Asked by: Sadik Al-Hassan (Labour - North Somerset)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether the NHS 10 Year Plan will include steps to ensure healthcare professionals are adequately trained and supported in diagnosing and treating rare diseases like Myasthenia Gravis.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
We have committed to develop a 10-Year Health Plan to deliver a National Health Service fit for the future. The plan, and the refreshed Long Term Workforce Plan that follows it, will ensure that we have the right number of staff, with the right skill mix so that patients, including those with rare diseases like myasthenia gravis, can be promptly diagnosed and treated.
Asked by: Sadik Al-Hassan (Labour - North Somerset)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what his planned timetable is for when patients with Myasthenia Gravis will have access to recently licenced products.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
On 7 March 2024, the Medicines and Healthcare products Regulatory Agency (MHRA) approved the medicine rozanolixizumab, marketed as Rystiggo, to treat adults with generalised myasthenia gravis.
The National Institute for Health and Care Excellence (NICE) evaluates all new licensed medicines and makes recommendations for the National Health Service on whether they should be routinely funded by the NHS based on their clinical and cost effectiveness. NICE aims to publish guidance as close as possible to the time of licensing.
NICE published draft guidance on the use of rozanolixizumab for consultation in September 2024 and was unable to recommend it as a clinically and cost-effective use of NHS resources due to uncertainties in the long-term effectiveness of the treatment, as well as uncertainties in the economic model and the cost-effectiveness at the price proposed by the company. NICE has not yet published final guidance, and it will keep stakeholders informed about next steps as soon as possible.
Asked by: Sadik Al-Hassan (Labour - North Somerset)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps he has taken to increase patient access to new and innovative treatments for Myasthenia Gravis.
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 myasthenia gravis. The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community: these include improving access to specialist care, treatments, and drugs. We remain committed to delivering under the Framework and published the annual England action plan in February 2025.
In the 2023 England Rare Disease Action Plan, action 25 was introduced to review the effectiveness of Innovative Medicines Fund (IMF), Early Access to Medicines Scheme (EAMS) and Innovative Licensing and Access Pathway (ILAP) in improving access to treatments for people living with rare diseases.
NHS England, the National Institute for Health and Care Excellence and the Medicines and Healthcare products Regulatory Agency will meet annually to continue to discuss progress and the role of EAMS, ILAP and IMF in supporting access to treatments for people living with rare diseases. These meetings will include representatives from patient advocacy groups, industry and clinical researchers. Further progress on action 25 has been reported in the 2025 action plan, which is available at the following link:
https://www.gov.uk/government/publications/england-rare-diseases-action-plan-2025
Asked by: Sadik Al-Hassan (Labour - North Somerset)
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 proposed changes to National Institute for Health and Care Excellence Highly Specialised Technology (HST) routing criteria aligns with the stated aim of HST to encourage (a) research on and (b) innovation for ultra-rare diseases when there are challenges in generating an evidence base that is robust enough to bring the product to market.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Decisions on whether medicines should be evaluated by the National Institute for Health and Care Excellence (NICE) through its highly specialised technologies (HST) programme are taken by NICE itself against a set of published criteria that have been developed through public and stakeholder engagement.
NICE is currently reviewing its HST criteria and has recently closed its public consultation on proposed changes. NICE will discuss the updated criteria at its Public Board Meeting on 19 March 2025.
The purpose of the review is not to change the number or nature of the topics that are evaluated through the HST programme, but to ensure that the criteria are sufficiently clear and predictable for companies and patient groups and are aligned to the HST vision. The aims of the HST programme will remain unchanged. It is intended to: encourage research on, and innovation for, very rare conditions when there are challenges in generating an evidence base that is robust enough to bring the product to market; secure fairer and more equitable treatment access for very small populations with very rare diseases; and recognise that an approach that maximises health gain for the NHS may not always be acceptable; it could deliver results that are not equitable.
Since 2022/23, NICE has been able to recommend 13 out of 14 medicines that it has appraised through its HST programme.
Asked by: Sadik Al-Hassan (Labour - North Somerset)
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 proposed changes to National Institute for Health and Care Excellence Highly Specialised Technology (HST) routing criteria aligns with the stated aim of HST to secure more equitable treatment access for very small populations with ultra-rare diseases.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Decisions on whether medicines should be evaluated by the National Institute for Health and Care Excellence (NICE) through its highly specialised technologies (HST) programme are taken by NICE itself against a set of published criteria that have been developed through public and stakeholder engagement.
NICE is currently reviewing its HST criteria and has recently closed its public consultation on proposed changes. NICE will discuss the updated criteria at its Public Board Meeting on 19 March 2025.
The purpose of the review is not to change the number or nature of the topics that are evaluated through the HST programme, but to ensure that the criteria are sufficiently clear and predictable for companies and patient groups and are aligned to the HST vision. The aims of the HST programme will remain unchanged. It is intended to: encourage research on, and innovation for, very rare conditions when there are challenges in generating an evidence base that is robust enough to bring the product to market; secure fairer and more equitable treatment access for very small populations with very rare diseases; and recognise that an approach that maximises health gain for the NHS may not always be acceptable; it could deliver results that are not equitable.
Since 2022/23, NICE has been able to recommend 13 out of 14 medicines that it has appraised through its HST programme.
Asked by: Sadik Al-Hassan (Labour - North Somerset)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if his Department will make an assessment of the potential impact of National Institute for Health and Care Excellence proposed changes to its Highly Specialised Technology routing criteria on access to medicines for people living with rare diseases.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Decisions on whether medicines should be evaluated by the National Institute for Health and Care Excellence (NICE) through its highly specialised technologies (HST) programme are taken by NICE itself against a set of published criteria that have been developed through public and stakeholder engagement.
NICE is currently reviewing its HST criteria and has recently closed its public consultation on proposed changes. NICE will discuss the updated criteria at its Public Board Meeting on 19 March 2025.
The purpose of the review is not to change the number or nature of the topics that are evaluated through the HST programme, but to ensure that the criteria are sufficiently clear and predictable for companies and patient groups and are aligned to the HST vision. The aims of the HST programme will remain unchanged. It is intended to: encourage research on, and innovation for, very rare conditions when there are challenges in generating an evidence base that is robust enough to bring the product to market; secure fairer and more equitable treatment access for very small populations with very rare diseases; and recognise that an approach that maximises health gain for the NHS may not always be acceptable; it could deliver results that are not equitable.
Since 2022/23, NICE has been able to recommend 13 out of 14 medicines that it has appraised through its HST programme.
Asked by: Sadik Al-Hassan (Labour - North Somerset)
Question to the Foreign, Commonwealth & Development Office:
To ask the Secretary of State for Foreign, Commonwealth and Development Affairs, what recent discussions he has had with his Iraqi counterpart on strengthening UK-Iraq relations.
Answered by Hamish Falconer - Parliamentary Under-Secretary (Foreign, Commonwealth and Development Office)
I met Iraqi Foreign Minister Dr Fuad Husein during the official visit of his Prime Minister Mohammed Shia al-Sudani to the UK from 14-16 January. During the visit, our Prime Ministers signed the landmark Partnership and Cooperation Agreement, a wide-ranging treaty on trade and strategic cooperation, and announced a trade package worth up to £12.3 billion.
Asked by: Sadik Al-Hassan (Labour - North Somerset)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what recent discussions he has had with Cabinet colleagues on multi-year funding settlements for integrated care boards.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
Integrated care board (ICB) allocations for 2025/26 were published on 30 January alongside the 2025/26 NHS Planning Guidance, with further information available at the following link:
https://www.england.nhs.uk/allocations/
The pre-requisite for multi-year settlements for ICBs is a multi-year settlement for the Department, and phase two of the Spending Review is currently underway. There have not yet been discussions with Cabinet colleagues on what the Department’s settlement in the Spending Review will then mean for ICB allocations beyond 2025/26.
Asked by: Sadik Al-Hassan (Labour - North Somerset)
Question to the Department for Energy Security & Net Zero:
To ask the Secretary of State for Energy Security and Net Zero, what plans he has to implement a national system to monitor petrol prices.
Answered by Miatta Fahnbulleh - Parliamentary Under Secretary of State (Department for Energy Security and Net Zero)
The Government gave the Competition and Markets Authority (CMA) statutory information gathering powers which commenced on 1 January 2025 so that it can monitor and scrutinise petrol and diesel prices. The CMA will be able to assess how well competition is working in the road fuel market and advise government if further actions are needed to protect consumers.
The Government has also committed to implement Fuel Finder to increase price transparency, so consumers can compare prices to find the best deal and incentivise greater competition. Subject to legislation and parliamentary timings, we aim to launch Fuel Finder by the end of 2025.
Asked by: Sadik Al-Hassan (Labour - North Somerset)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, with reference to his Department's reforming elective care for patients plan, published on 6 January 2025, what steps he is taking to improve asthma follow-up treatment.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The Elective Reform Plan, published in January 2025, sets out the reform efforts needed to return to the 18-week constitutional standard, including the need to put the patient front and centre and reform elective pathways. In recognition of the unacceptably long waits experienced at present, the plan commits a particular focus on respiratory health, as one of five initial specialties where a clinically led process will agree on the reforms needed to improve waiting times and re-design pathways in order to improve patient experience and outcomes, and make best use of clinical time.
The Elective Reform Plan commits to giving patients more choice and control over their follow up care. This includes through increasing the use of Patient Initiated Follow-Ups (PIFU), which empowers patients to book their own follow up appointments when they need them, preventing appointments that are low value to patients and to clinicians. Many respiratory patients will be appropriate for a PIFU pathway, including patients with asthma, depending upon their circumstances.
We are also committed to helping support the self-management of conditions so that patients are better equipped to recognise changes in their condition and take control of their own care. NHS England has developed a national bundle of care for children and young people with asthma, including accredited asthma training courses, alongside education and self-management resources for schools, families, and carers.
NHS England has also introduced the adult asthma best practice tariff to improve the proportion of patients who receive a specialist review of their care within 24 hours of emergency admission for an asthma attack and receive a discharge bundle before leaving hospital.