Myalgic Encephalomyelitis Debate
Full Debate: Read Full DebateDepartment: Department of Health and Social Care
Mark Sewards
Main Page: Mark Sewards (Labour - Leeds South West and Morley)Department Debates - View all Mark Sewards's debates with the Department of Health and Social Care
(1 day, 5 hours ago)
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Tessa Munt
I absolutely agree, and I thank the hon. Gentleman. The second area where I would urge the Government to go further is support for people with severe and very severe ME. It is estimated that around one in four people with ME are severely affected. ME is perhaps the only condition where the sicker someone becomes, the less care they receive from the NHS. The recent prevention of future deaths report focused on the tragic case of Maeve Boothby O’Neill, describing NHS care for severe ME as “non-existent”.
In my work on this issue, I have collaborated closely with #ThereForME, a campaign founded by two women, Karen and Emma, who are carers to partners with very severe ME. It can be difficult to comprehend the depth of suffering that ME can bring in its most extreme forms. With his permission, Karen has shared details with me about of her husband James’s day-to-day life.
Before developing ME, James, in his 30s, lived a full life and was a civil servant. Today he is completely bed-bound and spends 99% of his day alone in a dark room, unable to tolerate any noise, light or stimulation. He is hardly able to communicate and is so sensitive to touch that, despite his suffering, his wife Karen is unable to give him a hug or hold his hand. Despite an acute level of need, James is receiving next to no care from the NHS. Karen tells me that her biggest fear is that he deteriorates to the point of needing lifesaving care. She cannot feel confident that the NHS will provide it.
Mark Sewards (Leeds South West and Morley) (Lab)
The hon. Member is making an incredibly powerful speech. One of my constituents, an NHS nurse, suffers with ME. He cannot play with his children, walk his dog or undertake basic activities. When he went to the NHS, he got a referral, but was told that it would be nine months before he got an appointment, which forced him to consider private options. An NHS nurse is having to use private healthcare to get results—this situation is untenable, is it not?
Tessa Munt
It is not only untenable, but completely absurd. In September 2024, on World Patient Safety Day, over 200 healthcare workers were so concerned about NHS care for ME, and particularly care for severe and very severe ME, that they wrote a letter to the Health Secretary calling for immediate action to save lives. That letter was sent 14 months ago. I am sorry to say that very little has changed since, and they did not receive a response.