Dr Phil McCarvill, Head of Policy and Public Affairs at Marie Curie Cancer Care spoke on 11 September 2014 on ‘Making it work for everyone - using evidence' at the NCPC. Here in his presentation, Dr McCarvill makes a case for the role of data and evidence in end of life care. Using evidence that is currently available such as the Marie Curie Atlas; independent evaluations (e.g. Nuffield Trust); user, patient and carer feedback and social media, we are continuing to increase our understanding of experiences of end of life care. Marie Curie is using this evidence and responding to feedback when we work with commissioners around the country to redesign end services. For more information on commissioning, have a look at our website mariecurie.org.uk/commissioning or get in touch at servicedevelopment@mariecurie.org.uk

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
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.
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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.
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13. THANK YOU
FOLLOW US ON @MARIECURIEPA