Asked by: Julian Sturdy (Conservative - York Outer)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps she is taking to support people living with motor neurone disease.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
The National Institute for Health and Care Excellence has published a clinical guideline on the assessment and management of motor neurone disease (MND), to support its diagnosis. The guideline recommends coordinated care for people with MND, using a clinic based, MND specialist, multi-disciplinary team approach. The core multi-disciplinary team should consist of healthcare and other professionals with expertise in MND, and should include specialist nurses.
The Government has committed to delivering at least £50 million to support MND research over five years, from 2022 onwards, as part of a package of £375 million for research into neurodegenerative diseases. In June 2023, the Government announced that more than £35 million of the £50 million pledged to cutting-edge MND research has now been allocated, just two years into a five-year funding commitment. Work continues at pace to support MND researchers in submitting high-quality bids for open funding calls. Further information is available at the following link:
NHS England commissions specialised services to support people living with MND, as set out in the published service specification for specialised neurology services. The support provided includes the provision of multi-disciplinary care from specialist clinicians, including neurologists, specialist nurses, speech and language therapists, dietetics and nutrition support, and physiotherapy, depending on individual clinical need. The service specification for specialised neurology services is available at the following link:
https://www.england.nhs.uk/wp-content/uploads/2013/06/d04-neurosci-spec-neuro.pdf
In addition, NHS England commissions a specialised communication aid service known as Augmentative and Alternative Communication, as set out in the published service specification. This service supports and prioritises individuals with rapidly degenerative conditions, including MND. The service specification for Augmentative and Alternative Communication, is available at the following link:
Asked by: Alex Norris (Labour (Co-op) - Nottingham North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment she has made of the adequacy of the provision of Riluzole for patients with motor neurone disease.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
We are aware that one of the suppliers of riluzole 50 milligram tablets is experiencing a supply issue. However, alternative suppliers have stock available. We are working closely with all the manufacturers and others operating in the supply chain to help ensure supplies remain available for patients in the United Kingdom.
We have well-established processes for managing and mitigating medicine supply issues, which involve working with the pharmaceutical industry, the Medicines and Healthcare products Regulatory Agency, NHS England, the devolved governments, and others operating in the supply chain to help ensure patients have access to the treatments they need.
Asked by: Alex Norris (Labour (Co-op) - Nottingham North)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps she is taking to improve access to Riluzole for patients with motor neurone disease.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
We are aware that one of the suppliers of riluzole 50 milligram tablets is experiencing a supply issue. However, alternative suppliers have stock available. We are working closely with all the manufacturers and others operating in the supply chain to help ensure supplies remain available for patients in the United Kingdom.
We have well-established processes for managing and mitigating medicine supply issues, which involve working with the pharmaceutical industry, the Medicines and Healthcare products Regulatory Agency, NHS England, the devolved governments, and others operating in the supply chain to help ensure patients have access to the treatments they need.
Asked by: Andrew Lewer (Conservative - Northampton South)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what steps her Department is taking to tackle shortages of Riluzole; and whether she plans to issue guidance to (a) local NHS Trusts and (b) prescribers to help ensure patients are able to access treatment for motor neurone disease.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
We are aware that one of the suppliers of riluzole 50 milligram tablets is experiencing a supply issue. However, alternative suppliers have stock available. We are working closely with all the relevant manufacturers to expedite deliveries, where possible, to ensure supplies remain available for patients in the United Kingdom.
We have well-established processes for managing and mitigating medicine supply issues, which involve working with the pharmaceutical industry, the Medicines and Healthcare products Regulatory Agency, NHS England, the devolved governments and others operating in the supply chain to help ensure patients have access to the treatments they need.
Asked by: Damien Moore (Conservative - Southport)
Question to the Department for Science, Innovation & Technology:
To ask the Secretary of State for Science, Innovation and Technology, what steps her Department is taking to support research into the causes of motor neurone disease.
Answered by Andrew Griffith - Minister of State (Department for Science, Innovation and Technology)
In November 2021, the Government committed to delivering at least £50 million to support motor neurone disease (MND) research over five years, as part of a package of £375 million for research into neurodegenerative diseases.
In June 2023, the government announced that more than £35 million of the £50 million pledged to cutting-edge MND research has now been allocated, just two years into a five year funding commitment. Work continues at pace to support MND researchers to submit high quality bids for open funding calls. (https://www.gov.uk/government/news/government-continues-delivering-on-50-million-funding-pledge-for-motor-neurone-disease-research)
Asked by: Damien Moore (Conservative - Southport)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what support his Department provides for research into motor neurone disease.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Government responsibility for delivering motor neurone disease (MND) research is shared between the Department of Health and Social Care, with research delivered by the National Institute for Health and Care Research (NIHR), and the Department for Science, Innovation and Technology, with research delivered via UK Research and Innovation (UKRI).
The Government has committed to make at least £50 million available for MND research over the next five years, ending in March 2027. Around three-quarters of the £50 million pledged funding (£36.9 million) has now been allocated to cutting edge researchers by DHSC and DSIT, less than two years since the announcement. For the remainder of the £50 million, we continue to support researchers to apply for funding via the Medical Research Council and NIHR MND highlight notice.
Asked by: Damien Moore (Conservative - Southport)
Question to the Department for Energy Security & Net Zero:
To ask the Secretary of State for Energy Security and Net Zero, what steps her Department is taking to support people with motor neurone disease with the cost of energy for medical equipment.
Answered by Amanda Solloway - Government Whip, Lord Commissioner of HM Treasury
Ministers have recently met with the Motor Neurone Disease Association to discuss this matter. Government is continually reviewing the financial support it provides for the differing energy needs within its communities and prioritising support for the most vulnerable. The Help for Households campaign includes numerous cost-of-living support schemes in 2023/2024, such as the Winter Fuel Payment, Warm Home Discount, Disability Cost of Living Payment and the Cost-of-Living Payment for those on means tested benefits which has increased from up to £650 in 2022/2023 to £900 in 2023/2024.
Additionally, the Ofgem energy price cap and Energy Price Guarantee (EPG) will continue to work together to protect consumers as the EPG will remain in place as a safety net until March 2024 should wholesale prices increase significantly during this period.
Asked by: Damien Moore (Conservative - Southport)
Question to the Department of Health and Social Care:
To ask the Secretary of State for Health and Social Care, what assessment she has made of the implications for her policies of the report on Understanding the experiences of unpaid carers of people living with Motor Neurone Disease, published by the Motor Neurone Disease Association in November 2022.
Answered by Helen Whately - Minister of State (Department of Health and Social Care)
No assessment has been made on the policy implications following the publication of the report.
Under the Care Act 2014, local authorities are required to undertake a Carer’s Assessment for any unpaid carer who appears to have a need for support and to meet their eligible needs on request from the carer.
In 2023/24, £327 million of Better Care funding has been earmarked to provide short breaks and respite services for carers. This also funds additional advice and support to carers and a small number of additional local authority duties.
Asked by: Ian Byrne (Labour - Liverpool, West Derby)
Question to the Department for Energy Security & Net Zero:
To ask the Secretary of State for Energy Security and Net Zero, what steps his Department are taking to provide financial support for energy costs to people with (a) motor neurone disease and (b) other conditions who run assistive medical equipment in their homes.
Answered by Amanda Solloway - Government Whip, Lord Commissioner of HM Treasury
The Government keeps under continual review the financial support it provides for the differing energy needs within different communities and prioritises support for the most vulnerable.
Last winter the government paid around half of the typical household's energy Bill. And going into this winter, The Government has in place multiple schemes to support households with energy costs. These include the Winter Fuel Payment, Warm Home Discount, Disability Cost of Living Payment and the Cost-of-Living Payment for those on means tested benefits which has increased from up to £650 in 2022/2023 to £900 in 2023/2024.
Additionally, the default tariff price cap and Energy Price Guarantee will continue work together to protect consumers as the EPG will remain in place as a safety net until March 2024 should wholesale prices increase significantly during this period.
Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what measures they are taking to ensure that healthcare professionals receive updated training and resources for the accurate and timely diagnosis of motor neurone disease.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
All health professionals involved in assessing, caring for and treating people with motor neurone disease (MND) should have sufficient and appropriate training and competence. Individual employers are responsible for ensuring their medical and nursing staff are trained and competent to carry out their role and to invest in the future of their staff through providing continuing professional development (CPD) funding.
To supplement local employer investment for CPD, the Government announced in September 2019 a £210 million funding boost to provide every nurse, midwife, and allied health professional (AHP) working in the National Health Service in England with a personal budget of £1,000 over three years to 2022/23.
The NHS Long Term Workforce Plan, published on 30 June 2023, sets out NHS England’s commitment to continue national CPD funding for nurses, midwives and AHPs. The operation of this scheme will be kept under review, to ensure subsequent funding is in line with workforce growth and inflation, well-targeted and achieving the desired outcomes.
To support the diagnosis of MND, the National Institute for Health and Care Excellence has published a clinical guideline on the assessment and management of MND (NG42).
NHS England commissions specialised neurology services for the assessment, diagnosis and care of patients with a range of neurological conditions, including MND, as set out in the published service specification. A copy of this specification is attached.
NHS England currently has a National Transformation Programme for Neurosciences, which is undertaking considerable work to review and develop optimal care pathways, including early diagnosis and model of care for patients with a range of neurological conditions, including MND.
Additionally, the National Neurosciences Advisory Group, a collaboration of specialist clinicians, allied health professionals and charity representatives, developed a clinical pathway for MND, published in June 2023. A copy of the pathway is attached.
The pathway is being used to inform the proposed changes to the neurology service model, which will in turn be used to revise the service specification for neurology.
NHS England does not currently monitor or evaluate rates of diagnosis of neurological conditions, including MND, nor does it have metrics in place to assess diagnostic rates.