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.
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 his timetable is for releasing funds to support the UK National Screening Committee’s review of newborn screening for Spinal Muscular Atrophy.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
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 the planned timetable is for the UK National Screening Committee's review of its advice on screening for spinal muscular atrophy.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
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 he is taking to ensure that there are an adequate number of health professionals trained in (a) identifying and (b) supporting people affected by Creutzfeldt-Jakob disease (CJD).
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
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 collaboration there is between NHS England, the National Institute for Health and Care Research and the Medical Research Council on Creutzfeldt–Jakob disease funding; and what assessment he has made of the potential impact of withdrawal of funding on (a) Creutzfeldt–Jakob disease and (b) prion disease research by those bodies.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
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
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 (a) support research into Creutzfeldt Jakob Disease and (b) ensure that UK research does not fall behind well-funded programmes in other countries.
Answered by Ashley Dalton - Parliamentary Under-Secretary (Department of Health and Social Care)
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.
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 help support advances n CJD treatment.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
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.
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 Secretary of State for Work and Pensions on improving co-ordination between healthcare services and the welfare system to support people with bipolar.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
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.
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 he is taking to improve training for healthcare professionals to better (a) recognise and (b) diagnose bipolar.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
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.
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 introduce specialist bipolar pathways in NHS mental health services.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
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.