World ME Day

Sajid Javid Excerpts

Wednesday 1st May 2024 Westminster Hall

[Sir Sajid Javid (Bromsgrove) (Con)]

I beg to move,

That this House has considered World ME Day.

It is a pleasure to serve under your chairmanship, Dame Siobhain, and I am extremely grateful to colleagues from across the House for their attendance.

There is no single universal experience of myalgic encephalomyelitis, otherwise known as ME. For those living with the condition, the distressing and familiar pattern can be all too clear: initial signs of fatigue, a drastic change in physical ability and activity, and the loss of mental focus and confidence.

The condition can begin after a battle with a viral infection, but for others the start of symptoms can simply seem unexplainable. Answers and hope are sought by visiting medical professionals, but too often ME patients are misdiagnosed or, at worst, dismissed entirely. Parents and carers who simply try their best can be chastised, as a once healthy person—a loved one—is slowly taken away by this cruel condition.

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. Today we are joined in person and online by many people who live with this condition, and I thank them for their continued strength.

When I was appointed Secretary of State for Health and Social Care, we were in the middle of fighting the pandemic. Of course, priorities and resources were naturally stretched, but the emergence of long covid saw renewed attention brought to ME. For me, the fight against that illness was not just an important policy area but simply very personal. My cousin, who is here today, has an amazing daughter who bravely battles this condition. Until the age of 13, she was a happy, healthy teenager. She was academically gifted and a talented netball player. Seven years later, today, her life has completely changed.

As Secretary of State, I set out my vision for a new approach to ME chronic fatigue syndrome in May 2022. I co-chaired a roundtable with the chief scientific adviser, Professor Lucy Chappell, to bring together experts, including people with lived experience, to discuss what needs to happen next. I also announced the Government’s intention to develop a cross-Government delivery plan for England. Two years later, although Ministers have understandably changed, I hope the determination that I had to tackle this condition remains in Government.

I was pleased to see the publication of an interim delivery plan by the Government in August last year. Supporting people with ME should be a cross-Government initiative. Although the work is rightly led by the Department of Health and Social Care, I was pleased to see that the plan was jointly published with the Department for Education and the Department for Work and Pensions.

[Dame Margaret Hodge (Barking) (Lab)]

I am very pleased to serve under your chairship, Dame Siobhain. I want to raise the issue of the involvement of multiple Departments, and it relates to my constituent Sienna Wemyss, who is 16 years old. Sienna was diagnosed in 2022, but she still has not got an education, care and health plan. She got a place at our local Barking and Dagenham College, but when she arrived there, despite her mother having spoken to the teachers, she was sent home because she could not attend. She finds it difficult even to comb her hair, so she is at home and has lost out on her education.

Does the right hon. Member agree that it is really important that not only health but education plays its role? While I am on my feet, I should say that Sienna has to travel as there are no local health facilities to respond to her needs and to care for her. She has to travel into University College Hospital—miles from my constituents in Barking. Does the right hon. Member further agree that there should be local healthcare facilities to respond to the needs of people with this condition?

[Sir Sajid Javid]

I thank the right hon. Member for her intervention, and I agree with her on both points. She first emphasises the importance of the Government’s final plan being a proper cross-Government plan; I hope the Minister will speak to the cross-Government nature of the work that he is leading on their behalf. I also agree with her point about local health support. That must also be addressed and covered in the final plan that is published. I have heard very similar stories from constituents and others, and I completely agree with what she said. I thank her again for that intervention.

When I committed the Government to developing a cross-Government delivery plan, I stated in a written statement to this House:

“officials will work with stakeholders ahead of publishing the delivery plan later this year.”

Despite the commitment that the delivery plan would be published by the end of 2022, it was not until August 2023 that an interim plan was published. In the ministerial foreword to that interim delivery plan, the Minister’s immediate predecessor—my hon. Friend the Member for Faversham and Mid Kent (Helen Whately)—stated:

“The final delivery plan will be published later this year”.

That was the end of last year. We are now in May 2024, approaching exactly two years since I made the initial commitment.

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. I ask the Minister, when he responds, to give a specific commitment to the House that the final delivery plan will be published before the summer recess—or at the very latest, just after.

[Danny Kruger (Devizes) (Con)]

I pay tribute to my right hon. Friend for the leadership that he has shown, and continues to show, on this issue. I have been contacted by Phoebe van Dyke, a young woman living in my constituency who is struggling with ME. She is concerned about the extent of the skills of the general medical profession: too many of the doctors she encounters do not understand enough about the condition. Can my right hon. Friend assure me that the delivery plan that he wants the Government to bring forward will ensure that there is much better training across the range of medical professionals, so that they have the skills to understand the condition?

[Sir Sajid Javid]

I assure my hon. Friend that that is definitely what I want to see in the plan; perhaps more important now, however, is to hear that commitment from the Minister. It is touched on in the interim plan, but we all want to see that issue, among the others, addressed in that final cross-Government plan.

The interim delivery plan set out some of the current challenges that we must address to improve outcomes and experiences for individuals with ME. We must ensure that the final delivery plan focuses at least on two key areas: outcomes and experiences. However, making progress in these areas also requires us to address more fundamental problems. For example, there is a huge cultural problem, when it comes to ME, with a lack of medical understanding and awareness. There is a critical lack of data and research, and there is still no existing cure or even treatments. It is estimated—this number is often cited; I use it myself—that about 250,000 people are living with ME in the UK, but even that figure is 10 years old, highlighting the lack of data and research in this field. Without a clear dataset and understanding, tackling the issue of course becomes an even bigger uphill battle.

That is why there are research projects such as DecodeME. They are vital because they help to increase understanding and they serve as a critical platform for future work.

[Helen Morgan (North Shropshire) (LD)]

Does the right hon. Gentleman agree with me that another issue faced by constituents is that the National Institute for Health and Care Excellence guidelines that were introduced are not being used by every single trust in the country? I think that only 28% of NHS trusts are using the NICE guidelines. Does he agree that consistency of treatment and approach would be an important step in ensuring that people can get the care that they need?

[Sir Sajid Javid]

Yes, I agree with the hon. Member. Indeed, those guidelines were changed while I was Secretary of State for Health and Social Care. I remember welcoming them, but the expectation of course was that they would be properly followed. As the hon. Member says, in some 70% of cases that does not seem to be the case. We all want that to be addressed. I hope that the Minister will be able to pick up that point when he responds.

Another example of research is a groundbreaking project on long covid and ME diagnostics called LOCOME. It is co-led by Action for ME, the University of Edinburgh and a computational biology company called PrecisionLife. It is hoped that that new project, which is utilising the data that has been gathered from the DecodeME project, will provide insights that will be able to create the first predictive diagnostic tools for ME and long covid. I take this opportunity to thank the charity Action for ME for its world-leading work on the project, its crucial support and the research and campaigning that it does to improve ME research and outcomes.

It is vital that we continue to support organisations such as Action for ME and researchers in this way. The focus of World ME Day in 2024, this year, will be to build a “Global Voice For ME”. In that spirit, it is important that we collaborate with allies across the globe to further research in this area. However, we know that, even with more research, it will be a long journey to achieve our desired outcomes. That is why improving the experiences of those living with ME, and their families, is also vital.

I know from my own engagement that individuals with lived experience often feel dismissed. I recall a recent Channel 4 report that even highlighted the case of a family who saw social services investigate the care of their daughter because they believed that she was being kept in bed against her will. If it were not for campaigning organisations such as Action for ME, the ME Association, the all-party parliamentary group on myalgic encephalomyelitis, Forward ME and the World ME Alliance as well as the work of incredible individuals such as Sean O’Neill, who I believe joins us today and who has led an inspiring campaign in memory of his daughter, Maeve, the situation would feel almost hopeless. That is how it would feel if we did not have these people battling for more work to be done on ME. It is because of them that the case of this community is being heard, and having served in Government for so long myself, I know that when people speak up with the support of many honourable colleagues from right across the House, the Government must listen.

This year, 2024, marks 55 years since the World Health Organisation officially acknowledged ME. For too long, we have failed to recognise the severity of the condition for thousands of people across the UK. As we mark World ME Day on 12 May, we must renew our commitment to improving outcomes and experiences for everyone affected. It is great to see so many hon. Members from across the House in the Chamber, and I am grateful to everyone who has attended today’s debate in the Public Gallery, as well as those who may be joining online. Where such support exists, there is always hope.

The ambition is to improve the lives of people with the condition today, and to ensure that future generations have a brighter future. Helping make that ambition a reality is now the responsibility of the Minister, and I look forward to his response and the contribution of other hon. Members.

[Dame Siobhain McDonagh (in the Chair)]

I remind Members that they should bob if they wish to be called in the debate.