Asked by: Alex Sobel (Labour (Co-op) - Leeds North West)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the support (a) his Department and (b) the NHS provides to people diagnosed with Motor Neurone Disease and their families.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
No assessment has been made. Individuals with Motor Neurone Disease (MND) will receive access to a range of NHS services. 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 quality of life and experience of services for patients and their carers.
NHS England has also established a Neurosciences Service Transformation Programme, a multi-year, clinically-led programme to develop a new model of integrated care for neurology services, including MND.
Asked by: Andrew Lewer (Conservative - Northampton South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, which hospital trusts (a) employ at least one and (b) do not employ a motor neurone disease clinical nurse specialist; and, of the trusts that employ at least one, how many each of them employed in the latest period for which information is available.
Answered by Will Quince
NHS England publishes Hospital and Community Health Services workforce statistics for England, which are available at the following link:
https://digital.nhs.uk/data-and-information/publications/statistical/nhs-workforce-statistics
The published data does not provide a breakdown by nurse specialty.
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.
Asked by: Jim Shannon (Democratic Unionist Party - Strangford)
Question to the Department of Health and Social Care:
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.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
The information is not held in the format requested.
Asked by: Alex Norris (Labour (Co-op) - Nottingham North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to improve support for people who care for individuals with motor neurone disease.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
Local authorities are required under the Care Act 2014 to undertake a Carer’s Assessment for any unpaid carer who appears to have a need for support and to meet their eligible needs on request from the carer.
Funding for respite and short breaks for unpaid carers has been included in the National Health Service contribution to the Better Care Fund (BCF) since 2015. In 2022/23, £291.7 million of BCF funding has been earmarked to provide short breaks and respite services for carers, as well as advice and support to unpaid carers.
Asked by: Richard Fuller (Conservative - North East Bedfordshire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the level of awareness of motor neurone disease patients of their right to a carer's assessment; and if he will take steps to (a) identify and (b) help tackle barriers to securing a carer's assessment.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
The Department has no plans to make an assessment of the level of awareness of motor neurone disease patients of their right to a carers’ assessment. Under the Care Act 2014, local authorities are required to undertake a Carer’s Assessment for any unpaid carer who appears to have a need for support and to meet their eligible needs on request from the carer.
The Health and Care Act 2022 includes provisions for the Care Quality Commission (CQC) to assess the performance of local authorities’ delivery of their adult social care duties as set out in part one of the Care Act 2014, including local authorities’ responsibilities to undertake an assessment of a carer's needs of support. CQC's duties will commence from April 2023.
Asked by: Jim Shannon (Democratic Unionist Party - Strangford)
Question to the Department of Health and Social Care:
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.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
The information is not collected in the format requested.
Asked by: Fabian Hamilton (Labour - Leeds North East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to his Department's announcement that it would invest £375 million in neurodegenerative disease research, published on 14 November 2021, what progress his Department has made on releasing at least £50 million of funding for research into motor neurone disease; and what advice his Department provides to organisations who wish to access that funding.
Answered by Will Quince
Through this investment, the Government has collaborated with charity funders to deliver a £4.25 million partnership with the motor neurone disease (MND) research community to increase research and accelerate the delivery of new treatments. The National Institute for Health and Care Research (NIHR) is commissioning up to 19 policy research units, which will include units on end of life care and on dementia and neurodegeneration. This will complement existing applied research in these areas with dedicated policy research relevant to MND. The NIHR welcomes research applications from MND researchers and has launched a highlight notice which invites MND research proposals.
Asked by: Lord Rogan (Ulster Unionist Party - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what progress they have made towards releasing the £50 million they pledged in November 2021 to fund Motor Neurone Disease; and what are the reasons for the delay.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
Funding for Motor Neurone Disease research has always been available via open competition. In 2021/22, 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. On 12 December 2022 the Government announced how at least £50 million of committed funds for Motor Neurone Disease (MND) research would be allocated over the next five years:
£8 million to early phase clinical research for MND via the National Institute for Health and Social Care Research (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 (UKDRI), where seven of its fifty research programmes are focused on MND.
£6 million connect the UK DRI to the Francis Crick Institute Laboratory of Molecular Biology, the MND collaborative partnership, and the UK Dementias Platform.
The remainder (at least £21.5 million) is available via an NIHR and the Medical Research Council (MRC) rolling call for MND research supported by a joint Highlight Notice.