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, what steps he is taking to ensure that the (a) pricing and (b) reimbursement system for multi-indication medicines is adequate for patients with (i) rare and (ii) ultra-rare conditions.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Indication-specific pricing can support access to treatments, including for rare conditions, by enabling companies to propose a specific price for smaller indications that would otherwise be commercially unviable under a uniform price.
In January 2025, following public consultation, NHS England published an updated NHS Commercial Framework for New Medicines, setting out their approach for assessing the eligibility of medicines with multiple indications to qualify for indication-specific pricing.
The National Institute for Health and Care Excellence (NICE) has been able to recommend many medicines licensed for the treatment of rare and very rare diseases through its standard technology appraisal process which are now available to National Health Service patients in England. In addition, NICE operates a separate Highly Specialised Technologies evaluation programme for medicines that meet specific criteria for very rare conditions. This programme applies a higher cost-effectiveness threshold than standard appraisals to support access to treatments for very rare conditions.
As set out in the Life Sciences Sector plan, we will be introducing a new and proportionate approach to NICE appraisals and NHS indication-specific based pricing agreements for medicines with large numbers of indications, strong long-term outcome data, and low affordability risk.
The NHS Commercial Framework encourages early and open dialogue between companies and NHS England where indication-specific pricing or other commercial flexibilities may be needed to support access to treatments. NHS England is open to providing early guidance on such arrangements and to working with companies to explore suitable commercial options.
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, with reference to the NHS commercial framework for new medicines, updated on 29 January 2025, what assessment he has made of the potential impact of the requirement to provide value at or below the National Institute for Health and Care Excellence cost-effectiveness threshold on access to treatments for (a) rare and (b) ultra-rare diseases.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Indication-specific pricing can support access to treatments, including for rare conditions, by enabling companies to propose a specific price for smaller indications that would otherwise be commercially unviable under a uniform price.
In January 2025, following public consultation, NHS England published an updated NHS Commercial Framework for New Medicines, setting out their approach for assessing the eligibility of medicines with multiple indications to qualify for indication-specific pricing.
The National Institute for Health and Care Excellence (NICE) has been able to recommend many medicines licensed for the treatment of rare and very rare diseases through its standard technology appraisal process which are now available to National Health Service patients in England. In addition, NICE operates a separate Highly Specialised Technologies evaluation programme for medicines that meet specific criteria for very rare conditions. This programme applies a higher cost-effectiveness threshold than standard appraisals to support access to treatments for very rare conditions.
As set out in the Life Sciences Sector plan, we will be introducing a new and proportionate approach to NICE appraisals and NHS indication-specific based pricing agreements for medicines with large numbers of indications, strong long-term outcome data, and low affordability risk.
The NHS Commercial Framework encourages early and open dialogue between companies and NHS England where indication-specific pricing or other commercial flexibilities may be needed to support access to treatments. NHS England is open to providing early guidance on such arrangements and to working with companies to explore suitable commercial options.
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 make an assessment of the potential merits of requiring NHS England to establish an agreement in principle with pharmaceutical companies that commercial flexibility may be granted for a multi-indication medicine pending the outcome of the National Institute for Health and Care Excellence evaluation of such medicines.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Indication-specific pricing can support access to treatments, including for rare conditions, by enabling companies to propose a specific price for smaller indications that would otherwise be commercially unviable under a uniform price.
In January 2025, following public consultation, NHS England published an updated NHS Commercial Framework for New Medicines, setting out their approach for assessing the eligibility of medicines with multiple indications to qualify for indication-specific pricing.
The National Institute for Health and Care Excellence (NICE) has been able to recommend many medicines licensed for the treatment of rare and very rare diseases through its standard technology appraisal process which are now available to National Health Service patients in England. In addition, NICE operates a separate Highly Specialised Technologies evaluation programme for medicines that meet specific criteria for very rare conditions. This programme applies a higher cost-effectiveness threshold than standard appraisals to support access to treatments for very rare conditions.
As set out in the Life Sciences Sector plan, we will be introducing a new and proportionate approach to NICE appraisals and NHS indication-specific based pricing agreements for medicines with large numbers of indications, strong long-term outcome data, and low affordability risk.
The NHS Commercial Framework encourages early and open dialogue between companies and NHS England where indication-specific pricing or other commercial flexibilities may be needed to support access to treatments. NHS England is open to providing early guidance on such arrangements and to working with companies to explore suitable commercial options.
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 currently being treated in hospital for (a) anorexia and (b) other eating disorders.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
It is not possible to identify the number of people currently in receipt of hospital treatment for eating disorders such as anorexia, as hospital episode statistics data is collected several weeks in arrears.
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, what assessment he has made of the potential impact of cannabis use on risk of heart disease death.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department is committed to reducing the harm from all illicit drugs. Any illegal drug use, including cannabis, can be harmful, due to both the immediate side-effects and long-term physical and mental health problems. It can, for some, have a negative impact on their fertility. Cannabis use can also contribute to and exacerbate existing mental health problems or can accelerate their development in people predisposed to mental health problems.
There are various studies on the potential impact of cannabis use on the risk of heart disease death. The study, Cardiovascular risk associated with the use of cannabis and cannabinoids: a systematic review and meta-analysis, was recently carried out and published in the British Medical Journal’s Heart journal where findings revealed positive associations between cannabis use and major adverse cardiovascular events.
More information on the impact cannabis has on health can be found on the National Health Service website and Talk to FRANK, the Government’s drugs information and advice service. The Talk to FRANK website also has basic harm reduction advice and details of drug treatment services and support organisations.
We know that drug treatment is protective, and the number of places in treatment for people who use non-opiate drugs, including cannabis, is being increased by 30,000 compared to 2021/22, including 5,000 more places for young people in treatment. The number of people in England receiving treatment for problems with cannabis use increased from 63,854 in 2021/22 to 74,931 in 2023/24.
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, what steps her Department is taking to help encourage participation in clinical trials.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department is committed to ensuring that all patients have access to cutting-edge clinical trials and innovative, lifesaving treatments.
The Department is working to fast-track clinical trials to drive global investment into life sciences, improve health outcomes, and accelerate the development of the medicines and therapies of the future.
The Department funded National Institute for Health and Care Research (NIHR) funds research and research infrastructure, which supports patients and the public to participate in high-quality research.
The 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. This makes it easier for people to find and take part in health and care research that is relevant to them, including clinical trials.
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 under 50 years old have been diagnosed with pancreatic cancer in the last three years.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The latest data available, from March 2025, shows that the number of people under 50 years old diagnosed with pancreatic cancer in the last three years were as follows:
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, what estimate he has made of the number of babies born with rare diseases in the first half of (a) 2025 and (b) 2024.
Answered by Ashley Dalton - 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. Digital data and technology are an underpinning theme of the UK Rare Diseases Framework. The National Disease Registration Service (NDRS) is part of NHS England and manages two disease registration services, including the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS). The NCARDRS records those people with congenital abnormalities and rare diseases across the whole of England. Further information on the NDRS and the NCARDRS is available, respectively, at the following two links:
https://digital.nhs.uk/ndrs/about/ncardrs
Currently, there is no single rare disease registry. The NDRS can access information from the Newborn screening programme, which enables early identification, referral, and treatment of babies with nine rare but serious conditions. The NDRS also approaches services for access to patient data for other rare conditions, but this is not blanket coverage at this stage. There are a number of rare diseases registries, some funded via NHS England, and some via industry or charities. Due to this, NDRS records would not be a full picture of everyone born with a rare disease.
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, what assessment he has made of the potential merits of using nano needles to detect cancers.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department looks at opportunities to utilise technology to improve diagnostic performance and bring down cancer waiting times. We are committed to backing an innovative clinical research ecosystem in the United Kingdom so that patients can be among the first to benefit as we make the National Health Service fit for the future.
The Medicines and Healthcare Products Regulatory Agency (MHRA) has not currently made a specific assessment of the potential merits of using nanoneedles to detect cancers.
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, what assessment his Department has made of the potential impact of short-term funding grants on the ability of drug treatment services to (a) provide long term care and (b) retain staff.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Government is committed to ensuring that anyone with a drug or alcohol problem can access the help and support they need, and we recognise the need for greater certainty regarding funding and the ability to set clear budgets.
Local authorities are responsible for assessing local need for alcohol and drug prevention and treatment in their area, and for commissioning services to meet these needs. It is also the responsibility of local authorities to set the length of the contracts with services.
To better support upper tier and unitary local authorities’ vital public health work, from 2026/27 we will bring together over £4 billion of public health funding for local government, by consolidating service specific grants into the Public Health Grant. It is our intention to publish indicative Public Health Grant funding alongside the provisional Local Government Finance Settlement later this year, with final multi-year local authority Public Health Grant allocations published early in the new year. This will give local authorities more advanced notice of their total funding allocations, further empowering them to plan more effectively and better manage their services.
Alongside the funding allocations, the Department and NHS England have also published a 10-year strategic plan for the drug and alcohol treatment and recovery workforce, from 2024 to 2034, which is the first national workforce plan for this specialist part of the health workforce in England and outlines key milestones to grow, train, and develop staff.