World ME Day

Debate between Sajid Javid and Helen Morgan

Wednesday 1st May 2024 Westminster Hall

[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.

Oral Answers to Questions

Debate between Sajid Javid and Helen Morgan

Tuesday 19th April 2022 Commons Chamber

[Sajid Javid]

I know that my hon. Friend knows Helen Harrison extremely well, but he is right to talk about the importance of the NHS and the adult social care sector and local authorities working together. We must make sure that it is a true partnership, where one does not overwhelm the other and they work together towards their shared interests.

[Helen Morgan (North Shropshire) (LD)]

One key cause of the urgent care crisis in Shropshire, in the Shrewsbury and Telford Hospital NHS Trust, is the inability to discharge patients who are medically fit to go home into social care in the community. Shropshire Council’s resource challenges in that area are well known. Will the Secretary of State commit to putting extra resource into social care in Shropshire so that the medically fit can be discharged into the community when they are ready?

[Sajid Javid]

The hon. Lady is absolutely right to raise this issue, and the whole House heard just before the recess the results of the independent work done by Donna Ockenden. The hon. Lady is right to talk about that and the pressure that has been faced locally. I understand that she has already reached out to my hon. Friend the Minister for Health and that he will be meeting her to discuss just that.

Ockenden Report

Debate between Sajid Javid and Helen Morgan

Wednesday 30th March 2022 Commons Chamber

[Sajid Javid]

I very much agree. I want to acknowledge that the report ultimately took place because of my right hon. Friend’s decision to ask Donna Ockenden to do the independent review, but he is absolutely right that he, in turn, did so because of the bravery of Rhiannon Davies and Richard Stanton, of Kayleigh and Colin Griffiths and of the many other families who came to see him.

My right hon. Friend asked about the immediate and essential actions. The interim report sets out seven such actions; the trust has implemented them all, and across the NHS they are either fully or partially implemented. The final report also recommends such actions; their implementation has already begun. Of course, we have just received the report, but I have asked for a timetable of when it will all be done. I want to see it done as quickly as possible.

My right hon. Friend’s point about workforce is very important. I hope he welcomes the fact that, for the first time, the NHS has been asked to set out a 15-year workforce plan.

[Helen Morgan (North Shropshire) (LD)]

I join colleagues across the House in thanking all the families who have bravely come forward to share their experiences, particularly Kayleigh, Colin, Rhiannon and Richard, whose persistence has led to the review. I hope that women and babies in Shropshire, Telford and the Wrekin and across the UK will be safer in future as a result of their bravery.

I thank Donna Ockenden and her team for their thoroughness in reviewing so many tragic cases. I am sure that the Secretary of State agrees that this can never be allowed to happen again and that the deaths of these 201 babies must not be in vain. This must be a turning point for maternity services in England.

Donna Ockenden has endorsed the findings of the Health and Social Care Committee and recommended that an immediate investment of £200 million to £350 million per annum is required to keep women safe. I welcome the Secretary of State’s guarantees that the immediate and essential actions will be implemented, but may I ask whether he can commit the additional resources recommended by Donna Ockenden today?

[Sajid Javid]

I thank the hon. Lady for her comments. I assure her that constituents throughout Shropshire, Telford and the Wrekin, and indeed families across England, will be safer as a result of those brave families coming forward and this report.

On resources, the hon. Lady will have heard me talk about the £95 million given at the time of the interim report, plus the £127 million given for maternity services in the past few days. We will keep that under review.

Oral Answers to Questions

Debate between Sajid Javid and Helen Morgan

Tuesday 1st March 2022 Commons Chamber

[Sajid Javid]

I absolutely agree with my right hon. Friend. Let me take this opportunity once again to thank everyone who has been working in the NHS, especially for all that they have done during the pandemic. We are continuing to invest in the workforce through our 50,000-person expansion in the nurse programme, and we already have 44,000 more full-time employees in healthcare settings than we had this time last year, including 4,600 more doctors and 11,100 more nurses.

[Helen Morgan (North Shropshire) (LD)]

The lack of capacity in accident and emergency departments and other healthcare services is a major contributor to the ongoing ambulance waiting time crisis in my constituency. Will the Secretary of State meet me and representatives of the West Midlands ambulance service—as I have repeatedly asked him to do—to help to resolve the crisis?

[Sajid Javid]

The hon. Lady is right to raise this matter. As she will know, owing to the pressures of the pandemic we have seen significant challenges for ambulance services throughout the country. Just a few days ago I met the head of the West Midlands ambulance service to discuss some of the issues, and also how the extra funding that we provided over the winter—some £55 million of support for ambulance services—is helping.