EK MSP backs fight to improve muscular dystrophy services
EAST Kilbride MSP Andy Kerr is backing a campaign to improve services for people affected by muscular dystrophy. Mr Kerr voiced his support after meeting activists who were lobbying the Scottish Parliament.
The Muscular Dystrophy Campaign is calling for an “urgent review of health and social care services after it emerged 5500 adults and children living with muscle disease in Scotland face a ‘postcode lottery’ of specialist services.”
The Scottish Government has agreed to investigate the situation and campaigners are keen to ensure action is taken as a result.
Mr Kerr, Scotland’s former Health Minister, said: “I was delighted to meet with local campaigners and families keen to see improvements in access to specialist care.
“They can certainly count on my full support in the fight against muscle disease in Scotland.”
Robbie Warner, chair of the Scottish Council of the Muscular Dystrophy Campaign, whose son Eoghan has Duchenne muscular dystrophy, said: “I am delighted that we can count on the support of Andy Kerr MSP in our campaign to enhance essential services for families like mine who are living with this devastating condition.
“We’re now calling on the Scottish Government, health boards and councils to build on this commitment and ensure that services urgently improve for patients with rare muscle wasting diseases.”
The Muscular Dystrophy Campaign’s “Building on the Foundations” report recently highlighted gaps in care which included:
There are currently only two part-time care advisors (RCAs) to care for the 5500 people with muscular dystrophy in Scotland.
There is currently only three clinical specialist physiotherapists (CSPT) in Scotland for people with muscular dystrophy and related conditions.
Waiting times for wheelchair assessments vary dramatically across Scotland from just two weeks in one health board to over 20 weeks in another; delivery of a wheelchair from receipt of referral can take over 30 weeks in some areas.
The Muscular Dystrophy Campaign, together with the leading neuromuscular clinicians in Scotland, believe more full-time care advisors are required to serve all people living with muscle disease in Scotland.
The Muscular Dystrophy Campaign is the leading UK charity focusing on muscle disease. It has pioneered the search for treatments and cures for 50 years and is dedicated to improving the lives of all people affected by muscle disease.
