A newly launched Muscular Dystrophy Campaign report highlights the fears of young disabled Scots that an alarming lack of hospice and respite facilities will leave them either isolated at home or reliant on facilities aimed at much older people.
Spending time at a hospice can offer vital respite to both young disabled people requiring 24-hour care and the family members responsible for their care
For young people who are dealing with life-limiting conditions, the opportunity to socialise with people of a similar age who can relate to their situation is invaluable
Adult facilities across Scotland accept referrals for young adults, but Freedom of Information requests confirm these cater to much older and elderly people and they do not offer a suitable, enjoyable break for someone in their twenties or thirties
Some young people currently access respite care through the Children's Hospice Association Scotland (CHAS). However, last year CHAS had to take the decision to cap the age of its users to 21 years old from 2017, following growing pressure on its services.
Improved healthcare and support has meant that many children born with life-limiting conditions such as Duchenne muscular dystrophy now increasingly live well into adulthood. Yet adult and respite care services in Scotland need to adapt to meet this new demand on hospice and respite facilities, which will only increase with time.
The Muscular Dystrophy Campaign is now calling on the Scottish Government, local authorities and Health Boards to launch an urgent review of facilities for this "forgotten" age-group, with a view to bringing forward costed proposals in the next six months.
Robert Watson (28) from Renfrew has Duchenne muscular dystrophy, and has played a leading role in raising awareness of the issues surrounding respite care for young disabled Scots. Robert said:
"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."
Jackie Bailie MSP and Chair of the Cross Party Group in the Scottish Parliament on Muscular Dystrophy, said:
"This report by the Muscular Dystrophy Campaign highlights the critical role that respite facilities play in supporting and ensuring a good quality of life for many young people living with severe disabilities in Scotland. It is clear that there is a huge gap between the provision of respite and hospice facilities for children and older people, meaning young adults in Scotland do not have access to suitable provision. With life expectancy for conditions such as Duchenne muscular dystrophy increasing, this is an unsustainable situation. CHAS, who currently provide services to approximately 100 young adults, have been forced to impose an upper age limit on their facilities, due to increased demand from children. This will come into effect in approximately three years time and we must ensure the availability of appropriate breaks for young men and women before this deadline."
Sheonad McFarlane, Chair of the Muscular Dystrophy Campaign's Scottish Council who has a daughter affected by a rare muscle-wasting condition, said:
"Respite care is a particularly vital service for young people dealing with extremely challenging health conditions such as Duchenne muscular dystrophy. Many rarely have the opportunity to cross paths with others in a similar situation and spending time with people of a similar age and who they can relate to can be an immense source of support. These breaks also give full-time carers, often family members, much needed space to recharge their energy levels.
"We need age-appropriate services which don't just focus on end of life care but go someway to enable the young people to live as full a life as possible. We need to alleviate pressure on these families who, day on day, face the challenges of living a less than straight forward life. If no one cares for the carers, who will care for those with a long-term disabling condition?"
For more information on the campaign for suitable hospice and respite facilities for young disabled adults, please contact Peter Sutton on firstname.lastname@example.org or call 020 7803 4838