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 for Work and Pensions:
To ask the Secretary of State for Work and Pensions, what assessment they have made of the potential impact of welfare reforms on people living with (a) bipolar and (b) other serious mental illnesses.
Answered by Stephen Timms - Minister of State (Department for Work and Pensions)
The Work Capability Assessment is not working and needs to be reformed or replaced alongside a proper plan to help disabled people into work, which will help them, businesses and the economy.
We know that change is desperately needed but equally these sorts of changes should not be made in haste.
So, alongside our Get Britain Working White Paper, we want to engage with disabled people, and others with expertise and experience on these issues, to consider how to address these challenges and build a better system.
We will reconsult on the proposed WCA changes as part of our Green Paper before the Spring 2025 forecast that will bring forward wider proposals to reform the health and disability benefits system. The reforms will be subject to full consultation.
Asked by: Peter Dowd (Labour - Bootle)
Question to the Department for Work and Pensions:
To ask the Secretary of State for Work and Pensions, what steps the Government is taking to ensure people with bipolar receive the support they need to (a) access and (b) stay in work.
Answered by Alison McGovern - Minister of State (Department for Work and Pensions)
Backed by £240m investment, the Get Britain Working White Paper launched on 26 November will drive forward approaches to tackling economic inactivity and work toward the long-term ambition of an 80% employment rate.
Employers play a key role in increasing employment opportunities and supporting disabled people and people with health conditions, to thrive as part of the workforce. Our support to employers includes increasing access to Occupational Health, a digital information service for employers and the Disability Confident scheme.
Appropriate work is generally good for health and wellbeing, so we want everyone to get work and get on in work, whoever they are and wherever they live.
Disabled people and people with health conditions, including people with bipolar disorder, are a diverse group so access to the right work and health support, in the right place, at the right time, is key. We therefore have a range of specialist initiatives to support individuals to stay in work and get back into work, including those that join up employment and health systems.
Measures include support from Work Coaches and Disability Employment Advisers in Jobcentres and Access to Work grants, as well as joining up health and employment support around the individual through Employment Advisors in NHS Talking Therapies and Individual Placement and Support in Primary Care.
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.