THE CARERS RESEARCH PARTNERSHIP

1. THE CARERS RESEARCH PARTNERSHIP Elizabeth McDade

2. What is the Carers Research Partnership • It is a unique grouping of • Service Users • Carers • Service Providers • Health Services • Local Authorities • Researchers

3. What does it aim to do • Provide a link between the needs of carers and academic researchers • Provide robust evidence regarding the needs of carers • Extend knowledge of the nature of caring and especially of carers roles • develop a joint research agenda • Work towards a shared ownership of research • Collect and disseminate relevant research findings

4. Our work includes • Sharing Ideas and information through a variety of workshops and events • Identifying gaps in research information and setting priorities for new work • Seeking funding to progress new research to meet identified needs • Ensuring that relevant and appropriate information is available to improve service provision

5. What are the features of our research to date • Our work is collaboratively undertaken • Our starting point is CARERS • It is pioneering in nature • It addresses policy and provision

6. Our Main Studies so far …. 1999: Respite Strategic development Proposal 2000: Making a Break: methods for measuring the impact of respite services 2001: The role of social support & social networks for carers of people with MS

7. Our Main Studies (cont) …. 2002: To what extent are carers involved in the care and rehabilitation of patients with hip fracture. 2003: Creating Capacity: Evaluating Macmillan carers support schemes 2004: Carers Information Strategies

8. Respite Strategic Development Proposal • survey of residential respite provision Aberdeen/shire; • case studies based on carers’ experiences; • document search and analysis; • consultation on policy with stakeholders.

9. Respite Proposal Outcomes • Respite policy adopted by Aberdeen City Council • Currently moving to first phase of implementation

10. Carers and people with MS • First non-medical grant from the MS Society. • Sixty carers interviewed across Scotland (Aberdeen, Argyll & Clyde, Ayr, Edinburgh & Orkney). • 36 men & 24 women (mean age 47 & 44 years)

11. Main Findings • As carers’ responsibilities increase, levels of informal support decrease. • Spiral of social isolation as role of carer is assumed. • Highlights needs of younger carers with children.

12. Impact • Publications of report part of MS Society’s Carers Programme launch of 2003. • Recommendations translated into ‘practical strategies for the Society’s work with carers’. • Moved carers’ needs higher on the Society’s agenda. • Change in balance of research funding.

13. About Collaboration and Design • research with both statutory (ACC) and voluntary sector (MS Society, Macmillan Cancer Relief); • both community & hospital based studies; • qualitative approaches used; • findings have informed and led to policy development.

14. What does the research to date tell us • carers’ needs neglected earlier eg MS Society, Macmillan Cancer Relief; • door is opening; • research can make an impact on policy & provision; • research contributes to carers feeling valued; • researchers need to work with carers + carers organisations.

15. What now and in the future?We need to ……. • promote carer-initiated research – build on user-led research experiences; • link with emerging networks eg Epilepsy Clinical Managed Network; • achieve recognition of carers’ needs/research – in its own right; • extend work to date into larger, UK wide studies;

16. And Finally …… We need to respect and celebrate the unique nature of the CARERS RESEARCH PARTNERSHIP Not only in the composition of those who are involved but also in the manner in which we work