This was the call from the Muscular Dystrophy Campaign urging the National Institute for Health and Clinical Excellence (NICE) to develop a clinical practice guideline for Duchenne muscular dystrophy.
The topic suggestion submitted by the Muscular Dystrophy Campaign has been endorsed by a number of leading organisations such as Treat-NMD and professional bodies including the British Myology Society and the British Paediatric Neurology Association. We also have the support of patient organisations including the Duchenne Family Support Group.
There is an urgent need to raise standards of care for this patient group and to overcome current inequalities which exist in different parts of England and Wales. In some areas standards are not being implemented and patients are receiving weak services.
The Muscular Dystrophy Campaign has identified early deaths in certain areas and poor quality of life for young me affected by Duchenne muscular dystrophy.
Speaking about the topic suggestion, Philip Butcher, Chief Executive of Muscular Dystrophy Campaign, said:
We have uncovered huge disparities in access to specialist care for people affected by muscular dystrophy and related conditions in different parts of the UK.
Guidelines must be introduced and fully implemented for each muscular dystrophy and neuromuscular condition to ensure that people receive adequate and appropriate care and support.
The topic suggestion for a clinical practice guideline for Duchenne muscular dystrophy is an important step towards raising standards of care.
It is hoped that a NICE guideline for Duchenne muscular dystrophy would take into consideration the clinical practice guideline which is being developed under the auspices of the Centres for Disease Control in America, has involved the participation of over 100 international experts and is very nearly ready for submission for publication. The guideline is being coordinated in the UK by Treat-NMD, a pan European ‘network of excellence’ based in Newcastle.