The Parliamentary Under-Secretary of State, Department of Health and Social Care (Baroness Merron) (Lab)
My Lords, I am most grateful to the noble Baroness, Lady Scott, for securing this important debate, which matters so much to so many, and for her clear introduction to these matters. I am also grateful to all the other noble Lords who spoke for their thoughtful and probing insights. The debate has certainly underlined the profound impact that myalgic encephalomyelitis—ME/CFS—has on those living with the condition, but also on their families, friends, carers and communities.
Noble Lords have spoken very movingly about the reality, and I am grateful for the welcomes across the House for a number of government actions. I recognise what noble Lords have described, which is—to pick up a few points—a lack of awareness, variability in services, the stigma faced by those with ME/CFS and the need to go further. We recognise all of that.
The fact is that the system has not worked as it should for people. But that is why, early on, the Government prioritised publication of our final delivery plan on ME/CFS, which we published in July last year. I assure noble Lords that we work closely with those most impacted by the effects of this debilitating condition, including those with lived experience. I add my thanks to charities and campaigners for their work, because they have given voice to this subject. We want to ensure that patients are truly heard by a system that can respond to those voices, because historically that has not been the case. So the plan sets out a clear direction for improvement, and it focuses on three key ambitions: boosting research, improving understanding and education, and strengthening the care and support people receive.
The noble Baroness, Lady Scott, and the noble Lord, Lord Evans, raised a number of questions about funding timelines and accountability. I confirm that the department has overall responsibility for progress against the final delivery plan, and officials are actively tracking progress. It is very much worth noticing that three-quarters of the plan’s actions have been completed or commenced or are currently ongoing. I say to the noble Lord, Lord Evans, that an update on the delivery of the final delivery plan will be communicated next month.
We know, as has been spoken about, that a lack of research has meant that those with ME/CFS have been left feeling undervalued, frustrated and overlooked. That is why the final delivery plan commits to stimulating research, including through new funding opportunities, better support for researchers and building capacity and research. We have gone beyond the actions in the final delivery plan, as all noble Lords were good enough to reference, by investing £4.75 million in SequenceME, which will create the first high-resolution genetic map for ME/CFS. I believe that this will offer new hope to patients and pave the way for better diagnostics and future treatment, which, after all, is what we need.
All noble Lords asked for further commitments. To the points I have just made, I add that the Government are investing in turbocharging clinical trials research. Key to this is enabling new treatments to get to patients faster; and the NIHR has funded projects to explore the feasibility of a clinical trial for treatments for ME/CFS and other post-acute infection conditions, as noble Lords have asked for. Of course, funding and support is available for researchers, and the Medical Research Council and the NIHR welcome funding applications for research into ME/CFS and other post-acute infection conditions. Addressing gaps in knowledge and awareness around this condition is also crucial, because people who live with ME/CFS have to be seen and feel seen. They need to be reassured, and they need evidence that they are going to be taken seriously. I am therefore glad to say that NHS England has developed an e-learning programme, which consists of four modules and seeks to improve the understanding of healthcare professionals, and to support them to provide the right care at the right time for those who need it, including those with severe ME/CFS.
Experiences of care vary widely—that should not be inevitable, but we recognise that they do—but I believe that those with ME/CFS deserve a high standard of care, no matter who they are or where they are. We will seek to improve that through the development of a new template service specification for mild and moderate ME/CFS, and that will expand to include the severe nature of the condition. The template will focus minds and demonstrate to integrated care boards the ways in which NICE guidelines can be implemented. Key here too is that it will provide good practice examples for ICBs, so they can model their own services on where it is being successful.
There is, as I said at the beginning, much more to be done. We are working at pace to implement this final delivery plan, and we will work continually with stakeholders to make sure that it meets the mark. The noble Baroness, Lady Scott, and the noble Lord, Lord McCrea, asked about interim support. We are not just committed to considering a specialised service for those with a very serious version of the condition; we are also exploring what preparatory work can be taken forward ahead of April next year. We want to progress the work at pace once the transformation in respect of NHS England has been concluded. In the meantime, we are considering a range of potential interim measures to support those with severe ME/CFS, including further promotion of the e-learning modules that I referred to, making sure they span very severe and severe ME/CFS, alongside the recommendations that have been presented to government directly by patient groups.
The noble Baroness, Lady Scott, asked about setting up an expert advisory panel. We do not currently have plans for such a panel for those with severe ME/CFS, but I assure the noble Baroness that we engage very closely with experts from NHS England, clinicians and experts in the charity sector so that we can develop a much broader approach to supporting patients with ME/CFS.
In response to the question about exploring whether a specialised service should be commissioned for very severe ME/CFS, any decision on whether this committee would be convened remains at the discretion of the Secretary of State. I say to the noble Lord, Lord Evans, that we recognise that ME is more likely to affect women and that early results in the DecodeME study have found that women with ME/CFS tend to have more symptoms and co-occurring conditions than men. That will be taken into account. Again, I am most grateful to the noble Baroness, Lady Scott, for her work and advocacy in this area.
Baroness Walmsley (LD)
Before the Minister sits down, I asked what support is being given to those services that are unable to fulfil the NICE guidelines, and about the Government’s attitude to including reasonable adjustments in the information on the single patient record.
Baroness Merron (Lab)
I would be pleased to take those two points away and look at them, particularly the second, which is a very practical suggestion. I am grateful to the noble Baroness, as ever, and I will gladly write to her.