What happens when young people outgrow children’s hospice care?

Children’s hospice care is still relatively young. As a sector, it has only been around for 40 years, and we continue to learn and evolve.

When Chestnut Tree House opened in the early 2000s, most of the children receiving care were not expected to live beyond their early years. Few were anticipated to reach adolescence. However, due to medical advances, children with life-limiting conditions are now living much longer, often with increasingly complex needs.

Transition is the term used to describe the shift from child-centred services to adult-centred care. Since this is a gradual process, discussions with young people and their families begin when they are in Year 9 at school, with the goal of moving to adult services by the age of 18.

Building connections

Currently, around 80 young people are at different stages of this transition. As Chestnut Tree House is not a statutory service (we’re a service not required by law or provided by the government), we do not lead this process, but we work closely with other professionals to provide support and guidance.

This transition period can be a time of significant change and uncertainty for families. For those who have been receiving care here for many years, Chestnut Tree House is a place of safety and familiarity, so we strive to make the process as smooth as possible. We are developing strong partnerships with adult hospices in the area, including our sister hospices—St Barnabas House in Worthing and Martlets in Brighton & Hove.

We have established links with multiple adult hospices so that our activities team can use their facilities for social groups and events. While adult hospices do not offer respite care in the same way that Chestnut Tree House does, they provide valuable services that can be highly beneficial. For instance, young people can access their gyms or participate in art therapy sessions.

Sharing knowledge

Our role also includes advocating for young people to have a key worker at their local adult hospice, even if they do not require immediate support. This helps prevent unfamiliarity should they need care later. Additionally, young people can maintain connections with Chestnut Tree House until the age of 25 through our social workers, therapies team, and activities team.

To help with this, with appropriate consent we are holding 6 monthly meetings with our adult hospice colleagues allowing a discussion about each young person over the age of 16 who may need their support in the future.

We also provide guidance on practical aspects of transition. Certain tasks, such as obtaining new splints, are often easier to arrange while still under children’s services. To support families further, we are compiling advisory folders specific to different localities.

At a recent transition event, a parent shared their experience of visiting a college with their daughter, only to find there was no wheelchair access. This meant their daughter was unable to even enter the reception area. Gathering and sharing information like this will be invaluable for families navigating transition.