22 September 2011
Highlands and Islands MSP, Rhoda Grant, has pledged to back local families affected by devastating muscle-wasting disease in their fight for specialist services, which they say would change lives while saving the NHS £millions in costs.
A report by national charity, the Muscular Dystrophy Campaign, which estimates that up to 40 percent could be wiped from the cost of distressing emergency hospital treatment by investing in desperately needed preventative health care support and equipment, was launched at the Scottish Parliament this week.
Invest to Save: Improving services and reducing costs in Scotland (link ) describes how funding for ongoing support from specialist care advisors would help patients to manage their conditions and to identify health problems before they become critical.
Muscle-wasting diseases are progressive and can cause both the muscles in the limbs and those around the heart and respiratory system to weaken over time, leaving patients vulnerable to falls, cardiac problems, chest infections and other issues requiring emergency treatment.
Campaigners have fought tirelessly for more expert neuromuscular care advisor posts to be created across Scotland, saying that the severe lack of capacity in the country means a postcode lottery for patients and services falling away as children reach adulthood.
There are currently just two part-time advisors based in Glasgow and Edinburgh, who work directly with patients and their families and advise general health professionals on dealing with rare muscle-wasting conditions.
NHS regions in England have as many as five full-time advisors to support a population of neuromuscular patients similar to Scotland’s.
Three full-time care advisor posts have been in the pipeline since the hard-hitting Mackie Report into muscle-wasting disease care in Scotland was published in September of last year. A year on, families say that they have seen no additional help on the ground and that the NHS must act now to address critical gaps in care.
Commenting on the report, Rhoda Grant MSP said:
"While it is clear that the specialist care offered to people affected by muscle-wasting disease in Scotland is of a high calibre, I was shocked to hear how few patients have access to it.
"I am offering my full support for investment to ensure that age and geography are not obstacles to the 6,000 people affected in Scotland obtaining the healthcare support that they so clearly require.
" Here we see an opportunity to save the NHS money while changing lives."
Attending the event in the Scottish Parliament, campaigner Mark Chapman, who has Duchenne muscular dystrophy, said:
"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."
The Muscular Dystrophy Campaign’s Director of Care, Support and Campaigns, Nic Bungay, said:
"We are delighted to have the support of Rhoda Grant MSP in our campaign for investment in services to improve health care and save money.
"She is a powerful voice in the Scottish Parliament for local patients and families living with muscle-wasting diseases."
( photograph of Rhoda with campaigners outside the Scottish Parliament >>> )
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