3 June 2009
Action Duchenne calls for an end to the scandalous Postcode Lottery of treatment for boys and young men living with Duchenne Muscular Dystrophy
Standards of Care Survey shows that over a third of all parents of children living with Duchenne feel that their child receives sub-standard medical care
Action Duchenne, the charity campaigning to find a cure and improve treatments for Duchenne Muscular Dystrophy, has published the findings from its recent 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.
Action Duchenne is campaigning for better standards of care for Duchenne families, including the availability of more Centres of Excellence where there are multi-disciplinary teams to care for Duchenne patients. 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.
Carl Tilson, age 22 and living with Duchenne commented, “I think the work that Action Duchenne has carried in these consultation meetings is of great importance, Duchenne Muscular Dystrophy is a severe and complex disease and needs to be treated by specialists in this field.” Carl continued, “This is important because the surveys are the voices of the people and we need to stress to the government that this illness can’t be taken lightly, at this time it is a terminal illness and we need more responsive services to meet our needs.”
Nick Catlin, CEO of Action Duchenne said, “It is a scandal that so many young people who are living with Duchenne 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 in Newcastle and London received appreciably better care. In the case of families living in Scotland, their sons were likely to live shorter lives as the average life expectancy there is several years shorter than for someone living in England, due to sub-standard care. This is an outrageously unfair situation and has to be redressed immediately because these young people need don’t have much time, and they need better medical care now.”
Nick continued, “TREAT NMD has been working with international groups to formulate an internationally accepted Standards of Care document, which is are due to be published in the next few weeks. Action Duchenne fully supports this process and will be lobbying the Government to implement the Standards for all people living with Duchenne.”
The full findings of the consultations have been published in a white paper available from Action Duchenne. For a copy call Andreina West on 01491 639500 or email: Andreina@pra-ltd.co.uk
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
CEO, Action Duchenne
Tel: 0208 556 9955
PR Artistry Limited
Tel: 01491 639500
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