Motor Neurone Disease
(asked on 22nd July 2024) - View Source
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department is taking steps to (a) increase research funding, (b) improve access to specialist care and (c) provide better support for (i) people living with motor neurone disease and (ii) their families.
The Government’s responsibility for delivering motor neurone disease (MND) research is shared between the Department of Health and Social Care, with research delivered by the National Institute for Health and Care Research (NIHR), and the Department of Science, Innovation and Technology, with research delivered via UK Research and Innovation (UKRI). Significant recent investments include, but are not limited to, £12.5 million to support the best science in the UK Dementia Research Institute, £8 million for early phase clinical research and the Experimental medicine Route To Success in amyotrophic lateral sclerosis platform trial, and £6 million for the MND Translational Accelerator. In 2022, Government funders also published a joint NIHR and Medical Research Council Highlight Notice, inviting researchers across the academic and life sciences sector to submit applications via open call. The MND Highlight Notice invites proposals for research to address important health and social care questions, and seeks to increase the amount of MND research funded.
NHS England commissions the specialised care and treatment that patients with MND may receive from the 24 specialised neurology centres across England. NHS England has published a service specification setting out national standards for organisations that provide specialised neurological care. This sets out that the service should improve the quality of life and the experience of the services for patients and their carers. The support provided includes the provision of multi-disciplinary care from specialist clinicians, including neurologists, specialist nurses, speech and language therapists, dietetics and nutrition, and physiotherapy, depending on individual clinical need. Further information is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf
At the national level, there are a number of initiatives supporting service improvement and better care for patients with MND, including the RightCare Progressive Neurological Conditions Toolkit and the Getting It Right First Time Programme for Neurology. NHS England has also established a Neurology Service Transformation Programme, a multi-year, clinically led programme to develop a new model of integrated care for neurology services, including MND.
In addition, NHS England commissions a specialised communication aids service known as Augmentative and Alternative Communication, as set out in the published service specification. This service supports individuals with rapidly degenerative conditions, including MND, who are prioritised for this service. Further information is available at the following link: