1. MAKING IT WORK FOR EVERYONE – USING EVIDENCE Dr Phil McCarvill 11 th September 2014@MarieCuriePA

2. MARIE CURIE Major UK end of life charity Major service provider – Network of 2000 Nurses caring for people in the last few hours and days of life – 1.3 million hours of nursing in 2012-13 9 hospices across the UK reach 8,000 people each year Our services reached a total of 38,777 people in 2012-13 Major funder of academic and health service research with an Open Access research policy Working to influence policy and practice through our policy and public affairs work.

3. DELIVERING HIGH QUALITY SERVICES

4. UNDERSTANDING THE EVIDENCE: MARIE CURIE END OF LIFE CARE ATLAS 4

5. DEMONSTRATING IMPACT – INDEPENDENT EVALUATIONS 5

6. USING EVIDENCE: USER FEEDBACK 6

7. USING SOCIAL MEDIA

8. TALKING TO TERMINALLY ILL PEOPLE AND THEIR FAMILIES

9. DIFFICULT CONVERSATIONS We wanted to test the idea that you can not carry out research with terminally ill people Conducted in-depth interviews with terminally ill people (different diagnoses), their carers and bereaved relatives Focus on experiences of care: what worked & what’s missing? These were difficult conversations, but, ultimately they provide a much-needed reality check Will help us ensure the right care for terminally ill people and their families Failure to do so means that an individual dies in discomfort or pain & family can be left with regrets, guilt and unanswered questions. 9

10. DIFFICULT CONVERSATIONS: THE SYSTEM Perception – system is not built around the needs of terminally ill people and their families The division between health and social care services, number of different services and providers & lack of 24/7 services create a ‘fog’ of confusion Real differences in services available to people with different conditions Terminally ill people and their families find it difficult to navigate the system Many people do not know who does what, when and where. 10

11. DIFFICULT CONVERSATIONS: THE SYSTEM Each time I go to an appointment I think they’re going to tell me something that will show me the way clearly… it’s just bewildering … I can’t get to the bottom of it. Person with Parkinson’s 11

12. PUTTING TERMINALLY ILL PEOPLE & THEIR FAMILIES AT THE CENTRE Must use the available evidence to build services around what terminally ill people and their families need, not what makes sense to those providing services Future-proofing - need to meet the twin challenges of demographic change and financial pressures Support people to die in the place of their choice, pain- free and surrounded by the people who matter and remove blockages which prevent them from doing so. 12

13. THANK YOU FOLLOW US ON @MARIECURIEPA