1. The Respite Experience Current Experiences Rosemary Chesson Health Services Research Group

2. Whose experience? users: 1993 providers: 1989 1999 own: 1989 1999

3. Own: Post 1999 1999: Community Fund Project / Shared Care Scotland 1999: Membership Respite Special Interest Group 2000: Strategic Development Respite Proposal 2000: Respite: Definitions & Policy MS Society 2001: Review of MS Holiday Homes 2002: Respite Directory for MS Society

4. 2003 March 2003 Carers Alliance Give us a Break! June 2003 Shared Care / RSIG / RGU Respite Care: What are the Issues? August 2003 Shared Care / RGU The Respite Experience

5. Reviewing Progress Project initiation Project completion Dissemination of findings Implementation Respite Strategy

6. Conclusions increasing focus on key issues importance of partnership working

7. Partnership working Main challenges geographical distance between partners differences in working practices changes in staffing on occasions over expectations of each other

8. Partnership working Facilitating factors shared values shared aims and objectives feeling of joint ownership regular contact joint presentations

9. Partnership working Partnership with users willingness to participate in studies provide a voice for users participation in meetings / conferences feedback to users – case studies / Respite Strategy

10. Priorities for users [ Making a Break ] choice appropriateness crisis bridging – important for when I wont be here any more coping strategy - helps as Im tired enabling time with others (often family) sustaining a normal life

11. A normal life: holiday respite Wish You Were Here: Barnardos (August 2003) Holidays for Families in Need no in-depth mapping of holiday provision for families in need since mid-1970s currently case-by-case basis industry-led schemes largely out-of-season discounts

12. Holiday respite Findings for MS Review difficult / time consuming to access information range of opportunities single client approach holiday homes expensive to run use of hotels / tourist accommodation problematic

13. Holiday respite one size wont fit all key aspects of holidays: Leuchie reduction in social isolation Im a recluse at home the provision of social support MS bonds! increased independence I can come and go as I please provided a structure for the year – something to look forward to and look back on a safety net for carers and person with MS

14. Issue of holiday respite raises issues re respite in general reflects attitudes to disability challenges re individualism and collectivism

15. Finally What are our own respite experiences? What do we want?