Asked by: Hilary Benn (Labour - Leeds South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will ask NICE to develop specific national guidelines on Huntington’s disease to help ensure patients with that disease have a coordinated care pathway.
Answered by Helen Whately - Shadow Secretary of State for Work and Pensions
There are no current plans for the National Institute for Health and Care Excellence to develop a guideline on Huntington’s disease. NHS England is developing a neuropsychiatry service specification which when finalised, will outline the multi-disciplinary approach to caring for patients with complex neurological conditions, including Huntington’s disease, who require specialised assessment and mental health support.
Asked by: Hilary Benn (Labour - Leeds South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, how much Government funding is being spent on research to help tackle the symptoms of Huntington’s disease.
Answered by Helen Whately - Shadow Secretary of State for Work and Pensions
The Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). In 2020/21, the Government’s expenditure on dementia and neurodegeneration research, including Huntington’s disease, was £77 million.
In the last five years, the NIHR directly funded two studies into Huntington’s disease with a total award value of £316,267. Additionally, the NIHR has supported the delivery of over 35 studies relating to Huntington’s disease via the Clinical Research Network infrastructure, including 12 specifically focusing on symptom management.
Asked by: Hilary Benn (Labour - Leeds South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, if she will ask mental health trusts to ensure that their eligibility criteria include patients with organic brain disorders, such as Huntington’s disease, to help those people access mental health support services where mental health is the presenting symptom.
Answered by Maria Caulfield
Access to mental health services is based on clinical need, including for people with organic brain disorders such as Huntington’s disease. The NHS Long Term Plan commits an additional £2.3 billion a year to expand mental health services in England by 2023/24. This includes increasing access to National Health Service talking therapies through Improving Access to Psychological Therapies (IAPT) to ensure that 1.9 million adults, including those with Huntington’s disease, can receive support for conditions such as anxiety and depression.
The NHS is developing the IAPT services include a focus on people with long term conditions. The IAPT - long term conditions services have been established to support integrated pathways between IAPT services and physical health for people with long term conditions, including neurological conditions. All integrated care systems are expected to commission IAPT services integrated into physical healthcare pathways as part of IAPT expansion plans locally.
Asked by: Hilary Benn (Labour - Leeds South)
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.
Asked by: Hilary Benn (Labour - Leeds South)
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.