Young People and Transition
The project was funded by the Department of Health as part of its funding for children's palliative care projects .
The programme comprised of two key phases, designed and managed by PublicServiceWorks on behalf of Marie Curie.
Phase 1: evidence gathering and analysis
Carried out between January and March 2011, the first phase of the Young People and Transition programme focused on identifying the key issues and experiences of young people with life-limiting conditions making the transition into adulthood.
The Phase 1 report sets out the findings and recommendations from evidence gathering and analysis. The report informed design and delivery of Phase 2 - Working together to create a better experience for young people (May 2011 to June 2012).
Please find downloadable versions of the Phase 1 report, Executive summary and the Appendices at the bottom of the page.
As part of evidence gathering, research was also conducted on black and ethnic minority/faith issues and education. You can also view the findings below.
Phase 2: Working together to create a better experience for young people
(May 2011 to June 2012)
Key findings from Phase 1 were trialled in a number of locations across the UK.
From March 2011, we engaged with young people and their families, professionals from a variety of backgrounds and commissioners of services to develop pilot work at six sites across the UK.
The work in these local pilots proved extremely helpful in identifying how the needs and aspirations of young people could be met directly, and in exploring whether support should be delivered differently in order to meet young people's requirements as they moved positively into adulthood.
Phase 2 also saw young people develop a range of creative initiatives to improve their lives at transition.
A small grants scheme was run by a panel of young adults, with support from the programme team, to award small sums for young people to do something inspiring. The panel provided mentor support during the application process and continued after the grants were awarded. Other aspects of the engagement phase of the programme included:
- 'Developing excellence' - a mentoring scheme to develop creativity and business ventures
- Game development - working with experienced games designers, young people were given the opportunity to develop a new, 2D web-based game based on real life experiences.
As Phase 2 unfolded, the potential of the programme to inform and influence broader policy became ever clearer. Work culminated in a major programme event on June 28, 2012.
A call for Government support
As part of the Young People and Transition Programme, Marie Curie produced a policy report with Together for Short Lives.
The report, called Don't Let Me Down, calls on the Prime Minister to lead a cross-government initiative to ensure that young people with palliative care needs, as well as their families and carers, get access to the support they need. Too often for these young people, services drop off as they make the transition to adulthood, just at the time when their illness can become progressively worse and their support needs greater.