1. Developing a Respite Strategy in a Scottish City Louise Mitchell & Rosemary Chesson Health Services Research Group The Robert Gordon University Aberdeen, Scotland

2. Scotland

3. Aberdeen 212,125 people (Census 2001) 185 km 2 71 sq. miles Granite City

4. Oil Capital of Europe Aberdeen: 4% of 16-74 year olds unemployed Scotland: 6% of 16-74 year olds unemployed Oil: 24% of employees in Aberdeen City

5. Aberdeen City Council 11,000 employees (approx.) 43 elected members (Councillors) Responsible for all local government services in Aberdeen Works in partnership with a wide range of public, private and voluntary sector organisations in the city and beyond,

6. Health Services Research Group Main research themes: Carers & respite care User Involvement Information needs / user education Multi-disciplinary & interagency working Assessment of outcome

7. Respite Special Interest Group The RSIG was set up in Grampian to: Raise awareness of the need for respite care throughout the area Share information Encourage good practice Develop shared commitments and strategies

8. Respite Special Interest Group Formally constituted organisation 60+ representatives of organisations and agencies from Grampian

9. Population 42,116 (19.8%) aged 60+ 37,173 (17.5%) with a long term illness, health problem or disability 16,758 (7.9%) provide unpaid care

10. Development of Project 1.Strategic development proposal submitted 2.Two phases: i.Research ii.Production of strategy 3.Council provided funding to RSIG

11. Key Objectives of Research Determine current level of respite provision for Aberdeen residents Assess functions of respite care for carers & persons they care for Estimate the level of need for services Identify the nature & extent of gaps in service provision

12. Key Objectives of Strategy Consult with relevant agencies/groups and identify policy and practice Establish Priorities Write a draft policy & strategy for respite care in Aberdeen

13. Definition of Respite... any service of limited duration which benefits a dependent person. The distinctive feature of respite care is that the break should be a positive experience for the cared for person and the carer (where there is one) in order to enhance the quality of their lives and to support their relationship. Respite care... may extend from a few hours to a few weeks. (The Scottish Office, 1996)

14. Survey of Care Homes Distribution 108 homes surveyed 90 in Aberdeen City 18 within 15 miles radius Response Rate 94.4%

15. Survey of Care Homes: Questions 1.Does your establishment offer respite? IF YES, are these designated places? 2.Do you provide a day care service? 3.Please indicate the client groups that you admit and the number of available places for both respite and day care

16. Survey of Care Homes: Questions No. of people who received respite Average no. of breaks per person Average length of stay Occupancy rate (estimate) Waiting list Provision of emergency respite Accommodation for carers

17. Residential Respite Provision Of 102 homes, 50 provided respite 27 homes had designated respite places Total no. designated respite places = 109

18. Residential Respite Provision (2) Learning Disability 60 Older People 17 Mental Health 12 Dementia 11 Physical Disabilities 9 Total: 109

19. Residential Respite Provision (3) Emergency Respite: 11 homes (8 within 24 hrs) Carers: 6 homes had accommodation for carers Day Care: offered by 33% of homes (older people)

20. Case Evidence 10 in-depth case studies Interviews with carers of people with: Alzheimers disease Parkinsons disease Head Injury Rheumatoid Arthritis Learning Disabilities Stroke Mental Health Problems

21. Case Evidence: Main themes Consultation and planning Information Access to Respite Respite Setting Transport Elements of Good Practice Financial Implications

22. Case Study: Mental Health Mrs I (58) caring for son (30s) Caring role: Household tasks Financial arrangements Emotional support

23. Emotional Support Very demanding, expects people to be there for him Dont have a life away from him, even during nights out, he phones constantly Lucky if I get a couple of hours on my own after work before the door opens Mrs I

24. Respite Would like to know that someone else is there for him. Would like peace in my home and the ability to go out or stay in without having to think about him or explain ourselves to him. Just a chance to relax knowing that hes being cared for. Mrs I

25. Respite Services Get told by system to leave him and go away, but we cant do that. They [the system] dont know what they are talking about. Mrs I

26. Interviewees Wide-ranging care Carers health Resilience of carers

27. UK Government UK Parliament Palace of Westminster Scottish Parliament Holyrood Scottish Local Government Local Authorities (Councils) NHS Health Boards

28. Scottish Local Government

29. 32 Local Authorities –Education –Housing –Social Care 26 sq.miles Dundee City 9942 sq.miles Highland 19,000 Orkney Islands 609,000 Glasgow City

30. Scottish Local Government 15 Health Boards –GPs –Hospitals 903,450 NHS Glasgow 20,000 NHS Orkney

31. Draft Respite Strategy – Stage 1 Survey of Scottish local authorities & health boards Response Rate: 31/32 LAs 13/15 HBs Four LAs reported having a strategy Two HBs reported having a strategy

32. Documents Received Respite Strategy4 Carers Strategy5 Community Care Plan8 Community Care Procedures3 Eligibility Criteria3 Other5

33. Draft Respite Strategy – Stage 2 Compilation of items from associated documents including: –Quality Standards –Documents provided by LAs and HBs –Recommendations for good practice e.g. Lothian Short Breaks

34. Consultation Documents Approaches to Respite Care –Strategy Document (Local Authority) Response - Royal Commission on Long Term Care –Scottish Parliament The Patchwork Quilt –Research Respite: The Way Forward in Kent –Research

35. Consultation Documents Guidance on Respite Care –Scottish Office guidelines DoH/SSI: Inspection Standards –UK Government quality standards document Quality Standards for Local Carer Support Services –Consultation report A Real Break –UK Government good practice guidelines

36. Consultation Documents Short Break Bureau –Local authority leaflet Quality Care for Older Australians –Australian government information for carers

37. Respite Strategy Definition of RespiteAccess to Respite Principles of RespiteElements of Good Practice Consultation & PlanningRespite Setting Funding & AccountabilityTransport InformationMonitoring

38. Respite Strategy: Examples Definition of respite 2.1 Statutory, health, voluntary and private respite providers should adopt a standard definition of respite Principles of respite 3.1 The service should be based on the principles of: a) sensitivity to individual needs, wishes and aspirations.

39. Respite Strategy: Examples Consultation & Planning 4.1 Aberdeen Citys Respite Strategy must directly relate to the National Carers Strategy and all other relevant policy documents. Information 6.1 A separate respite information strategy for Aberdeen should be published and widely distributed.

40. Respite Strategy: Examples Access to Respite 7.10 It is recommended that a Respite Bureau be set up in order to increase access to and awareness of services. This follows the model of Falkirk Councils Short Break Bureau and Respite Centres in Australia. The Bureau could be regarded as similar to a Travel Agency, co- ordinating respite for both carers, care recipients and providers.

41. Consultation on Respite Strategy 3 Drafts sent during 2002 Final consultation: –800+ people –104 responses received –Wide range of agencies responded

42. Issues Identified Resources Needs of specific groups Entitlement to respite (including access) Respite provision in hospital Vision or operational guidelines?

43. Overall Comments Respite care is one of the few services for patients and carers that genuinely makes a difference to their quality of life.

44. ..... unless a WILL exists to provide all of this for the patient, nothing will change.

45. Respite Strategy Implementation March 2003 After period of consultation, the Respite Strategy formally adopted by Aberdeen City Council Joint Community Care Planning Strategy Group July 2003 1 st meeting of a working group to produce an implementation plan Representatives from user organisations, respite providers and statutory agencies

46. Carers Research Partnership Provide robust evidence regarding the needs of carers and service users Develop a joint research agenda Extend knowledge of the nature of caring, and especially of carers roles

47. Respite Strategy Working Group Issues raised: Definition Entitlement –Priorities for social work –Qualifying for entitlement

48. Acknowledgements Aberdeen City Council The Respite Special Interest Group All survey participants All people who contributed to the consultation exercise