Peter Dowd

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.

Following the 2023 UK National Screening Committee (UK NSC) recommendation for an in-service evaluation (ISE) of spinal muscular atrophy (SMA), partnership planning between the Department, NHS England, the National Institute for Health and Care Research (NIHR), and other stakeholders has been in progress to implement an ISE in the National Health Service.

An ISE is a programme of work to develop high quality evidence in live NHS services. Successfully implementing the ISE will require funding, however, departmental budgets, including for the NHS beyond 2025/26, will be set through Phase 2 of the Spending Review, which will conclude and be published in June 2025.

The findings of the ISE, which will run over a few years, will provide the UK NSC with real-world evidence on feasibility, acceptability, and clinical and cost-effectiveness, as well as longer term health outcomes. Along with an SMA screening modelling study, these will inform a UK NSC recommendation on whether SMA should be added to the newborn blood spot screening programme.

Following the 2023 UK National Screening Committee (UK NSC) recommendation for an in-service evaluation (ISE) of spinal muscular atrophy (SMA), partnership planning between the Department, NHS England, the National Institute for Health and Care Research (NIHR), and other stakeholders has been in progress to implement an ISE in the National Health Service.

An ISE is a programme of work to develop high quality evidence in live NHS services. Successfully implementing the ISE will require funding, however, departmental budgets, including for the NHS beyond 2025/26, will be set through Phase 2 of the Spending Review, which will conclude and be published in June 2025.

The findings of the ISE, which will run over a few years, will provide the UK NSC with real-world evidence on feasibility, acceptability, and clinical and cost-effectiveness, as well as longer term health outcomes. Along with an SMA screening modelling study, these will inform a UK NSC recommendation on whether SMA should be added to the newborn blood spot screening programme.

Creutzfeldt-Jakob disease (CJD) is a rapidly progressing neurodegenerative disease. As of yet, there is no cure. Treatment options focus on symptom control and palliative care.

The Department, via the National Institute for Health and Care Research, funds world-leading research to improve people’s health and wellbeing. The Department welcomes applications from specialist centres, and others, to explore advances in CJD treatment.

Creutzfeldt-Jakob disease (CJD) is a very rare but rapidly progressive and fatal disease. Effective diagnostic and care services are important in ensuring that patients and their families get the support that they need. Unfortunately, there is no known cure for CJD. Treatment options focus on symptom control and palliative care.

Specialist diagnostic services are provided by the National CJD Research and Surveillance Unit. From April 2025, funding for these services is being transferred from the National Institute for Health and Care Research to NHS England.

The Department funds research through the National Institute of Health and Care Research (NIHR). Since 2002, the Department has made over £43 million of funding available for research and surveillance of Creutzfeldt-Jakob disease (CJD) and prion diseases.

The Department is working closely with NHS England on future funding for CJD diagnostic services. The Department also works closely with the Medical Research Council (MRC) to align funding for priority research, and has met specifically with the MRC Prion Unit recently.

Both the NIHR and the MRC welcome research proposals on all aspects of human health, including CJD and prion disease. Research applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality

The Department funds research through the National Institute of Health and Care Research (NIHR). Since 2002, the Department has made over £43 million of funding available for research and surveillance of Creutzfeldt-Jakob disease (CJD) and prion diseases.

The Department is working closely with NHS England on future funding for CJD diagnostic services. The Department also works closely with the Medical Research Council (MRC) to align funding for priority research, and has met specifically with the MRC Prion Unit recently.

Both the NIHR and the MRC welcome research proposals on all aspects of human health, including CJD and prion disease. Research applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality.

Ministers hold discussions with other ministerial colleagues regularly, on a range of issues.

The Get Britain Working White Paper confirms the Government’s commitment to continuing to expand the number of places on Individual Placement Support schemes to help thousands more people with severe mental illness, including bipolar disorder, to find and stay in employment.

The White Paper also confirms our commitment to expand NHS Talking Therapies. Over 90% of NHS Talking Therapies services in England provide access to Employment Advisers with an aspiration that, by March 2025, 99% will offer employment support as part of their service.

The standard of training for general practitioners and other health care practitioners is the responsibility of the independent statutory regulatory bodies. They set the outcome standards expected at undergraduate level and approve courses, and higher education institutions, which write and teach the curricula that enables their students to meet the regulators’ outcome standards.

Whilst not all curricula may necessarily highlight a specific condition, they all nevertheless emphasize the skills and approaches a health care practitioner must develop in order to ensure accurate and timely diagnoses and appropriate treatment plans for their patients, including those with bipolar disorder.

Once qualified, health care practitioners are responsible for ensuring their own clinical knowledge remains up to date, and for identifying learning needs as part of their continuing professional development. This should include taking account of new research and guidance, such as that produced by the National Institute for Health and Care Excellence, to ensure that they can continue to provide high-quality care to all patients.

The community mental health framework sets out a vision for transforming community mental health services. The vision is a whole person, whole population approach to community health services, with new integrated models between primary and secondary care that can deliver more flexible, personalised, and holistic care, including diagnosis, for more people with severe mental illnesses such as bi-polar disorder, rather than developing specialist pathways for specific conditions.

Since April 2021, all areas have received significant additional, ring-fenced funding to develop these new integrated primary and community mental health services, built around primary care networks, in line with the community mental health framework. Local health systems have made significant progress in rolling out these integrated models of care, including for people with a diagnosis of bi-polar disorder.

The standard of training for general practitioners and other health care practitioners is the responsibility of the independent statutory regulatory bodies. They set the outcome standards expected at undergraduate level and approve courses, and higher education institutions, which write and teach the curricula that enables their students to meet the regulators’ outcome standards.

Whilst not all curricula may necessarily highlight a specific condition, they all nevertheless emphasize the skills and approaches a health care practitioner must develop in order to ensure accurate and timely diagnoses and appropriate treatment plans for their patients, including those with bipolar disorder.

Once qualified, health care practitioners are responsible for ensuring their own clinical knowledge remains up to date, and for identifying learning needs as part of their continuing professional development. This should include taking account of new research and guidance, such as that produced by the National Institute for Health and Care Excellence, to ensure that they can continue to provide high-quality care to all patients.

The community mental health framework sets out a vision for transforming community mental health services. The vision is a whole person, whole population approach to community health services, with new integrated models between primary and secondary care that can deliver more flexible, personalised, and holistic care, including diagnosis, for more people with severe mental illnesses such as bi-polar disorder, rather than developing specialist pathways for specific conditions.

Since April 2021, all areas have received significant additional, ring-fenced funding to develop these new integrated primary and community mental health services, built around primary care networks, in line with the community mental health framework. Local health systems have made significant progress in rolling out these integrated models of care, including for people with a diagnosis of bi-polar disorder.

The standard of training for general practitioners and other health care practitioners is the responsibility of the independent statutory regulatory bodies. They set the outcome standards expected at undergraduate level and approve courses, and higher education institutions, which write and teach the curricula that enables their students to meet the regulators’ outcome standards.

Whilst not all curricula may necessarily highlight a specific condition, they all nevertheless emphasize the skills and approaches a health care practitioner must develop in order to ensure accurate and timely diagnoses and appropriate treatment plans for their patients, including those with bipolar disorder.

Once qualified, health care practitioners are responsible for ensuring their own clinical knowledge remains up to date, and for identifying learning needs as part of their continuing professional development. This should include taking account of new research and guidance, such as that produced by the National Institute for Health and Care Excellence, to ensure that they can continue to provide high-quality care to all patients.

The community mental health framework sets out a vision for transforming community mental health services. The vision is a whole person, whole population approach to community health services, with new integrated models between primary and secondary care that can deliver more flexible, personalised, and holistic care, including diagnosis, for more people with severe mental illnesses such as bi-polar disorder, rather than developing specialist pathways for specific conditions.

Since April 2021, all areas have received significant additional, ring-fenced funding to develop these new integrated primary and community mental health services, built around primary care networks, in line with the community mental health framework. Local health systems have made significant progress in rolling out these integrated models of care, including for people with a diagnosis of bi-polar disorder.

The Department continues to advise patients to follow National Health Service guidance on reducing the risk of skin cancer. This advice is available publicly on the National Health Service website, at the following link:

https://www.nhs.uk/conditions/melanoma-skin-cancer/

The Department is not taking any additional steps, currently or within the last three years, to specifically fund skin cancer awareness campaigns.

NHS England run Help Us Help You campaigns to increase knowledge of cancer symptoms and address the barriers to acting on them, to encourage people to come forward as soon as possible to see their general practitioner. The campaigns focus on a range of symptoms as well as encouraging body awareness to help people spot symptoms across a wide range of cancers at an earlier point.

The Committee on Medical Aspects of Radiation in the Environment (COMARE) published a report on the health effects and risks arising from sunbeds in 2009. This report included a chapter on sunbed use in the United Kingdom, and informed the 2010 Sunbeds (Regulation) Act.

In November 2024, the Department commissioned COMARE to consider the available evidence relating to the use of sunbeds in the UK, and to determine if a new review is required. This work is ongoing, and its conclusions will be made publicly available when completed.

The Department would advise that people to the follow the National Health Service guidance on using sunscreen, which is available at the following link:

https://www.nhs.uk/live-well/seasonal-health/sunscreen-and-sun-safety/

The NHS England website is clear on the benefits of sunscreen, and the importance of using sunscreen that is of factor 30 and above.

We remain committed to the UK Rare Diseases Framework, which highlights better coordination of care as a priority to improve the lives of people with rare diseases.

Under England’s Rare Diseases Action Plans, we have committed to a range of measures to improve coordination of care. Last year, the National Institute for Health and Care Excellence published an updated quality standard on transition from paediatric to adult care, to support better co-ordination of care. NHS England continues to review and approve applications for new rare disease collaborative networks (RDCNs) across a range of specialties and disease groups. The RDCNs are an important part of NHS England’s provision to improve care and support patients with rare diseases. They are made up of groups of providers who have an interest in developing an understanding of a particular rare disease, and who are committed to working together to progress research, increase knowledge, and improve patient experience.

NHS England committed to include the definition of coordination of care in all new and revised services specifications for patients with rare diseases, and to ensure the priorities of the UK Rare Diseases Framework are embedded across highly specialised services. All highly specialised centres are required to work collaboratively with other providers in the service and to have shared care arrangements in place with local hospitals, as required.

NHS England is implementing networked models of care for patients with rare diseases, ensuring that specialist expertise is always available whilst allowing patients to be treated and cared for as close to home as possible. In addition, NHS England has committed to measuring the geographic spread of patients accessing highly specialised services to ensure that all patients have access to the services, and are not disadvantaged. A toolkit for virtual consultations was developed in 2023, and made available to all trust chief executives and highly specialised services clinical leads, to help people with complex, multi-system rare diseases access multiple specialists without needing to travel.

The UK Rare Diseases Framework sets out four priorities to improve the lives of people living with rare diseases, such as Paroxysmal Nocturnal Haemoglobinuria (PNH). This includes the priority of improving co-ordination of care.

NHS England commissions services for patients with PNH from two centres, the Leeds Teaching Hospitals NHS Trust and the King's College Hospital NHS Foundation Trust. These two services work collaboratively to provide specialist care and care coordination to patients with PNH in England. This involves specialist diagnosis, multidisciplinary team care, shared care with local hospitals, and access to specialist drugs. The centres also provide outreach clinics. The service is recognised as an exemplar and has reduced mortality and improved outcomes for patients.

Improving the lives of people living with rare and ultra-rare conditions, such as rare blood disorders, continues to be a health priority. We remain committed to the UK Rare Diseases Framework, which highlights four priorities to improve the lives of people with rare diseases, including better coordination of care, and improved access to specialist care, treatment, and drugs.

We’re working hard to provide the best possible care to those living with rare blood disorders, such as sickle cell disease and thalassaemia. NHS England’s priorities for the improvement of care for rare blood disorders includes an established programme of work to improve clinical pathways and care for people with sickle cell disease, which has recently been expanded to include thalassaemia. We are also boosting Ro subtype blood donation numbers and delivering world-leading treatments, such as the new blood matching genetic test which will reduce the risk of side effects and offer more personalised care.

NHS England commissions services for patients with Thrombotic Thrombocytopenia Purpura across 11 hospitals. This is an aggressive blood clotting disease which is difficult to diagnose and has a high mortality rate if left untreated. In the acute phase of the disease patients need rapid access to specialist care. This is a lifelong condition, and patients receive ongoing monitoring by the multidisciplinary team, shared care with local hospitals, and access to specialist drugs.

The National Health Service is reviewing and updating the service specification for haemophilia care through the Blood Disorders Clinical Reference Group, alongside a new quality dashboard that will enable commissioners to monitor the quality of the services in their areas, benchmarked against other services across the country.

A rare disease is defined as a disease or condition which affects fewer than one in 2,000 people within the general population. While they are individually rare, they are collectively common, and one in 17 people will be affected by a rare disease at some point in their lives.

Improving the lives of people living with rare conditions continues to be a health priority. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, which are: 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, treatments, and drugs. We remain committed to delivering under the framework and will publish an annual England Action Plan in 2025, which will report on progress.

The annual England Action Plan sets out specific, measurable actions for the next year under the framework's four priority areas. To ensure delivery and accountability, each action lists an owner, the desired outcomes, and how we will measure and report on progress. We have also committed to commissioning a portfolio level evaluation of England’s Rare Diseases Action Plans to measure progress for people living with rare conditions. This evaluation is now underway, and we look forward to updating on next steps in 2025.

The UK Rare Diseases Framework sets a high-level strategy to focus action across the healthcare system to address the four priorities of: 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, treatments, and drugs. Integrated care boards (ICBs) are responsible for commissioning some specialised healthcare services, which help treat patients with rare diseases, whereas others are commissioned centrally by NHS England. For those specialised services commissioned by ICBs, the ICBs must commission the services in line with service specifications and standards published by NHS England. NHS England remains accountable for the effective arrangement of those specialised services.