Westminster Hall Debate: When will the Final Delivery Plan on ME/CFS be published?

Sir Sajid Javid hosted a Westminster Hall debate on ME/CFS yesterday. It was called to officially recognise World ME Day on 12 May, but the initial focus from Sir Javid was to raise concerns about when the Delivery Plan on ME/CFS would be published by the Department of Health and Social Care and when we might expext NICE Guideline recommendations to be implemented across the NHS and social care services…

The MPs who spoke at the debate were:

Sir Sajid Javid (Bromsgrove), Dame Margaret Hodge (Barking), Danny Kruger (Devizes), Helen Morgan (North Shropshire), Fleur Anderson (Putney), Caroline Nokes (Romsey and Southampton North), John McDonnell (Hayes and Harlington), Jim Shannon (Strangford), Carol Monaghan (Glasgow North West), Andrew Gwynne (Denton and Reddish). The Minister of State for Health and Social Care, Andrew Stephenson, gave the government's response.


The Government's Response

The Minister of State for Health and Social Care, Andrew Stephenson, Pendle, Conservative:

“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. I join him in welcoming his cousin to the House today. I also pay tribute to the ME Association, Action for ME, Forward ME and many other outstanding charities that do incredible work in this area…”

“I will do my best to address as many of the points raised as possible in the time allowed. To start, I will address one of the points made by the right hon. Member for Barking. This is very much a cross-Government piece of work. I will be working very closely particularly with the Department for Education, and others, to ensure that we get this right. It is correct that this is a Health lead, but it is right that it is a cross-Government piece of work.

“ME, or chronic fatigue syndrome, is a complex medical condition with a wide array of symptoms. Some people with ME struggle to do even the most basic things that we all take for granted, such as going to the office, seeing a GP, or even taking their children to football. This debate comes at a critical time, as new studies are beginning to pinpoint parts of the brain that affect the condition. A recent report has shown the yearly cost to the UK economy could be above £3 billion. While our understanding is improving, people with ME must receive the right care and support to manage their symptoms and, where possible, to be able to move on with their lives.

Sadly, as my right hon. Friend the Member for Bromsgrove (Sir Sajid Javid) has so eloquently set out today, there has been a real lack of awareness among some medical professionals and the wider public, as also highlighted by my hon. Friend the Member for Devizes and the right hon. Member for Hayes and Harlington. For so long, people 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.

The Delivery Plan on ME/CFS

“This is why our delivery plan is vital. As my right hon. Friend the Member for Bromsgrove knows, 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. That is why the Government published the interim delivery plan last August, proposing a set of actions on research and education, but also tackling those old attitudes and adapting the language we use to describe the condition. Since then, we have consulted on the interim delivery plan to understand where the plan is strong and where we need to go further. I would like to thank the more than 3,000 people and organisations right across the United Kingdom who took part.

“As we speak, officials are analysing thousands of responses and we will publish a summary shortly. These responses will be instrumental in developing the final cross-Government delivery plan, which will be published later this year. I completely understand my right hon. Friend’s frustrations, and he makes a powerful case for publishing the plan before the summer. While I cannot make that commitment at this time, I have assured him privately, and I will do so again today publicly, that I will do all in my power to ensure that the plan is published as soon as possible.

“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.

“As my right hon. Friend has said, people with ME have for too long been ignored and dismissed. That is why we want to take the time to properly understand the challenges they face and listen to the solutions they propose. It is so important that we get this right. I have heard my right hon. Friend, and I will continue to work hard with officials to come up with a plan that delivers for people with ME as soon as possible…

“I hope that when we provide the summary of the 3,000-plus responses, it will shine a real clear light on that, but I am more than happy to write to everyone who has engaged in today’s debate to provide an update, and perhaps to address any points that I am not able to in the time allowed.

The NICE Guideline on ME/CFS

“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, as set out by the shadow Minister.

“That is why in 2021 the National Institute for Health and Care Excellence published the new guidelines on the management of ME that several Members mentioned. That was a step forward in helping medical professionals understand the condition so that people could be diagnosed as soon as possible. It also set out best practice for healthcare professionals in the management of ME, and the care and support they should offer patients.

“I completely understand the frustration that was raised by the hon. Member for North Shropshire and others about the lack of implementation. At the moment, 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.

“That will be underpinned by e-learning from the Department on the development of new medical professionals and other initiatives that have been taken as part of the plan. I am keen for that to be looked at. I will now turn to medical training, but I will finally say that the NICE guidelines should be followed, and we are trying to understand why that has sadly not been the case in all too many trusts.

Medical Training

“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.

“The Medical Schools Council will promote the course to every medical school in the country, while encouraging schools to take students to meet patients who suffer from ME face to face to help bust some of the myths around the condition.


“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.

“As he kindly mentioned, those institutions came together to fund DecodeME, the world’s largest genome-wide association study of the condition, which was also mentioned by the hon. Member for Putney. We are backing the study with over £3 million to analyse the samples from 25,000 people in the search for genetic differences that may indicate an underlying cause for the increased risk of developing the condition.

“The study is already generating key insights. For example, while it has long been known that women are more susceptible to the condition, the DecodeME study has shown for the first time how their experience differs from that of men. I am happy to provide my right hon. Friend the Member for Romsey and Southampton North with the assurance that not only will we do everything to get the plan over the line as quickly as possible, but I will work with people such as the chief scientific adviser, Professor Lucy Chappell, to eradicate the gender bias in research.

“Genomics is already revolutionising the way we diagnose and treat a range of conditions, solving riddles for diseases that were mysteries just 10 years ago. By improving understanding, investing in research and implementing our delivery plan, we will go further and faster in the years ahead. I know there is much to do.

“I will end by paying tribute to my right hon. Friend the Member for Bromsgrove for everything he has done on the matter. I will continue to work with him and other hon. and right hon. Members to ensure we get this right.”

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