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

By Anna Jones, Director of Children’s Services

Children’s hospice care is young. As a sector, we are just 40 years old. And that means we are learning all the time.

When Chestnut Tree House opened 21 years ago, very few of the children we cared for were expected to outgrow our service. In fact, few were expected to survive the primary and early secondary years. Now, thanks to medical advances, children are living much longer and with increasingly complex conditions.

Transition is the word we use to describe the journey from child-centred services to adult-centred services. Because it is a gradual process, we start talking to young people and their families about this when they’re in Year 9 at school, with the aim of moving to adult services at the age of 18.

Building connections

Currently, 80 of our young people are at various points on this journey. Although Chestnut Tree House is not a statutory service and therefore will not lead this process, we’ll work alongside other professionals and offer guidance.

We’re aware that this is a time of great change and may be very daunting to the whole family. For families who have been coming here for many years, Chestnut Tree House feels safe and familiar, so we want to do everything we can to make the process easier. We are forging links with adult hospices in the area – including our own sister hospices in Worthing and Brighton, St Barnabas House and Martlets.

We’ve built connections with adult hospices all over the area so that our activities team can use their venues for social groups and events. Adult hospices aren’t there for respite in the same way we are at Chestnut Tree House, but there are elements of their services that could be very supportive. Young people could visit to use the gym or attend art therapy, for example.

Sharing knowledge

We can also help with things like ensuring you have a key worker at your local hospice, even if young people don’t expect to be using them immediately. That way, if you deteriorate, you’re not going somewhere unfamiliar. And once you’ve transitioned, you still have that relationship with us until the age of 25, through social workers, our therapies team and activities team.

Before that, we can advise on practical aspects of transition. There are some things we would advise doing while you’re still under children’s services – things like having new splints measured are much easier before you enter adult services. We are working on compiling advice folders for each locality.

At one of our transition events, a mother told me that she’d been looking at colleges on behalf of her daughter. When she arrived at one, she found there was no wheelchair access – so her daughter literally couldn’t get past Reception. Collating information like that will really help our families.

Being prepared

I hope in time that I can work to improve the respite provision for young adults living with a life-limited condition and am currently having lots of interesting conversations about this. It is my job to advocate for our children and young people and part of that is by reaching out to the people in charge of the services they will eventually use, including by hosting collaboration events for adult hospice CEOs and directors here. There is a wave of young people coming their way, and they need to be prepared.

Adult hospices need to prepare for the clinical complexity of these young people who may also have severe learning disabilities and require special equipment and beds to keep them safe. The young people we care for have very diverse communication needs, and some use communication aids, boards, Eye Gaze or Makaton.

Looking to the future

Our ambition is to act as a conduit for knowledge-sharing and advice. My ambition is to host events with adult nurses from all the adult hospices, care support workers, therapists and social workers so they can start learning about the care these young people may require.

This will require hospice providers to work together – so there will be flexibility on our part too. If a youngster who has already left our service is receiving end-of-life care at an adult hospice and they need support with ventilation, they can call us. Or if the young person really wants to be here for end of life – and that familiarity might be important because of their learning disabilities – we can ask the adult hospice to help us with symptom control.

Throughout my 25-year-career, transition has often been a negative word – mainly because the support beyond children’s services is different and gaps are left in their care. What we are doing here is turning that negative into a positive, for the benefit of families now and in the future. There really is so much that we can do as professionals in children’s and adult services to make transition meaningful and to support our young people and families.

Celebrate our 21st Anniversary with us!

Throughout 2024 we're looking at how children's hospice care has changed over the last 21 years, and looking forward to what the future holds too. We'd love you to get involved and help us make our 21st year the best year yet.

Our 21st Anniversary