Asked by: Ian Sollom (Liberal Democrat - St Neots and Mid Cambridgeshire)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, pursuant to Written Parliamentary Question 85637, when his Department expects to publish the research funded by the National Institute of Health and Care Research that will look at how to cost-effectively improve care coordination to align to the needs of patients.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
Steps are being taken to improve the coordination of care for all rare diseases as a priority under the UK Rare Diseases Framework. Through the England Rare Diseases Action Plans, which set out actions to deliver against this priority, we commissioned research funded by NIHR to build on the CoOrdinated Care Of Rare Diseases (CONCORD) study with RAND Europe and University of Cambridge. The NIHR-funded CONCORD study sought to investigate how services for people with rare diseases are coordinated in the United Kingdom, and how people living with rare diseases, and healthcare professionals who treat rare diseases, would like them to be coordinated. The new study will help us understand how to best make improvements to care co-ordination in a way which aligns to the needs of patients with rare conditions and which is as cost-effective as possible for the NHS. The study is due to end in May 2026. Findings will be submitted to scientific journals after this date. Further information is avaiable on the CONCORD study at the following link:
Asked by: Jeremy Hunt (Conservative - Godalming and Ash)
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 access to clinical trials for patients with pancreatic cancer.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department is committed to ensuring that all patients, including those with pancreatic cancer, have access to cutting-edge clinical trials and innovative, lifesaving treatments.
The Department funds research and research infrastructure through the National Institute for Health and Care Research (NIHR), which supports National Health Service patients, the public, and NHS organisations across England to participate in high-quality research, including clinical trials into cancers.
NIHR provides an online service called 'Be Part of Research', which promotes participation in health and social care research by allowing users to search for relevant studies and register their interest.
The forthcoming National Cancer Plan will include further details on how we will improve outcomes for cancer patients across the country. It will ensure that more patients have access to the latest treatments and technology, and to clinical trials.
The Government also supports the Rare Cancers Private Members Bill. The bill will make it easier for clinical trials, on for example pancreatic cancer, to take place in England, by ensuring the patient population can be more easily contacted by researchers.
Asked by: Tom Tugendhat (Conservative - Tonbridge)
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 reasons people with brain cancer are seeking treatment outside the UK, particularly in Germany, including the trend in the level of such treatments.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Ensuring patients have access to the latest and most effective treatment options is a top priority for the Government.
That is why we are committed to supporting an innovative clinical research ecosystem in the United Kingdom so that patients in this country can be among the first to benefit as we make the National Health Service fit for the future.
The Government is supportive of Scott Arthur’s Private Members Bill on rare cancers, which will make it easier for clinical trials into rare cancers, such as brain cancers, to take place in England by ensuring the patient population can be easily contacted by researchers. This will ensure that the NHS will remain at the forefront of medical innovation and is able to provide patients with the newest, most effective treatment options, and ultimately boost survival rates.
Asked by: Cameron Thomas (Liberal Democrat - Tewkesbury)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he will take in the forthcoming National Cancer Plan to improve diagnosis and treatment for penile cancer.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Reducing the number of lives lost to cancer, including penile cancer, is a key aim of the National Cancer Plan. The plan will be published early this year. It will include further details on how we will improve outcomes for patients with cancer, as well as speeding up diagnosis and treatment, ensuring patients have access to the latest treatments and technology, and ultimately driving up this country’s cancer survival rates. This will benefit all cancer patients, including penile cancer patients.
The Government supports Scott Arthur’s Private Members Bill on rare cancers which will make it easier for clinical trials into rare cancers, including penile cancer patients, to take place in England by ensuring the patient population can be easily contacted by researchers. This will ensure that the National Health Service will remain at the forefront of medical innovation and is able to provide patients with the newest, most effective treatment options, and ultimately boost survival rates.
Asked by: James MacCleary (Liberal Democrat - Lewes)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps is his department taking to raise awareness of the warning signs of sudden arrhythmic death syndrome.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
Under the UK Rare Diseases Framework, the Government is working to improve awareness of rare diseases among healthcare professionals, including rare conditions that lead to sudden arrhythmic death syndrome (SADS).
NHS England has a published the national service specification Cardiology: Inherited Cardiac Conditions (All Ages), which is available at the following link:
https://www.england.nhs.uk/publication/cardiology-inherited-cardiac-conditions-all-ages/
This outlines the service model and mandatory guidelines for commissioned providers in England to support the diagnosis and treatment of patients or families affected by inherited cardiac conditions or sudden cardiac death. NHS England is currently reviewing this service specification and is working with stakeholders as part of this review including NHS clinical experts and the British Inherited Cardiovascular Conditions Society. The NHS England Genomics Education Programme has also developed a range of educational resources for healthcare professionals.
This includes a Knowledge Hub page on sudden arrhythmic death syndrome, including information on presentation, diagnosis, management, and links for clinicians to further resources. Further information is available at the following link:
https://www.genomicseducation.hee.nhs.uk/genotes/knowledge-hub/sudden-arrhythmic-death-syndrome/
Asked by: David Simmonds (Conservative - Ruislip, Northwood and Pinner)
Question to the Home Office:
To ask the Secretary of State for the Home Department, for what reason her Department has paused the sharing of regional asylum dispersal pack data with local government led strategic migration partnerships; and if she will change the policy of her Department in sharing this data.
Answered by Alex Norris - Minister of State (Home Office)
The Home Office regularly publishes official accredited statistics, setting out the numbers of asylum seekers in receipt of Home Office support, broken down by local authorities These statistics are published on Gov.uk and are freely available to local authority officials.
There are frameworks and processes in place, to facilitate the sharing of additional or sensitive information with local authority officials to facilitate their planning and delivery. The Home Office regularly reviews the sharing of such information to ensure it remains necessary, proportionate and complies with legislation. Although rare, we may have to temporarily pause the sharing of such information whilst we undertake a review.
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: Lord Kamall (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the impact of sickle cell emergency bypass units in England.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
Working under the UK Rare Diseases Framework, the Government is committed to improving the lives of those living with rare diseases, such as sickle cell disease. In 2024, NHS England commenced the roll out of seven Emergency Department Bypass Accelerator sites across England to provide services to persons requiring emergency care for uncomplicated vaso-occlusion crises. An evaluation of the effectiveness of the bypass units is currently being carried out by the National Institute for Health and Care Research (NIHR). The purpose of the evaluation is to provide an evidence-based report on the impact of the bypass units.
Preliminary findings from the NIHR evaluation were shared with NHS England in September 2025. The findings, which were based on qualitative feedback from patients and staff, highlighted that overall patient care and experience have improved since the launch of the bypass units compared to other hospital settings, with patients particularly benefiting from 24/7 access to dedicated triage lines and valuing the privacy and comfort of dedicated units. The next phase of the evaluation will review quantitative data and metrics, including patient time to receiving analgesia, length of hospital stays, and rates of readmissions. The final report is expected in 2026.
Asked by: Jess Brown-Fuller (Liberal Democrat - Chichester)
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 access to specialist care, treatment and medication for a) children and b) people with phenylketonuria.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to improving the lives of those living with rare diseases, such as phenylketonuria, through the UK Rare Diseases Framework. A priority of the framework is improved access to specialist care, treatment, and drugs. In February last year the England 2025 Rare Diseases Action Plan was published, including progress made under this priority, namely:
Information about symptoms, medicines, tests and treatments, is provided on the NHS England webpage on phenylketonuria, at the following link:
The treatment sapropterin is eligible for people with phenylketonuria. Clinical trials suggest that approximately four in 10 people may benefit from sapropterin, improving their quality of life significantly and reducing restrictions on the food they can eat.
Asked by: Freddie van Mierlo (Liberal Democrat - Henley and Thame)
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 support the development of gene therapy treatments for rare genetic diseases such as tyrosinemia and Gaucher disease.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to improving the lives of those living with rare diseases, such as tyrosinemia and Gaucher disease. Through the UK Rare Diseases Framework, the Government supports access to specialist care, treatment, and drugs as a priority. This has included NHS England developing a strategic approach to commissioning advanced therapy medicinal products (ATMPs) to facilitate rapid access to National Institute for Health and Care Excellence approved therapies.
We recognise the transformative potential of gene therapies and other advanced therapy medicinal products (ATMPs) for rare diseases and have stood up an advanced therapies co-ordination group spanning public sector partners. This group aims to create a joined-up ecosystem that will support the development, regulation, and delivery of ATMPs in the United Kingdom. We continue to invest in ATMPs through initiatives such as the Cell and Gene Therapy Catapult. With £17.9 million of new funding via the National Institute of Health and Care Research (NIHR), the Advanced Therapy Treatment Centres is driving forward work to enhance the UK’s environment for ATMP clinical trials and to progress research within the National Health Service to ensure patients can get safe access to these innovative therapies.
NIHR’s ‘Be Part of Research’ allows individuals to find and take part in current research. There are currently a number of studies on tyrosinemia and Gaucher disease where researchers are actively looking for participants. Further information on NIHR’s ‘Be Part of Research’ is avaiable at the following link:
https://bepartofresearch.nihr.ac.uk/
This includes a clinical trial assessing the safety of a gene therapy for those with peripheral manifestations of Gaucher disease, with further information avaiable at the following link:
https://bepartofresearch.nihr.ac.uk/trial-details/trial-detail?trialId=55560&location=&distance=