Asked by: Martin Wrigley (Liberal Democrat - Newton Abbot)
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 raise awareness of Duchenne muscular dystrophy.
Answered by Andrew Gwynne - 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 Duchenne muscular dystrophy. The UK Rare Diseases Framework sets out four priorities, collaboratively developed with the rare disease community, which includes increasing awareness of rare diseases among healthcare professionals. We remain committed to delivering under the framework, and will publish an annual England action plan in 2025, which will report on progress.
The NHS England Genomics Education Programme (GEP) has continued to develop the GeNotes digital educational resource aimed at healthcare professionals, and has launched several specialities, including in neurology. Through the education and training of the workforce, the GEP will support earlier recognition, timely diagnosis, and healthcare professionals’ understanding of the genomic testing available for Duchenne muscular dystrophy.
Asked by: Martin Wrigley (Liberal Democrat - Newton Abbot)
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 support people with Duchenne muscular dystrophy.
Answered by Andrew Gwynne - 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 Duchenne muscular dystrophy (DMD). The UK Rare Diseases Framework sets out four priorities collaboratively developed with the rare disease community, and these include better coordination of care, and improving access to specialist care, treatment, 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 National Institute for Health and Care Excellence (NICE) makes recommendations for the National Health Service on whether new licensed medicines should be routinely funded by the NHS, based on an assessment of their costs and benefits. The NHS in England is legally required to fund medicines recommended by the NICE, normally within three months of the publication of final guidance. The NICE has recently published guidance recommending vamorolone as an option for treating DMD in people four years old and over, and is currently developing recommendations on the use of givinostat, which was granted a conditional marketing authorisation by the Medicines and Healthcare products Regulatory Agency for the treatment of DMD in patients aged six years old and over in December 2024.
Asked by: Martin Wrigley (Liberal Democrat - Newton Abbot)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will have discussions with NICE on the potential merits of offering Givinostat for Duchenne muscular dystrophy.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
There are no plans to have discussions with the National Institute for Health and Care Excellence (NICE) on offering givinostat for Duchenne muscular dystrophy. The NICE makes recommendations for the National Health Service on whether new licensed medicines should be routinely funded by the NHS independently, based on an assessment of their costs and benefits. The NHS in England is legally required to fund medicines recommended by the NICE, normally within three months of the publication of final guidance. The NICE is currently evaluating givinostat, and its Appraisal Committee will meet to consider its recommendations in May 2025.
Asked by: Martin Wrigley (Liberal Democrat - Newton Abbot)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential impact of the incoming US presidency on healthcare research in the UK.
Answered by Andrew Gwynne - Parliamentary Under-Secretary (Department of Health and Social Care)
The United Kingdom’s world-class health research ecosystem makes us a natural and leading partner for the United States’ research community and life sciences. The United States ranks the highest in the number of co-authorships, between UK researchers and researchers in international organisations, of peer reviewed biomedical journal papers. The Government will continue to encourage close working between our respective research funders to support cutting-edge, collaborative research between the UK and the United States.
Asked by: Martin Wrigley (Liberal Democrat - Newton Abbot)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, whether his Department plans to monitor the declining charitable income of hospices and the potential link to deterioration in service.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
Palliative care services are included in the list of services an integrated care board (ICB) must commission. This promotes a more consistent national approach and supports commissioners in prioritising palliative and end of life care. To support ICBs in this duty, NHS England has published statutory guidance and service specifications.
Whilst the majority of palliative and end of life care is provided by National Health Service staff and services, we recognise the vital part that voluntary sector organisations, including hospices, also play in providing support to people at end of life and their loved ones.
Individual ICBs oversee palliative care provision by NHS and non-NHS services, including charitable hospices, within each area.
The biggest investment in a generation for hospices has been announced by the Government, ensuring that hospices can continue to deliver the highest quality end of life care possible for their patients, families, and loved ones.
This was through a £100 million boost for adult and children’s hospices to ensure they have the best physical environment for care, and £26 million of revenue to support children and young people’s hospices. Further details of the funding allocation and dissemination will be set out in the new year.
We, alongside key partners NHS England, will continue to proactively engage with our stakeholders, including the voluntary sector and independent hospices, on an ongoing basis, in order to understand the issues they face.
Asked by: Martin Wrigley (Liberal Democrat - Newton Abbot)
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 plans to provide for meeting the Mental Health Investment Standard in the 2025-26 financial year.
Answered by Stephen Kinnock - Minister of State (Department of Health and Social Care)
We remain committed to the Mental Health Investment Standard. My Rt Hon. Friend, the Secretary of State for Health and Social Care, will set out expectations for mental health funding, including the share of overall National Health Service expenditure in 2025/26, in due course, as required under section 3(2) of the Health and Care Act 2022. NHS England is also expected to issue its priorities and operational planning guidance for the NHS for 2025/26 shortly.
Asked by: Martin Wrigley (Liberal Democrat - Newton Abbot)
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 mitigate the impact of shortages of medicines for people with (a) epilepsy and (b) Parkinson's disease.
Answered by Karin Smyth - Minister of State (Department of Health and Social Care)
The Department is working hard with industry to help resolve intermittent supply issues with some epilepsy medications. As a result of ongoing activity and intensive work, including directing suppliers to expedite deliveries, some issues, including with some carbamazepine and oxcarbazepine presentations, have been resolved.
There is a supply issue with all strengths of lamotrigine tablets, used to manage epilepsy, due to manufacturing issues. A supply issue with one of the strengths of lamotrigine tablets has recently resolved, and the remaining strengths are expected to resolve from early December 2024. Other manufacturers of lamotrigine tablets can meet the increased demand during this time.
The Department is aware of supply constraints with one supplier of amantadine 100mg capsules used in the management of Parkinson’s Disease, however stocks remain available from alternative suppliers to cover this demand.
The Department continues to work closely with industry, the NHS and others to help ensure patients continue to have access to an alternative treatment until their usual product is back in stock.