Myalgic Encephalomyelitis Debate
Full Debate: Read Full DebateFleur Anderson
Main Page: Fleur Anderson (Labour - Putney)Department Debates - View all Fleur Anderson's debates with the Department of Health and Social Care
(1 day, 12 hours ago)
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I will come later in my remarks to the training that is being rolled out as part of the delivery plan.
Myalgic encephalomyelitis—better known as ME—and chronic fatigue syndrome, which I will refer to from now on as ME/CFS, is a condition that affects an estimated 390,000 people in the UK. Its symptoms can be profoundly debilitating, impacting every aspect of daily life, from work and education to family and social life. For those with severe or very severe ME/CFS, even basic tasks such as sitting up, eating or speaking can become impossible. We recognise the devastating impact this condition has on individuals and families. For too long, people with ME/CFS have faced stigma, misunderstanding, disbelief and inconsistent care.
Fleur Anderson (Putney) (Lab)
The Minister is a passionate advocate for women’s health. Does she agree that the reason for this disease often being overlooked and for the stigma she has talked about is that women are five times more likely than men to get it? Will she support clear funding, accountability and deadlines within the welcome plan that has been delivered, and a service for very severe ME for all ICBs?
I recognise my hon. Friend’s points, and I will cover some of them in my remarks. She will be aware that the women’s health strategy is currently being refreshed, so we hope to dovetail wherever possible.
I want to set out the steps that this Government are taking to change the misunderstanding, stigma and inconsistent care that patients have experienced. Through our ME/CFS final delivery plan, we will deliver better care, boost research and ensure that every person living with ME/CFS is treated with dignity and compassion.
First, let us acknowledge the reality. ME/CFS is a complex multi-system condition. Its fluctuating nature makes diagnosis and management challenging. Historically, services have been extremely varied, and in some cases patients have felt dismissed or rejected by the healthcare system. That is unacceptable. We have heard those concerns loud and clear through our extensive consultation on the interim delivery plan and through ongoing engagement with patients, carers, clinicians, researchers and charities. Last year’s prevention of future deaths report following the tragic death of Maeve Boothby O’Neill further highlighted the urgent need for reform, pointing to a lack of specialist beds and inadequate training for clinicians. We cannot and will not allow such failings to continue.
In July, we published the ME/CFS final delivery plan, marking a significant milestone in our commitment to improving lives. The plan is built around three core themes: boosting research, improving attitudes and education, and enhancing care and support. With a clear commitment to ensure that people with ME/CFS can live as independently as possible and see their overall quality of life enhanced, that plan will help us to take an important step towards achieving that, but we acknowledge that there is more to do. We will continue to build on the foundation of those actions well beyond the publication of the plan. It is the springboard—the beginning, not the end.
Although the final delivery plan does not include every suggestion received through the consultation responses or through the task and finish group, it does not mean that those proposals will not be considered in the future, subject to resource and funding. We look forward to continuing those conversations.