There have been a number of questions raised in the House of Commons since 7 Oct, the day the Regulation 28 report preventing future deaths was issued. Sorry I don't know how to set them out like
@Sly Saint for easy reading. Most are holding answers with one substantive answer being provided to Sharon Hodgson's question.
Find written questions and answers - Written questions, answers and statements - UK Parliament
yes sorry, I've found them in my email trash!
Ben Spencer Shadow Minister (Health and Social Care)
To ask the
Secretary of State for Health and Social Care, whether he has had recent discussions with the
National Institute for Health and Care Research on support for research into (a) care and (b) treatment for people with myalgic encephalomyelitis or chronic fatigue syndrome (
ME/
CFS).
Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
The
Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.
Sharon Hodgson Labour, Washington and Gateshead South
To ask the
Secretary of State for Health and Social Care, what plans he has to ensure that the 2021 NICE Guideline for
ME/
CFS is implemented.
Sharon Hodgson Labour, Washington and Gateshead South
To ask the
Secretary of State for Health and Social Care, what assessment he has made of the adequacy of the safety of
NHS care for patients with (a) severe and (b) very severe
ME.
Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
The 2021
National Institute for Health and Care Excellence’s (NICE) guidelines on the diagnosis and management of myalgic encephalomyelitis, also known as chronic fatigue syndrome (
ME/
CFS), provides recommendations on principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach with access to a range of health and social care professionals based on needs.
The NICE’s guidelines are not mandatory, but the Government does expect healthcare commissioners to take the guidelines fully into account in designing services to meet the needs of their local population, and to work towards their implementation over time.
No specific assessment has been made of the adequacy of the safety of
National Health Service care for patients with severe and very severe ME/CFS, but there are steps that the Government is taking to improve care for patients with ME/CFS, including those with severe and very severe ME/CFS.
The Department has funded the £3.2 million DecodeME study with the
Medical Research Council to understand the causes and consequences of, and find treatments for, ME/CFS. This study aims to understand if there is a genetic component to the condition and, in doing so, increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.
The public consultation on the interim delivery plan for ME/CFS was run in 2023. It has been a priority since July 2024 to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. Departmental officials are in the process of finalising a report summarising the responses, for publication. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those with severe and very severe ME/CFS.
Ben Spencer Shadow Minister (Health and Social Care)
To ask the
Secretary of State for Health and Social Care, whether he has made an assessment of the implications for his policies for the (a) care and (b) treatment of myalgic encephalomyelitis or chronic fatigue syndrome (
ME/
CFS) of the report entitled Maeve Boothby O’Neill: Prevention of Future Deaths Report, published on 8 October 2024.
Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
Our deepest sympathies go out to Maeve’s family and friends in this tragic case. Every patient deserves to have their condition understood and treated to the highest standard, and this is a heart-wrenching example of a patient falling through the cracks.
The Department has received a Prevention of Future Deaths (
PFD) report, which we are currently reviewing. It is important that we learn the lessons from every PFD report, and we will consider the report carefully before responding appropriately.
We are committed to improving the care and support for all those affected by myalgic encephalomyelitis, also known as chronic fatigue syndrome (
ME/
CFS). It is a priority to publish the response to the 2023 consultation on the ME/CFS interim delivery plan. The consultation responses, alongside continued stakeholder engagement, will inform the development of the final delivery plan, which we aim to publish in the winter of 2024/25.