Young adults’ challenge for children’s hospice group

The Children’s Hospice Association Scotland has been helping sick and disabled children for 18 years, but is facing a major new problem.

Ironically, the challenge – which will be the subject of a meeting to be held this Tuesday in Glasgow, is the result of advances in the care of terminally ill children.

The charity runs two hospices, in Kinross and Balloch, as well as a care at home service, all for young people with life-shortening conditions such as muscular dystrophy. But it is becoming increasingly concerned about what happens to young people as they reach adulthood.

“Even five years ago we wouldn’t have been talking about transition. It just wasn’t an issue,” explains Sue Hogg, Director of Care at Rachel House in Kinross. “The young people we looked after tended to die in childhood, in their teenage years.”

Techniques such as tube-feeding, assisted breathing and corrective spinal surgery to keep people well for longer were little-used, she adds. “Improvements in care are fantastic and the fact young people are living longer is to be celebrated. But alongside that, it has been dawning on us for the last few years that CHAS is not acutally set up to meet the needs of young adults.”

Nevertheless, CHAS has been looking after an increasing number of older clients. Research recently carried out by the charity found that 39% of those being cared for were over 16. Although it is set up to work with children, CHAS continues to work with many young people well into adulthood, Ms Hogg adds: “Young people say ‘when I reach 19, children’s services stop and I fall off a cliff’.”

That was the experience of Robert Watson, 25, who sits on CHAS’s recently-formed young adults’ committee. “I’ve been coming to Rachel House for more than 12 years, and still enjoy coming,” he says. “But some of my friends have stopped coming because they feel too restricted by the activities on offer. CHAS are around specifically for children. The problem is there is nothing else out there for us,” he said.

Mr Watson said that the charity had done a great deal to improve the situation, with shifts changed to accommodate late night events and social activities, while visits are planned to ensure all-teenage stays, for instance.

However other agencies need to do more, Mr Watson suggests. “Adult hospices cater for people who are much older, and are often set up primarily for people with cancer. We are talking to people like Marie Curie and MacMillan to try to improve services for our age group.”

The inadequacy of adult services for young people who need palliative care will be the key topic at Tuesday’s seminar, which will be attended by Health Secretary Nicola Sturgeon among others.

While CHAS has worked hard to adapt its services to the needs of young adults, and insists it will avoid having a cut-off age, its main focus is on children.

In another irony, many of the young people become more dependent on services as they reach adulthood. “Just as their needs increase, the support available seems to decrease,” Ms Hogg explains.

The charity hopes that other services will now work with them to recognise the need for better services.

“Adult hospices, social care services and others in the palliative care world have to work together to improve the life of these young people.

“We are not getting it right at present,” says Ms Hogg.