Baroness Walmsley (LD)

My Lords, I congratulate my noble friend Lady Scott of Needham Market on her very moving speech. She comprehensively covered the major issues that are before patients with ME. The prevention of future deaths report into the death of Maeve Boothby-O’Neill emphasised that there is no known cure into myalgic encephalomyelitis—not only no cure but no known cause, no known reason why some are susceptible to developing ME and no known reason why one in four sufferers develop severe problems. It was clear that despite three periods in hospital, the NHS was unable to reverse Maeve’s malnutrition and sadly she died. One might think that apart from lots more research into causes, prevention, diagnosis and effective treatment, there is nothing that can be done to care for sufferers appropriately. But there is. I note that in a recent survey by Action for ME, just 10.8% of respondents with severe or very severe ME said they felt supported by the NHS. I began to wonder what “good” looks like, so I looked at the NICE guidelines and there it was. But I recently heard from a carer of a patient with severe ME. She said: “There is almost no help available on the NHS for patients of this severity. We waited six months for an NHS specialist appointment. The consultation lasted 10 minutes over the phone. The consultant, whose primary speciality was diabetes, reviewed blood tests, said they were normal and suggested my partner take a multivitamin. The clinic was disbanded the following day due to the consultant’s retirement, with no handover to an alternative service. Our experience with primary care has been equally concerning. Most GPs we have encountered have little understanding of severe ME, how profoundly disabling it can be or best practice for care. To give one example, a GP recently suggested to me that my partner try ‘talking therapies’ when he was unable to tolerate sound”. My first question to the Minister is therefore: do the Government know how many ME services are implementing the NICE guidelines? If not, what is being done to find out? What is being done to support those that are not implementing the NICE guidance to do so? Obviously, we need to take several steps back from the quality of care to find out how this disease develops. Clearly, the Government should commit to accelerating biomedical research into ME, including the severe and very severe conditions. This should include targeted funding for diagnostics, biomarkers, treatment development, clinical trials and other post-infectious disease research, as my noble friend demanded. But there are also off-label, low-risk interventions, including cannabis-based medicines, which patients may be willing to try but cannot access on the NHS. As we have just heard, ME remains significantly underresearched relative to its prevalence. Severe sufferers often cannot work from an early age. Those who are bed-bound require constant care at home, which also limits the economic activity of their carers. Improving economic evidence is important as it encourages grant-making decisions. Better cost of illness data would help demonstrate the wider social and economic impact of ME, including costs to the NHS, social care, the welfare system, families and carers, and the wider economy. State-funded research into this would pump-prime investment by charities, academics and pharmaceutical companies. It sends a message that ME matters. The condition is increasingly being understood within the broader field of post-infectious conditions such as long Covid, but we must avoid the danger of the two conditions being confused. However, I welcome the announcement of a £1.4 million NICE research programme to explore the cost effectiveness of existing healthcare for ME and long Covid to improve the quality of care. Major UK research studies, including DecodeME, LOCOME and Sequence ME & Long Covid, are helping to build momentum. As my noble friend said, there is now an opportunity for the Government to position the UK as a leader in post-infectious disease research, with ME right at the heart of it. Is there a coherent plan for a broad range of research to cover all aspects of ME, or is it a bit here and a bit there? Are we lagging behind other countries and losing an important economic opportunity? We will also need targeted support to translate biomedical science into commercially viable diagnostics and treatments. In this context, a recent report from your Lordships’ Science and Technology Committee into the need for more support for science-based companies trying to scale up is certainly worth a read. It is called Bleeding to Death: the Science and Technology Growth Emergency. In other situations, there has been successful repurposing of pharmaceutical interventions developed for other diseases. Dexamethasone was an example during the Covid pandemic, and it certainly saved lives. There is a new funding opportunity for an NIHR award focused on evaluating repurposed pharmaceutical interventions. I wonder whether these grants might be applied to treat post-acute infection syndromes and associated conditions, including ME. Can the Minister say whether there has been any progress on this? We have a once-in-a-lifetime opportunity to do something for ME patients now. The sensory overload suffered by some sufferers means that they must restrict their stimulus by lying in a quiet, dark room, and their care needs to be physically gentle. This means that the environment in which care is delivered is as critical to their health outcomes as the treatment itself. The current definition of patient information in the NHS modernisation Bill risks creating a significant safety blind spot. While the single patient record is welcome and designed to consolidate a patient’s medical history, current guidance omits the contextual clinical data providing accommodations to make services accessible to all patients. Without formal, recorded and transferable data on reasonable accommodations, these patients face preventable harm, wasted clinical resources—when no sensory adjustments mean that appointments fail—and having to re-advocate for their safety needs at every new touchpoint. By amending the definition of patient information to include reasonable accommodations, we could ensure that the SPR acts as a true safety net, not just for ME patients but for those with learning or communication difficulties. Including this provision does not merely add data; it formalises the duty of care, ensures clinical safety and embeds equity into the very architecture of the future NHS digital infrastructure. Will the Government accept an amendment to correct this omission?