The changing context of respite/short breaks provision in Scotland

1. Give us a Break ! The changing context of respite/short breaks provision in Scotland Rosemary Chesson The Robert Gordon University

2. Features of the last decade Changes in health & social care policy Social Changes Changes in organisational culture New health/social care legislation Changes in health & social care structures Scientific & technological developments

3. Changes in health care policy • care in the community •  consumerism - The Patient’s Charter • increased emphasis on health promotion/ • improvement/public health • focus on primary care

4. Changes in health care structures • move to internal markets/GP fund-holding • reduction in nos health boards • LHCCs • Joint Future agenda • ? abolition of NHS trusts

5. Changes in organisational culture • occurring in health & social care organisations • common across statutory & voluntary sector • - emphasis on evidence-based practice • - on cost-effectiveness/value for money •  recognition of importance of evaluation & • research

6. In Scotland 1999 Strategy for Carers in Scotland, ‘The promotion of new and more flexible services for carers including respite care, at a local level’ 2000 SE response to Royal Commission on long term care. - £10 m to carers support in Carers Strategy - provision of equiv. 22,000 wks respite care

7. Legislative development • Community Care & Health Act (2002) • free personal care in nursing homes • formalised joint working in nursing homes • carer assessment in own right • direct payment schemes to be provided • carers information strategies

8. Cross-Cutting Agenda • Carers’ Strategy • Joint Future • Social Inclusion • Community Planning • Patient Focus & Public Involvement in • NHS

9. Implementation of Policy • Survey of Local Authority Social Work Departments in Scotland • 31 of 32 Local Authorities responded • max of 3 with respite strategy • strategic short statements within Community • Care Plans/Carers Strategy

10. Increased interest in respite • Respite projects within Health Services Research Group • Strategic Development Respite Proposal for Aberdeen City • Council 1999 • Respite: Definitions and Policy Project for MS Society • 2000 • Review of MS Society Holiday Homes in Scotland (for • MS Society) 2001 • Advise on Respite Directory for MS Society 2002

11. Making a Break: Developing methods for measuring the impact of respite services Joint Project: Shared Care Scotland and Health Services Research Group

12. Need for research • most research based in USA • most research related to older people with • dementia/children with learning disabilities • few studies on cost effectiveness • dearth of Scottish research • Lindsay et al’s The Patchwork Quilt main source of • info

13. Need for research cont.... ‘We all accept that respite services are beneficial, but where is the hard evidence that I can use when decisions have to be made and other services can point to more measurable benefits’ NHS Trust Manager

14. Main aims of study The main aims of the study were to: 1. investigate the role of respite care for: (a) children with complex needs and their carers (b) adults with learning disabilities and their carers (c) people with multiple sclerosis and their carers (d) people with schizophrenia and their carers (e) frail elderly people (excluding those with Alzheimer disease) and their carers

15. Main aims of study cont... 2. identify the most appropriate outcome measures for use with the above groups in the evaluation of respite care. 3. foster partnership working between agencies in voluntary sector and researchers (Community Fund, Health & Social Care Research Programme)

16. Project design The two main elements: 1. literature review, included critical appraisal of grey literature 2. qualitative study based on Aberdeen City; The Highlands; and former Strathclyde region (South Lanarkshire / Renfrewshire). face to face interviews respite services checklist HADS NHP SSQ

17. Findings • Grey literature: • difficult to access (time consuming) • frequently one third citations re study groups • majority of items one-off evaluations • frequently qualitative methods.

18. Grey Literature • problematic - often unreliable • information missing (data/info on respondents) • low response rates • copies of reports incomplete • lobbying for services

19. Peer-reviewed literature • majority of USA origin • mainly focused on chln learn dis. and older people • with dementia • carer perspective • needs related • few studies examining effects of respite/use of • outcome measures

20. Effectiveness of Respite Not possible to do meta-analysis ‘because of the great diversity in study design’ types of intervention, settings of intervention and variety of outcome measures’ McNally et al, 1999

21. Interview Study Table 1: Study participants Group Carer Cared for Total Frail, elderly 11 9 20 Multiple Sclerosis 5 11 16 Mental health 2 1 3 Learning disabilities 10 3 13 Chdn. complex needs 8 - 8 All 36 24 60 20 men/40 women 17 paired interviews (8 FA, 5 MS, 3 LD, 1 MH) Age range 30-92

22. Caring Relationships Table 2 Hu cared for by wife Mo caring for son Partner caring for partner Hu carer to wife Mo caring for dau Both carers/both with Fa carer to son Mo cared for by daudisabilities Fa carer for dau Wfe carer to hu Frd help/care for frd (m) Fa cared for by dau Wfe cared for by hu Son cared for by father Dau cared for by mo Dau cares for mo Dau cares for fa Sr caring for bro Mo-in-law cared for by dau-in-law Dau-in-law cares for mo-in-law

23. Interview Study Table 3: Types of Respite n=48 Residential care 18 Respite in own home 13 Hospital respite 12 Emergency respite 5 Family-based respite 3

24. Definitions • Participants had limited knowledge of respite/short breaks • 45% no knowledge • 28% a great deal of knowledge • 16% a little knowledge • 10% didn’t know/no opinion • BUT • knowledge appeared limited to own experience • narrow range of services • didn’t know how to access services directly themselves • not in touch with other respite users • not members of carers/respite organisation • confused regarding entitlements

25. Participants definitions of respite services did not accord with those of providers • ‘If my MS got worse from what I understand it’s just like an assisted living place isn’t it? ......... if you feel sick and cannot take care of yourself, then you need respite ....’ • Mrs. F

26. Main sources of respite for carers was services for partner/relative • ‘Well, day care I would say that is respite for me. I would say as the carer it’s respite for me. Also the community carer that mum gets, again is respite for me.’ • Carer EE

27. Respite provided different functions for different people • give time for other fam mbs • help cared for prepare for future • help carer when tired/ill • enable carer to cope in crisis

28. Respite provided different functions for different people ‘My husband’s mother died quite suddenly last year and that was down in Glasgow. We were able to have emergency respite through (named service). They were super. It was super not to have to worry about (our young daughter).’ Carer I

29. Respite provided different functions for different people ‘I think what she’s got next week is classed as emergency respite because I was so upset and I was really scared that I would do her damage. I had to stop myself because I would have and I am scared if I was, I wouldn’t know when to stop I don’t want to do that and I don’t want her to feel that she’s not wanted because I do love her and I do want her, but I just want a wee bit of life to myself and its very difficult. Carer N

30. Carers health • during the course of interviews carers discussed health • problems and expressed concerns about their health • anxieties expressed re who would provide care if carers’ • health were to breakdown (additional source of anxiety) • where high quality respite care was found it was described as • enhancing quality of life for both the carer and cared for.

31. Carers’ respite need changed over time • ‘So the respite element has taken over more of a kind of ‘respite role’ compared to that our original intention was which was the independence thing. But I think the way things are moving just now, and as we become less able to deal with A, as we would want is also due to physical reasons. I mean there used to be day when she was smaller, she would dump herself on the floor and I would lift her up. I couldn’t attempt to do that now.’ • Carer GG

32. Carers’ respite need changed over time ‘But as you get older your respite needs change totally. You’re not needing out for social activities or R’s social activities. Its physical health wise every way you need the respite. It changes over the years.’ Carer FF

33. Partnership working • Promoted by: • development of project • Advisory Group/Regular meetings • discussion of research • joint presentations at meetings • Challenges: • geographical distance • differences between organisations • over-expectations of each other

34. Main implications • complexity of evaluating the effects of respite – large numbers • of variables to control • research evidence can not be used to justify provisions of • respite services • outcome measure too blunt esp.: • - diversity in caring relationships and situations • - problems identifying respite care (diffs term.) • changing needs • problems isolating effects of respite from other service • provision and family support systems

35. Main implications cont... • reliable systems needed to capture relevant data • respite care needs to be considered in context of carers’ • information strategies • value of self-sufficiency places even more demands on family • (plus low expectations of respite services) • need to address risks to carers’ health as well as to those they • care for

36. Issues • develop realistic research agenda • caution regarding evidence-based agenda (policy makers/ • managers) • reconcile right to privacy/consent to research and need for • research • distinguish core ‘respite’ from by-products of other services • strategies for connecting individual to resources • acknowledge every scenario may be different and change • over time