Together for Short Lives, the leading UK charity for children with life-threatening conditions, has today launched a new guide to support young people as they transition to adult services.
More and more young people with life-threatening health conditions are outliving their prognosis and making the move from children’s to adult services. Life as an adult with a life-limiting condition can be very different to that experienced within children’s palliative care. For those young people with the mental capacity to make decisions, the new guide provides expert advice which allows them to plan their lives as they want to.
The first section of the guide outlines what young people can expect at different stages of the transition process to adult services, and the second section focuses on different aspects of life that young people may want to plan for as an adult such as education, employment and living arrangements.
Leah Booth, one of the young people involved in developing the guide, says "Going though change can be scary and confusing at any time but add in a lack of information and support and it can be overwhelming. But the Moving to Adult Services Guide changes all that. It provides all the information I, or anybody else, needs to make informed decisions and shows that it’s okay for me to want things in life and have dreams. It's simple, easy to understand and is a really useful guide created by the very people who will use it the most"
Lizzie Chambers, Development Director at Together for Short Lives, says: “At Together for Short Lives we are committed to ensuring that young people with life-threatening conditions are encouraged and supported to achieve their aspirations, whatever they may be. Becoming an adult is a time of change for anyone. With a complex health condition, planning for change needs to start from age 14 years as preparation is needed to ensure that services are able to support them through transition.”
Simon Hardcastle, Senior Quality Improvement Manager at NHS England – Midlands & East who was involved in producing the guide says: “I believe this guide written for, and in collaboration with young people, will prove vital in ensuring young people are aware of the support and resources available to them when making the transfer across to adulthood. For so long young people have been told what they can and cannot have, and this guidance supports them to be able to know and say what they want for themselves.”
Copyright East Sussex Parent and Carers' Council 2018