On this page we’re sharing young people’s thoughts about the support they need as they transition to adult services.
What do young people need?
“We need uplifting and exciting stuff”
Young people (and their parents and carers) have shared with us the importance of having access to a variety of support. This might be 1:1 support or group / peer support.
It needs to be available at a place and time that feels comfortable to them.
“We’ve lost our respite care”
Young people have shared that they often lose access to respite as they transition into adult services.
Losing this support can make them, their parents and carers feel vulnerable and isolated.
“Let me make my own decisions”
One size does not fit all, and different types of support are not for everyone. But young people have told us that knowing what support is available shows them they are not alone.
It provides them with opportunities and more importantly promotes choice.
“Help me gain independence”
As children grow into adults, it’s normal for them to want to become more independent.
Respite care and group activities can fulfil a key role in supporting young people with life limiting and life threatening conditions to spend time away from their parents in a safe place.
Prince and Princess of Wales Hospice
Watch the video: find out how the Prince and Princess of Wales Hospice support young people with life limiting conditions and their families.
Tips from young people
Young people have given us some tips for anyone setting up or referring them to support groups:
- “Don’t give us ‘old people’s activities’! Plan services with young adults in mind.”
- “Make sure a safe person is available, such as a key worker or lead professional.”
- “If the group involves spending time away from home, make sure it is in a developmentally appropriate space.”
- “Listen to our opinions and let us decide what kind of support is best for us.”
Parents and carers
Respite care and short breaks have a major benefit for caregivers. They give parents and carers the opportunity to have a rest and take care of personal or family needs whilst the young person is cared for by trustworthy and experienced professionals.
A short break may begin with two to three hours meeting other young people at a living well centre, and progress to a weekend of respite care.
Inviting parents and carers to initial sessions helps them build up relationships, familiarity and trust with professionals.
Examples of innovation
Have a look at these examples of how children’s and adult hospices have responded to meet the needs of young people and their parents / carers.
Transition from children's services into adulthood
Find out what support young people need when they are transitioning from children's services into adulthood and how Hospice UK can help you provide the appropriate care.