In transition

When the Children’s Hospice Association Scotland (CHAS) first opened its doors more than two decades ago, many of the young people who accessed the service were not expected to survive into adulthood, chief executive Maria McGill explains.

“And yet, in 20 years, medical interventions and treatments have changed dramatically so these young people are surviving into their 20s and 30s. And that is good news.”

However, it has meant the organisation has had to make some difficult choices, such as whether it is everyone’s best interest to continue to provide respite to young adults alongside younger children who may have a much shorter life expectancy. After careful deliberation and consultation, CHAS announced last year that it can sadly no longer cater for young people aged 21 or above and that those services will be gradually withdrawn from this group over the next three years.

Robert Watson, 29, has been coming to CHAS’ Rachel House since he was 12 and has made good friends and many happy memories there. 

“We knew it might happen but it was still a shock when it was announced. It is disappointing because there are no other services out there that offer the same things that CHAS offers for our age group.”

With support from CHAS, Watson, who has muscular dystrophy, petitioned the Scottish Parliament.

“I wanted to show them just how vital respite support is for us and our families and those who care for us. And to let them know that as far as we can see there is nothing out there that offers what we are looking for in the way CHAS does. It is an area that really needs to be looked into and resolved because I think other organisations just thought, oh well, CHAS will deal with it. It is not an issue we need to do anything about. But now that CHAS has made that decision they need to look at it.”

He explains what respite means to him and his family.

“For myself, it means I get a break away from the usual routine at home. I can get up whenever I like and go to bed whenever I like, whereas at home my care workers come in at certain times. And I get to mix with others my own age who have similar conditions so we can relate to each other.

“And for those who care for us 24/7 it is a valuable break to recharge their batteries and be able to continue with their caring role. Without any breaks their health would be severely affected.”

Last month Scottish Labour MSP, Jackie Baillie led a members’ business debate on the absence of suitable hospice and respite facilities for young disabled adults, which was so popular that it had to be extended by 30 minutes. Concluding the debate, Public Health Minister Michael Matheson revealed that the Scottish Government is gathering information on the scale of the issue and undertaking analysis of the economic case for a bespoke service. He also gave a commitment to convene a meeting to look at what further steps are needed.

McGill welcomed the commitments and the support in Parliament for both the petition and CHAS’ decision. 

“We’ve had a lot of support for the decision. The decision is the right one for CHAS, I absolutely believe that. I also believe it is right for the young people and their families.”

CHAS has appointed a transition team to support that process. And it has also launched its Rest Assured service for those young people over the age of 16 who are at the end of their lives and wish to be cared for at home, which will see the CHAS at home team make an early introduction to the Marie Curie Nursing team and share expertise around the condition.

“The conditions that children and young people have in CHAS are not conditions that the Marie Curie Nursing service would normally be caring for. So that introduction is made so the young person knows this might be the individual who is caring for him or her at the end of their life.”

However, she points out that this is not just about care and support at the end of life, and these young adults also want to be supported to fulfil their aspirations and ambitions.

“These young people are living their lives. So, for me, it is much more about collaborative working with employers, housing providers, education providers, local authorities, health boards and the voluntary sector.”

Speaking to local authorities and NHS boards there is an “enormous willingness” to get this right, she says. However, she adds it is vital that young people are at the heart of decisions about their care.

“We need to be listening, we need to be creative in our response, and understand that it is also about individuals. It isn’t about one size fits all. What I wanted at 25 will be different from the next person, and that is exactly the same for these young people.”