Tuesday 20 September 2011
Invest to Save campaign makes its mark in Scottish Parliament
As part of our Invest to Save campaign, the Muscular Dystrophy Campaign launching a new report, Invest to Save: improving services and reducing costs in Scotland, at the Scottish Parliament today.
This follows an investigation into the cost benefit of improving neuromuscular services to prevent avoidable unplanned emergency admissions to hospital for people with muscular dystrophy and related neuromuscular conditions in Scotland.
Initially gathering outside the Scottish Parliament before heading in for the formal launch of the report, we were joined by over 50 of our supporters from across Scotland, health professionals and MSPs.
Campaigners at the event called on the Scottish Government to build on existing specialist services which could result in savings in Scotland and improve lives.
Jackie Baillie MSP, who has been leading the battle for improvements to services in the Scottish Parliament as Chair of the Cross Party Group on Muscular Dystrophy, is hosting the event and has tabled a motion in the Scottish Parliament to add weight to the campaign.
The Muscular Dystrophy Campaign continues to press for all the recommendations in the Cross Party Group's Mackie Report launched last year to be implemented.
Mark Chapman, from Edinburgh, who has Duchenne muscular dystrophy and is Chair of the Muscular Dystrophy Campaign's Scotland Muscle Group, says that for people with the condition, every day counts:
Time is just so precious for people with Duchenne. Your health can change so much in such a short time. It's a very tough thing to deal with and every family will tell you - every day counts. The right help - support, advice, equipment and physiotherapy - these things can make a huge difference to people's lives, both in quality and in length. This is why care advisor posts are so important. We simply cannot afford to wait around for these to happen.
Two part-time care advisors are not enough to cover an entire country. When you are a child the care in Scotland is pretty good. For me, I was put in touch with an expert care advisor, who was always on the end of the phone. The emotional support at this age is pretty vital. However, muscular dystrophy is progressive, and as you get older the services become thinner. By the time I started having breathing difficulties and became increasingly vulnerable in my mid-twenties all that care had dropped away.
Robert Warner, Chair of the Muscular Dystrophy Campaign's Scottish Council, which has coordinated the campaign for better care, has a seventeen-year-old son with Duchenne muscular dystrophy. He says:
The diagnosis of a muscle-wasting disease has huge impact upon a family. Its effects need to be absorbed and understood in order to accommodate the implications. Having someone in your corner who fully understands a condition and its symptoms can make a life-changing difference, for children and adults alike.
Currently here in Scotland we see a situation where services seem to tail off as patients get older, often when they need them most. The need for the three planned NHS neuromuscular care advisor posts is immediate, especially as it is a year since the recommendations of the Mackie were accepted. We urge Scotland's regional NHS planning groups to pick up the reins and make these happen without delay.
For more information about the Invest to Save campaign in Scotland, please get in touch:
020 7803 4839
campaigns@muscular-dystrophy.org
CampaignsMD Blog
Twitter: CampaignsMD
