Thursday 24 September 2009
Major neuromuscular services review in Scotland announced
Deputy First Minister, Nicola Sturgeon MSP, yesterday evening pledged that people with muscle disease in Scotland will receive the care support that they need after announcing a thorough review of neuromuscular services.
Campaigners had called for an urgent review of health and social care services.
The Muscular Dystrophy Campaign's Building on the Foundations in Scotland report revealed that the 5,500 adults and children living with muscle disease in Scotland face a ‘postcode lottery' of specialist services.
Speaking yesterday at Holyrood, Nicola Sturgeon MSP, Deputy First Minister and Cabinet Secretary for Health and Wellbeing, said:
We want to build on the work already done by the Muscular Dystrophy Campaign and the Scottish Muscle Network to take a systematic look at services across Scotland for people living with neuromuscular conditions, such as myotonic dystrophy and Duchenne Muscular Dystrophy. The Scottish Government has made funding of £35,000 available to allow the network to take this forward.
It's important that people living with these conditions get the care and support they need. We want to make sure that's achieved and that people benefit from the improvements in life expectancy and quality of life we know can be attained.
Robbie Warner, Chair of the Scottish Council of the Muscular Dystrophy Campaign, whose son Eoghan has Duchenne muscular dystrophy, said:
I congratulate Nicola Sturgeon for her Government's commitment 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 announcement of a review was made as families and supporters gathered at a lobby yesterday at the Scottish Parliament in Edinburgh. One of the crucial issues raised was the fact that there are currently only two part-time Muscular Dystrophy Care Advisors (RCAs), which is inadequate to care for the 5,500 people with muscular dystrophy in Scotland. The Regional Care Advisor posts are a vital resource for coordinating services and providing support, especially during the transition to adulthood.
The Muscular Dystrophy Campaign, together with the leading neuromuscular clinicians in Scotland, believe that more full time care advisors are required to serve all people living with muscle disease in Scotland.
For more information about the campaign in Scotland, please get in touch:
020 7803 4847
campaigns@muscular-dystrophy.org
