World ME Day

John McDonnell Excerpts

Wednesday 1st May 2024 Westminster Hall

[John McDonnell (Hayes and Harlington) (Lab)]

I congratulate the right hon. Member for Bromsgrove (Sir Sajid Javid) not just on securing the debate, but on the groundbreaking work that he did in establishing the delivery plan. We are all grateful for that.

We all come to this debate with our own experiences. My first constituency case was nearly 30 years ago. I remember it well. It was heartbreaking: a young women who had a full-time job, was bringing up her family with two children and was active in her local community and trade union, went down with a condition that she never understood. It was not recognised for a long time, even by a local doctor. There was a lot of stigma attached to it at that time—I think a few members of the media were running stories like that. It took her years and a lot of support before she could come to terms with it and re-engage fully with her life.

Debates like this give us the opportunity to share those experiences, but they also prompt organisations to send us briefings. I congratulate Action for ME on the excellent briefing that it has circulated. It has brought us up to speed on a whole range of issues and focused us in advance. I want to respond in support of the half a dozen demands made by my hon. Friend the Member for Putney (Fleur Anderson). The first is about the recognition of the consequences and scale of ME in our society. One area that we have not explored enough is the mental health consequences of ME. In the cases that I have dealt with, ME has led people virtually to breakdown, because of the frustration of no longer being able to live an active life, as well as facing all the barriers and the stigma. We do not fully understand the range of consequences.

I fully agree with the point about research. Demand is doubling, at least. I was shocked that the figures in the briefing were so low after all this time and all the debates that we have had. Long covid has also brought a new dimension to the debate. I am receiving lots of representations from constituents about long covid; it is like we are going through the ME process all over again. I congratulate Action for ME. As the right hon. Member for Bromsgrove said, the establishment of the centre of excellence in Edinburgh is a huge breakthrough; it will be a world leader.

I thought that the NICE guidelines were being rolled out more effectively, so I was shocked that 76% of ICBs do not have a specialist service. We need to think about how that has gone wrong and what will put it right.

My hon. Friend the Member for Putney made a point about benefits. The Government are yet again reforming the benefit system, and I am worried about the reforms. I have met with a range of disability groups, and people are petrified. There is real fear out there, including among people with this particular condition. Anyone who has assisted a constituent through the appeal process understands how difficult it is to get it across that someone has a fluctuating condition, as was mentioned. I do not criticise clinicians, but there is still a lack of thorough understanding among some clinicians about the condition.

I want to make one further point, which has not been raised. I have come across case after case in which protection at work has not been in place, and people have lost their jobs, promotion, or access to training and so on. The reasonable adjustments that we thought we had built into the legislation have not been made. That needs to be reviewed going into the next period. There will be new employment legislation, certainly if there is a change of Government, and perhaps whether or not there is a change of Government. There are issues about the quality of employed life that have to be addressed, and this is one of them.

I am grateful for the debate, because I will be able to report back to constituents that Parliament has discussed the matter. I have the same confidence that the right hon. Member for Bromsgrove has: when a group of MPs works on a cross-party basis and makes noise like this, civil servants and Ministers listen. I hope that the Minister can report today particularly on the timing of the delivery plan, which will give us so much hope.

[Dame Siobhain McDonagh (in the Chair)]

I will call Jim Shannon next. If he would not mind, I ask him to voluntarily restrict his comments so that at 5.08 pm I can call the Opposition spokesperson for five minutes and the Minister for 10 minutes, because I think people want to hear what the Minister has to say.

--- Later in debate ---

[The Minister for Health and Secondary Care (Andrew Stephenson)]

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. 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 thank the right hon. Members for Barking (Dame Margaret Hodge) and for Hayes and Harlington (John McDonnell), my right hon. Friend the Member for Romsey and Southampton North (Caroline Nokes), my hon. Friend the Member for Devizes (Danny Kruger), the hon. Members for North Shropshire (Helen Morgan), for Putney (Fleur Anderson) and for Strangford (Jim Shannon), the SNP spokeswoman—the hon. Member for Glasgow North West (Carol Monaghan)—and the shadow Minister, the hon. Member for Denton and Reddish (Andrew Gwynne), for their thoughtful contributions. I particularly pay tribute to the SNP spokeswoman for the work she has done on the APPG, and to the shadow Minister for coming here today despite his own health challenges.

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.

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.

[John McDonnell]

It would be really helpful if the Minister could write to us about the areas that require the finessing for the eventual final plan.

[Andrew Stephenson]

I am happy to provide an update to Members. 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.

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.