To: Scottish and UK governments and the Muscular Dystrophy Campaign

Create respite facilities to support disabled adults with life-shortening conditions aged 21-45

Create respite facilities to support disabled adults with life-shortening conditions aged 21-45

I am calling on the Scottish and UK governments to work together and help to create suitable adult respite services for those aged 21-45, I think they have a responsibility to these young adults and their families to address this gap in provision. I also think that the Muscular Dystrophy Campaign 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 Muscular Dystrophy . They should be working with other hospices and care providers to see if some could provide facilities for young adults, or better still create new purpose built facilities for this age group.

Why is this important?

Throughout the United Kingdom there is a forgotten group of people. A group of people, many thousands of them, with severe, life-shortening conditions who, because of medical advances are living well into adulthood when in the past they may not have been expected to, find themselves lost in limbo in a position when they are too old to use children's respite services and yet too young for the available adult respite services. 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 this age group of people to go to as children's respite services are. They find themselves stuck in the middle with nowhere to go.

These respite breaks are vitally important to the young adults and their families, especially for the majority who still live at home with their parents, because it is the only time when the young adults get a break from their parents and for some they can be quite isolated at home so these breaks may be their only opportunity to socialise with others of a similar age. Equally as important if not more so is the break it gives families; the parents get a chance to relax and recharge their batteries, safe in the knowledge that their son/daughter is being well cared for and enjoying themselves. However, without any respite services the 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 a life-shortening condition 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?

The following articles were printed in The Glasgow Herald newspaper dated 10 May 2013, and they highlight the problems facing young disabled adults with life-shortening conditions. The links to these articles are as follows:-
http://www.heraldscotland.com/news/home-news/young-adults-are-being-left-in-limbo-by-hospice-decision.21041635
http://www.heraldscotland.com/news/health/hospice-charity-sets-age-limit-on-services-for-young-people.21041823

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Reasons for signing

  • Support needed for many families as childrens respite services will be capped at age 21. The families will still need short term respite to enable them to have a break from caring for their families
  • An absolute no-brainer - carers need a break sometimes, and the ill need proper care while they also have a break and a change of scenery.
  • it is important that people get support that they need to help them with difficulties in life and not be discriminated against.

Updates

2013-07-16 17:51:52 +0100

1000 signatures reached