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Making it Work for Everyone – Using Evidence

Making it Work for Everyone – Using Evidence. Dr Phil McCarvill 11 th September 2014 @MarieCuriePA. 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

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Making it Work for Everyone – Using Evidence

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  1. Making it Work for Everyone – Using Evidence Dr Phil McCarvill 11th 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

  5. Demonstrating Impact – Independent Evaluations

  6. Using Evidence: User Feedback

  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.

  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.

  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

  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.

  13. Thank you Follow Us on @marieCuriePA

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