Asked by: Julian Sturdy (Conservative - York Outer)
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 - Minister of State (Department of Health and Social Care)
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:
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:
Written Evidence Feb. 08 2024
Inquiry: Energy bills for domestic customersFound: by MND Association (ENB0010) About MND and the MND Association Few conditions are as devastating as motor
Mentions:
1: Doris, Bob (SNP - Glasgow Maryhill and Springburn) Ahead of this afternoon’s debate, Marie Curie Scotland and Motor Neurone Disease Scotland gave us a briefing - Speech Link
2: Marra, Michael (Lab - North East Scotland) There are certainly issues to deal with in the post-Covid environment, with its burden of legacy disease - Speech Link
Feb. 06 2024
Source Page: Information on the CivTech programme: FOI ReviewFound: dexterity to select number buttons, or live with lifelong or acquired conditions, such as cerebral palsy or motor
Mentions:
1: Marion Fellows (SNP - Motherwell and Wishaw) households, as they would not survive.A coalition of charities—Age UK, Scope, Fair By Design, Mencap, the Motor - Speech Link
Oral Evidence Feb. 05 2024
Inquiry: Disabled people in the housing sectorFound: I am thinking about conditions such as motor neurone disease , which moves very quickly .
Oral Evidence Feb. 05 2024
Inquiry: Disabled people in the housing sectorFound: I am thinking about conditions such as motor neurone disease, which moves very quickly.
Written Evidence Feb. 02 2024
Inquiry: Disabled people in the housing sectorFound: utilise DFG effectively on a new scheme to support people with rapidly progressing conditions such as Motor
Mentions:
1: Philip Davies (Con - Shipley) Two groups of patients who struggle with that are motor neurone disease sufferers and cancer patients - Speech Link
2: Jo Churchill (Con - Bury St Edmunds) Its work is incredibly important—its motor neurone disease campaign has been mentioned—but we must also - Speech Link
Mentions:
1: Janet Daby (Lab - Lewisham East) What steps she is taking to improve healthcare outcomes for patients with sickle cell disease. - Speech Link
2: Andrew Stephenson (Con - Pendle) We are working hard to provide the best possible care to those living with sickle cell disease. - Speech Link
3: Andrew Lewer (Con - Northampton South) cause of ongoing problems affecting access to riluzole, the only licensed drug for the treatment of motor - Speech Link
4: Derek Twigg (Lab - Halton) The rate of premature deaths from cardiovascular disease has now increased in England for three years - Speech Link