Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what data his department collects to monitor potential inequalities in multiple sclerosis care access; and how those findings are used to inform policy and service delivery improvements.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department does not collect patient-level clinical data directly but works with NHS England and other bodies to monitor inequalities in access to multiple sclerosis (MS) services through a range of national programmes and datasets.
The UK Multiple Sclerosis Register, which is managed by Swansea University and supported by the MS Society, provides a comprehensive evidence base on the experiences and outcomes of people living with MS across the United Kingdom. It combines patient-reported data with clinical information from National Health Services, enabling analysis of variations in access to treatments, specialist care, and support by geography, deprivation, ethnicity and other demographic factors.
Findings from the register are used to inform research policy development and service improvement initiatives. This evidence supports NHS England and integrated care boards in identifying variations in access to treatment and care, guiding commissioning decisions, and helping to reduce health inequalities for people living with MS.
Additionally, initiatives such as NHS England’s Getting It Right First Time (GIRFT) programme and its RightCare programme both aim to reduce unwarranted variation in services and improve equity of care for people with MS.
GIRFT undertakes clinically-led, data-driven reviews of neurology services across all neuroscience centres and trusts. Its national neurology report sets out recommendations to standardise care, improve access to specialist services closer to home, and share best practice between providers. By addressing these variations, GIRFT helps to ensure that people with MS receive more consistent, high-quality care regardless of where they live.
RightCare focuses on population health and on reducing inequalities by providing commissioners with toolkits and benchmarking resources. Its Progressive Neurological Conditions Toolkit supports systems to assess current provision for conditions such as MS, identify gaps, and prioritise improvements. It promotes integrated, person-centred care and encourages commissioners to benchmark services against national standards, helping to reduce disparities in access and outcomes.
Asked by: Peter Dowd (Labour - Bootle)
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 and fund clinical trials aimed at achieving licensing and NHS access for complex, cannabis-based medicines used in the treatment of severe, drug-resistant epilepsy in children.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The Department commissions research through the National Institute for Health and Care Research (NIHR). The NIHR is funding two trials to investigate the safety and efficacy of cannabinoid treatments for drug-resistant epilepsy in both adults and children. Further detail on the trials can be found on the NIHR’s website, at the following link:
https://fundingawards.nihr.ac.uk/award/NIHR131309
The Department is committed to ensuring that all patients, including those with epilepsy, have access to cutting-edge clinical trials and innovative, lifesaving treatments. We are 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, including treatments for epilepsy.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he plans to bring responsibility for medical cannabis policy and governance to his Department in line with Schedule 2 medicines.
Answered by Zubir Ahmed - Parliamentary Under-Secretary (Department of Health and Social Care)
The Home Office is the lead department for controlled drug legislation, whilst the Department of Health and Social Care and its Arm's Length Bodies lead on healthcare and the regulation of medicines. This framework applies to all drugs under Schedules 1 to 5 of the Misuse of Drugs Regulations 2001, including cannabis-based products for medicinal use. The Government has no plans to change this.
The Department of Health and Social Care and the Home Office work closely with other system partners in developing and reviewing the policy on controlled drugs in healthcare, including cannabis-based products for medicinal use.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether he has made an assessment of the potential impact of the abolition of NHS England on people with rare conditions.
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.
We are currently in the initial phases of scoping and designing a new integrated Department that aims to enhance the efficiency and effectiveness of our healthcare system. Ministers and senior Department officials will work with the new executive team at the top of NHS England, led by Sir Jim Mackey, to lead the formation of a new joint centre. As we work to bring the two organisations together, we will ensure that we continue to evaluate impacts of all kinds.
Asked by: Peter Dowd (Labour - Bootle)
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 potential impact of suspending the medicines repurposing programme on people affected by rare conditions.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
In April 2025, a decision was made to suspend the national Medicines Repurposing Programme. The decision was made with consideration to the following factors:
There are alternative sources of advice and support for clinicians or charities wanting to repurpose a medicine, including for a rare condition, such as the Medical Research Council, National Institute for Health and Care Research, and scientific advice from the Medicines and Healthcare products Regulatory Agency (MHRA).
Medicines repurposing means using an existing medicine in a new way, outside of its current marketing authorisation. Clinicians are very familiar with the option of prescribing medicines outside their licence, known as off-label use, particularly within specialised care. Off-label access is often agreed at a local level, informed by the available evidence and clinical guidelines, and where the clinician feels this best meets the needs of the patient. When appropriate and supported by the available evidence, national guidance from organisations including the National Institute for Health and Care Excellence or the British National Formulary could potentially support equitable patient access to repurposed medicines.
A further potential route to support patient access to a repurposed medicine used in specialised care in England is to develop a national clinical commissioning policy. A policy will confirm whether a specific treatment should be routinely available to eligible patients in the National Health Service. A policy can only be developed if the medicine is used within prescribed specialised services, namely services for which NHS England is the accountable commissioner, and not services where the accountable commissioners are integrated care boards. National clinical policies are based on the available research evidence and may be subject to a process of funding prioritisation, depending on the cost of the treatment concerned. A NHS clinician can propose a new or revised national clinical commissioning policy where there is sufficient supporting evidence. More information on the process is available at the following link:
https://www.youtube.com/watch?v=Ya1A9WTzQXQ
NHS England develops clinical commissioning policies in line with published methods and eligibility criteria, which have been subject to consultation. A clinical commissioning policy can recommend medicines that are used on-label or off-label. More information on the policies is available at the following link:
https://www.england.nhs.uk/publication/methods-national-clinical-policies/
The national medicines repurposing programme included a small number of medicines to treat rare diseases. In some cases, the programme supported academics to obtain MHRA scientific advice and gather evidence to support a licensing application. To date, no licensing applications have been received via the programme for medicines to treat rare disease.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether the specific challenges of providing specialised care for rare conditions will be included in the NHS 10 year plan.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The 10-Year Plan will reshape the National Health Service, and in many cases, will provide opportunities to address the challenges that are faced by patients, including those with rare conditions and the people who treat or support them.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how the NHS 10 year plan will improve the delivery of healthcare for people with rare conditions.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
The 10-Year Plan will reshape the National Health Service, and in many cases, will provide opportunities to address the challenges that are faced by patients, including those with rare conditions and the people who treat or support them.
Asked by: Peter Dowd (Labour - Bootle)
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 ensure that the (a) National Disease Registration Service and (b) National Congenital Anomaly and Rare Diseases Registration Service continue after the planned abolition of NHS England.
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 underpinning themes of the UK Rare Diseases Framework. We acknowledge the important role of the National Congenital Anomaly and Rare Disease Registration Service, part of the National Disease Registration Service, in underpinning the delivery of England’s Rare Diseases Action Plans. Further information about the National Congenital Anomaly and Rare Disease Registration Service is available at the following link:
https://digital.nhs.uk/ndrs/about/ncardrs
We are currently in the initial phases of scoping and designing a new integrated department that aims to enhance the efficiency and effectiveness of our healthcare system. The important role of the National Disease Registration Service will be taken into account as part of future plans.
Asked by: Peter Dowd (Labour - Bootle)
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 concerns raised by the Spinal Muscular Atrophy (SMA) stakeholder community on the speed of progress being made by the UK National Screening Committee in its work to start an in-service evaluation of screening for SMA in NHS services.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
My Rt Hon. Friend, the Secretary of State for Health and Social Care, is aware of the concerns raised by stakeholders. Plans for the in-service evaluation are being developed; however, its roll out and timeline will not be confirmed until after the 2025 Spending Review.
Asked by: Peter Dowd (Labour - Bootle)
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 the National Institute for Health and Care Research on expediting the publication of its research brief to inform the UK National Screening Committee’s in-service evaluation of newborn screening for spinal muscular atrophy.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
My Rt Hon. Friend, the Secretary of State for Health and Social Care is aware of the plans being developed for the National Institute for Health and Care Research’s research call and the in-service evaluation. However, its roll out and timeline will not be confirmed until after the conclusion of the 2025 Spending Review.