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Theres nothing out there Supporting and Nurturing Creative Responses to Short Breaks for Young People with Life Limiting Conditions Claire Turnbull & Janette McGarvey 13 th September 2016 Who are we? CHAS is Scotlands only

  1. “There’s nothing out there” Supporting and Nurturing Creative Responses to Short Breaks for Young People with Life Limiting Conditions Claire Turnbull & Janette McGarvey 13 th September 2016

  2. Who are we?  CHAS is Scotland’s only provider of hospice care for babies, children and young people, and their families  Two hospices (Robin and Rachel), Home Care, Family Support  Transition Team supports young people over 18 who are moving on from CHAS to age appropriate adult provision (upper age limit is 21yrs)  All young people have life limiting / life shortening / life threatening conditions

  3. 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

  4. What do we do  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

  5. 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)

  6. Living with a Life Limiting Condition - Young People’s experience

  7. What are the unique needs of people with LLCs?  What are we finding out so far?

  8. “There’s nothing out there”

  9. Sean’s story

  10. Rhys’s story

  11. Two friends abroad

  12. Kayleigh  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

  13. 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

  14. Recommendations to consider

  15. Any Questions?

  16. Contact details Claire Turnbull Janette McGarvey Transition Team Manager Transition Worker Rachel House Robin House Avenue Road BALLOCH KINROSS G83 8LX KY13 8FX Tel 01577 865777 Tel 01389 722055 claireturnbull@chas.org.uk janettemcgarve@chas.org.uk

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