Making it Work for Everyone – Using Evidence
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MAKING IT WORK FOR EVERYONE – USING EVIDENCE
Dr Phil McCarvill11th September 2014 @MarieCuriePA
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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.
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DELIVERING HIGH QUALITY SERVICES
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UNDERSTANDING THE EVIDENCE: MARIE CURIE END OF LIFE CARE ATLAS
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DEMONSTRATING IMPACT – INDEPENDENT EVALUATIONS
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USING EVIDENCE: USER FEEDBACK
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USING SOCIAL MEDIA
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TALKING TO TERMINALLY ILL PEOPLE AND THEIR FAMILIES
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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
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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.
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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
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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.
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THANK YOU
FOLLOW US ON @MARIECURIEPA