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: 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 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.
Jul. 15 2009
Source Page: Personal Health Budget pilot programme: provisional pilot sites. 4 p.Found: neurone disease, multiple sclerosis, muscular dystrophy, Parkinson™s disease, stroke) Berkshire West
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: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government what is their current assessment of coordination of motor neurone disease research via the MND Collaborative Partnership, co-funded by the medical research charity LifeArc and the motor neurone disease patient charities MND Association, My Name’5 Doddie Foundation and MND Scotland.
Answered by Lord Markham - Parliamentary Under-Secretary (Department of Health and Social Care)
The MND Collaborative Partnership is monitored by the funding partners via quarterly reporting. The Partnership was launched to bring researchers together to speed the development of effective treatments for motor neurone disease. The Government, via the Medical Research Council and the National Institute for Health and Care Research, is co-funding the £4.25 million collaborative alongside LifeArc, My Name’5 Doddie, MND Association and MND Scotland. The Government is contributing a further £2 million to focus on gathering and analysing existing data.
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 support effective routes to market for precision medicines for (a) motor neurone disease and (b) other rare diseases in the UK.
Answered by Andrew Stephenson - Minister of State (Department of Health and Social Care)
Should the Medicines and Healthcare products Regulatory Agency (MHRA) receive a marketing authorisation application (MAA) or applications, the MHRA will consider the drug with regards to quality, safety, and efficacy. The MHRA has procedures in place to consider drugs as part of an accelerated pathway. This is possible as part of national access collaboration, and international recognition. The MHRA would be able to consider motor neurone disease and other rare disease treatment products, under any of the procedures for the benefit of patients.
Asked by: Baroness Ritchie of Downpatrick (Labour - Life peer)
Question to the Department of Health and Social Care:
To ask His Majesty's Government (1) what is their assessment of the effectiveness of their efforts to enhance early motor neurone disease diagnosis, specifically in terms of reducing diagnostic delays, (2) how they are monitoring and evaluating the effectiveness of their efforts to enhance motor neurone disease diagnosis, and (3) what metrics they are using to assess progress in this area.
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.
Mentions:
1: Philip Davies (Con - Shipley) Two groups of patients who struggle with that are motor neurone disease sufferers and cancer patients - Speech Link
2: Jo Churchill (Con - Bury St Edmunds) Its work is incredibly important—its motor neurone disease campaign has been mentioned—but we must also - Speech Link