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1600221

	registered interest
	date	01/03/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, how many people are diagnosed with motor neurone disease in the UK as of 1 March 2023.
	tabling member constituency	Strangford
	tabling member printed	Jim Shannon
	uin	156132
	answer	answer is ministerial correction date of answer 08/03/2023 answer text <p>The information is not collected in the format requested.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 08/03/2023 14:14:04 answering member 4527 label Biography information for Helen Whately
	tabling member	4131 label Biography information for Jim Shannon

1603878

	registered interest
	date	14/03/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, how many (a) males and (b) females have been diagnosed with motor neurone disease in each of the last three years.
	tabling member constituency	Strangford
	tabling member printed	Jim Shannon
	uin	165251
	answer	answer is ministerial correction date of answer 23/03/2023 answer text <p>The information is not held in the format requested.</p> answering member constituency Faversham and Mid Kent answering member printed Helen Whately question first answered 23/03/2023 12:12:21 answering member 4527 label Biography information for Helen Whately
	tabling member	4131 label Biography information for Jim Shannon

1650054

	registered interest
	date	04/07/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, if he will provide a breakdown of how the £50 million funding ring-fenced for research into Motor-Neurone Disease is to be spent.
	tabling member constituency	Southport
	tabling member printed	Damien Moore
	uin	192421
	answer	answer is ministerial correction date of answer 07/07/2023 answer text <p>Funding for motor neurone disease research has always been available via open competition. In 2021/22, the National Institute for Health and Care Research (NIHR) spent £3.8 million on MND research, and UK Research and Innovation (UKRI), through the Medical Research Council (MRC), spent around £10.8 million.</p><p>The Government has committed to make at least £50 million available for MND research over the next five years, ending in March 2027. In June 2023, we set out how £36.5 million of the £50 million pledged to MND research is now allocated to cutting-edge researchers.</p><p>The £36.5 million package includes, £7m of new research grants allocated by the MRC, including three fellowships and four research grants. £8 million for early phase clinical research for MND, speeding up innovative new treatments for patients through the NIHR Biomedical Research Centres. This is made up of a £4.7 million investment in a collaboration of UK researchers who will take forward an early phase platform trial to screen for drugs which have the potential to be successful in clinical trials. It also includes a further £3.25 million investment to train a new group of MND researchers to support future research and £12.5 million to support the best discovery science at the UK Dementia Research Institute.</p><p>In June 2022, a £4.25 million MND collaborative partnership was launched to bring the MND research community together, for leading researchers to collaborate on accelerating delivery of new treatments, with £1 million contribution from Government. NIHR is contributing a further £2 million to the MND Collaborative Partnership led by LifeArc to focus on gathering and analysing existing data on the condition to explore the underlying causes of MND and help develop breakthrough new treatments.</p><p>£6 million fund, £3 million from MRC and £3 million from NIHR, for a translational accelerator investment which will connect the UK Dementia Research Institute, the MND collaborative partnership, and the UK Dementias Platform.</p><p>To support this work, the Government published a joint NIHR MRC Highlight Notice inviting outstanding researchers across the academic and life science sector to submit applications to an open call. For the remainder of the £50 million, we are encouraging all researchers to apply for this funding via open call.</p> answering member constituency Colchester answering member printed Will Quince question first answered 07/07/2023 13:43:50 answering member 4423 label Biography information for Will Quince
	tabling member	4669 label Biography information for Damien Moore

1650055

	registered interest
	date	04/07/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merit of funding research into low-dose interleukin 2 treatments for Motor Neurone Disease.
	tabling member constituency	Southport
	tabling member printed	Damien Moore
	uin	192422
	answer	answer is ministerial correction date of answer 07/07/2023 answer text <p>The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including research into treatments such as low-dose interleukin 2. The NIHR does not ring-fence funds for expenditure on particular topics. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.</p><p>The Government is determined to accelerate research to find a cure and develop innovative treatments which will slow or stop motor neurone disease (MND) and improve people’s lives. The Government has committed to make at least £50 million available for MND research over the next five years, ending in March 2027. In 2021/22, NIHR spent £3.8 million on MND research, and UK Research and Innovation, through the Medical Research Council, spent around £10.8 million.</p> answering member constituency Colchester answering member printed Will Quince question first answered 07/07/2023 13:15:22 answering member 4423 label Biography information for Will Quince
	tabling member	4669 label Biography information for Damien Moore

1650056

	registered interest
	date	04/07/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, how much of the £50million ring-fenced funding for Motor-Neurone Disease research (a) has been and (b) is planned to be spent on researching interleukin 2 therapies for that disease.
	tabling member constituency	Southport
	tabling member printed	Damien Moore
	uin	192423
	answer	answer is ministerial correction date of answer 07/07/2023 answer text <p>The Government has committed to make at least £50 million available for motor neurone disease (MND) research over the next five years, ending in March 2027. In June 2023, the Government set out how £36.5 million of the £50 million pledged to MND research is now allocated to cutting-edge researchers. Research activities funded by the Department via the National Institute for Health and Care Research do not include research on interleukin 2 therapies for MND.</p><p>For the remainder of the £50 million, the Government is encouraging all researchers to apply for this funding via open call. The NIHR welcomes funding applications for research into any aspect of human health, including research into therapies such as interleukin 2. NIHR does not ring-fence funds for expenditure on particular topics. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.</p> answering member constituency Colchester answering member printed Will Quince question first answered 07/07/2023 13:13:49 answering member 4423 label Biography information for Will Quince
	tabling member	4669 label Biography information for Damien Moore

1650057

	registered interest
	date	04/07/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what (a) therapies and (b) treatments his Department is funding to treat Motor Neurone Disease.
	tabling member constituency	Southport
	tabling member printed	Damien Moore
	uin	192424
	answer	answer is ministerial correction date of answer 10/07/2023 answer text <p>Patients with motor neurone disease (MND) require access to a range of NHS services. Riluzole is the only drug licensed in the UK to slow the progression of MND. Riluzole was recommended by the National Institute for Care Excellence (NICE) in 2001 for the treatment of individuals with the amyotrophic lateral sclerosis (ALS) form of MND within its licensed indications, which are to extend life or the time to mechanical ventilation for individuals with ALS. NICE is currently evaluating a potential new treatment, Tofersen, for ALS caused by SOD1 gene mutations and, subject to licensing, expects to publish guidance in July 2024.</p><p>NHS England commissions the specialised care and treatment that patients with MND may receive from the specialised neurological treatment centres across England. Integrated Care Boards are responsible for the commissioning of the non-specialised elements of treatment and care patients with MND may require. Funding decisions for both the specialised and non-specialised elements of patients’ care are made in line with local needs and priorities.</p> answering member constituency Colchester answering member printed Will Quince question first answered 10/07/2023 13:58:32 answering member 4423 label Biography information for Will Quince
	tabling member	4669 label Biography information for Damien Moore

1650058

	registered interest
	date	04/07/2023
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, whether his Department is providing funding to the Brighton and Sussex Medical School to develop a treatment for Motor Neurone Disease.
	tabling member constituency	Southport
	tabling member printed	Damien Moore
	uin	192425
	answer	answer is ministerial correction date of answer 10/07/2023 answer text <p>The Department funds research through the National Institute for Health and Care Research (NIHR). The NIHR welcomes funding applications for research into any aspect of human health, including research into treatments for motor neurone disease (MND). NIHR does not ring-fence funds for expenditure on particular topics. In all disease areas, the amount of NIHR funding depends on the volume and quality of scientific activity.</p><p>The Department, via the NIHR is not providing funding to the Brighton and Sussex Medical School to develop a treatment for MND.</p> answering member constituency Colchester answering member printed Will Quince question first answered 10/07/2023 14:11:59 answering member 4423 label Biography information for Will Quince
	tabling member	4669 label Biography information for Damien Moore

1690446

	registered interest
	date	20/02/2024
	answering body	Department of Health and Social Care
	answering dept id	17
	answering dept short name	Health and Social Care
	answering dept sort name	Health and Social Care
	hansard heading	Motor Neurone Disease
	house id	1
	legislature	25259 pref label House of Commons
	question text	To ask the Secretary of State for Health and Social Care, what steps she is taking to support people living with motor neurone disease.
	tabling member constituency	York Outer
	tabling member printed	Julian Sturdy
	uin	14853
	answer	answer is ministerial correction date of answer 27/02/2024 answer text <p>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.</p><p>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:</p><p><a href="https://www.gov.uk/government/news/government-continues-delivering-on-50-million-funding-pledge-for-motor-neurone-disease-research" target="_blank">https://www.gov.uk/government/news/government-continues-delivering-on-50-million-funding-pledge-for-motor-neurone-disease-research</a></p><p>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:</p><p><a href="https://www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf" target="_blank">https://www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf</a></p><p>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:</p><p><a href="https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2016/03/aac-serv-spec-jan-2016.pdf" target="_blank">https://www.england.nhs.uk/commissioning/wp-content/uploads/sites/12/2016/03/aac-serv-spec-jan-2016.pdf</a></p> answering member constituency Pendle answering member printed Andrew Stephenson question first answered 27/02/2024 14:00:16 answering member 4044 label Biography information for Andrew Stephenson
	tabling member	4079 label Biography information for Julian Sturdy