Dec. 05 2023
Source Page: John Swinney's meetings with Ross Greer, Ann Gloag, Expert Economic Panel, Tracy Black and various MSPs: FOI releaseFound: felt compelled to create a healthcare solution after her 23-year-old sister died of a rare form of motor
Minutes and decisions Dec. 01 2023
Committee: Backbench Business CommitteeFound: Appraisals * Westminster Hall 0.25 31.5 50.25 ( 18.75) 8 June 2023 (1) Obesity and Fatty Liver Disease
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.