Support, activities and respite

What do young people need?

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. 

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.

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.”

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. 

Illustrations courtesy of Studio Beci