I’m 27 years old, I live in Scotland and I have Duchenne Muscular Dystrophy. Since I was 12 years old I have been going to Rachel House Children’s Hospice in Kinross, one of only 2 children’s hospices in the country, the other one being Robin House in Balloch, both of which are run by the charity Children’s Hospice Association Scotland (CHAS). I usually go for 3 or 4 weekends a year, plus a slightly longer stay in the summer. It lets me socialise with other people who have a similar condition, play computer games, watch films and go on outings. I love my time there, I have had many great experiences there and made many great friendships with people that I otherwise would never have met.
CHAS provides end-of-life care for children who are terminally ill, and respite breaks for children with life-limiting conditions. While it does not usually start working with young people of 16 or above, it has never had an age limit on how long existing users can carry on going to its hospices. But now, CHAS has introduced an Upper Age Limit of 21, so myself along with around 100 other young adults and their families in Scotland alone, will now need to look elsewhere for respite support.
However, the problem is there is nowhere else suitable for us to go to. Currently, all adult hospice services are set up largely to cater for much older adults suffering from cancer and other terminal illnesses, they are just as unsuitable a place for our age group to go to as children’s respite services are. It is great that because of medical advances many of us are living well into adulthood when in the past none of us would have been expected to. But no-one seems to have been prepared for this, and now we find ourselves in a position where we are too old to use children’s respite services and yet too young for the available adult respite services. We find ourselves stuck in the middle with nowhere to go.
There are many reasons why having access to appropriate respite care is so vital for us young adults and our families, especially for the majority of us who still live at home with our parents. It is the only time when we get a break from our parents and for some of us we can be quite isolated at home so these breaks may be our only opportunity to socialise with others of a similar age. Equally as important if not more so is the break it gives our families; our parents get a chance to relax and recharge their batteries, safe in the knowledge that we are being well cared for and enjoying ourselves.
However, without any respite services our parents will have to provide constant care 24 hours a day 365 days a year without a break which will lead to high stress levels for the parents, carer burnout and many other health problems, because caring for a disabled adult with Muscular Dystrophy, particularly Duchenne, is a full-time job. Its not acceptable in any other job to be expected to work all year round without even a single day of rest, so why should it be acceptable in this case?
It is an unacceptable situation, and I think the Scottish and UK governments should be doing something to address this gap in provision. I also feel that the Muscular Dystrophy Campaign and other MD charities should be doing all they can to help because a lot of the people who are affected by the lack of adult respite services have Duchenne Muscular Dystrophy. There are also people with other conditions, such as MS, who are affected by this, but there are a large number who have Muscular Dystrophy. Its great that a lot of work is being put into research for a cure, but I feel that the charities should put more priority towards supporting and improving the quality of life of the current generation of Muscular dystrophy sufferers as well as trying to find a cure to help future generations. More focus needs to be put on those with Duchenne who are in adulthood, instead of just focussing on a cure which is very unlikely to be available in any of our lifetimes. We want to concentrate on being able to make the most of our lives while we are here, and to do that we need a good quality of life, and good respite care helps give us that.
I know there are Centres of Excellence that have been built, but these have only been built in England, very little of the money is ever used to help those of us in Scotland who have MD. But after having spoken to a number of people in England who also have Muscular Dystrophy and are in the age group 21-45 it is clear that all over the UK there are absolutely no respite services to support those of us who have lived into adulthood with Muscular Dystrophy, not just in Scotland. Once they turn 21, or in some areas 18, they can no longer attend children’s respite services and because there are no suitable adult respite services for them to move onto, their families are left to cope without a break and with no support.
Therefore I feel that the all MD charities should be working with other hospices and care providers to see if some could provide facilities and suitable care for young adults with Duchenne, or better still create new purpose built facilities for our age group, either by using some of the resources they have or through fundraising. There are hospices specifically for conditions such as Cancer, e.g. Marie Curie, Accord Hospice. Why cant there be purpose built hospices specifically for Muscular Dystrophy sufferers too? It is definitely an issue that needs to be looked at, thankfully as a result of many DMD sufferers living far longer lives, through their late twenties, into their thirties and sometimes even beyond.
I have created a petition about this issue along with a Facebook page to allow people to keep up to date with the progress of the petition (see below for web links). I would really appreciate it if everyone could sign my petition if you haven’t already done so and share it with everyone you know. It really is a vitally important issue and your help and support really means a lot to me. The more signatures I get the more impact my petition will have when I go to the Scottish Parliament on the 13th of June to talk about it. Thanks for taking the time to read this.
Facebook page: www.facebook.com/DisabledAdultRespite