Libby started the presentation with the phrase “it was a shock, but not a surprise” and went on to discuss some of the challenges that the hospice felt they were facing to provide adequate support to young people with life shortening conditions as they moved into young adult hood. She also discussed some of the things they had learnt as they explored these areas more fully. Linda then discussed how they had worked with the Hospice to look at referral pathways and ways of working together to provide better support. Libby left us at the end of the presentation with lots of questions that needed answered as they looked to ensuring the future of this kind of work. This included the idea of collaborative working, what relationships need to be in place and how we could lead forward with this.

1. Third sector providers and
Hospice care – how can we
support each other?
Linda Campbell,
PAMIS Future Choice Project Assistant
Libby Milton,
PPWH, Clinical Advisor and service lead for young
people

2. “It was a shock,
but not a surprise”

3. Our Hospice experience
• Current perception of Hospice care
• New challenges for the future
– Widening access
• Learning for us
– Knowledge
– Attitude
– Models of care
• Our commitment

4. What have we learnt?
• Identification of young person with “palliative care
needs” :
– Profound LD and health needs; progressive
neuromuscular conditions, others
– Vulnerability and surprise question…….
– How to recognise change
– Once it is recognised, what to do, where to
signpost

5. Working with PAMIS
• How we support families
• Finding out what the hospice can offer
• Getting information to families
• Making referrals

6. “It was a shock,
but not a surprise”

7. • What the ideal service would look like
– Person and family centred
– Connected up health – social – education
– Proactive
– Built on relationships of trust
– Perfect blend of social and therapeutic
support
• Location? Not so important, but needs to be
accessible!
What have we learnt?

8. Questions that remain…
• What is the impact if the young person is
acknowledged to have palliative care needs?
(don’t use label “palliative”)
• It must NEVER make it worse, only enhance
things

9. • What relationships need to be in place to support
transition to adult palliative care services
– For pre school leavers?
– For young adults?
• Who should lead on this?
– LD nurses?
– Palliative care providers?
– Partnership approach?
– CHAS?
Questions that remain…

10. • How do we take this forward with
– School nurses
– Third sector providers
– GPs
– Families
– Hospice staff
– Acute care staff (children and adult services)
– Social services
– All the other people!!!!
Questions that remain…

11. Envision the future
• Identification of those with palliative care needs
• A partnership approach
– Age appropriate care
– Family centred care, close to home
– Staff trained and supported to recognise
palliative care needs, and offer appropriate
intervention and support
– Integration of health and social care
• Living and Dying Well

12. Libby Milton
libby.milton@ppwh.org.uk
0141 429 9834
Linda Campbell
linda.pamis@btconnect.com
0141 572 0782
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