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 recommendation in the report by the UK BioIndustry Association From innovation to impact: unlocking patient access to innovative rare disease medicines, published on 4 December 2025, to develop a separate evaluation pathway for innovative orphan medicines where a cost-effectiveness based evaluation is not appropriate, and of its implementation.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
There are no plans to introduce a separate evaluation process for orphan medicines. Most medicines, including orphan medicines, are assessed through the National Institute for Health and Care Excellence’s (NICE) standard technology appraisal programme, with a small number of treatments for very rare and severe conditions considered through the highly specialised technologies programme, which applies a higher cost-effectiveness threshold.
NICE’s methods are suitable for evaluating rare disease medicines where prices are set fairly. Approval rates for rare disease medicines are in line with overall NICE recommendations, and between April 2024 and April 2025 NICE recommended all 15 rare disease medicines assessed through the standard programme.
We are also investing approximately 25% more in innovative treatments through an increase to NICE’s cost-effectiveness threshold and changes to how health benefits are valued. This will support access to medicines delivering significant health benefits, including for rare diseases, that may previously have been declined on cost-effectiveness grounds.
Asked by: Baroness Shawcross-Wolfson (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government whether they still plan to increase the National Institute for Health and Care Excellence cost per quality-adjusted life years thresholds in April; and what steps they will take to implement that increase.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The National Institute for Health and Care Excellence (NICE) currently assesses value for money for the National Health Service by applying a standard cost-effectiveness range of £20,000 to £30,000 per quality adjusted life year (QALY) gained over and above current treatments. As part of the landmark pharmaceuticals trade deal with the United States of America, it has been agreed that the cost-effectiveness threshold will be increased to £25,000 to £35,000 per QALY.
My Rt Hon. Friend, the Secretary of State for Health and Social Care, does not currently have the legal power to direct NICE to amend the cost-effectiveness threshold used in its technology appraisal or highly specialised technology programmes. The Government has therefore proceeded to amend the NICE regulations, to give ministers a limited power of direction to set the core cost-effectiveness threshold that NICE uses in the development of guidance, and remove the requirement for NICE to consult on methods changes where these result from a ministerial direction. The regulation change has been made by a statutory instrument which was laid before Parliament on 3 March 2026 and, subject to the will of Parliament, will come into force on 24 March 2026. In line with the United Kingdom-United States’ deal, NICE will implement the cost-effectiveness threshold increase in April 2026, following a direction from my Rt Hon. Friend, the Secretary of State for Health and Social Care.
Asked by: Lord Kamall (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what steps they are taking to expand new-born screening in line with its ambition in the 10 Year Health Plan to roll out whole genome sequencing by 2030; and what interim targets they have established to measure progress towards this ambition.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The 10-Year Health Plan set out an ambition to “implement universal genomic testing” within the next decade. Delivering against this ambition will be subject to evidence gathered through the Generation Study. This research programme is evaluating the effectiveness of using whole genome sequencing to test 100,000 newborns for genetic mutations associated with more than 200 rare genetic conditions. The sequencing of 100,000 newborns through the Generation Study will be completed by summer 2027. The evaluation part of the study will then be completed and presented to the UK National Screening Committee who will make a recommendation to Government ministers on whether newborn genomic screening should be offered in the National Health Service or whether more research is required. Subject to this, and appropriate funding being available, genomic testing could be available for all newborns by 2035.
Asked by: Lord Kamall (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what interim targets they have set to meet the commitment in the Life Sciences Sector Plan for the UK to become one of the three fastest countries in Europe for patient access to medicines by 2030.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The Life Sciences Sector Plan includes a broad range of commitments to support our ambitions to be one of the top three fastest places in Europe for patient access to medicines by 2030. This includes improving capacity and efficiency in delivering commercial clinical trials, investing in innovation, and supporting access and uptake across the system.
The target itself will be measured by the European Federation of Pharmaceutical Industries and Associations Waiting to Access Innovative Therapies indicator. The latest data shows that the median time between regulatory approval and patient availability for medicines launched between 2020 and 2023 was 310 days for England and 303 days for Scotland, compared to a European Union median of 518 days.
Asked by: Earl Howe (Conservative - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of the recent increase in the number of resident doctors who say they are neurodivergent or have learning disabilities.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
There has been no assessment made of the increase in the number of resident doctors who are neurodivergent or have learning disabilities.
The General Medical Council has published the number of doctors who have declared learning disabilities in their GMC Workforce Report. However, the data is not broken down to specifically show resident doctors. In 2024, just over 6,000 licensed doctors recorded their disability as a ‘learning disability’.
Asked by: Lord Booth (Conservative - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government how many patients per annum are expected to be treated by the NHS with Car-T cell therapy for Non-Hodgkin Lymphoma.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
The following table shows the number of patients treated per annum with CAR-T cell therapy for non-Hodgkin lymphoma, from 2023 to 2025, and in total:
Year | 2023 | 2024 | 2025 | Total |
Number of patients | 390 | 362 | 357 | 1109 |
Asked by: Lord Hunt of Kings Heath (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what assessment they have made of whether the Care Quality Commission's 8 January assessment of Orchard Nursing Home, Huyton (1) took into full account of concerns that had been expressed to the Care Quality Commission about the care people received in the home, (2) measured the degree to which care plans were being followed, and (3) sufficiently evaluated the extent to which complaints were properly investigated.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
As the Care Quality Commission (CQC) is operationally independent, the Government has not made its own assessment of individual CQC assessments.
The CQC has advised that its 8 January 2026 assessment of Orchard Nursing Home, Huyton included consideration of how residents and family members were supported to raise concerns and share their experiences, with inspectors finding a positive culture in which people felt able to speak up and confident that issues would be listened to and addressed. The CQC took into full account concerns raised about the care people received and noted improvements the service had made under new management.
The assessment also found evidence that care plans had improved, with personalised care plans developed before admission, routinely monitored, and reviewed regularly to reflect people’s needs and preferences.
In addition, inspectors considered how complaints were identified, investigated and responded to. A complaints policy was in place, information on how to raise concerns was accessible, and complaints were taken seriously, investigated appropriately, and used to support learning and ongoing improvement.
Asked by: Earl Howe (Conservative - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what measures are in place to ensure the process by which doctors declare neurodivergence or learning disabilities is robust and cannot be subject to abuse.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
National Health Service trusts hold information on the Electronic Staff Record system, the human resource system for the NHS, on an employee’s protected characteristics, including disabilities. Individuals and organisations have a responsibility to ensure entries are accurate and organisations are encouraged to monitor trends in their data to better ensure the health and well-being of their employees.
Any allegations of dishonesty would be considered to be a conduct issue and investigated in accordance with the employer's disciplinary policy and procedures.
Local employers across the NHS have arrangements in place to support staff with disabilities, including occupational health provision, employee support programmes, and a focus on healthy working environments.
Employers have a legal duty under the Equality Act 2010 to consider and make reasonable adjustments for employees who have a disability, taking advice from their local occupational health and human resources department. This includes removing or reducing any substantial disadvantages that employees with a disability may face compared to someone who does not have a disability.
Asked by: Earl Howe (Conservative - Excepted Hereditary)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what internal or professional disciplinary procedures may be invoked by an NHS Trust in the case of a resident doctor who has been found to have dishonestly claimed to be neurodivergent or have learning disabilities.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
National Health Service organisations, as independent employers, have their own internal grievance and disciplinary procedures which should comply with employment law and relevant Advisory, Conciliation and Arbitration Service codes and guidance. Any allegations of dishonesty would be considered to be a conduct issue and investigated in accordance with the employer’s disciplinary policy and procedures.
Maintaining High Professional Standards provides a national framework for the handling of concerns about doctors and dentists in the NHS. NHS trusts may also report any concerns about doctors to the General Medical Council.
Asked by: Baroness Shawcross-Wolfson (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 number of National Institute for Health and Care Excellence appraisals which are paused pending increases in the cost per quality-adjusted life year threshold in April.
Answered by Baroness Merron - Parliamentary Under-Secretary (Department of Health and Social Care)
There are currently two appraisals paused, at the request of the company, until the National Institute for Health and Care Excellence (NICE) has the power to apply the new cost-effectiveness threshold:
NICE anticipates that its cost-effectiveness threshold will increase in April 2026 and will provide a further update to stakeholders at that time.