainability, but the benefits were identified early on and the scheme acted as a lever for the development of a county-wide service which was mainstreamed, indefinitely,

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through a mix of specialist palliative care monies and matched charitable funding.

Contact details: Lynda ChatfieldDeputy Director of Nursing & Community Palliative Care Nurse ManagerSt Margaret's Somerset Hospice, Heron Drive, Bishop's HullTaunton, Somerset, TA1 5HATel: 01823 345905

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Vignette 7 South Worcestershire Adult community joint palliative care project

St Richard's Hospice, a charitable company limited by guarantee, was established in 1984. Based in Worcester, it serves the urban and rural area of South Worcestershire, a population of 267,000. The hospice had facilities for a day unit, an education centre and provides a base for the specialist home care team and volunteers.

The scheme, based in South Worcestershire was designed to benefit the towns of Worcester, Droitwich and Malvern and surrounding rural areas. The scheme was based at St Richard's Hospice in Worcester and provided: day hospice and home-based multi-disciplinary specialist palliative care service, including physiotherapy, social worker support and family therapy as well as an advice service, for all people in the area with life threatening illness. Newly appointed staff were employed to deliver the extended range of services.

One site visit was completed, involving six interviews with staff at the hospice and the Citizens Advice Bureau (CAB). Follow up was completed by telephone.

At the time of the site visit, St Richard’s was undertaking a new build hospice with facilities for in-patients, which opened in Summer 2006, at the same time as the conclusion of their Lottery-grant scheme. The new hospice, (where all services were moved to and the old building sold), was further out of the city centre, but closer to the acute (district general hospital) trust.

The Lottery grant represented a joint collaboration between the hospice, the PCT and the Citizen’s Advice Bureau (CAB)

“I mean we find we’re [as an organisation] specialising a lot more… and it’s interesting, because when we started our negotiations …the hospice was not too sure about what our role would be and whether it was really necessary, because nurses had done it [provided financial and benefits advice], but I’m delighted to say that they [the hospice] value our workers now very much and it’s been very successful, certainly from our point of view.” (CAB manager)

The grant also enabled St Richard’s to appoint and train additional multi-disciplinary staff. These newly appointed staff complimented the specialist clinical component and added value to the hospice services. Staff included a physiotherapist, occupational therapist; social worker/ family support and two CAB workers who were able to provide professional advice on financial matters which are often a concern to people who are dying and their carers and families.

"It's [Lottery funding] been brilliant in so much...it's given us an opportunity that we wouldn't have had to skill up staff, bring in perspectives of patient support that you'd never dreamed of in the past." (Care Director)

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Although the hospice caters for people with conditions other than cancer, few of their referrals were non-cancer patients (approx 9-10% in the day hospice but only 5-6% in the community.)

Sustainability was written into the proposal, with the hospice undertaking continuation of the additional posts within the new-bedded unit.

Contact details: Mr Mark JacksonChief ExecutiveSt Richard’s HospiceWildwood Drive,WorcesterWR5 2LGTelephone: 01905 76396Fax: 01905 35191Direct Dial: 0845 128 1291

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Vignette 8 Waltham Forest, adult palliative care scheme,

This scheme was located in an ethnically diverse and deprived area of outer London, with some dense areas of elderly population and a small catchment with a high incidence of breast and bladder cancers. The original proposal spanned two PCTs, however, the PCTs merged very early into the project and the service continued as one across the same geographical area.

One site visit was completed, involving a group interview with three people. Follow-up was completed by telephone.

The scheme was designed to fill gaps in the district nursing service, which did not provide overnight cover. A scoping exercise had identified approximately sixty people in the last two weeks of life and requiring palliative care services within each PCT.

The service was co-ordinated from an NHS-funded 12-bedded, dedicated palliative care short stay unit within a district general hospital. The unit had been experiencing a number of night-time calls for palliative care advice, which detracted from staff focus on in-patients. Since this night service was set up, the level of calls reduced dramatically.

Referrals to the service were accepted from GPs, the hospital, Macmillan nurses and others, the only criteria being that the patient was receiving a day-time service from district nurses.

The service was available between 11pm and 8am, with nurses based overnight at the GP out of hours centre, located within a walk in centre based at the hospital. Close liaison with the out of hours GPs provided a two-way back-up system, with the nurses assisting on GP palliative care call-outs and the GPs assisting with prescribing and advice to the palliative care nurse sitters.

The nurses operated a triage system, so that all patients on the current list for service provision had a nightly call to see if they required a service through the night.

"We work with patients basically, whatever they want, we will go with that." (Service co-ordinator)

Families were advised that they could call if they felt that they needed to, and they could receive a planned or emergency visit. This protocol proved to be an unexpected benefit of the service development as it had not been included within the original proposal, but evolved during the set-up period.

Although the majority of service users were cancer patients, a limited number of people with conditions other than cancer (<5%) received services. The majority of patients were female and over 40, but the service had been provided for some younger people. The scheme exceeded the anticipated

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number of patients, from 112 patients in the first year, to 372 in year 2. Overall, 1964 people benefited from telephone support, 932 overnight visits were made and 126 people benefited from all night care.

Anecdotally it was reported that a limited number of people from ethnic minorities took up the service.

Nursing staff recognised that when dealing with patients from all walks of life, each situation was likely to be different:

"They're all so different...every one is individual, you rarely get routine calls ." (Nurse)

In addition, the service providers required quite special skills:

"It is one job that, you've got to be a certain type of person, you need to be a good nurse and you need a sense of humour, otherwise you'd always be in tears. And you need to know when you need a rest…One of the biggest responsibilities when someone is dying.. the family will remember that time for a long while in the future and you want to get it right...what is right for that family... you want things to be as natural as possible." (Nurse)

There had been a high level of commitment from the nursing staff:

"They see it as what they call 'real nursing'...and they build up relationships with the family and the patient and they're able to give total care." (Service co-ordinator)

Patients, families and other professionals valued this service, which facilitated a marked increase in home deaths.

“We actually fit in with the family when we go there, to make it feel more relaxed for them...trying to make it feel as normal as possible to be at home and that's the ...natural place for them to be to die." (Service co-ordinator) The caseload increased year on year.

The model has proved innovative and successful. The service will be continued as part of long-term conditions and palliative care provision.

Contact details: Linda McCauley, Clinical Services Manager,Waltham Forest PCT,Chingford,Essex,Tel: 0208 430 8062linda.mccauley@wf-pct.nhs.uk

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Vignette 9 Naomi House children’s hospice, Winchester

The Wessex Children’s Hospice Trust was established in 1991. By 1997, Naomi House was the first children’s hospice in central southern England. The catchment area covers the Isle of Wight, parts of Berkshire, Surrey and West Sussex. Naomi House has 10 bedrooms for life-limited children, one of which is kept for emergencies. The children’s hospice relies entirely on charitable contributions from the community.

Naomi House (known as “The House”) provides respite and palliative care for children with life-limiting conditions and their families. Approximately 5% of these children have a diagnosis of cancer, the remainder suffer from a range of complex conditions such as neuro-degenerative and genetic conditions. Many of the children have multiple complex conditions and the majority are wheel-chair users. Naomi House is dedicated to providing holistic, family centred care.

The 3 year Lottery grant was used to enhance existing services and mainly supported additional staff, including: a contact worker for each family; a play-team; sibling support worker and family support team. Part of the development work was targeted at the adolescent group of referred children and siblings. Although the play team may have developed with existing funding arrangements, it is unlikely that other developments would have happened without the Lottery funding.

14 people participated in a total of 17 interviews during the course of three visits to the hospice. In addition, observations were made of a group of young men with Duchene Muscular Dystrophy attending for a special ‘male’ weekend event. Some of these young men spoke informally with the researcher, as did some of their parents.

Prior to the Lottery funding, the adolescent group of referred children had made it clear that they would like to have services more appropriate for their age group and separate from the younger children, whose needs are very different. There were approximately 40 adolescents on the books at the time of the grant proposal, aged up to age 24. Young people with complex conditions are now living longer than previously, due to medical advances. Transition to adult services is sometimes deemed inappropriate. In addition, the 2002 Care Standards Act requires care to be provided for ‘young people’ at separate times to younger children (although this has clearly been expressed as a requirement by the young people themselves.)

"The difficulty does come when they're [young people] living longer and longer." (Care team member)

"With medical technology keeping people alive longer, the demands that puts on society and their families are huge and so that urgently needs to be addressed." (Care team member)

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‘Referred children’ attend the hospice mainly on planned visits for respite, having an annual allocation following initial assessment, however, there is an acknowledgement that:"it's still on the pathway to a child's end of life, it's still that the reality, but we just make the years in between just that bit easier." (Head of care)

Other children may be referred or families request for them to come to the house from the Paediatric Intensive Care Unit of local hospitals, for end of life care. This can place additional stress on staff, as generally, they will not know the families. Good support mechanisms are in place for all staff.

The play team commenced in September 2003, prior to which there had been one person leading on play. The team’s brief is to work alongside the care teams and create a more formalised play regime. Half hour slots are offered to children throughout the day, providing stimulation in appropriate ways, which may involve sensory equipment. This provides short breaks for the care staff and if the activity is one that the child enjoys, it may be continued by the carer or family.

"A lot [of parents] are so tired and so caught up with family pulls on their time, that they just don’t have the extra energy to do these special things." (Play team member)

The play team is also responsible for collecting and recording memories of the referred children where this is appropriate for the family, which may be photographs or videos of happy times; children’s feet or hand casts or locks of a deceased child’s hair. These memories are stored for the families as and when they want them.

The hospice staff are aware of the need to address cultural diversity and create improved access to those who may currently feel that hospice services are not appropriate for them.

"A children's hospice is very white middle class and the poorest families often are the ones that need our services most, but it's very frightening for them to come." (Head of care)

Working with siblings had been recognised as an unmet need, which the Lottery grant enabled the hospice to develop.

"Because the parents are more like carers rather than parents, they don’t have time to be a proper parent to the child... so inevitably siblings are sidelined and it will lead to lower self-esteem." (Sibling support worker).

A bereavement team was also developed, to provide support to children and families, including siblings and grandparents. This team also worked in schools, enabling siblings to remove themselves from “the emotions” of the home situation and providing support to teaching staff.

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“This has been a very successful development in the support of parents, and siblings in particular and other family members like grandparents...there have been substantial benefits through having that development” (Head of care)

Teenage themed weekend ‘treats’ included trips to popular attractions in London; rugby and football matches; a visit to a casino; an Egyptian weekend and an overnight ‘under canvas’. Great efforts were putting into decorating the hospice on a particular theme and groups of young people come along specifically for these planned weekend events.

Naomi House was successful in bidding for a share of Government funding that was announced in 2006. This money has been used to continue the developments started with Lottery funding.

Two new developments were planned. Firstly a new unit, designed specifically for the requirements of young people, and based largely on the model developed by Martin House, to include a post life suite; hydrotherapy unit and training space. Secondly, an outreach scheme to supplement existing services in the community.

Contact details: Wessex Children's Hospice Trust Naomi House, Stockbridge Road Sutton Scotney, Hampshire SO21 3JE Telephone: 01962 760060 Web site: www.naomihouse.org.uk

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Vignette 10 Nottingham children’s Butterfly home-based and bereavement schemes

Two linked schemes in Nottingham provided an example of a children’s home-based service working alongside a bereavement service, both commissioned through a Primary Care Trust (PCT). A number of agencies (both statutory and voluntary) were involved in the delivery of services and participated in regular steering group meetings.

A number of visits were made to the various participants in their own organisation bases, as well as steering group meetings, attendance at regional network meetings and observation of a sibling group. The researcher also attended a local conference at which a number of volunteers and service users spoke of their involvement with the services. Twenty-five formal interviews were conducted with twelve people over the course of the evaluation.

Both schemes were designed to enhance the quality of ‘referred’ children’s lives, along with those of their siblings and families, by assessing individual needs and arranging for appropriate services (mainly social care) to be put in place. Services were provided in part by volunteers who had been recruited and were supported by a (limited) budget to provide ‘therapeutic’ enhancements to the quality of life of the referred children and their families. The scheme was also designed to ensure that other professionals (e.g. teachers) involved with the child and family, had appropriate levels of support and guidance.

The schemes were involved in the development of the East Midlands local managed network that was established and supported by the Strategic Health Authority. This enabled shared learning across a range of Lottery-funded and other children’s palliative care services.

These schemes faced considerable challenges in setting up completely new services. There were three changes of ‘lead’ person at the PCT, creating some instability and loss of the original vision. The palliative care schemes also formed a very small part of the overall responsibilities of each of these individuals.

Recruitment to the new posts created some difficulties, particularly in relation to the ethnic minority worker post. New recruits required time to familiarise themselves with each other, with existing services in the locality and more widely before they could focus on developing new services.

Selection of a sensitive and appropriate name for the home-based scheme took longer than expected and created some delays in the distribution of information materials.

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In order to establish an effective partnership, there were substantial debates and negotiations, reflecting the diversity in managerial structures, accountability boundaries and organisational behaviours of the multiple participant agencies. Referrals to all aspects of the scheme were limited initially, but developed over time. Although the scheme experienced a slow start, many of the key stakeholders claimed that the value of building strong foundations would be demonstrated in the longer-term sustainability.

A service level agreement was drawn up between the PCT and the leading voluntary sector organisation, which employed three new staff. A volunteer co-ordinator had responsibility for recruiting, training and supporting volunteers, to provide various services within the home to allow respite for carers. These included sitting with the sick child or siblings, taking a sibling out to music lessons and so on.

A consultant community paediatrician was recruited to the scheme on a part time basis. This enabled the development of a care pathway for children with life-limiting and life threatening conditions, alongside end of life assessment tools. The community paediatrician was able to provide support and guidance to various health professionals as babies and children entered the end stages of care. In addition, a database was developed, to provide information on all children with complex (palliative care) needs in the locality.

A bereavement support worker was employed within one of the partner (statutory) organisations, to work alongside an existing post-holder, as well as the home-based team, to enhance bereavement capacity in the community. Information provided by this service emphasised the right of each family to choose where their child could die.

After a lengthy delay, the scheme was successful in recruiting a BME project worker, with considerable experience in both social services and the community. This worker ensured that appropriate services were in place for families with an emphasis on respecting cultural needs and addressing communication requirements. This worker also developed strong links between various specialist nursing teams, e.g. sickle cell thalassemia and renal, raising awareness of the client groups, the services and children’s palliative care more generally:

"We've got a lot more communication and co-ordination across the different teams working with different client groups." (Community Paediatrician.)

Despite early set-backs, strong links were developed with schools and in the community to provide support and guidance to enable children to remain in or return to school. Guidelines were developed to support teachers where they had a child with a life threatening condition, or where a child in school dies suddenly. Following a launch in September 2007, the publication will be distributed amongst local schools and be made available more widely.

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The scheme was deemed to have been successful at a number of different levels:

"We created a really good service that isn't about nursing, it's about all of the additional support that that child and their family need." (PCT lead)

Dedicated resources focused on the needs of children and their families and there was some evidence that the scheme had prevented hospital admissions and reduced length of stay, thereby saving money.

The bereavement support worker provided education and training to other (health and social care) professionals, in order to support and empower them to assist children with palliative care needs and their families during bereavement.

Referrals to the bereavement service came directly from families, ward staff or via the home-based Butterfly scheme and could made either before or after the child had died, as appropriate. As identified within many of the other services, both adult and children's, benefits were recognised where a relationship had been established before a crisis situation is reached.

This service was delivered and evaluated through a rigorous audit process, which demonstrated that around half of the ‘referred’ children had been affected by cancer and a number had subsequently died. Support structures and mechanisms were in place to support workers in this very sensitive and difficult area of work.

The future

The steering group reviewed the service and concluded that the focus of attention may need to be re-balanced to address the specific needs of the child rather than adopting a family focus:

"We were perhaps meeting the needs of the parents and not really trying to get close enough to actually what the children want...and sometimes that isn't actually what the parents really want and so that's ..an ongoing development now...to be able to explore through play the emotional needs and the wishes ands choices of the actual children."

Reconfiguration of all the statutory agencies linked to these schemes, along with stringent financial restrictions, created an environment of uncertainty as the Lottery funding was drawing to a close. However, during this period there were some changes within the voluntary sector organisation personnel that led to an increased commitment and sense of stability.

A business case was prepared and secured an additional 12 months of funding from the PCT for the health elements of the service The voluntary sector organisation proposed some changes in personnel, creating broader

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responsibilities and less senior positions in order to continue supporting the funding of their aspects of the service. Contact details: Hayley Judge,Nottinghamshire County teaching Primary Care Trust,Balderton Primary Care Centre,Lowfield Lane, Balderton,Newark, Notts, NG24 3HJ Telephone: 01636 594821E-mail: hayley.judge@nottinghamshirecounty-tpct.nhs.ukwww.nottinghamshirecountyteachingpct.nhs.uk

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Vignette 11 Bradford children’s bereavement project

This bereavement scheme was located within a long-standing voluntary sector organisation, fsu, (family service unit) in Bradford. fsu was recognised as an organisation that had considerable skills and expertise to undertake this project. Bradford has a high-density multi-cultural population, the majority of which are Urdu and Mirpuri speaking Pakistanis. Bradford also has a higher than average incidence of children born with complex health needs and in some families several children might be affected by the same condition.

One site visit included a group interview involving three service providers and an informal meeting with students on a placement visit to the scheme. Follow up was conducted by telephone.

The original intention was to recruit an Asian worker, or someone who could communicate in an Asian language, with social work or youth work qualifications and a working knowledge of health, social care and education. This proved impossible, and a part time appointment was finally made after lengthy delays and several advertisements. The post-holder was neither from an Asian community, nor did she have any Asian languages, however, she was an experienced social worker with a background in bereavement work.In some cases this was perceived as an advantage:

"People maybe don't want to speak to somebody who they see as being from their own community, for fear that information will get out about them." (Project manager)

The post-holder was well supported within the organisation and could refer to other aspects of service provision internally as appropriate.

"I feel I have benefited from being in this organisation and having colleagues who do therapeutic work with children and so on, to have that access.” (Bereavement worker)

Many of the families who required bereavement support also had multiple complex needs and in some cases required long-term support.

The project proposal was submitted indicating strong links to a local home-based team. However, over the course of the funding period, whilst the two schemes worked in partnership, only a few referrals were made to the (COSI) project. This was linked to the comprehensive care offered by the home-based (MASCOT) team and families welcoming support from professionals they knew.

The scheme caseload was therefore derived mainly through self-referral, where a family may have been given information from a school nurse of health visitor for example. Community nurses also provided referrals. Approximately one quarter of the caseload was made up of families from BME

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communities, however, they were described as ‘middle-class and well educated,’ which may not reflect the wider population.

Although the caseload remained small, the scheme operated at maximum capacity and did not have a waiting list. In the final year, the scheme provided direct support for 26 people; 5 siblings and 13 unpaid carers. The bereavement worker felt that earlier referrals may have allowed for even greater benefits to families: “It would have been beneficial to get me involved at the early stages, families, when children died...prefer to talk to someone they know than a stranger." (Bereavement worker)

The project devised training for a variety of professionals (e.g. health, social work and education) who were likely to be involved with children or families who had or would experience the death of a child. In the final year, training was provided for 121 professionals, and was particularly well received by teaching staff.

During the course of the project, fsu was taken over by the Family Welfare Association (FWA), a larger and more diverse organisation. However, this did not appear to impact on the development or sustainability of this project.

The scheme was unsuccessful in securing continuation funding from the PCT, however, short term funding was secured to maintain the new post, with a change of emphasis from palliative care, to working with children who have experienced a significant loss. Additional funding was also secured to offer training for professionals that work with children who have been bereaved.

Contact Details: Sarah MaruyamaOperational managerfwa,207 Cutler Heights Lane BD4 9JB Tel: 01274 651652www.fwa.org.uk

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Vignette 12 Brent & Harrow palliative care home-based scheme

The aim of this home-based scheme was to develop and improve existing services in the locality for children with life-limiting or life-threatening conditions needing home-based palliative care. The scheme represented a partnership between two Primary Care Trusts and an acute hospital trust. The scheme was located within an urban area of high levels of deprivation and almost 50% minority ethnic population.

Two visits were made to this scheme. Three formal interviews were conducted with a total of five service providers and managers. Additionally, a visit was made to the home of a carer and her young daughter, a service user, involving an interview through a translator.

Recruitment represented a real “stumbling block” for the scheme, and along with a period of acclimatisation, led to a long delay before service delivery commenced. The eventual appointment of a community palliative care nurse required considerable creativity and resulted in the recruitment of a nurse with experience of working in the community but without specific palliative care training. Additional staff recruitment proved equally difficult. The scheme never recruited the full team that had been anticipated, only ever achieving a lead nurse, a support nurse and a nursery nurse, all of whom had left by September 2006. The timing of the reconfiguration of local health services, coupled with financial constraints had a severe impact on this scheme.

The nurses were based within the paediatric units of two acute sector hospitals, working alongside the two community children’s nursing (CCN) teams and managed by the CCN team managers. Children were referred for home based palliative care from a variety of sources, although the working arrangements within the acute sector and close contact with the CCN teams meant that the nurses were usually familiar with the children and their families.

The scheme was designed to provide tailored care including: practical support in the home; advice on illness and diagnosis; co-ordination of services; end of life support in the home; bereavement care and sibling support.

The impact of the new posts and the model of working closely with the community children’s nurses created good working relationships across the two centres. Unlike many other children’s schemes, there was also evidence of joint working with adult district nursing services: "we facilitated an awful lot of joint working...the district nurses were fantastic...they were delighted to support us at night time.” (Nurse)

A close working relationship was also developed with a local children’s hospice and a national children’s palliative care charity, providing families with increased options for care and support.

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Various ‘tools’ were developed to support multi-agency working including: referral criteria; evaluation tool; dependency rating tool and nursing risk assessment. A leaflet describing the service was developed and disseminated. Data collection systems were put in place for monitoring and audit of services.

The caseload remained relatively small. However, many of the families are immigrants and translators were required to assist communication. Visits to these families therefore required careful planning and took longer than most. Translators were quite widely available within the local GP practices and PCTs across London, covering many of the major languages of the BME groups living there. However, some communication difficulties were reported in relation to certain dialects.

Respite care was welcomed and allowed families a short break from the 24/7 care of their sick child, providing them the opportunity to "have lunch together or get some shopping, or just do things that they couldn't do because their child had so many needs." (Nurse)

Sibling work was identified as a key area requiring additional focus (hence the need for a nursery nurse).

The term ‘palliative care’ was originally acknowledged positively, with the lead nurse badged as the ‘palliative care nurse,’ however, over time, the term became perceived as a barrier, both to the recruitment of staff and for acceptance of the service by parents:"..they don't want to hear about palliative care, it's not something their child is to go through, because [the perception is that] palliative care is for old people, it's not for our children....if the terminology was changed, ...it would be.. a lot easier to support these families." (Nurse.)

An effective and supportive steering group was set up to work towards the strategic development of the scheme in the longer term. Despite best efforts to involve a service user on this group, this proved impossible.

The original nurse resigned her post in Spring 2006, mainly due to uncertainties about her professional development and the future of the scheme. Neither she nor her colleagues, who subsequently left, were replaced, due to continuing financial uncertainty. Palliative care services were maintained as far as possible via the CCN teams.

Contact details: ingred.marriott@brentpct.nhs.ukTelephone: 0208 795 6653

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Vignette 13 Western Sussex, Snowdrop home-based and bereavement services for adolescents and young people

This young person’s scheme was originally located within a single Primary Care Trust (PCT) that subsequently merged with four others to form West Sussex PCT in the South of England.

Two visits were made to this scheme. Interviews were carried out with service providers in a variety of locations, as well as visits to the homes of two adolescent service users. In total, seventeen interviews were carried out with fourteen people.

A palliative care nursing service originally developed from an existing local respite care centre (built in 1985) for children with learning disabilities and associated health problems (the Cherries). From this, a team was developed with charitable funding. Snowdrop Trust is a voluntary organisation that raises funds for palliative care and children's services. The PCT makes bids to the Snowdrop Trust for nursing and other allied professional posts and the charity then pays the PCT to employ the staff, to ensure good governance. The Snowdrop team are based within a mental health trust owned building, rented by the PCT and situated in the district general hospital grounds. The two people employed within this Lottery-funded scheme became part of the Snowdrop team. These mechanisms afforded the 'luxury' of having a dedicated support team for children’s palliative care.

Local research carried out by the Consultant Community Paediatrician in 1993, demonstrated that families wanted to keep their children at home for as long as possible, and for them to die at home with appropriate clinical and emotional support on hand if required.

"Most of the children we knew wanted to be supported at home". (PCT manager)

There were some initial problems with staff recruitment and retention, mainly through individual personal problems. The Lottery funding supported the appointment of a part time palliative care specialist nurse for adolescents and a part time qualified counsellor to support adolescents and their families. The second appointment to the latter post was a male, who was able to provide a positive role model for the young people, many of whom had a female as main carer and some of whom came from single parent families. However, on occasions when young females wished to discuss particular personal matters, other staff were available.

The ethos of this service was to empower families to make appropriate choices, and where possible, for the young people themselves to make decisions about their future care.

"They [young people] are health consumers and what they need to understand is what as a health consumer they need to do...so give them

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awareness of what is available and what is not available and make them make choices of really where they want their care to be.. If we can’t bring the child along with us on that journey to adulthood, if they don't participate and they just sit back and be passive, then it's all going to fall off the end. They've got to be active to look after themselves." (Paediatric Respiratory Consultant)

Services could be delivered at the place of choice of the young people:

"I tried to arrange my visits where it would be most acceptable to the child, whether it be at home, so that the rest of the school friends don't know about...the blood letting and ...the medication, or whether they prefer me to go into school as part of their daily routine...some children will really reject the thought of you going into the school at all, because at school they are just part of their peer group, they don't want to be different." (Lead nurse)

The counsellor’s role was to work with the individual young people, although he made himself known to the parents, so that he was not seen as dismissing them. Although it was necessary to build a strong relationship with the young person, it was also essential that dependency was not built into that relationship.

The scheme provided support and awareness raising within local schools, offering services for the client group of young people within school where this was their choice as well as supporting teaching staff in their understanding of issues around death, dying, grief and loss. It also served to raise awareness of palliative care issues generally and transition issues specifically amongst health and social care professionals.

Another success factor related to accessing age appropriate, relevant information/ literature for this client group, which formed part of a tailored service to meet their needs.

"Teenagers, they don’t want to be condescended to, they don’t want to be treated like children, but they've still not got the capacity of being an adult. So it's finding literature that is relevant to their age groups, that they will relate to....books and things [e.g. web sites] being written purely for adolescents." (Lead nurse)

Despite the best efforts of the team in preparing young people and their families for the transition to adult life and adult services, adult health services were "not prepared" and in some cases (district nurses) refused to take on the care of technologically supported young people.

"I don't think….the adult service picked it up and ran with it, because it was very spasmodic.….It's not always the same service you're referring to, children's services, they have a [single] consultant, when you have adulthood, you either go chestwise or gutwise or whatever [specialism]..." (Service manager)

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Many of the young people served by the Snowdrop team received specialist care from tertiary centres some distance away, such as Great Ormond Street (GOS) and Stoke Mandeville Hospital. Lines of communication between the specialist centres and the home-based scheme were not always direct.

This scheme did not reach the expected level of referrals, as families tended to move in and out of the locality and some were discharged from the service. However, the work involved with each family was intensive and could be stressful, particularly at the point of ‘letting go.’

Continuation funding for this service has not yet been assured by the PCT, however, for the time being, the service continues to be delivered.

Contact details: Gill Cunningham, Snowdrop team, Barnfield House, 9, College Lane, ChichesterWest Sussex. PO19 6FXTelephone: 01243 815 227Email: gill.cunningham@wsx-pct.nhs.uk

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Vignette 14 Grimsby, St Andrew’s Hospice scheme

This children’s hospice scheme was situated near the north east coast and served the population of a large rural county. The children’s hospice is a relatively new unit, attached to an adult hospice. The proximity and shared resources appear to have provided a number of mutual benefits.

Two visits were made to this scheme. Three service providers were interviewed in two separate group sessions. In addition, a video-link was set up and observed.

A high proportion of children who used this hospice’s services suffered from severe neurological disabilities, such as epilepsy and cerebral palsy.

The Lottery grant enabled this scheme to recruit additional nursing staff and train staff and carers to provide physiotherapy and complementary therapies (such as massage) at home.

A novel initiative here was the provision of portable videophones that could be used when parents and children were at a distance from each other. The videophones were used both for children of adult patients and where the child was the patient. They enabled children and their families to maintain visual and audio contact, which can be very reassuring for all parties. They could also be used as a tool for nurses or carers in the home to obtain advice from hospice staff. The videophone is a compact and portable unit, which connects to a standard telephone socket and electric plug.

St Andrew’s worked hard to raise awareness of its children’s services both within the community (through its hospice shops) and amongst health professional colleagues. Evaluation of training events was very positive.

The hospice scheme was also very successful at delivering support services to (more than 100) siblings.

“We have dedicated days where the siblings of the children from the children’s unit and the children of adult patients come in and we focus specialist activities on them, giving them a chance to be able to talk about how they’re feeling, giving them an opportunity really to get to meet the nursing staff and then also to be able to build up relationships with them”. (Nurse manager)

The children’s hospice was exploring future developments for adolescents and young adults, with shared learning between the nursing staff on both sides.

Bereaved parents appear to have benefited greatly from working alongside the fund-raising team and being involved in publicity.

This scheme established good links with other (home based and bereavement) schemes and formed part of the joint palliative care strategy for

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the region. Sustainability was written into the original proposal, with staffing posts funded on a downward sliding scale and gradual up-take by the hospice’s own fund-raising. The videophones were purchased at the outset and had no revenue implications.

Contact details: St Andrew’s Children’s HospicePeaks Lane, Grimsby, DN32 9RPTelephone: 01472 350 908www.standrewshospice.com

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Vignette 15 Stockport Dragonfly project

This 33-month home-based scheme represented a partnership of two statutory health bodies (PCT and acute trust) and two voluntary sector organisations (Share Care and Signpost for young carers). The scheme established a new multi-disciplinary team to provide a round-the-clock, co-ordinated care programme for children with life-limiting conditions and their families in Stockport. Services include: nursing, care co-ordination, training for carers, home help, play therapy, nutritional advice, day and night respite care, psychological support and family support.

Two visits were made to this scheme and involved eight interviews with six service providers and managers.

The original proposal was designed to fill identified gaps in local service provision. It was considered that some children had previously been ‘inappropriately’ admitted to hospital, in order to give their caregivers a break.

The PCT held an award-winning database, listing all children with a disability, including children with a life limiting condition. Data was incorporated on a voluntary basis as a result of parents being asked what their needs were and what services they were currently receiving. The PCT has been visited by other organisations wanting to develop a similar system. The database provided an important evidence base for the new Dragonfly service.

Dragonfly is located in an urban area. A nurse co-ordinator was recruited in September 2003 and the scheme had a widely publicised official launch in April 2004.

The Dragonfly team (nurses, support workers and palliative care dietician) were employed within their various parent organisations, but met together regularly to discuss and review the families on their case-load. Internal evaluation of the service illustrated that the flexibility of the model created through the Lottery funding had been successful in meeting the needs of children, families and other health professionals.

"It's been able to provide a unique service that's just not really been there before.. and something that's been so needed in the past and ignored really, and I just think that being able to provide a service at home is just so helpful." (Lead nurse)

The scheme worked very closely with a separately funded local bereavement scheme and also provided sibling support.

Dragonfly had an open referral system, but as the nurses were based in the children’s unit of the district general hospital, many of the referrals came from hospital consultants, often at the point of diagnosis. The Dragonfly nurses

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therefore took on the role of key-worker for many of the families and were able to liaise with other agencies as appropriate, managing and often reducing the level of direct contact from other professional groups. The majority of referrals were for children with neurological conditions, with a small number of oncology cases. The scheme exceeded its original estimates for referrals.

Flexibility was seen as key to meeting the needs of families, much of which focused on social support rather than specific health needs.

"You've got to be creative... we've been able to tap into all kinds of things... [such as] concert tickets, pantomime tickets, limousine rides...to be able to give these children something that perhaps they wouldn't have been able to have....practically it's so hard for families....but it's giving them a bit of equality really." (Lead nurse)

Care packages could be provided at short notice, in the home, or on the hospital wards (nurses from the scheme have sometimes stayed overnight on the ward with a dying child, supporting the family as well as hospital nursing staff.) However, when dealing with a crisis situation in one family, due to capacity, other services sometimes had to be re-prioritised, causing some annoyance to other families. One family who had required considerable support from various elements of the service commented that they had found it to be “invaluable.”

The provision of training for practitioners and parents to provide therapies within the home was seen as a particular benefit for families.

"I think what makes this project work is the partnership, and the fact [that it is] the holistic service....you can put in nursing and you can put in family support as well." (Project manager)

A new Health Act Partnership commenced in the later stages of the grant scheme, bringing together health, education and social services to deliver co-ordinated and effective service for children with a disability and their families through a common assessment framework. Dragonfly was part of the first phase of this new partnership development. The Partnership does not include any additional funding, each of the partners work within their own budget.

Sustainability plans and the means of securing long-term funding were under discussion from an early stage. Health elements of the Dragonfly service have been mainstreamed indefinitely by the PCT. The voluntary sector partners (providing social care elements) have also been successful in acquiring separate continuation funding.

Contact details: Pat Fidler, Treehouse Children’s Centre, Stepping Hill Hospital, Stockport. SK2 7JE Telephone: 0161 419 2133Email: dragonfly.project@stockport-tr-nwest.nhs.uk

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