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.
Nov. 28 2023
Source Page: Social Security Experience Panels - Seldom Heard research programme: wave 2 reportFound: “…for someone who has motor neurone disease, sending a form out where you have to write in it is impractical
Mentions:
1: Amanda Solloway (Con - Derby North) I am reminded of my mother who suffered with chronic obstructive pulmonary disease and who sadly died - Speech Link
Written Evidence Nov. 22 2023
Inquiry: Assisted dying/assisted suicideFound: Disease, however, respects neither the clock nor the calendar: patients need the right medication
Written Evidence Nov. 22 2023
Inquiry: Assisted dying/assisted suicideFound: He was seen again 11 months later when his disease had rapidly progressed.
Written Evidence Nov. 22 2023
Inquiry: Assisted dying/assisted suicideFound: My husband of 52 years, was diagnosed with motor neurone disease (MND) in 2016.
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.