2. Carer Participation in England, Wales and Northern Ireland Carers Conference June 14 2007 ICC Birmingham Prof. Alan Roulstone,University of Sunderland Mrs Pat Hewitt, Carer, Sunderland Carers Centre

3. 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)

4. 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

5. 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)

6. 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

7. 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

8. 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

9. 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

10. 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

11. 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

12. 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…

13. 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

14. 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

15. 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

16. Practice Review: An Example of Good Practice 1 Carers are encouraged to be involved in all areas of service planning and the commissioning of services from external providers. During the recent tendering process 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 for effective working with users and carers (SSD, South West England)

17. Good Practice 2 As carers co-ordinator, I work across five strands of the [name of organisation]’s work, that includes physical disability, learning disability, elderly, family and childcare and mental health. Although it’s early days, by positioning my role into all 5 Care Strands this gives the Trust more scope to raise the profile of carers (JCT, Northern Ireland)

18. Good Practice 3 ‘Our Equal Opportunities policy is to actively seek out hidden and marginalised carers. We do this in a variety of ways including some exciting work with GP practices. We put a ‘post it’ note’ called ‘Counting on Carers’ on repeat prescriptions. Its ad hoc at the moment but we have attracted 13 of the 17 surgeries we Targeted’. (Carers Centre South East England)

19. Limits to Carer Participation 1 ‘We had a young carers project funded by the PCT but they withdrew the funding, we felt they didn’t see carers as central to their brief….’ (Carer, North East England)

20. Limits 2 We give our input, but we don’t really influence the way they [SSDs} work, for example I have commented on the need to have more choice of agency staff, but my ideas haven’t lead to any greater control (Older BME carer for daughter with physical impairments, London)

21. 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 Carers Centre, but the process usually starts with a crisis and the involvement of social services ‘ (SSD, South West England)

22. Thank you alan.roulstone@sunderland.ac.uk