“There’s nothing out there”
Supporting and Nurturing Creative
Responses to Short Breaks for Young
People with Life Limiting Conditions
Claire Turnbull & Janette McGarvey
13th September 2016
Who are we?
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CHAS is Scotland’s only provider of hospice care for babies, children and young
people, and their families
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Two hospices (Robin and Rachel), Home Care, Family Support
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Transition Team supports young people over 18 who are moving on from CHAS
to age appropriate adult provision (upper age limit is 21yrs)
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All young people have life limiting / life shortening / life threatening conditions
Transitions in CHAS
 Transition Team
(Manager, Transition Workers, Administrative Assistant)
 Funded by BIG Lottery
 3 year project began in Dec 2014
 Currently supporting 52 young people and their families
 22 have successfully transitioned from CHAS
 We work within a specific framework of 3 key outcomes
 Assessments and individual transition plans created
 We are based in both hospices but work across Scotland
What do we do
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Engagement with us is voluntary, we work at a pace which suits the young person and their family
We support people to be as independent as possible, to make the most of their life
Transition plans are individual and focus on goals that young person feels is important
‘Difficult conversations’ and end of life discussions with young people and families. We link young
people with adult hospice provision in their area
Support the whole family and work alongside carers to ensure they have adequate support and breaks
Work with young people to source and plan alternative short breaks and respite opportunities
Work in partnership with colleagues in health, social work and third sector
Link people with local communities, create opportunities for friendships and links which can sustain
short breaks
When all alternative supports are in place and the young person is confident about moving away from
CHAS, we agree plans for their final transition
What is palliative care?
“Palliative care is an approach that improves the quality of life
of patients and their families facing the problem associated
with life-threatening illness, through the prevention and relief of
suffering by means of early identification and impeccable
assessment and treatment of pain and other problems,
physical, psychosocial and spiritual.”
(World Health Organisation)
Living with a Life Limiting Condition - Young People’s
experience
What are the unique needs of people with LLCs?
 What are we finding out so far?
“There’s nothing out there”
Sean’s story
Rhys’s story
Two friends abroad
Kayleigh
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21, lives at home with parents
Complex health, needs specialist support
Family want and need opportunities for rest
Mix of short breaks utilised -
CHAS @ home
Robin House (respite)
SENSE day services
Stanmore transition respite provision
Short breaks at home - Capability Scotland support
A joint approach – working with Leuchie House
Background to the project
Planning
Joint approach to provision of care
Five young men (19-34yrs), DMD
5 night stay in October 2015
‘High’ staff ratio (CHAS and Leuchie)
Positives/evaluation
Challenges
Recommendations to consider
Any Questions?
Contact details
Claire Turnbull
Transition Team Manager
Rachel House
Avenue Road
KINROSS
KY13 8FX
Janette McGarvey
Transition Worker
Robin House
BALLOCH
G83 8LX
Tel 01577 865777
[email protected]
Tel 01389 722055
[email protected]