Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what is the current average time from test request to result for tests provided by NHS England's genomic medicine laboratories; and what assessment they have made of the impact of those turnaround times on patient access to appropriate treatment for (1) SOD1 testing in motor neurone disease, (2) germline BRCA1/2 testing in hereditary female cancers, and (3) homologous recombination deficiency testing in breast cancer and ovarian cancer.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
In December 2025, the average turnaround time for genomic tests processed through the NHS Genomic Laboratory Hubs were 42 days for the test code which includes SOD1 analysis for motor neuron disease, as well as other clinical indications, 37 to 42 days for germline BRCA1/2 testing, and 22 days for homologous recombination deficiency (HRD) testing for ovarian carcinomas. These are within the national targets of 42 days for the test code which includes SOD1 analysis for motor neuron disease and BRCA1/2 and 28 days for HRD, supporting timely clinical decision‑making. As genomic results directly inform treatment choices for motor neurone disease, hereditary female cancers, and ovarian carcinoma, maintaining these turnaround times is essential to ensuring patients can access appropriate therapies without delay.
Asked by: Nick Timothy (Conservative - West Suffolk)
Question to the Ministry of Housing, Communities and Local Government:
To ask the Secretary of State for Housing, Communities and Local Government, if he will make it his policy to introduce a fast-track process for Disabled Facilities Grants applications for people with (a) Motor Neurone Disease and (b) other terminal conditions.
Answered by Alison McGovern - Minister of State (Housing, Communities and Local Government)
I refer the hon. Member to the answer given to Question UIN 88803 on 18 November 2025.
Asked by: Will Forster (Liberal Democrat - Woking)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department has made an assessment of the effectiveness of the Rob Burrow Centre for Motor Neurone Disease; and what support the NHS provides to people with Motor Neurone Disease in southern England.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
NHS England does not commission services from the Rob Burrow Centre for Motor Neurone Disease (MND). Funding for the centre is provided by the Leeds Hospital charity service. Therefore, neither NHS England, nor the Department, have made an assessment of the effectiveness of the centre.
NHS England commissions specialised services for neurology, which includes MND. There are 27 specialised neurology centres in England, eight of which are in London, three of which are in the south-east, and two of which are in the south-west.
In August 2025, NHS England published a revised service specification for specialised adult neurology services. It outlines a number of minimum service requirements for key specialties, including neuromuscular disorders like MND, and is avaiable at the following link:
There are a number of initiatives supporting service improvement and better care for patients with MND, including the Getting It Right First Time Programme for Neurology and the RightCare Progressive Neurological Conditions Toolkit. NHS England has also established a Neurology Transformation Programme, a multi-year, clinically led programme, which has developed a new model of integrated care to support integrated care boards to deliver the right service, at the right time for all neurology patients, including those with MND.
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, if he will provide an update into his Department's research efforts into Motor Neurone Disease.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (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 Department for Science, Innovation and Technology, with research delivered via UK Research and Innovation (UKRI), primarily through the Medical Research Council for MND.
The Government is investing in MND research across a range of areas, including an £8 million investment via the NIHR into the EXPERTS-ALS, a pre-clinical study which is designed to accelerate the identification and testing of the most promising treatment candidates for treating amyotrophic lateral sclerosis (ALS), the most common form of MND.
The MND Translational Accelerator, supported by £6 million of Government funding, is connecting the UK Dementia Research Institute, the UK MND Research Institute, and Dementias Platform UK. Twelve projects have been funded through the Accelerator, and all are aimed at speeding up the development of treatments for MND.
In August 2025, the Medicines and Healthcare Products Regulatory Agency approved Tofersen to treat SOD1-ALS, a rare form of MND. Research into Tofersen was supported by NIHR’s Sheffield Biomedical Research Centre, and all three trial phases were delivered by the NIHR’s Research Delivery Network, demonstrating tangible impact of NIHR funded research into MND.
The NIHR and UKRI continue to welcome funding applications for research into MND. These applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.
Asked by: Gregory Campbell (Democratic Unionist Party - East Londonderry)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he plans to recognise and support Kevin Sinfield CBE's fundraising for motor neurone disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We pay tribute to the outstanding work that Kevin Sinfield had done to raise money for motor neurone disease (MND) charities and raise awareness of the condition. It will truly make a huge difference to those living with MND and their loved ones. We welcome the recent opening of the new Rob Burrow Centre for MND in Leeds. Kevin Sinfield’s fundraising was instrumental to this centre being upbuilt.
The Government is investing in MND research across a range of areas, including an £8 million investment via the National Institute for Health and Care Research into the EXPERTS-ALS study, a pre-clinical study which is designed to accelerate the identification and testing of the most promising treatment candidates for treating amyotrophic lateral sclerosis, or ALS, the most common form of MND.
The MND Translational Accelerator, supported by £6 million of Government funding, is connecting the UK Dementia Research Institute, the UK MND Research Institute, and Dementias Platform UK. Twelve projects have been funded through the Accelerator, with all aimed at speeding up the development of treatments for MND.
Asked by: Darren Paffey (Labour - Southampton Itchen)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to ensure that patients with the rare genetic form of Motor Neurone Disease within Hampshire have timely access to Tofersen; and what assessment he has made of regional disparities that prevent this being available across the NHS.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) is the independent body responsible for developing authoritative, evidence-based recommendations for the National Health Service on whether new medicines represent a clinically and cost-effective use of resources. The NHS in England is legally required to fund medicines recommended by NICE, normally within three months of the publication of final guidance.
NICE has selected tofersen for treating amyotrophic lateral sclerosis caused by SOD1 gene mutations as a topic for guidance development through its Highly Specialised Technology (HST) programme. The HST programme appraises medicines for the treatment of very rare, and often very severe diseases and evaluates whether they can be considered a clinically and cost-effective use of NHS resources. NICE is working with the company to confirm timelines for this evaluation. If NICE is able to recommend tofersen in draft guidance, NHS England is committed to exploring an interim funding agreement with Biogen to use the Innovative Medicines Fund to expedite NHS commissioning of the treatment as soon as a positive recommendation is made by NICE.
No assessment has been made of the extent of regional inequities in the provision of early access programmes for innovative treatments and people living with SOD1 motor neurone disease. Participation in company-led early access schemes is decided at an individual NHS trust level, and under these programmes, the cost of the drug is free to both the patients taking part in it, and to the NHS, although NHS trusts must still cover administration costs and provide clinical resources to deliver the EAP. NHS England has published guidance for integrated care systems (ICS) on free of charge medicines schemes, providing advice on potential financial, resourcing, and clinical risks. ICSs should use the guidance to help determine whether to implement any free of charge scheme including assessing suitability and any risks in the short, medium, and long term. The guidance is available at the following link:
Asked by: Lee Anderson (Reform UK - Ashfield)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to improve care for people with motor neurone disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
NHS England commissions the specialised elements of motor neurone disease (MND) care that patients may receive from 27 specialised neurology centres across England. Within these specialised centres, neurological multidisciplinary teams ensure patients can access a range of health professionals and specialised treatment and support, according to their needs.
At the national level, there are a number of initiatives supporting service improvement and better care for patients with MND, including the Getting It Right First Time Programme for Neurology and the RightCare Progressive Neurological Conditions Toolkit. NHS England has also established a Neurology Transformation Programme, a multi-year, clinically-led programme, which has developed a new model of integrated care to support integrated care boards to deliver the right service, at the right time for all neurology patients, including those with MND.
In August 2025, NHS England updated its service specification for specialised adult neurology services. The service specification outlines that specialised neurology centres must include services for neuromuscular disorders, including MND. Service specifications define the standards of care expected from organisations funded by NHS England to provide specialised care.
Asked by: Lee Anderson (Reform UK - Ashfield)
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 support research into motor neurone disease.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Government responsibility for delivering research into motor neurone disease (MND) is shared between the Department of Health and Social Care, with research delivered via 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) and the Medical Research Council for MND.
The Government is investing in MND research across a range of areas, including an £8 million investment via the NIHR into the EXPERTS-ALS. This is a pre-clinical study which is designed to accelerate the identification and testing of the most promising treatment candidates for treating amyotrophic lateral sclerosis (ALS): the most common form of MND.
The MND Translational Accelerator, supported by £6 million of Government funding, is connecting the UK Dementia Research Institute, the UK MND Research Institute and Dementias Platform UK. Twelve projects have been funded through the Accelerator; all aimed at speeding up the development of treatments for MND.
The NIHR and UKRI continue to welcome funding applications for research into MND.
Asked by: Lee Anderson (Reform UK - Ashfield)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he is taking to help improve access to affordable home adaptations for people with motor neurone disease.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
We recognise how important the right housing arrangements are in supporting people to live as independently and safely as possible. In England, we continue to fund the Disabled Facilities Grant (DFG), which is administered by local authorities. This grant helps eligible older and disabled people on low incomes, including people with motor neurone disease, to adapt their homes.
We have provided an additional £172 million over this and the last financial year to uplift the DFG. This uplift could provide approximately 15,600 extra home adaptations to give people more independence in their homes. This brings the total funding for the DFG to £711 million in each of 2024/25 and 2025/26.
Asked by: Lee Anderson (Reform UK - Ashfield)
Question to the Ministry of Housing, Communities and Local Government:
To ask the Secretary of State for Housing, Communities and Local Government, what steps his Department is taking to reduce waiting times for the processing of Disabled Facilities Grants applications for people with motor neurone disease.
Answered by Alison McGovern - Minister of State (Housing, Communities and Local Government)
The government recognises the importance of timely and efficient delivery of home adaptations including through the Disabled Facilities Grant (DFG) to help enable people with progressive conditions such as motor neurone disease (MND) to live independently in a safe and suitable environment.
Local authorities have a statutory duty to provide adaptations for people who satisfy a needs assessment, eligibility criteria and a means test, and have powers to agree a more generous local policy. To support this duty, government have boosted funding for the DFG to £711 million for both 2024-25 and 2025-26.
Local authorities have discretion in managing their DFG funding, and can publish a local housing assistance policy including detail on how they will respond to rapidly progressing conditions such as MND. For example, they can waive the means test or fast track the DFG process for people with MND.
This is clearly set out in government guidance (https://www.gov.uk/government/publications/disabled-facilities-grant-dfg-delivery-guidance-for-local-authorities-in-england) which encourages local authorities to streamline the application process to improve the delivery of adaptations, including for people living with MND. While it is for local authorities to determine the flexibilities that best meet the needs of their residents, the guidance also encourages them to prioritise urgent cases and work towards good practice timescales.