On 19 April, 2016 Dr Jane Collins, Chief Executive of Marie Curie, spoke at Westiminster Health's Forum's 'Priorities for palliative and end of life care policy: choice, quality and integration'. Jane Collins spoke on the importance of 'Choice and access to palliative care' and how there is a discrepancy in needs and access.

1. Choice and Access to Palliative Care
Dr Jane Collins, 19 April 2016

2. About Marie Curie
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Marie Curie is a provider of care and support to people affected by
terminal illness. Our core business is:
• Nursing care (primarily overnight, but some variations)
• Hospice care through our 9 hospices
• Research program
• Information and Support service (telephone line, peer to peer online)
• Marie Curie Helper – a volunteer befriending service
• Campaigning – right to access palliative care
We have been providing services for as long as the NHS!

3. Place of death isn’t usually the most important
choice
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When you ask people that are dying what
their priorities are, place of death is
important but one of many priorities.
Symptom control and emotional
connection tend to be rated as more
important.

4. But is a ‘good death’ possible in hospital?
• Place of death might not be people’s most
pressing priority, but:
• Around half of the UK population dies in hospital
• And we should ask whether hospital is the place
where people’s other priorities – like emotional
connection and symptom control – can
realistically be met.
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5. More face-to-face access to specialist palliative
care needed…
But latest hospital audit shows this is where
they struggle:
• Most measures improving over last two
years, but access to specialist palliative
care still low
• Face-to-face, 24/7 specialist palliative care
available in 11% of Trusts (up from 2%)
• Face-to-face, 9-5, Mon-Sun specialist
palliative care in 37% of Trusts (up from
21%)
• Still too low, but a workforce issue with a £
implication
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6. But what about emotional support?
• Currently access to friends and family when in hospital isn’t
monitored, even though this is one of people’s top priorities!
• Closest we get is ‘emotional support’ – hospital is a poor performer
here:
o 59.4% of people strongly agreed or agreed that their loved one
had sufficient emotional support in the last two days of life in
hospital. By comparison:
o Home – 74.9%
o Hospice – 87.6%
o Care home – 77.6%
- ONS, Voices 2015
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7. What do we need to do to improve quality of care
in hospitals?
1. More access to specialist palliative care around the clock, face-to-
face. This has a money implication and is a challenge for the
Government. Extending junior doctor hours won’t make the NHS
anymore 24/7 for people who are dying!
2. More training for non-palliative care specialists in hospitals – it is
available, but not mandatory or necessarily accessible
3. Improve emotional support and gain a better understanding of
emotional needs. This is an ideal place to use volunteers - Marie
Curie have piloted volunteer companion programme at Musgrove
Park.
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8. At the same time, get people out of hospital where
possible…
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Marie Curie Nurses:
• £500 saved per
person
• More likely to die at
home
• Less like to need
emergency hospital
care
• Good for people,
good for the NHS

9. • Nuffield Trust evaluation of Marie Curie Nursing service. Place of
death versus matched controls.
Community palliative care is hugely effective…
9

10. But only where we can work with other services…
0% 10% 20% 30% 40% 50% 60% 70% 80% 90% 100%
Meals-on-wheels or other home delivered meals
Something else1
Any other nurse at home
Social worker/ support worker
Religious leader
Occupational therapist (OT)
Rapid response team
Hospice at home
Home care worker, home care aide or home help
Macmillan nurse, hospice nurse or specialist
District or community nurse
Services received at home by MCNS patients vs. non-MCNS patients
source:VOICES survey / ONS
MCNS patient
No MCNS

11. Getting people out of hospital can be close to
impossible…
Notes: further details here (or delete)
Source: details here (or delete)
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• In our own work we are seeing more and more delayed transfers of care
• Fast track Continuing Healthcare (CHC) was designed to address this
issue, with 48 hour transfers of care. But in one Trust in which we work we
are seeing an average delay of 9.1 days with one patient waiting 14. Many
patients die while waiting to leave hospital.
• Availability of social care is the barrier. Either: a provider cannot be found;
or, providers are unwilling to take on someone so close to death!

12. There seems to be no strategic approach to
resolving delayed transfers of care…
Research conducted in 2015 by Marie Curie, based on research by Hospice UK and NCPC
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Health and Wellbeing
Boards are the ideal
place to discuss how
health and social care
services can be
commissioned
strategically to facilitate
faster transfers of care
from hospital, but…
55%
10
35%
All UK Health and
Wellbeing Strategies
55% of Health and Wellbeing Boards have no
dedicated, multi-condition strategy for end of
life care

13. Making choice a reality…
Notes: further details here (or delete)
Source: details here (or delete)
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1. Improved access to specialist palliative care in hospitals
2. Improved emotional support and understanding of emotional and spiritual
needs in hospital
3. Greater focus on speedy transfers of care
4. Improved availability of social care
5. Strategic approach to getting people out of hospital that involves social and
health care providers working together
6. A response to the Choice Review from the Government (it’s been over a year)
with some additional funds to make this a reality!

14. 14
For more information contact:
Dr Jane Collins
Marie Curie
89 Albert Embankment
London SE1 7TP
Phone: 020 7599 7130
Email: jane.collins@mariecurie.org.uk
Follow us on Twitter @mariecurieuk @mariecuriePA