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Press Release
2 June 2009

Action Duchenne lobbies Scottish Parliament for Centres of Excellence and ‘Best Practice’ standards of medical care for all living with Duchenne Muscular Dystrophy

Parents and boys living with Duchenne march on Holyrood to raise awareness of heartbreaking disease and demand an end to sub-standard care in Scotland


On 3 June, boys living with Duchenne Muscular Dystrophy, their families and supporters will be lobbying MSPs and marching to the Scottish Parliament at Holyrood, Edinburgh to bring an end to the continuing serious under-funding for research and treatment of the condition. The lobby action is being organised by Action Duchenne, the only UK charity dedicated solely to raising awareness and raising funds for research into treatments and finding a cure, and providing support for families living with Duchenne. Results from a recent survey conducted by Action Duchenne show that parents in Scotland feel that their children are receiving appreciably poorer care than their neighbours living across the border in England, that have access to the Centre of Excellence in Newcastle. There are currently no Centres of Excellence for the treatment of Duchenne in Scotland.

Duchenne Muscular Dystrophy currently has no cure. It is a severe muscle wasting disease that affects boys and young men, resulting in boys being in a wheelchair by aged 10 and without treatment, dying in their late teens or early twenties. The average life expectancy is lower in Scotland than in England due to poorer standards of care. Duchenne affects 2,500 people in the UK and about 40,000 people worldwide. The gene that causes Duchenne was discovered in 1986, and yet since then the Government has provided only £2.2m of funding for research and clinical trials for treatments and a cure.

The pressure mounted by Action Duchenne has had positive results. In April 2009 the Scottish Parliament abolished means testing for housing adaptations. Also, since Action Duchenne has been lobbying in Scotland a new post for the Scottish Muscle Network has been funded and an extra £16m has been pledged for wheelchair services in Scotland. Following these successes, Action Duchenne will be calling on the Scottish Parliament to:
• Commit to funding research facilities at centres in Scotland, to ensure that new drugs being developed for Duchenne at trial stages are available for all families in Scotland at centres that can administer and monitor them effectively and safely.
• Ensure that all people living with Duchenne are given immediate access to new drugs and treatments
• Ensure that all people living with Duchenne are supported by a Centre of Excellence within 50 miles of their home (currently there are only two, one in Newcastle and one at Great Ormond Street Hospital in London), with access to multi-disciplinary teams trained in the treatment of Duchenne patients
• Ensure that all people living with Duchenne receive medical care in accordance with the internationally agreed Standards of Care for Duchenne Muscular Dystrophy
• Significantly improve the care received by patients as they reach adulthood.

People living with Duchenne will be travelling to Edinburgh to take part in the lobby from all around the country. For many this will be a difficult journey due to the severe nature of the condition.

Nick Catlin, CEO of Action Duchenne said, “Action Duchenne has recently published its white paper ‘Time to Stop Wasting – An End to the Postcode Lottery’. This is based on findings from our nationwide consultation process where we spoke to many families affected by Duchenne. The process confirmed that most parents in Scotland feel that their children are receiving sub-standard medical care. Duchenne is a complicated condition where expert medical care can make an enormous difference to length and quality of life. Currently there are no Centres of Excellence in Scotland. We are calling for more Centres so that families can receive the best medical care within 50 miles of their homes. This is the very least we should expect, but again we need Government support and funding to make this a reality.”

Action Duchenne has also arranged Lobbies to the UK Government, Welsh and Northern Ireland National Assemblies.

-ends-



Notes to Editors


About Action Duchenne
Action Duchenne (formally Parent Project UK) was set up by Duchenne families in 2001 to promote new research for a cure for Duchenne. The charity has a strong record in funding research and has to date funded 8 major projects costing £800,000 and has lead the £1.6m DoH funding of the MDEX project. These projects have enabled much needed early work to be completed on exon skipping and other therapeutic approaches.
Action Duchenne holds an international conference every year to bring together researchers and families to exchange new research developments and provide a vital meeting venue for scientists.

In 2005 Action Duchenne launched the Duchenne Registry, the first National Duchenne database that holds gene information of people living with Duchenne and can be used to speed up the recruitment of patients for clinical trials.

In 2006 Action Duchenne launched a comprehensive learning and behaviour toolkit for use by parents and education professionals.

For more information please visit: www.actionduchenne.org

Editors Contacts
Nick Catlin
CEO, Action Duchenne
Tel: 0208 556 9955
Email: nick@actionduchenne.org


Andreina West
PR Artistry Limited
Tel: 01491 639500
email: Andreina@pra-ltd.co.uk






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