The report, launched last month at a meeting of the Cross Party Group on Muscular Dystrophy in the Scottish Parliament, follows Freedom of Information requests to Health Boards and tells how young disabled people in Scotland have limited access to hospices or respite facilities, once they reach 18 years of age.
The Give us a Break report emphasises that many children born with life-limiting conditions, such as Duchenne muscular dystrophy, now live well into adulthood. However, adult and respite care services in Scotland have not adapted to recognise this. The Muscular Dystrophy Campaign (MDC) calls upon on the Scottish Government, local authorities and health boards to launch an urgent review of facilities for this “forgotten” age group.
The campaign quotes Robert Watson (28) from Renfrew who has Duchenne muscular dystrophy, as saying:
“Adult hospice services are set up largely to cater for much older adults who have cancer and other terminal illnesses – they are just as unsuitable a place for young adults to go to as children’s respite centres are.
“Respite breaks are often the only type of holiday that people can go on, so to lose all the benefits that they bring would be devastating. For me and many other young adults in Scotland, a respite break is a chance to have time away from parents and from the isolation we can feel from being at home most of the time.
“It’s a great chance to socialise with other people the same age, who have the same or similar conditions. Equally as important is the break it gives our families, who are given the chance to recharge their batteries. The average weekday for my dad begins at 6.15am and by the time my parents have put me to bed, it is sometimes midnight before he gets to bed himself. Without respite services, some carers find themselves forced to provide constant care 24 hours a day 365 days a year, putting them at risk of burn-out.
“As time ticks on and more young people reach the cut-off age of 21, the number of people who will need age-appropriate respite services will only keep on increasing. We need to do something now, before things become too desperate.”
“There are no services for people in our age group – there is nothing between CHAS services for children and hospices for older adults who are in their 50s and 60s, who are mainly suffering from cancer and other terminal illnesses. We are asking, “What about us?”, as we
seem to be a forgotten group that is stuck in the middle. With advances in medical care and support, many people with severe physical disabilities such as Duchenne muscular dystrophy are now living significantly longer, but no one seems to have been prepared for
that.”
Read more about the campaign here.
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