Carer Participation in England, Wales and Northern Ireland

Carers Conference June 14 2007ICC Birmingham

Prof. Alan Roulstone,University of SunderlandMrs Pat Hewitt, Carer, Sunderland Carers Centre

SCIE Carer Participation Research 2005

Study completed by the University of Sunderland and Sunderland Carers Centre and the network of Princess Royal Trust Carers Centre

Literature and Practice Review of England, Northern Ireland and Wales

August 2004-July 2005 Carer Participation Review Group (10 carers) Research Review Group (12 national attendees)

Carer Led Methodology

Once the focus and Review template in place…

Carers formulated: Research tools Identified key issues in carer participation Reviewed all aspects of research Commented on research findings

Research Population

All Social Service Departments and Care Boards in England and Wales (74)

All Health and Social Care Boards (5) Selection of PCTS and Health Authorities (32) Selection of Learning Disability Partnership

Boards (9) Carers and Carer’s Centres (25&15)

Research Methodology

Systematic Literature Review (Sift of circa 30,000 sources)

Policy Review Practice Review in 3 stages: questionnaire,

interview and data triangulation All methodological and research roll out

issues carer-led

Policy Context

NHS and Community Care Act 1990 Carer’s Recognition Act 1995 Carer’s National Strategy 1999 Carers and Disabled Children Act 2000 Carers (Equal Opportunities) Act 2004 Northern Ireland Consultation on Standards

to Improve Quality in Health and Social Care

Literature Review Findings 1

There is much carer participation (CP) taking place

However there are very diverse interpretations of just what CP is-ranging from consultation through Board memberships to direct involvement in services planning, monitoring and review, research and influencing service outcomes

Literature Review Findings 2

There is no consensus on what CP is taken to mean at a theoretical level, whilst the main schemes and ideas shaping the academic and practice literature (Arnstein, Smale, Manthorpe) do not filter through into practice guidance.

There is a sound if not substantial body of literature dealing with carer participation, however certain issues such as carer diversity, for example BME, lifetime carers are quite unusual

Literature Review Findings 3

Most research on CP is small scale and tell us little about the broader picture of carer’s involvement in services.

Much research subsumes carers under the rubric of research on ‘users and carers’ which often treats the latter as an add-on feature of a study

Literature Review Findings 4

The bulk of CP research looks at carers in terms of the ‘impairment group’-users with learning difficulties, dementia, mental health problems

There is some important work on needs assessment and the need to take carers views and expertise more fully into account

Health service insights (e.g Expert Patient Initiative) are being creatively deployed to build CP into health and social care contexts

Literature Review Findings 5

There remains little work which looks at CP as an empowerment issue (c/f user empowerment)

There are however good example of joint working and commissioning which provide promise as to future CP potential

Some best practice examples are discussed in the literature for example carer’s being fully involved in major programme review, carers on carer support worker interview panels…

Practice Review

Many examples claimed for creative CP activity and these straddle statutory and voluntary sectors

Most statutory organisations had got CP on the agenda, however the extent of application was very patchy

Carer consultation was common, as was Board membership of carers, for example LDPB

Practice Review

Carer Participation in service planning and review was less common and measured outcomes of involvement very uncommon

Key role of carers’ centres in activating CP, making it happen.

Most established CP activity involved carers in a range of activity including strategic and street-level service activity

Practice Review

There were a small number of CP activities which successfully targeted traditionally hidden carers

Despite legislative presence and the Caring about Carers guidance-there was felt to be a need for greater clarity and action adherence measures for best practice assessment

Practice Review: An Example of Good Practice 1

Carers are encouraged to be involved in all areas of service planning and the commissioning of servicesfrom external providers. During the recent tenderingprocess with external providers, carers were involved in formulating the service specifications, interview questions and with the interview process…we have developed our ‘How was it for you?’ guidelines foreffective working with users and carers(SSD, South West England)

Good Practice 2

As carers co-ordinator, I work across five strands of the[name of organisation]’s work, that includesphysical disability, learning disability, elderly, family andchildcare and mental health. Although it’s early days,by positioning my role into all 5 Care Strands this givesthe Trust more scope to raise the profile of carers(JCT, Northern Ireland)

Good Practice 3

‘Our Equal Opportunities policy is to activelyseek out hidden and marginalised carers. Wedo this in a variety of ways including someexciting work with GP practices. We put a ‘postit’ note’ called ‘Counting on Carers’ on repeatprescriptions. Its ad hoc at the moment but wehave attracted 13 of the 17 surgeries weTargeted’. (Carers Centre South East England)

Limits to Carer Participation 1

‘We had a young carers project funded by thePCT but they withdrew the funding, we felt theydidn’t see carers as central to their brief….’(Carer, North East England)

Limits 2

We give our input, but we don’t really influencethe way they [SSDs} work, for example I havecommented on the need to have more choice ofagency staff, but my ideas haven’t lead to anygreater control(Older BME carer for daughter with physical

impairments, London)

Limits 3

‘We do our level best to involve carers in all that we do.We have been partially successful, but we are so hard pressed and social workers have massive case loads here. We try to work with the local CarersCentre, but the process usually starts with a crisis andthe involvement of social services ‘(SSD , South West England)

Thank you

alan.roulstone@sunderland.ac.uk