Our ground-breaking Improving Transition for Young People programme has demonstrated substantial benefits for young people with life-limiting conditions and their families, research has shown.
The project, which ran between 2018-21, funded ten key projects across the country which addressed the ‘cliff edge’ of transition, the point at which young people move from familiar children’s services to adult services – with a focus on developing innovative new services within the adult sector. Evaluation of the impact of the projects shows that:
- The ten projects funded through the Improving Transition for Young People Programme have improved the situation for many young people and their families who are transitioning into adult life.
- Sharing and learning was central to the Programme.
- The ten funded projects were distinct and varied in nature and all presented a new service to test or new resources that would help services to improve provision for seriously ill young adults and their families.
- The York Health Economics Consortium’s economic analysis of four of the direct service delivery projects concluded that all four projects demonstrated substantial benefits in terms of holistic care for young people with life-limiting conditions and support for families in their caring roles.
Advances in medical technology mean that the number of young people with life-shortening conditions is increasing, but a shocking number of young people are not getting the support and care they need.
As part of the Programme we commissioned a team from the University of Leeds and University of York, led by Professor Lorna Fraser, to carry out research to update our understanding of this growing number. This study showed that there had been a 53% increase in the number of young people surviving into adult with life-limiting or life-threatening conditions between 2009/2010 and 2017/2018.
A whole new generation of seriously ill young people are now facing huge challenges getting vital support. Support from children’s services often ends without appropriate adult services in place. Poor planning and a lack of age-appropriate support has resulted in signiﬁcant gaps in these services for seriously ill young people, at a critical time in their lives.
The ten funded projects were distinct and varied in nature and all presented a new service to test or new resources that would help services to improve their provision for seriously ill young adults and their families. You can read more about the individual projects here.
We commissioned York Health Economics Consortium to carry out an economic analysis of four of the direct service delivery projects.
Their report concludes that all four projects demonstrated substantial benefits in terms of holistic care for young people with life-limiting conditions and support for families in their caring roles.
Seven common outcomes were identified across the four projects:
- Improved coordination of care.
- Increased satisfaction with and awareness of services available.
- Improved wellbeing for young people and their families.
- Improved multi-disciplinary working.
- Reduced duplication of effort from staff and organisations.
- Increased familiarity with the adult hospices and staff teams.
- Reduced use of health services by young people and their families.
- The report of the YHEC evaluation can be accessed here
Lizzie Chambers, Director of Programmes & Professional Engagement at Together for Short Lives said:
“Our Improving Transition for Young People Programme aimed to address some of the knottiest aspects of transition for seriously ill young people, whose experience of moving on to adult services can be extra difficult because of their complex health needs. It has been a privilege to work alongside these ten very different projects, all of which have taught us something new. I would recommend reading each project’s individual report to find out exactly what they did, the barriers they faced and how they overcome these. I hope that the enormous amount of learning we have gathered will foster new ways of working for future generations of young people.”
Helen Finlinson from St Elizabeth Hospice said:
“Having our project funded by this project has been a catalytic moment for us. Before we were given this opportunity as an adult hospice we didn’t have a dedicated transition post, or a paediatric trained nurse that we desperately needed. The service has now gone from strength to strength with this funded key role enabling us to provide transition coordination and deliver a new short break service for young adults. The feedback from young people and their families in our project evaluation clearly evidences the positive benefit this funding provided – enabling services to be available where they previously didn’t exist. We are very grateful to Together for Short Lives and the belief they had in what we hoped we could achieve.”