An innovation responding to growing need In the UK the number of 16–25 year olds with life limiting conditions has doubled in the last decade (Beresford et al. 2013, p1, Fraser, 2013).
Marsh et al. (2011) reported that ‘many young people die at or just after transition’ and that ‘services stop just when they are needed most’. Giving projects such as this an undeniable urgency.
Stakeholder engagement guides the evolution of services based on local need, correlating with national research.
New referral pathway for transitional care
Multi-agency transitional care MDT meeting
Bi-annual open events jointly hosted with children’s hospice
A new young adult group-run in partnership with children’s services
Parent peer support and user-involvement group
Development of a short break unit (there is no other young adult short break unit for palliative care in East Anglia).
Twenty young adults (14–40years) identified within two years
Ten transitional care referrals received from the children’s hospice over the past year.
Ongoing challenges and solutions
Small numbers, huge (and diverse) needs (Marie Curie Cancer Care, 2011, p.8)-difficult to justify resources
Training and skills needed to provide care
Cross boundary working
Risk taking and managing staff concerns
Parent expert dynamic
Communicating the vision, creating transitional care champions (Cartwright and Baldwin, 2006)
What to offer now, managing expectations
Ongoing challenges and solutionsKey to success is the partnership working approach with the children’s hospice- sharing resources, increasing sustainability and enabling skill-sharing and training opportunities.
New avenues of income generation have been identified for this service.
We believe we are leading the field in adult hospice led transitional care in the East of England and would welcome the opportunity to share our learning and encourage others to step out and embrace this urgent challenge.