Transition for people with life-limiting conditions

1. we care we campaign we educate
Transition for people with
life-limiting conditions
Jo Elverson and Lynne Young
St Oswald’s Hospice

2. Setting the scene
• St Oswald’s work with young adults
• Outline of the project
• Patient vignettes

3. St Oswald’s
• Children’s short-break service since 2003
• Young adult short break service developed in 2011
• Vision to …
₋ extend support to many more young adults who have palliative
care needs
₋ work closely and effectively with primary care teams
₋ find ways to improve the quality and efficiency of the support we
offer to young people
₋ provide education, training and information about this patient
group

4. Together for Short Lives
is supporting 10 projects
across UK to develop
innovative approaches to
improve the experience
of transition for young
people with life-limiting
conditions and their
families.
Improving transitions for young
people fund

5. The Project
A pilot to develop and test a new service
Aim:
– To enable GPs to confidently provide support for
young adults with palliative care needs
– To improve the young adults’ confidence in/
willingness to engage with their GP
Who is it for?
– Young adults with complex and life-limiting conditions
and unmet needs age 16-25yrs
– Available to the whole NE region

6. Project team
Multi-disciplinary team with experience in caring for
young adults
– Palliative consultant
– Social worker
– Senior nurse
– Links to wider St Oswald’s MDT and other services
₋ Physiotherapy/Occupational therapy
₋ Complementary therapy
₋ Spiritual care
₋ Inpatient unit and day services

7. How we can help
• MDT outpatient assessment focusing on
– Goal-setting
– Symptom management
– Future care planning
– Parent/carer support
– Signposting to other services
• Close liaison with GPs and other professionals
– Clinical and practical advice for professionals
• Participant-led evaluation and development

8. Symptom management (Liz)
“I see a lot of specialists and they struggle to
manage my symptoms and have tried a lot of
different medications. This makes me sleepy and
weak and I struggle to speak about what I want.
“I let my Mum do most of the talking and she tells
them what seems to work each time and sorts out
the prescriptions with my GP.
“I find vodka helps me relax and I sometimes drink
a lot with my friends.”

9. Signposting and goal-setting (Ben)
“I don’t see the point of getting to know a new
set of doctors as I’m sure there is nothing
anyone can do for me now. I’m aware that
things are getting worse and I’m scared about
the future”
“I need people who are brave enough to
support me to do the things I want to do
because I may not have long to get them done”

10. Parent/Carer support
“My son was not expected to live to
adulthood – keeping him well involves a
fine balance of care and support. I worry
that the many changes that come with
transition could upset this balance I’m
exhausted and stressed and I worry
about who will look after him if
something happens to me.”

11. Future care planning (Yas)
“We seem to have got into a pattern with my
daughter where she is well for a few weeks and
then goes into hospital again. Each time she
doesn’t quite bounce back to the same point.
We are constantly reacting to a crisis and every
admission to hospital might be the last one.”

12. “We believe that young adults (and
families) who are confident that they have
good medical support in their community
will feel empowered to make positive
plans for the future – concentrating on
what they would like to achieve, rather
than worrying how they would manage in
a crisis.
-
Project team

13. “I think this service would feel very
supportive ... That would be
invaluable; I think it would improve
care and give GPs confidence to deal
with these once in a career situations
which you’re just desperate to do
well.”
- Local GP

14. Get involved
Referrals
Post: Dr Jo Elverson, Young Adult Clinic
St Oswald’s Hospice
Regent’s Avenue,
Gosforth
NE3 1UH
Phone:0191 2850063
Email: joanna.elverson@nhs.net
Evaluation, feedback and discussion
We want this service to work for professionals as well as the patients –
contact Jo to get involved
Information
Professional and patient information leaflets are available
@stoswaldsuk/stoswaldshospice @stoswaldsuk

15. Thank you for your time.
Any questions?
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