• Text size      
  • Send this article to a friend
  • Print this article

Inside Track: Battle to be heard on hospice for young adults

Jim O'Hagan's anger is barely disguised: "What Sean feels is that he is being put to one side, that he and the other boys don't matter. He feels like they are statistics, a botheration."

Jim's son Sean O'Hagan, of East Kilbride, has a life-limiting condition, Duchenne muscular dystrophy. He is 28 and one of the young people I wrote about a year ago, who have outgrown the services of the Children's Hospice Association Scotland.

The problem is that while they have outgrown facilities such as the charity's two hospices Rachel and Robin House, they haven't outgrown their illnesses.

As a children's charity, CHAS reluctantly decided 12 months ago that it could no longer go on providing respite care and other services to young adults, and introduced a time bar, planning to withdraw from support of over-21s in three years.

Although it once pledged to be with these young people and their families until the end, it is instead putting in place a transition team to help them find new support. But a year later, that team is not yet in place, hence the clock has yet to start ticking on that three-year countdown.

It isn't the fault of Sean, and others such as Robert Watson, of Renfrew, that they have nowhere to go after medical advances have helped them survive much longer than expected. Existing adult hospices house people who are much older, and other respite services lack the social element of Rachel and Robin House.

As a result, Mr Watson, who also has DMD, raised a petition at the Scottish Parliament calling for the creation of respite facilities for adults with life-shortening conditions. His petition has now been forwarded to the Health and Sport Committee.

This would usually be regarded as progress towards the issue being addressed. But those campaigning for new hospice facilities for 21-45 year-olds were left disappointed.

They had been eagerly anticipating a debate on the issue at Holyrood, but this will not now take place. "I was very disappointed with this news because a Chamber debate would have been a big step forward," Mr Watson said. Jackie Baillie MSP, who has been involved with their campaign, says expectations had been raised by the planned debate.

Being referred on from the petitions committee could mean Mr Watson's demands get heard in the long run - the committee is already asking Health Minister Alex Neil to explain what the Scottish Government considers should be done.

But I imagine if you have a terminal illness, anything that looks like delay is a hard blow to take. To add insult to injury, the Parliament chose to debate the killing of birds of prey in Ross-shire last week, Mr O'Hagan points out. "What takes priority? Raptors get a debate in the Chamber right away. These boys don't get anything."

Campaigners would like to see a purpose-built facility, as was built in England when a similar problem arose. That may be unlikely, however, as Mr Watson realises. Councils are moving away from the use of fixed buildings and are pinning their hopes, as he puts it, on self-directed support.

"We all totally disagree with this and would like them to back up this statement, because we have seen no evidence of it," he says.

Contextual targeting label: 
Local government

Commenting & Moderation

We moderate all comments on HeraldScotland on either a pre-moderated or post-moderated basis.
If you're a relatively new user then your comments will be reviewed before publication and if we know you well and trust you then your comments will be subject to moderation only if other users or the moderators believe you've broken the rules

Moderation is undertaken full-time 9am-6pm on weekdays, and on a part-time basis outwith those hours. Please be patient if your posts are not approved instantly.

233137