Asked by: Ruth Jones (Labour - Newport West and Islwyn)
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 potential merits of establishing a national register to capture and integrate the data of all women at increased risk of breast cancer.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Disease Registration Service (NDRS) in NHS England provides England’s national resource for data and analytics on cancer, rare diseases, and congenital conditions.
The NDRS already serves as a national register for women at very high risk of breast cancer. NDRS curates and quality assures the collected data to ensure sufficient accuracy and completeness. The NDRS works closely with the very high risk National Breast Screening Programme to ensure safe and robust identification of women at very high risk of cancer. The integration of this data within the wider NDRS cancer data infrastructure maximises the use of this data which helps with service planning, evaluation, and improvement, and reduces the fragmentation and siloing that would occur with standalone registers.
Asked by: Ruth Jones (Labour - Newport West and Islwyn)
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 the accuracy of data collected on all women at increased risk of breast cancer.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Disease Registration Service (NDRS) in NHS England provides England’s national resource for data and analytics on cancer, rare diseases, and congenital conditions.
The NDRS already serves as a national register for women at very high risk of breast cancer. NDRS curates and quality assures the collected data to ensure sufficient accuracy and completeness. The NDRS works closely with the very high risk National Breast Screening Programme to ensure safe and robust identification of women at very high risk of cancer. The integration of this data within the wider NDRS cancer data infrastructure maximises the use of this data which helps with service planning, evaluation, and improvement, and reduces the fragmentation and siloing that would occur with standalone registers.
Asked by: Kevin Hollinrake (Conservative - Thirsk and Malton)
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 potential impact of NICE's draft guidance on brexucabtagene autoleucel on (a) the Life Sciences Strategy and (b) outcomes for patients with rare cancers.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government remains committed to the ambitions set out in the Life Sciences Sector Plan, which set out an ambition that by 2030, we will be one of the top three fastest places in Europe for patient access to medicines. We will achieve this by reducing friction in the system to optimise access and uptake of new medicines so the most clinically and cost-effective can reach patients faster.
The National Institute for Health and Care Excellence (NICE) is currently re-evaluating brexucabtagene autoleucel to determine whether it should be recommended for routine National Health Service use following a period of managed access through the Cancer Drugs Fund. NICE’s draft guidance, published in December 2025, does not recommend it as a clinically and cost-effective use of NHS resource, although NICE has not yet published final guidance. The Government recognises that the potential withdrawal of brexucabtagene autoleucel as a treatment for future patients will be concerning for patients and their families, but it is right that these decisions are taken independently and on the basis of the available evidence. In line with an arrangement between NHS England and the company, if NICE’s final guidance does not recommend use, patients who started treatment during the managed access period can continue their treatment.
Asked by: Liz Jarvis (Liberal Democrat - Eastleigh)
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 impact of the UK-US Pharmaceutical deal on patient access to medicines.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The United Kingdom has secured mitigations under the United States’ ‘Most Favoured Nation’ drug pricing initiative so that we will continue to ensure access to the latest treatments. This will encourage pharmaceutical companies from around the world to prioritise the UK for early launches of their new medicines, getting new treatments to the National Health Service frontline faster and securing our access to and supply of medicines for patients all across the NHS.
The agreement will see the NHS invest approximately 25% more in innovative treatments, the first major increase in over two decades, meaning patients will now be able to access cutting-edge therapies that may have otherwise been deemed not cost-effective. This could include breakthrough cancer treatments, therapies for rare diseases, and innovative approaches to conditions that have long been difficult to treat.
Asked by: Anneliese Dodds (Labour (Co-op) - Oxford East)
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 National Institute for Health and Care Excellence (NICE)'s current Highly Specialised Technologies Guidance, specifically where it does not recommend a treatment for a rare disease where treatment would have a substantial effect of a medicine on quality and length of life, but is not recommended due to cost-effectiveness estimates being higher than what NICE usually considers an acceptable use of NHS resources for Highly Specialised Technologies.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) operates a separate Highly Specialised Technologies (HST) programme to evaluate a very small number of medicines and treatments developed for ultra‑rare, severe and life‑limiting conditions. It uses specific methods and a much higher cost‑effectiveness threshold than standard technology appraisals, enabling NICE to recommend treatments at prices that reflect the complexities of ultra‑rare diseases. The HST programme has secured access for National Health Service patients with very rare diseases to effective treatments that NICE would not have been able to recommend through its standard technology appraisal process, with 33 out of the 35 medicines that it has evaluated through the HST programme recommended for NHS use.
There will unfortunately always be occasions when NICE is unable to recommend a treatment through the HST programme despite the use of a much higher cost-effectiveness threshold. These are very difficult decisions to make, and it is right that they are taken independently and on the basis of a thorough assessment of the available evidence.
Asked by: Anneliese Dodds (Labour (Co-op) - Oxford East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what discussions he has had with NHS England, the National Institute for Health and Care Excellence and the Medicines and Healthcare products Regulatory Agency on the annual meeting held to discuss progress and the role of the Early Access to Medicines Scheme, the Innovative Licensing and Access Pathway and the Innovative Medicines Fund in supporting access to treatments for people living with rare diseases.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to improving the lives of people living with rare diseases through the UK Rare Diseases Framework. One of the priorities of the framework is improving access to specialist care, treatment, and drugs.
We have continued to review the effectiveness of the Early Access to Medicines Scheme, the Innovative Licensing and Access Pathway, and the Innovative Medicines Fund. These access pathways across the regulatory and access system are designed to support innovative treatments being made available earlier to patients who need them, including people living with rare diseases. The last meeting was held in July 2025, and included representatives from the Department, NHS England, the National Institute for Health and Care Excellence, and the Medicines and Healthcare products Regulatory Agency, as well as patient advocacy groups, industry, and clinical researchers. Further detail will be reported in the England 2026 Rare Diseases Action Plan, to be published in spring 2026.
Asked by: Anneliese Dodds (Labour (Co-op) - Oxford East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment has he made of the potential merits of increasing NICE's cost-effectiveness thresholds used to evaluate Highly Specialised Technologies for rare diseases.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
There are currently no plans to increase the cost‑effectiveness threshold for the highly specialised technologies (HST) programme. The HST programme already operates at a much higher threshold than standard National Institute for Health and Care Excellence (NICE) technology appraisals, reflecting the challenges of bringing treatments for very rare conditions to market, and NICE has been able to recommend nearly all the treatments that have been evaluated through the HST programme for National Health Service use.
Asked by: Tanmanjeet Singh Dhesi (Labour - Slough)
Question to the Department for Business and Trade:
To ask the Secretary of State for Business and Trade, what recent steps his Department have taken to ensure businesses adhere to creditors' responsibilities when debtors are under a Debt respite breathing space period.
Answered by Blair McDougall - Parliamentary Under Secretary of State (Department for Business and Trade)
A breathing space gives individuals the right to legal protections from creditor action to recover debts included in the agreement. If a creditor does not comply, the regulations set out that the debt adviser responsible for the application can contact the creditor to remind them of their obligations or ultimately notify the Insolvency Service, as the scheme’s administrator, to require their compliance. Notifications to the Insolvency Service are very rare. If non-compliance persists, action taken by a creditor is invalid and they may be liable for the debtor’s costs. Repeated breaches can be considered by the creditor’s regulator, where appropriate.
Asked by: Lord Freyberg (Crossbench - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the importance of prompt, large-scale molecular testing to the efficiency of commercial clinical trial recruitment, particularly in cancer; and of how prompt, large-scale molecular testing influences industry decisions on country prioritisation and site selection, in particular for late-phase trials conducted in England.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
As set out in the Life Sciences Sector Plan, the Government aims to double commercial interventional trial participants by 2026, and again by 2029.
Access to large-scale molecular testing will play a role in delivering against this aim, since molecular testing can identify patients with specific biomarkers and target them into clinical trials. More consistent and equitable genomic testing across England will encourage commercial sponsors to place their clinical trials at research sites in the United Kingdom.
To deliver this, we are embedding genomic testing as routine practice within the NHS Genomic Medicine Service and its workforce. This includes seven NHS Genomic Laboratory Hubs delivering comprehensive genomic testing and analysis, such as whole genome sequencing, as part of routine care. The Genomics Education Programme is responsible for upskilling the entire multi-professional, multi-specialty National Health Service workforce in genomics.
The Government also supports the Rare Cancers Private Members Bill. The bill will make it easier for clinical trials on brain cancer to take place in England, by ensuring that the patient population can be more easily contacted by researchers.
Asked by: Anneliese Dodds (Labour (Co-op) - Oxford East)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, in regard to the upcoming closure of the the UK Rare Diseases Framework, what alternative evaluation methods will be used to assess and ensure the continued improvement of access to specialist care, treatment and drugs for patients with rare diseases.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The UK Rare Diseases Framework was published following the National Conversation on Rare Diseases, which received nearly 6,300 responses. This helped identify the four priorities of the framework in tackling rare diseases: helping patients get a final diagnosis faster; increasing awareness of rare diseases among healthcare professionals; better coordination of care; and improving access to specialist care, treatment, and drugs.
The Government remains committed to improving the lives of those living with rare conditions, and will be publishing the next England Rare Diseases Action Plan to update on these priorities as in previous years. The evaluation of England’s action plans is expected to complete in May 2026. We recognise that despite the progress that has been made there remains considerable unmet need for people living with rare conditions. Ministers from all four nations have agreed to extend the UK Rare Diseases Framework by one year to January 2027, recognising the continued relevance of its four priorities, including improving access to specialist care, treatment, and drugs. We will engage with the rare diseases community to help shape the next steps.