Muscular Dystrophy

(asked on 22nd January 2018) - View Source

Question to the Department of Health and Social Care:

To ask Her Majesty's Government what assessment they have made of services to monitor and support patients with Duchenne Muscular Dystrophy who are experiencing respiratory decline.


Answered by
Lord O'Shaughnessy Portrait
Lord O'Shaughnessy
This question was answered on 5th February 2018

No specific assessment has been made.

NHS England commissions specialised neurological services from 24 centres at a national level, including some services for patients with neuromuscular disorder such as Duchenne muscular dystrophy. Two service specifications, one for adults and one for children, have been developed by NHS England to set out what these providers must have in place to deliver high quality neurological and neuromuscular care. A requirement for neuromuscular services is that patient clinics ensure they identify those at risk of respiratory problems and refer them for specialist respiratory assessment and monitoring. The specifications set out the breadth of these services and the objectives for their delivery, including clinical assessment and monitoring in respiratory care and respiratory failure. Copies of 2013/14 NHS Standard Contract for Neurosciences: Specialised Neurology (Adult) and 2013/14 NHS Standard Contract for Paediatric Neurosciences: Neurology are attached.

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