World ME Day

Carol Monaghan Excerpts

Wednesday 1st May 2024 Westminster Hall

[Carol Monaghan (Glasgow North West) (SNP)]

It is a pleasure to serve under your chairmanship, Dame Siobhain. I will start by declaring an interest as the chair of the all-party parliamentary group on myalgic encephalomyelitis. I thank the right hon. Member for Bromsgrove (Sir Sajid Javid) not just for bringing forward this debate, but for the work he has done. It is the second anniversary of the publication of a report produced by the APPG called “Rethinking ME”. As Health Secretary, the right hon. Gentleman came to its launch event here in Parliament, and that was very much appreciated by the ME community. More importantly, under his direction, the Department of Health and Social Care started engaging with the APPG in a way that had not happened previously, to learn about our findings and recommendations from the report.

Following that, the interim delivery plan for ME was announced and the consultation opened up for those with lived experience. The right hon. Gentleman’s hand was all over that work, which has really been transformational in getting the opinions of those who are actually living with ME on a day-to-day basis. The publication of the final plan, however, has been delayed several times, as we have heard already. I will press the Minister on this: we need to know when the final delivery plan will be produced. We do not want it to be after a general election, because another Government might mean different priorities. We need that plan now.

Another step that has taken the situation forward for those with ME was the publication of the new NICE guidelines in 2021. That replaced the previous guidelines, which had recommended graded exercise therapy as a treatment for ME—a treatment that many had undertaken, and many had had their symptoms made far worse as a result. It was good to see the publication of those guidelines, but there is still much more to be done. We heard from the hon. Member for Putney (Fleur Anderson) and the right hon. Member for Romsey and Southampton North (Caroline Nokes) how this condition impacts women far more than men, so there has to be a focus on women in research, treatment and diagnosis.

People with ME experience a lot of issues, such as a lack of understanding from healthcare professionals, as was highlighted by the right hon. Member for Hayes and Harlington (John McDonnell). That leads to delays in diagnosis and to inappropriate treatments. We are still hearing of people who have been forced through graded exercise—that is, the old NICE guidelines, not the new ones. Parents of children with ME find themselves subject to child protection investigations; that has to stop. Of course, many people face difficulties negotiating the welfare system, as was highlighted by the hon. Member for Strangford (Jim Shannon). According to Ann Innes, a welfare rights adviser with the ME Association,

“Repeated assessments are a huge drain on people with ME. They put them back considerably, in terms of their health”.

One of the areas of greatest concern is the treatment of those with severe ME. It is estimated that one in four people with ME has it severely, which means they are house-bound or bed-bound and need 24-hour care. Between 2017 and 2021, 62 deaths have been attributed to ME, and the tragic death of Maeve Boothby-O’Neill highlights the need for urgent action. Maeve was repeatedly hospitalised and discharged due to a lack of specialist services for ME patients. The absence of known treatments meant that her diagnosis sadly came too late. I pay tribute to her dad Sean O’Neill, who joins us this afternoon, for the work he has done.

Over the next couple of months, the APPG will be taking evidence from those affected by severe ME. I encourage Members present to join us for those sessions, where we will hear what we can do as parliamentarians and what we should be doing. If outcomes are to improve, increased funding for biomedical research is vital. I ask the Minister how much funding there will be, how it will be delivered and where we will see that. I know that I am out of time, but I will pay tribute quickly to a couple of people: the Countess of Mar from the other place, who has sadly had to retire, but she has done decades of work; Sonya Chowdhury from Action for ME, who joins us; Forward ME; the ME Association; and all those affected by ME and their families, who have done so much work to bring the issue to the attention of Members in this place.

--- Later in debate ---

[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.

[Carol Monaghan]

Given that we have heard that many health trusts are not implementing the new guidelines, can the Minister or his Department undertake to write to health boards to remind them that they are in place?

[Andrew Stephenson]

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.

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.

Question put and agreed to.

Resolved,

That this House has considered World ME Day.