Regional implementation of a national cancer policy:taking forward multiprofessional, collaborative cancer care

A. FERGUSON, Regional Cancer Nurse Lead, Centre for the Development of Nursing Policy and Practice,

University of Leeds, W. MAKIN, Macmillan Consultant in Palliative Care and Oncology, Christie Hospital NHS

Trust, Manchester, B. WALKER, GP, The Health Centre, Seascale, Cumbria & G. DUBLON, GP, Outwood

Surgery, Outwood, Wakefield, UK

FERGUSON A., MAKIN W., WALKER B. & DUBLON G. (1998) European Journal of Cancer Care 7,

162±167

Regional implementation of a national cancer policy: taking forward multiprofessional collaborative

cancer care

The vision of the Calman±Hine paper is of patient-centred care, delivered by co-ordinated services which

have genuine partnerships with each other. There is integration of other providers of support, to meet

psychological and non-clinical needs. There is access to palliative care when required, from diagnosis

onwards, and not just in the terminal stage. Effective communications and networks are the keys to

making this vision a reality. Our recommendations are based upon in-depth discussions with purchasers,

doctors and nurses, and others involved with cancer services within hospitals or the community across

the region. They reflect the priorities placed on the development of good practice. Purchasers and

providers should work together to implement these guidelines.

Keywords: policy implementation, patient-centred communication.

Health Policy

INTRODUCTION

The publication of the Calman±Hine Report (Calman and

Hine, 1995) provided a policy framework for the commis-

sioning of cancer services in England and Wales and

heralded fundamental changes to the provision of cancer

services across the UK. The recommendations made in the

report proposed the delivery of a uniformly high level of

cancer care based on a network of expertise comprising

primary and secondary care. Regional Cancer Centres,

normally in large teaching hospitals serving a population

of around one million would provide comprehensive

services for common and rare cancers. Centres would link

closely through joint protocols with Cancer Units (nor-

mally district general hospitals providing expertise in

common cancers). Effective methods of communication

and smooth systems for patient referral and care would be

developed with the primary, community and voluntary

sector (NHSE 1995, 1996a; DHSS 1996).

The eight regional offices were charged with overseeing

the implementation of the national policy at regional and

local level. In the Northern and Yorkshire region equal

emphasis was placed, from the outset, upon ensuring

effective communications, collaboration and partnerships

across the boundaries of care as well as upon the site-

specific treatment issues. This paper describes the colla-

borative approach adopted in the Northern and Yorkshire

region and highlights some of the difficulties encountered

in translating policy into practice.

Correspondence address: Alison Ferguson, Regional Cancer Nurse Lead,

Centre for the Development of Nursing Policy and Practice, University of

Leeds, 18 Blenheim Terrace, Leeds LS2 9HD, UK.

European Journal of Cancer Care, 1998, 7, 162±167

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# 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 162±167 163

BOTTOM-UP APPROACH

A regional cancer working group (RCWG) was set up in

1995 to initiate and support the implementation of the

recommendations. The initial task was one of raising

awareness and stimulating the interest and involvement

of practitioners to take heed of the report's recommenda-

tions. The two-way process involved gathering informa-

tion and views on possible ways in which the broad

national recommendations might be translated into

practice. It was felt that a bottom-up approach would

facilitate successful implementation. The RCWG estab-

lished a number of sub-groups to develop detailed site-

specific guidelines. Simultaneously a small multiprofes-

sional group was set up to collate information and develop

plans around communication pathways and patient-

focused processes of care especially across the primary/

secondary/tertiary interface (NHSE 1996a). The group

consisted of two GPs, a consultant in palliative medicine

and a nurse representative of the group.

The sub-group aims were: (1) to gain information about

the current process of cancer care within the region and

areas of good practice; (2) to translate this information into

guidelines that would be useful to others; and (3) thus to

disseminate such practices.

FOCUS GROUP METHOD

It was not possible in the short time available to gather

detailed information from practitioners across the entire

region since it covers a large geographical area and has a pop-

ulation of six million. Focus groups were used as a method of

gathering snapshots of views. The focus groups were held

over a period of 6 months. Purchasers, health professionals

and the public involved with cancer services within the

acute, community and the voluntary sector were invited to

attend. They were held in three geographically and demo-

graphically diverse areas of the region; (1) Cumbria±north-

west of region, rural; (2) Bradford±southwest of region, urban/

rural, large ethnic population; and (3) Teeside±east, urban.

The meetings were held at times convenient to those

invited who were encouraged to discuss and reflect upon

the protocols they had for developing good practice.

Data from the focus groups was drawn into themes.

these were tested with a multiprofessional audience at a

concluding conference. The themes were then grouped

and translated into manageable guidelines.

The guidelines produced have been used alongside site-

specific guidelines to inform and guide purchasers and

providers of cancer services in the regional process of

Cancer Care and Unit designation.

RECOMMENDATIONS

Recommendations are made in nine key areas:

1. Communication between professionals and services.

2. Pathways for referral and prompt diagnosis.

3. Information imparted to patient and family.

4. Cancer support and associated services.

5. Continuing care and follow-up.

6. Needs of minority and disadvantaged groups.

7. Palliative care services.

8. Professional development and education.

9. Leadership and co-ordination of cancer services.

Communication between professionals, especially across

the primary care/hospital interface

Effective communication is essential at all levels both

within and across teams. Direct contact between profes-

sionals is a powerful tool in partnerships across services.

Prompt sharing of crucial information both improves

quality of care and enhances these relationships.

1. There should be direct and immediate contact

with the General Practitioner as the patient leaves the

hospital after the initial diagnosis. Information is needed

concerning treatment options, aims and likely outcome

as well as an idea of what the patient has been told, so that

the GP is able to provide the necessary advice, care

and support.

2. The cancer centres and units should be able to supply

the primary team with information on current protocols,

trials in local use, and the less common malignancies. A

liaison specialist nurse may be effective here.

3. In all parts of the service, there should be multi-

disciplinary involvement in care and adequate record-

keeping. On-going exchange of information is necessary

throughout the course of treatment and follow-up,

especially at key transition points such as relapse or

cessation of active therapy. This should be a two-way

process and include efforts by community teams to up-

date hospital staff on changing social circumstances,

medication and other relevant information. The introduc-

tion of patient-held documents to record essential details

would facilitate shared care.

4. Adequate investment in resources is required to

develop an efficient communication system; this in-

cludes secretarial support and harnessing new technology.

While maintaining confidentiality, criteria should be

agreed for the maximum acceptable time-scale for

transfer of information, as well as content and frequency.

The system should ensure rapid access to records if the

164 # 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 162±167

FERGUSON ET AL. Regional implementation of a national cancer policy

patient is admitted as an emergency or enters another

ward or unit outside that where he/she has been

previously treated.

5. Opportunities should be created and used to improve

recognition of roles and expertise between colleagues

across all parts of the cancer services. This would help to

overcome barriers that arise at professional boundaries and

increase the chances of direct communication about

individual patients.

Pathways for referral and prompt diagnosis

Delays may have a detrimental effect upon outcome and

contribute to psychological stress for patient and family.

1. Health education and promotion should enable the

concerned patient to present as early as possible to the GP

(or to the screening services).

2. Adequate diagnostic resources are essential to mini-

mise delay.

3. Commissioning groups should agree designated path-

ways for the investigation of different cancer sites and index

symptoms. These should include protocols or diagnostic

services and open access clinics where appropriate.

4. Acceptabletimeintervalsshouldbesetbetweentheinitial

presentation, diagnostic procedures and subsequent review.

5. Individual patients should be supplied with a clear

plan of their investigation and treatment, with booked

appointments whenever possible.

6. Ultimate responsibility for ensuring that the patient

progresses through the system as quickly and efficiently as

possible lies with the GP.

7. The management of children and adolescents with

cancer requires special skills and resources which usually

will require unique referral pathways to specialist treat-

ment centres.

Provision of information to the patient

All patients should have as much information as they

want and need to make informed choices about their care.

Honesty is required at all times. There is increasing

awareness that the initial task of breaking the bad news is

one of considerable responsibility. It requires skill,

compassion and support.

1. The information given to patients should be under-

standable, communicated well, and adequate to meet their

needs at each stage of the illness.

2. When cancer is strongly suspected the GP should

attempt to prepare the patient for the possibility of bad

news, prior to the hospital consultation.

3. In hospital, bad news should be given by a senior

professional, who is also able to discuss management

options. Other staff, especially nursing, should be involved

to give additional support and deal with any urgent non-

medical issues. The interview should take place in an

environment which can ensure quiet and privacy both

during and after the consultation. Tape recordings of a

consultation can also help other professionals to support a

patient and family.

4. Additional information should be available according

to the needs of the individual. Cancer centres and units

should develop their own information packages which

relate to the services they are providing. These may be in

the form of video or audiotaped material in addition to

leaflets. Patients should also be made aware of national

publications, such as BACUP booklets.

5. There is no substitute for the information provided

by an involved professional in a sensitive, personal

manner. Within a service, there should be designated time

for senior staff to be available to patients and carers,

throughout the illness.

Cancer support and associated services

A support network for cancer patients and their families

should be available and accessible at all stages. It should

encompass the centre, the unit and the community.

Support will embrace psychological and social support,

including advice, practical help, companionship, the use of

counselling and recognized complementary therapies. It

may be provided by health or social care professionals,

non-clinical and lay-workers, often in the voluntary sector

and patient support groups.

1. Professionals must recognise and assess the need for

support following the initial presentation, at diagnosis and

throughout the illness. The individual professional should

be able to provide support or be able to direct the patient

to further help within the support network.

2. Cancer centres and units should provide holistic

cancer care which, in addition to providing treatment, will

enable the individual to cope with, and effectively re-adapt

to, the consequences of having cancer. This will include

provision of nurse specialists, counsellors, and therapists

as well as social workers and benefits officers.

3. The skills and resources that may be available within

the charitable/voluntary sector should be harnessed. It is

important that these are properly funded and developed in

conjunction with the NHS cancer services.

4. Patients, carers and professionals should be aware of

what is available and how to obtain it.

Continuing care and follow-up of cancer patients

Locally agreed follow-up programmes should be tailored to

the type of cancer and to the individual patient.

1. The objectives of follow-up and continuing care

should be clearly defined and understood by the con-

sultant, the GP and the patient.

2. The plan for follow-up and continuing care for each

patient should be shared and agreed between hospital and

primary care. It is important to ensure that the GP has the

information and knowledge to recognise any need for

specialist intervention, and assess the required help.

3. Patients and their GP should have easy access to

advice from the cancer centre or unit.

4. Follow-up clinics should provide adequate time and

support to patients who need it, in a sympathetic

environment. There should be some continuity of staff

involved, both medical and nursing. The development of

nurse-led clinics may be a means of achieving this.

5. Whenever possible, there should be opportunity for

direct collaboration between professionals; for example,

parallel clinics and joint consultation. Decisions reached

should be promptly communicated with the other profes-

sionals involved in the care of that patient. This could also

be achieved through a shared-care document which is held

by the patient.

6. Patients should have written information on how and

when to obtain professional help, including whom they

should contact.

The special needs of cancer patients and their families

within minority and disadvantaged groups

Ethnic and religious minority groups are potentially

at a disadvantage in obtaining adequate information,

choice and support. There may be language and cultural

barriers to health education and screening programmes.

Patients and families on low incomes also warrant

additional consideration.

1. All components of cancer services ± whether primary

care, hospital, or hospice ± should give particular con-

sideration to the needs of different religious and cultural

groups. It should be possible to demonstrate that these

individuals have equal access to the service, including

screening programmes, and that they can obtain adequate

information, choice and support at all stages.

2. Potential language barriers should be considered. It

may be necessary to create a directory of identified

interpreters who are available to work across Trusts.

These individuals should be recruited from a health care

background whenever possible and equipped with training

in basic counselling skills.

3. Information for patients and relatives should be

prepared for specific groups. It should include the use of

video and audiotapes as well as written material. Patients

and carers should also be able to contact a named health

professional with whom they can discuss any worries.

There should also be provision for minority groups in

support networks.

4. Training of health care professionals should include

awareness of the needs of particular groups, particularly of

religious and cultural practices which may be important to

the care of patients in hospital and at the end of life.

5. Social and financial disadvantages should not be a

barrier to accessing adequate cancer care.

Integration of palliative care services

The management of the physical and psychological

problems of advancing malignancy, including care of the

dying, is a responsibility of all professionals in cancer

services. Most of this care is delivered in the community,

and should be at or near to the patient's home. Specialist

palliative care supports and enhances the care provided by

hospital and primary care and often provides a bridge

between them.

1. There should be a strategy for palliative care services

based upon assessment of needs in the local population.

Important considerations include practical help for carers,

availability of respite beds and night sitters, plus access

to specialist help in difficult or crisis situations. Ulti-

mately it is the availability of these services and palliative

nursing support in their homes, which can give patients

real choices over place and care and death. A `hospice

at home' or crisis response team can achieve this, and

avoids a final admission to a place far from the local

community. However, there will be some patients who

do not wish to die at home and alternative provisions must

be available.

2. The strategy should clearly define how and when the

specialist palliative care services should be involved; they

should be available to the patient and family from

diagnosis onwards within hospital or the community.

The provision of services to manage pain or lymphoedema

should be planned in conjunction with palliative care, but

ensure access by patients at any stage.

3. Specialist palliative care should be provided by a

multidisciplinary team, including a physician in palliative

medicine and specialist nurses. Such teams are already

established in hospices and can be integrated with commu-

European Journal of Cancer Care

# 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 162±167 165

nity services and also provide input into the local cancer

unit or centre. Alternatively, hospice-based teams may

provide a liaison and outreach service to follow and support

the patient into the community. A palliative care support

team should be established within each cancer centre

and unit. Effective links can be forged where new posts

are planned, particularly palliative care consultants who

can work closely with colleagues in other specialities

and also be easily accessible to professionals within

primary care.

4. Purchasers should make use of the expertise and

resources already provided by the independent sector.

They should ensure dialogue between potentially compet-

ing charities and long-term funding and contracts should

be agreed within the local strategy.

5. Each district should have a multiagency, multi-

disciplinary Joint Planning Group for Palliative Care

Services, to agree the strategic development of the service

as a whole. The group should include representatives

from doctors, nurses, social services, housing, Community

Health Councils, patients and other groups of interested

parties and to include lead clinicians and palliative

care nurses.

Education and professional development

Education and professional development should be con-

sidered within the strategic planning of cancer services.

Core skills in communication, teamwork and palliative

care should be part of the training of all professionals. In

particular, undergraduates and newly-qualified health

professionals need to understand the multidisciplinary

nature of cancer management within and outside the

hospital, and to appreciate the roles of all professionals

concerned (RCN 1996a,b).

1. Opportunities could be created for educational meet-

ings with oncologists, non-cancer specialists and general

practitioners to update and extend knowledge of cancer

management.

2. Senior clinicians, as well as newly-qualified staff,

should be encouraged to participate in training sessions

and courses in communication skills.

3. Palliative care education can successfully involve

different professional groups. This may be developed by

those within specialist palliative care and also by

Macmillan GP facilitators within primary care.

4. Hospital and community staff should be encouraged

to share skills across traditional boundaries, such as the

management of Hickman lines, lymphoedema, ambula-

tory chemotherapy regimens or spinal lines for pain relief.

Co-ordination and leadership are essential in the provision

of quality, seamless care for the cancer patient

Leadership from purchasing authorities should guide services

to meet the needs of the local population and harness the

hard work and excellence of professionals within the NHS

and voluntary sectors. This should encourage collaboration

between Trusts and others. Involvement of providers in

planning groups should aim to reduce unnecessary duplica-

tion, for example, in palliative care provision; deficiencies in

services, particularly support, should be identified.

1. Management must work with clinicians to enable

practice developments which address patient needs and

quality of service.

2. Communication between centres, units and primary

care must be improved at all levels and a lead clinician

must endeavour to ensure co-ordination of care.

CONCLUSION

The vision of the Calman±Hine report (Calman and Hine,

1995) is of patient-centred care, delivered by co-ordinated

services which have genuine partnerships with each other.

There is integration of other providers of support, to meet

psychological and non-clinical needs. There is access to

palliative care when required, from diagnosis onwards and

not just in the terminal stage. Effective communications

and networks are the keys to making this vision a reality.

This paper outlines the process adopted in one region

towards implementing the vision of Calman±Hine. The

guidelines presented are derived from the data collected

from health professionals, patients and purchasers in-

volved in cancer care who attended the focus groups. They

are not definitive or prescriptive. They have been useful in

helping to support and guide purchasers and providers as

they develop cancer services (DoH, 1996, NHSE, 1996a).

They have helped to guide the first developmental step in

gaining commitment to a revolutionizing national report

for the future of cancer care in the UK.

The guidelines produced by the Regional Cancer Work-

ing Group (1996) have highlighted the need to ensure the

primary care focus of cancer services and further work in

prompting this aspect is ongoing. As the criteria for the

future designation become increasingly robust the em-

phasis on communication collaboration and providing

pathways of care will continue to be central to the

Northern and Yorkshire approach.

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# 1998 Blackwell Science Ltd, European Journal of Cancer Care, 7, 162±167 167