Hospice children need our help as they grow up

Children with life-shortening conditions need extra help to make the move to adulthood, say CHAS. Picture: Contributed

Transition is a word that means many things to many people. In general it tends to refer to a natural process, a rite of passage, that we all go through each time we have to face change.

At Children’s Hospice Association Scotland (CHAS) we use the term transition to describe the process when a young person using our hospice services moves within the healthcare system from children’s services into adult services.

This year we mark 21 years of CHAS, and it’s a significant time for us to look back and see how far Scotland has come in supporting the need for children’s hospice services.

Back in 1992 there were no children’s hospices in Scotland and families had to travel all the way to Yorkshire for specialist respite or end-of-life care.

Twenty-one years on, Scotland now embraces these families through its own two hospices – Rachel House in Kinross and Robin House in Balloch – and a home care service which covers the entirety of Scotland.

As we mark this milestone, Scotland is also facing a reality that couldn’t possibly have been envisaged 21 years ago.

Young people with life-shortening conditions are now living into adult life when previously they would not have been expected to.

It is a paradox that, thanks to medical advances, Scotland’s children’s hospices are now supporting young and not-so-young adults into their 20s and even early 30s.

The reality is that the services at children’s hospices are designed to be more appropriate for babies and young children than young adults, so naturally it is often not suitable for these young adults to have respite breaks alongside much younger children or babies who might have a significantly shorter life expectancy.

As a result of these changes, we have now introduced a new transition service to enable young adults to move on from CHAS hospices into adult services.

We have also set an upper age limit of 21. Our aim is to support and empower young people to find age-appropriate services outside of children’s hospices.

For those young people we are currently supporting who are nearing 21 or older, we’ve made assurances that nothing will change immediately.

The process will happen over three years and we’re employing a team of dedicated transition staff to support them every step of the way.

Understandably it’s a troubling time for these young adults, some of whom have relied on children’s hospices for respite breaks for ten or more years.

The problem is that there is not always an obvious solution for these bright, articulate, able young adults.

Some describe themselves as “falling off a cliff” when the  services they have relied on since childhood suddenly disappear.

It isn’t a realistic solution for childhood services to continue operating an adult service. We need to find other options.

The current situation has illuminated a serious message: Scotland has no dedicated service for these young adults living with life-shortening conditions and as a nation we need to respond.

Organisations across Scotland need to join forces and improve the transition process for young people. We’re an active member of the Scottish Transition Forum and we’re working with colleagues in adult hospices, local authorities, health boards, Scottish Government and other service providers to ensure young adults have positive experiences of moving into adult services.

It’s encouraging that there is willingness from these organisations to get involved but we need many more to get involved and help now.

A good transition is about young people with complex needs being able to live the life they choose for themselves – not just making do with the options available to them.

We all have a part to play in ensuring the successful transition of these young adults into alternative services, and we must not fail them.

• Maria McGill is chief executive at Children’s Hospice Association Scotland (CHAS)