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:
Asked by: Damien Moore (Conservative - Southport)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, what steps her Department is taking to support research into the causes of motor neurone disease.
Answered by Andrew Griffith - Minister of State (Department for Science, Innovation and Technology)
In November 2021, the Government committed to delivering at least £50 million to support motor neurone disease (MND) research over five years, 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 to submit high quality bids for open funding calls. (https://www.gov.uk/government/news/government-continues-delivering-on-50-million-funding-pledge-for-motor-neurone-disease-research)
Asked by: Damien Moore (Conservative - Southport)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what support his Department provides for research into motor neurone disease.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Government 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 for Science, Innovation and Technology, with research delivered via UK Research and Innovation (UKRI).
The Government has committed to make at least £50 million available for MND research over the next five years, ending in March 2027. Around three-quarters of the £50 million pledged funding (£36.9 million) has now been allocated to cutting edge researchers by DHSC and DSIT, less than two years since the announcement. For the remainder of the £50 million, we continue to support researchers to apply for funding via the Medical Research Council and NIHR MND highlight notice.
Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what is their current assessment of coordination of motor neurone disease research via the MND Collaborative Partnership, co-funded by the medical research charity LifeArc and the motor neurone disease patient charities MND Association, My Name’5 Doddie Foundation and MND Scotland.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The MND Collaborative Partnership is monitored by the funding partners via quarterly reporting. The Partnership was launched to bring researchers together to speed the development of effective treatments for motor neurone disease. The Government, via the Medical Research Council and the National Institute for Health and Care Research, is co-funding the £4.25 million collaborative alongside LifeArc, My Name’5 Doddie, MND Association and MND Scotland. The Government is contributing a further £2 million to focus on gathering and analysing existing data.
Asked by: Damien Moore (Conservative - Southport)
Question to the Department of Health and Social Care:
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.
Answered by Will Quince
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.
The Department, via the NIHR is not providing funding to the Brighton and Sussex Medical School to develop a treatment for MND.
Asked by: Damien Moore (Conservative - Southport)
Question to the Department of Health and Social Care:
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.
Answered by Will Quince
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.
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.
Asked by: Damien Moore (Conservative - Southport)
Question to the Department of Health and Social Care:
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.
Answered by Will Quince
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.
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.
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.
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.
£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.
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.
Asked by: Damien Moore (Conservative - Southport)
Question to the Department of Health and Social Care:
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.
Answered by Will Quince
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.
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.
Asked by: Baroness Hodgson of Abinger (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how many roundtables have been hosted by the Secretary of State for Health and Social Care with researchers and patient groups to discuss research on Motor Neurone Disease since 2021; and what plans they have to host future roundtables with these groups.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department has hosted two roundtables to discuss research on motor neurone disease (MND) since 2021. A roundtable was held in April 2021 to discuss the Government’s role in funding targeted research into MND. It was attended by the Minister of State for Social Care (Helen Whately MP) and was hosted by the National Institute for Health and Care Research Sheffield Biomedical Research Centre on behalf of the Department and a coalition of United Kingdom MND charities and researchers.
A second roundtable was hosted by the Secretary of State for Health and Social Care in February 2023 and explored the path towards treatments for MND, bringing together a number of Ministers, people with lived experience of the disease, charities, researchers, funders and policy makers. The Department does not have any current plans to host future roundtables but is working on a range of activities to progress research into MND as part of the £50 million commitment for research into the disease.
Asked by: Baroness Hodgson of Abinger (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how much of the £50 million ringfenced for research into Motor Neurone Disease in 2021 has been allocated; and what assessment they have made of progress in treating the disease.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
On 12 December 2022, the Government announced how the £50 million of committed funds for motor neurone disease (MND) research would be allocated over the next five years ending March 2027. As such, £29.5 million of Government funding has been allocated through specialist research centres and partnerships with leading researchers. The remainder, at least £20.5 million, is available via a National Institute for Health and Care Research (NIHR) and Medical Research Council rolling call for MND research supported by a joint Highlight Notice.
The £29.5 million package includes: £8 million to early phase clinical research for MND via the NIHR Biomedical Research Centres; £2 million to the MND Collaborative Partnership, for the research community to coordinate efforts, adding £1 million already contributed by government; £12.5 million to MND research in the UK Dementia Research Institute, where seven of its fifty research programmes are focused on MND; and £6 million for a translational accelerator which will connect UK Research and Innovation, the MND collaborative partnership, and the UK Dementias Platform.