MAKING IT WORK FOR EVERYONE – USING EVIDENCE

Dr Phil McCarvill11th 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

• 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.

DELIVERING HIGH QUALITY SERVICES

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

TALKING TO TERMINALLY ILL PEOPLE AND THEIR FAMILIES

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

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