A growing number of children and young adults with life-limiting and life threatening conditions are now living into adulthood and evidence shows moving from children to adult services can be a particularly stressful time for them and their families.
Models of care used for these young people need to be adapted as they mature and begin to access adult services and their needs and preferences change. The stories of young people confirm they often fail to find the support and services they need from either children’s or adult services.
Our response to the need
Hospice UK believes every young person with a life-limiting or life threatening condition should have access to appropriate care and support reflective of his/her individual needs and preferences. To achieve this, Hospice UK has been working in partnership with Together for Short Lives and the National Council for Palliative Care since 2008 on a major piece of research undertaken by the Social Policy Research Unit at the University of York, known as STEPP.
The recommendations include a call for professionals to identify and work with young people’s preferred ways of involving their parents in decision making and improving experiences of inpatient hospital care.
In Summer 2012, Together for Short Lives set up the Transition Taskforce to try and bridge the gap and ensure better coordination between children’s and adult services and increase awareness of the issue. Hospice UK along with Marie Curie Cancer Care, National Council for Palliative Care and Preparing for Adulthood are partners on this project.
The STEPP Project briefing for the All Party Parliamentary Group on Hospice and Palliative Care is available to download.