Motor Neurone Disease

(asked on 20th February 2024) - View Source

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what steps she is taking to support people living with motor neurone disease.


Answered by
Andrew Stephenson Portrait
Andrew Stephenson
Minister of State (Department of Health and Social Care)
This question was answered on 27th February 2024

The National Institute for Health and Care Excellence has published a clinical guideline on the assessment and management of motor neurone disease (MND), to support its diagnosis. The guideline recommends coordinated care for people with MND, using a clinic based, MND specialist, multi-disciplinary team approach. The core multi-disciplinary team should consist of healthcare and other professionals with expertise in MND, and should include specialist nurses.

The Government has committed to delivering at least £50 million to support MND research over five years, from 2022 onwards, as part of a package of £375 million for research into neurodegenerative diseases. In June 2023, the Government announced that more than £35 million of the £50 million pledged to cutting-edge MND research has now been allocated, just two years into a five-year funding commitment. Work continues at pace to support MND researchers in submitting high-quality bids for open funding calls. Further information is available at the following link:

https://www.gov.uk/government/news/government-continues-delivering-on-50-million-funding-pledge-for-motor-neurone-disease-research

NHS England commissions specialised services to support people living with MND, as set out in the published service specification for specialised neurology services. The support provided includes the provision of multi-disciplinary care from specialist clinicians, including neurologists, specialist nurses, speech and language therapists, dietetics and nutrition support, and physiotherapy, depending on individual clinical need. The service specification for specialised neurology services is available at the following link:

https://www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf

In addition, NHS England commissions a specialised communication aid service known as Augmentative and Alternative Communication, as set out in the published service specification. This service supports and prioritises individuals with rapidly degenerative conditions, including MND. The service specification for Augmentative and Alternative Communication, is available at the following link:

https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2016/03/aac-serv-spec-jan-2016.pdf

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