Westminster Hall debate on ME – 1st May 2024

Westminster Hall debates are held not in the chamber of the House of Commons but elsewhere in the Palace of Westminster and provide the opportunity to debate any issue, ranging from major constitutional questions to areas of particular interest to MPs and their constituents, outside the Parliamentary calendar set by the Government. There is no division to vote on the matter, there is no tabling of amendments and the motion is not binding on the government. Westminster Hall debates do allow MPs to raise issues, receive answers from the relevant government department, and can be key to facilitating good political discourse in Parliament as well as gauging likely supporters and areas of common concern.

It is within this context that Sir Sajid Javid secured a debate on 1st May on the topic “That this House has considered World ME Day.” It was a forum for MPs to bring to the meeting the experiences of their constituents and to press for progress. Ten spoke in the hour long debate with a response being forthcoming from The Minister for Health and Secondary Care (Andrew Stephenson)

Introducing the topic, the former Secretary of State for Health and Social Care and impetus behind the Delivery Plan process, reminded MPs that he had a personal connection to the disease as his cousin, “Until the age of 13 … was a happy, healthy teenager. She was academically gifted and a talented netball player. Seven years later, today, her life has completely changed.” Sir Sajid continued

As a country, we have made tremendous progress in combatting so many diseases and illnesses. There has been a welcome step change in medical advancement and attitudes, but people with ME have not seen that progress—in fact, I would argue that they have been left behind. This debate provides an opportunity to share the experiences of people living with the condition ahead of World ME Day on 12 May and for us to consider what more can be done to improve experiences and outcomes for people across the United Kingdom.

Hansard 1st May 2024, Volume 749 Column 160WH

He then narrated his involvement in instigating the Delivery Plan process with meetings with interested parties, research bodies, and the cross-Departmental nature of the endeavour and, interestingly, commented on the delay in finalising the Delivery Plan – “I am also now hearing disturbing reports that, despite two years of waiting, the final delivery plan may not be published until the end of this year. Everyone knows that the Prime Minister has committed the country to a general election by the end of this year. We also know that when that general election is called, there will be no Government publication of any sort, which means there is absolutely no time to waste.”

As is the nature of the event, MPs helped illustrate the challenges faced by people with ME. Dame Margaret Hodge MP, for example, drew MPs attention to barriers to education and healthcare provision faced by a 16 year old constituent who “… was diagnosed in 2022, but she still has not got an education, care and health plan.” Helen Morgan MP continued stating that it is estimated that less than 28% of NHS trusts are actually using the 2021 NICE guideline on ME/CFS.

Certain charities were thanked for their work with decodeME and LOCOME referenced but as Fleur Anderson MP said

Over the last 10 years, only £8.05 million has been spent on ME research. If that had been equitable to other illnesses, ME would have received over £10 million or more. Without urgent research, those estimated 250,000 people in the UK living with the illness—and many more—will continue to feel unseen and left behind. That inaction comes at a significant cost. Without research, people living with ME will continue to suffer from a range of debilitating symptoms that push them towards the edge of society. The links with long covid offer hope for research, and should be entirely embraced.

On prevalence, Ms Anderson also mentioned that the figure of 250,000 was now at least a decade old and trailled that “… 1.3 million people live with ME or ME-like symptoms..” and observed that “Women are five times more likely to develop ME, and to have more symptoms from their ME, than men. I think that might be at the heart of why it has been such an underfunded and neglected disease, because it is predominantly women who are suffering more than men.” The point on unequal prevalence was expanded by Caroline Nokes MP who called for action concerning “…the bias that exists in medical research and clinical trials. We have to stop the situation, which prevails to this day, where too often conditions suffered by women are portrayed as them being simply hysterical.”

In response to all the points raised the Minister acknowledged the lack of awareness among some medical professionals and the wider public and

For so long, people [with ME] were dismissed, ignored or even told their symptoms were all in their head. However, as anyone who lives with ME knows, it is so much more than just feeling very tired; for a quarter of sufferers with severe symptoms, it is truly debilitating ….. This is why our delivery plan is vital. …… it has two core principles at its heart. First, we must know more about ME if we are able to improve outcomes. Secondly, we must trust and listen to people with ME to improve their experience.

He reported that with over 3000 responses the work to analyse continued 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.”

He further assured MPs concerned about implementation of the NICE guideline that “…. we and NHS England are working hard to understand the barriers to the full implementation of the guidelines. They should have been fully implemented but we acknowledge that they have not. It is so important that we get this plan over the line because the final delivery plan will, without doubt, underline the need to follow NICE guidelines.”

Overall, the debate narrated little new but did confirm that publication of a finalised Delivery Plan is not going to happen soon.

The full debate is available to watch on from 16.30.

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