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Written Question
Babies: Screening
Monday 24th July 2023

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, with reference to the report by the All-Party Parliamentary Group for Muscular Dystrophy entitled Newborn Screening for Rare Conditions, published in May 2023, what assessment he has made of the implications for his policies of the recommendations of that report that the UK National Screening Committee should (a) give greater consideration to existing real-world evidence and (b) consider international evidence from countries with similar health systems during its review of new conditions to be included within the NHS newborn screening programme.

Answered by Will Quince

The UK National Screening Committee (UK NSC) has published its evidence review process, which outlines the type of evidence taken into consideration when making a screening recommendation, and is available at the following link:

https://www.gov.uk/government/publications/uk-nsc-evidence-review-process/uk-nsc-evidence-review-process

The UK NSC is clear that screening is introduced where the benefit to screen clearly outweighs the harm, this is underpinned by robust peer-reviewed evidence.

The UK NSC considers a wide array of evidence when making recommendations, including published peer-reviewed evidence, public, clinical and academic commentary and real-world evidence undertaken internationally. However, the UK NSC needs to be confident when making screening recommendations that the offer to screen is supported by robust evidence that clearly illustrates that the benefit outweighs the harms.


Written Question
Babies: Screening
Monday 24th July 2023

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, with reference to the APPG for Muscular Dystrophy report entitled Newborn Screening for Rare Conditions, published May 2023, what assessment he has made for the implications for his policies of the recommendation that when conditions previously rejected for newborn screening are reassessed, there should be a clear expedited process that demonstrates how gaps will be filled rather than restarting a review process each time.

Answered by Will Quince

The UK National Screening Committee (UK NSC) has published its evidence review process, which is available at the following link:

https://www.gov.uk/government/publications/uk-nsc-evidence-review-process/uk-nsc-evidence-review-process

As outlined in the process, an evidence map is commissioned first. This process deliberately builds on previous evidence and does not start again. This evidence map draws on uncertainties identified from the previous review to identify whether there has been any advancement in the evidence base for that topic before a more significant review is commissioned. The final evidence product (a map or a review) draws attention to the gaps in the evidence that mean the UK NSC cannot confidently recommend screening.

The UK NSC’s process using an evidence map is similar to a process used by the National Institute for Health and Care Excellence.


Written Question
Unemployment: Multiple Sclerosis
Wednesday 1st February 2023

Asked by: Stephen Timms (Labour - East Ham)

Question to the Department for Work and Pensions:

To ask the Secretary of State for Work and Pensions, if he will make an estimate of the number of people with Multiple Sclerosis who are economically inactive.

Answered by Tom Pursglove - Minister of State (Minister for Legal Migration and Delivery)

The specific information requested is not available.

The Prime Minister has tasked the DWP’s Secretary of State to look in detail at the issue of workforce participation. This involves working with other Government departments, including the Department of Health and Social Care, to identify and understand the barriers preventing people from joining the workforce and/or resulting in people leaving the workforce early.

Disabled people and people with health conditions are a key focus of this work, which will build on the Government’s existing package of support to help disabled people and people with health conditions to start, stay and succeed in work.

Background

Headline estimates on employment, unemployment and economic inactivity are produced using the Labour Force Survey (LFS), which provides internationally recognised information on the UK labour market. The LFS also asks respondents about any long-term (lasting or expected to last 12 months or more) physical or mental health condition they may have with 18 different conditions, or groups of conditions, to select from. Multiple Sclerosis would normally be recorded under the category Progressive Illnesses (not included elsewhere), which also includes conditions such as Cancer, symptomatic HIV, Parkinson’s Disease and Muscular Dystrophy. A breakdown for the individual conditions within this category is not available from the LFS.

In 2021/2022, the number of economically inactive people who reported having a Progressive Illness was 410,000 (or 5% of the total number of people who were economically inactive).

Source: The employment of disabled people 2022 - GOV.UK (www.gov.uk)


Written Question
Muscular Dystrophy: Research
Tuesday 1st November 2022

Asked by: Hilary Benn (Labour - Leeds Central)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 27 September 2022 to Question 51448, on Muscular Dystrophy: Research (a) whether the NIHR plans to fund research into the cause and potential treatments for Distal Myopathy-5 and ADSSL1 Myopathy and (b) if she will make an assessment of research being undertaken in other countries into this disease.

Answered by Will Quince

The National Institute for Health and Care Research (NIHR) has no plans to issue any specific commissioned calls for research. The NIHR welcomes applications for funding into any area of health and care research. Research proposals in all areas compete for the funding available. Applications are subject to peer review and judged in open competition, with awards based on the importance of the topic to patients and health and care services, value for money and scientific quality. There are no plans to make a comparative assessment of specific research being undertaken in other countries.


Written Question
Muscular Dystrophy: Medical Treatments
Wednesday 19th October 2022

Asked by: Andrew Rosindell (Conservative - Romford)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, for what reason people with muscular dystrophy LGMD-E2 are not entitled to antiviral treatment under the Government’s antiviral treatments protocol.

Answered by Robert Jenrick

Clinically eligible cohorts have been determined by an independent expert group commissioned by the Department and included in a clinical policy agreed by the United Kingdom Chief Medical Officers. The cohorts include patients whose immune systems mean they are at higher risk of COVID-19, such as organ transplant patients or those recently undergoing chemotherapy or radiotherapy. This policy was based on evidence that certain health conditions can make a patient much more likely to progress to severe disease. As a result, these patients could benefit the most from these novel medications. People with muscular dystrophy are not currently identified as part of this eligible cohort.

The Therapeutics Clinical Review Pane, which was established to focus on at-risk patient cohorts that could be eligible for COVID-19 therapies, including providing advice on cohorts, can consider specific queries from clinicians and patient groups supported by clinicians, including on eligibility and conditions like muscular dystrophy.


Written Question
Muscular Dystrophy: Research
Wednesday 19th October 2022

Asked by: Hilary Benn (Labour - Leeds Central)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 27 September 2022 to Question 51448 on Muscular Dystrophy: Research, whether the National Institute for Health and Care Research has plans to undertake research into the (a) cause of and (b) potential treatments for (i) Distal Myopathy-5 and (ii) ADSSL1 Myopathy.

Answered by Robert Jenrick

It is not usual practice for the National Institute for Health and Care Research (NIHR) and other research funders to ring-fence funds for expenditure on particular topics. Research proposals in all areas compete for the funding available. Applications are subject to peer review and judged in open competition, with awards made based on the importance of the topic to patients and health and care services, value for money and scientific quality. Research into the cause of and potential treatments for Distal Myopathy-5 and ADSSL1 Myopathy would be subject to a successful bid for the NIHR’s research funding.


Written Question
Muscular Dystrophy: Research
Tuesday 27th September 2022

Asked by: Hilary Benn (Labour - Leeds Central)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, what research is being undertaken into the (a) cause of and (b) potential treatments for Distal Myopathy-5 and ADSSL1 Myopathy.

Answered by Robert Jenrick

The Department funds the majority of research through the National Institute for Health and Care Research (NIHR). The NIHR has not funded any research into the cause and potential treatments for Distal Myopathy-5 and ADSSL1 Myopathy in the last five years.


Written Question
Coronavirus: Disease Control
Wednesday 27th April 2022

Asked by: Lord Mendelsohn (Labour - Life peer)

Question to the Department of Health and Social Care:

To ask Her Majesty's Government, further to the Written Answer by Lord Kamall on 15 March (HL6546), which (1) charities, and (2) stakeholders, were consulted by the Chief Executive of the UK Health Security Agency, Dr Jenny Harries, with regard to (a) immunocompromised patients, and (2) the Living with Covid strategy.

Answered by Lord Kamall

The Chief Executive of the UK Health Security Agency has consulted with the Cabinet Office Disabilities and Health Charities Communications Forum. Those in attendance included:

Age UK; Anthony Nolan; Blood Cancer UK; British Liver Trust; Business Disability Forum; Cancer Research UK; Carers UK; Diabetes UK; Epilepsy Action; Kidney Care UK; Macmillan Cancer Support; Mencap; MS Society; Parkinson's UK; Patients Association; Rare Autoimmune Rheumatic Disease Alliance; Rethink Mental Illness: Richmond Group; Scope; and Versus Arthritis.

We have also met with a coalition of approximately 20 charities representing individuals who are immunosuppressed or are at higher risk from serious illness should they contract COVID-19. This included: Kidney Care UK; MS Society; British Liver Trust; Arthritis and Musculoskeletal Alliance; Bowel Cancer UK; The Rare Autoimmune Rheumatic Disease Alliance; National Rheumatoid Arthritis Society; Blood Cancer UK; Crohn’s and Colitis UK; Muscular Dystrophy UK; Asthma UK and the British Lung Foundation; Versus Arthritis; Age UK; Macmillan Cancer Support; Kidney Research UK; Scleroderma and Raynard’s UK Lupus UK; Anthony Nolan; Action for Pulmonary Fibrosis; British Liver Trust; Cystic Fibrosis Trust; and Leukaemia Care.


Written Question
Muscular Dystrophy: Research
Monday 31st January 2022

Asked by: Barbara Keeley (Labour - Worsley and Eccles South)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, how much funding his Department has allocated to research into treatments for Duchenne muscular dystrophy (a) in each of the last and (b) for the next five years.

Answered by Edward Argar - Minister of State (Ministry of Justice)

The Department funds research on health and social care through the National Institute for Health Research (NIHR). In the past five financial years, the NIHR has not awarded new programme funding for specific research projects relating to the treatment of Duchenne muscular dystrophy (DMD). However, the NIHR has supported delivery of 53 studies relating to treatment of DMD via its Clinical Research Network (CRN). The CRN enables high-quality health and care research in England by providing additional staff, facilities, equipment and support services so that research is not subsidised with funding that has been provided for health and care treatments and service.

The NIHR does not usually ring-fence funds for particular topics therefore funding for future years is not available. Awards are made in open competition on the basis of the importance of topics to patients, and heath and care services, value for money, and scientific quality judged through peer review.


Written Question
Muscular Dystrophy: Health Services
Tuesday 16th November 2021

Asked by: Rachael Maskell (Labour (Co-op) - York Central)

Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, whether integrated care systems or NHS England has responsibility for continuing to commission specialised services for muscular dystrophy.

Answered by Edward Argar - Minister of State (Ministry of Justice)

NHS England will remain responsible for commissioning specialised services, accountable for those services and set the national standards.

However, NHS England has established a programme to determine whether it is appropriate to delegate commissioning specialised services to integrated care boards (ICBs). The programme is yet to determine whether NHS England or ICBs will commission specialised diagnostic services in the future.