Action Duchenne Supports Walton Report Findings And Renews Calls For 'Centres Of Excellence' Approach To Treatment Of Muscular Dystrophy

Main Category: Muscular Dystrophy / ALS
Article Date: 26 Aug 2009 - 0:00 PDT

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Walton Report confirms 'postcode lottery' to life expectancy for patients living with muscular dystrophy

Action Duchenne, the charity campaigning to find a cure and improve treatments for Duchenne Muscular Dystrophy the most common and severe form of muscular dystrophy, today renews its calls for more 'Centres of Excellence' for the treatment of the condition. The Walton report, published today, finds that life expectancy in the North East is 30 for muscular dystrophy patients where as it is 18 or 19 in the South West. This is no co-incidence as the North East is served by the Newcastle Centre of Excellence. There are only two in the country, the other being at Great Ormand Street Hospital in London. Action Duchenne has been fighting to raise awareness of these outrageous inequalities of care for several years.

Nick Catlin, CEO of Action Duchenne, commented, "Action Duchenne has been campaigning for several years now to extend the 'Centres of Excellence' model of care to other regions within the UK. The care received by the highly qualified and experienced teams at these centres is proven to prolong the life of people with muscular dystrophy and, as importantly, to improve their quality of life. We believe every patient should have access the multi-disciplinary care that the Centres of Excellence offer within 50 miles of their home."

Earlier in 2009 Action Duchenne published the findings from its own Standards of Care consultations. The consultations, which were held with parents of children and young men living with Duchenne at 13 locations covering every region of the UK and Northern Ireland, highlighted how badly let down many feel regarding the quality of medical care received, with only 8% saying that they received excellent care.

The consultations aimed to assess the current standard of care available to Duchenne families, current good practice within the UK, where parents were experiencing gaps in services, where there was sub-standard care and whether the lack of services is a UK-wide problem. The figures from the survey make shocking reading, as overall 35% of parents felt that their child received poor or really poor medical care, and 32% felt that their child received only adequate treatment. As the children get older and the condition worsens, so the medical care requirements increase, yet with the transfer to adult care the service received deteriorates even further. Most reported severe difficulties in gaining access to specialist neuromuscular consultants and life saving assessments by cardiologists and respiratory consultants.

Amongst the families that have access to one of the two Centres of Excellence in Newcastle and Great Ormond Street Hospital London 90% felt that they got good or excellent treatment. Stark contrast to the rest of the families that do not have access to these services, and in a desperate bid to get treatment for their children more and more families are choosing to travel from all over the country to the two centres, threatening to overwhelm services.

Duchenne Muscular Dystrophy affects 1 in every 3,500 boys and young, and occasionally girls also. Although there are 40,000 sufferers worldwide, awareness of DMD is very low. Duchenne affects the heart and respiratory system and many patients do not live past their twenties. It is the most common fatal genetic condition affecting children in the United Kingdom. Action Duchenne is the only national charity exclusively funding research for a cure for Duchenne.

Nick Catlin continued, "It is a scandal that so many young people who are living with Duchenne and other forms of muscular dystrophy are not getting access to the best medical care. For those with Duchenne this is a life and death issue. Not surprisingly we found that families that live within 50 miles of the two Centres of Excellence set up for Duchenne and other forms of muscular dystrophy in Newcastle and London received appreciably better care. As found by the Walton report, living in certain parts of the UK means an appreciably short life expectancy due to sub-standard care. This is an outrageously unfair situation and has to be redressed immediately because these young people don't have much time, and they need better medical care now."

Source
Action Duchenne