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World ME Day
01 May 2024
Lead MP
Sajid Javid
Bromsgrove
Con
Responding Minister
Andrew Stephenson
Tags
NHSMental Health
Word Count: 8826
Other Contributors: 9
At a Glance
Sajid Javid raised concerns about world me day in Westminster Hall. A government minister responded.
Key Requests to Government:
The Minister should commit to publishing the final cross-Government delivery plan for ME before the summer recess or at the latest just after. The plan must address medical understanding, data collection, and support for research initiatives like DecodeME and LOCOME.
How the Debate Unfolded
MPs spoke in turn to share their views and ask questions. Here's what each person said:
Lead Contributor
There is a lack of progress in addressing myalgic encephalomyelitis (ME), with patients often misdiagnosed or dismissed. The condition can start after a viral infection and lead to drastic changes in physical ability, loss of mental focus, and social isolation. The interim delivery plan published by the Government last year has not been followed up with a final version as promised, raising concerns about further delays due to upcoming election.
Andrew Gwynne
Ind
Gorton and Denton
Andrew Gwynne discussed the impact of ME and long covid, highlighting that at least 250,000 people in the UK live with ME and an estimated 1.3 million people have ME-like symptoms following a COVID-19 infection. He emphasized the debilitating nature of the condition, including fatigue, disturbed sleep, exhaustion, and brain fog. Gwynne also pointed out that ME costs the UK economy about £3.3 billion annually and called for better understanding and support from employers and changes to welfare systems.
Carol Monaghan
SNP
Glasgow North West
The publication of the final ME delivery plan has been delayed multiple times, with 62 deaths attributed to ME between 2017 and 2021. The speaker pressed for immediate release of the final plan before a potential change in government priorities. She highlighted that one in four people with ME is severely affected, requiring house-bound or bed-bound care and needing 24-hour support. Carol Monaghan questioned why many health trusts were not implementing new guidelines and asked the Minister or his Department to remind health boards of their obligations.
Caroline Nokes
Con
Romsey and Southampton North
Congratulated the Health Secretary on championing ME sufferers and their families. Highlighted that women make up 83.5% of recent survey respondents among ME sufferers, five times more likely than men to suffer from it. Stressed the need for investment in research to find causes and effective treatments for ME, with a focus on women who are disproportionately affected.
Danny Kruger
Reform
East Wiltshire
Danny Kruger acknowledged the importance of leadership on this issue, raising concerns about the medical profession's understanding of ME. He asked for assurance that a delivery plan would include better training across various medical professionals to improve their skills in dealing with the condition.
Fleur Anderson
Lab
Putney
Ms Anderson highlighted the severe impact of ME on individuals, noting that at least 250,000 people suffer from ME in the UK, with many more undiagnosed. She criticised the lack of research funding and called for an end to stigma, full implementation of NICE guidelines, and urgent publication of the cross-Government ME delivery plan.
Helen Morgan
Lib Dem
North Shropshire
Helen Morgan pointed out that only 28% of NHS trusts are using NICE guidelines for ME, and she urged for consistency in treatment approaches to ensure patients receive the necessary care.
Jim Shannon
DUP
Strangford
Jim Shannon acknowledged his limited understanding of ME but recognised the pain and suffering experienced by those with the condition. He highlighted an article stating that over 55 million individuals worldwide are affected by ME, which has significantly increased due to its intersection with COVID-19. Shannon emphasised the importance of addressing gaps in understanding, treatment, and research for ME and called for better support from health and benefits departments for those suffering from ME and their families.
Hayes and Harlington
Mr McDonnell expressed concern about the lack of recognition for ME's impact on society, highlighting mental health consequences and the need for more research. He was shocked by the low figures in briefings regarding service availability despite NICE guidelines. Additionally, he raised worries about ongoing reforms to the benefits system and the lack of protection at work for those with ME. John Martin McDonnell suggested it would be helpful if the Minister could write to them about areas that require refinement before finalizing the delivery plan for ME services.
Margaret Hodge
Lab
Barking
Margaret Hodge highlighted the case of her constituent Sienna Wemyss, a 16-year-old diagnosed with ME who has not received an education, care and health plan. She stressed the need for better collaboration between health and education departments and local healthcare facilities to address such issues.
Government Response
Andrew Stephenson
Government Response
It is a pleasure to serve under your chairmanship, Dame Siobhain. I pay tribute to my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) for bringing forward such an important debate ahead of World ME Day on 12 May. As Health Secretary, he laid the foundations for our cross-Government delivery plan, and from the Back Benches he has been a tireless champion for people living with ME... Our consultation had a huge response, which is fantastic, as we wanted the broadest range of voices to inform how we shape the plan, but the responses have also shown just how complex the challenges are. Once we have published our response to the consultation in the spring, it is vital that we go back and work very closely with patient groups to finesse the final plan, which could take some time... Patients can receive the care they deserve only with timely and accurate diagnosis. Sadly, there is no specific test for ME, which can be challenging to diagnose as it shares some symptoms with other conditions... The new guidelines, while important by themselves, must come with a broader cultural shift across the NHS. That is why we have been working with NHS England to develop an e-learning course for health professionals, which they themselves have helped to develop, alongside charities and people living with ME... I want to end by saying a few words about the future. I strongly agree with my right hon. Friend the Member for Bromsgrove on the importance of research. As he knows, the Government are funding research into ME through the National Institute for Health and Care Research and the Medical Research Council... By improving understanding, investing in research and implementing our delivery plan, we will go further and faster in the years ahead.
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About Westminster Hall Debates
Westminster Hall debates are a chance for MPs to raise important issues affecting their constituents and get a response from a government minister. Unlike Prime Minister's Questions, these debates are more in-depth and collaborative. The MP who secured the debate speaks first, other MPs can contribute, and a minister responds with the government's position.