Ashley Dalton
MP for West Lancashire · Labour · United Kingdom
“My right hon. Friend is being very generous; I thank him for giving way. It was my sombre privilege to work with him on this matter when I was a Minister in the Department of Health.”
“I recently visited the Liberty Centre in my constituency, a fantastic charitable organisation that supports individuals and families who have been affected by domestic abuse and violence. It told me that it could fill its refuge places three times over, but it does not have the resources.”
“It can be diagnosed after a primary diagnosis—primary breast cancer is potentially curable—or the first time that a person is diagnosed with breast cancer. That is called a de novo diagnosis. That is what secondary breast cancer is and, as we have heard, I have it, along with many, many other people.”
“There is also a myth that the treatment for your primary cancer was somehow wrong or had failed if you get metastatic breast cancer. Again, that is absolute nonsense. Breast cancer can still spread, even after successful treatment for a primary cancer, and even with the best treatments in the world.”
“As ever, it is an honour to serve under your chairmanship, Mr Betts. I first acknowledge the campaigners from Make 2nds Count, METUP UK and Breast Cancer Now and the fellow MBC patients who are joining us in the Public Gallery.”
“I do not say that to terrify people, but to say that it is absolutely imperative that they are aware of the signs and symptoms of secondary breast cancer in case they ever have them, no matter how long it has been since their primary diagnosis—or indeed, if they have ever had one.”
The complete record
Every one of 602 lines we hold for Ashley Dalton, in date order, each linked to its source. Free to read, in full, without an account. Page 4 of 13.
“I will talk briefly about our vision of genomics. We are going through a revolution in medical science that means we can transform the NHS over the coming decade from a service that diagnoses and treats ill health to one that can predict and prevent it. If we can harness the power of life sciences to the health service, we can achieve many of the aims my hon. Friends and others have set out today. Within a decade, every newborn will undergo whole genome sequencing, which assesses future risk of hundreds of diseases, including cardiovascular conditions. Every baby will have their DNA mapped, allowing people to receive tailored healthcare, long before symptoms begin. Those advances could one day put an end to blanket screening and rudimentary health MOTs.”
“I think “Stayin’ Alive” is a bit of a sharp one, really, isn’t it? Given that once “Pink Pony Club” is in my head I cannot get rid of it for weeks, I think I will probably opt for that one! My hon. Friend makes a really important point, which is that learning CPR and how to use a defibrillator properly is a crucial life skill. I am really pleased and proud that NHS England is continuing to roll that out in our schools and communities. NHS England is also keeping under review the specialist service specification for providing care to families, working closely with the Association for Inherited Cardiac Conditions, Cardiomyopathy UK, Heart Valve Voice and the British Heart Foundation. We are also working with the NHS genomics programme to align the service specification with genomics resources.”
“Member for South Holland and The Deepings and others that we remain committed to delivering on that promise. In the coming months, in the first half of next year, I confirm that we will publish the acquired brain injury action plan, a landmark step in delivering the joined-up approach that people with ABI deserve. I also confirm that when we publish it, that plan will draw on a wide range of evidence, including the evidence that was submitted in the 2022 call for evidence. The plan will set out clear priorities across health, social care, education, justice and beyond in a bid to move towards rehabilitation and long-term support being better embedded throughout public services. It will reflect continuing engagement with clinicians, charities and people with lived experience.”
“That report reveals the staggering £43 billion annual cost of ABI to our economy. It makes a compelling case for improved rehabilitation, cross-Government co-ordination and investment in specialist services. That work has helped to drive vital conversations across health, justice, education and beyond to ensure that people living with ABI are no longer overlooked. Recently, I was delighted to be able to attend and speak at the UKABIF annual ABI summit last month, where I met key stakeholders, including people with lived experience, for a panel discussion on the stage and at a separate meeting afterwards. I have taken away some important calls for action from those discussions. The Government have also listened to the calls of the all-party group and others for a dedicated plan. I reassure the right hon.”
“It is a pleasure to serve under your chairship, Dame Siobhain. I congratulate the right hon. Member for South Holland and The Deepings (Sir John Hayes) on securing this important debate on an issue that touches many thousands of lives across the country. I acknowledge and thank all hon. Members for the stories of their constituents that they have shared today. I begin by paying tribute to the right hon. Gentleman and the all-party parliamentary group for acquired brain injury for shining a light on what has too often been an invisible issue. Through its recent report, “Right to Rehab: The Cost of Acquired Brain Injury to the UK Economy”, the all-party group, ably supported by the UK Acquired Brain Injury Forum, has demonstrated both the human and the economic imperative for action.”
“There are some that I do not have immediate information about, but I will write after the debate to the shadow Minister, the hon. Member for Sleaford and North Hykeham (Dr Johnson), about her question on mechanical thrombectomy. By working together right across Government and making sure we have joined-up data and joined-up thinking, we will bring forward the action plan on ABI in the first half of 2026 to deliver the outcomes that people with ABI deserve and need.”
“Together with the ABI action plan, the 10-year health plan and the 10-year workforce plan will represent a step change in how we support people with ABI. The action plan will deliver a joined-up approach across health, social care, education, justice and beyond, ensuring that rehabilitation and long-term support are no longer fragmented. The 10-year health plan complements this by embedding personalised care planning, expanding community rehabilitation and harnessing digital innovation. These commitments will mean better access to timely, tailored services, improved continuity of care, and a focus on independence and quality of life. By working collaboratively across Government, the NHS and stakeholders will turn these plans into action and deliver the outcomes that people with ABI deserve. I have covered as many issues as possible.”
“There are ongoing discussions within the Department on how we might be able to improve the quality of, and access to, health data. I know that there is some great data out there, but too often access to it is too restricted. The Government will publish the 10-year workforce plan in spring 2026. This will set out action to create a workforce that is ready to deliver the transformed service set out in the 10-year health plan. My hon. Friend the Member for Blaydon and Consett (Liz Twist) mentioned mental health. NHS talking therapies have a specific pathway for people with long-term physical health conditions, including ABI, and all ICBs are expected to expand services locally by commissioning NHS talking therapies services integrated into physical healthcare pathways, including those for ABI.”
“The expansion of personal health budgets outlined in the health plan will give people greater flexibility, choice and control over their care. Our digital transformation commitments will make a real difference too. By improving data sharing between health, social care and rehabilitation services, we can ensure continuity of care and avoid delays. Digital care plans will allow patients and professionals to track progress and adjust goals in real time. Those innovations mean more personalised and co-ordinated care. I am really keen to explore better data collection and sharing between the NHS, patient groups, researchers and those with lived experience across my long-term conditions portfolio, which includes ABI.”
“That commitment reflects a shift towards person-centred care, helping people to regain skills, to return to work or education, and to live fulfilling lives after serious illness or injury. Through the 10-year health plan, we are introducing neighbourhood health centres and deploying multi- disciplinary teams to provide holistic support to people with conditions like ABI. We know that every ABI journey is different, and recovery depends on care that reflects individual needs, goals and circumstances. That is why the plan promises to expand personalised care approaches, giving people a say in their care. We commit, therefore, to providing 95% of people with complex needs with a personalised care plan by 2027. That means that people with ABI will benefit from structured and co-ordinated support that is tailored to their needs.”
“I am keen to pursue better data sharing on ABI across Departments and the NHS to ensure that our response is joined up and that it improves patient identification, care and support. Rehabilitation is a central focus of our 10-year health plan, which recognises that timely, high-quality rehabilitation reduces long-term disability, improves quality of life and saves significant costs for both health and social care. By embedding rehabilitation into integrated care pathways, expanding community-based services and investing in specialist multidisciplinary teams, the 10-year health plan will ensure that support is available when and where it is needed, including for people who have experienced ABI.”
“The APPG has consistently championed a statutory right to rehabilitation because it knows that too many people face fragmented services and missed opportunities, and as a result their health deteriorates once they are back in the community. What the final action plan will say on community rehabilitation will be worked through carefully with stakeholders and with NHS England to ensure that we get it right. We must ensure that our proposals are feasible and viable. However, at the absolute minimum, it will highlight the new NICE guidelines on rehabilitation, setting the expectation that the NHS should take these into account, as well as showcasing the best practice that already exists. Many hon. and right hon. Members raised data sharing.”
“That will mean that, although the report may be slightly delayed, it will have a comprehensive cross-Government approach to drive real change by improving rehabilitation, reducing inequalities and supporting people with ABI to live independent and fulfilling lives. I know that the all-party group, the right hon. Member for South Holland and The Deepings, my hon. Friend the Member for Hartlepool (Mr Brash), and the Lib Dem spokesperson, the hon. Member for Mid Sussex (Alison Bennett), all recognise that rehabilitation is the cornerstone of recovery and independence. Reports from the APPG and UKABIF have made it clear that timely, specialist rehabilitation can transform lives. Rehabilitation is what turns survival into quality of life, enabling people to return to work, education and their communities.”
“We want to take ABI stakeholders with us and to set the plan against the new health and social care landscape described in this summer’s 10-year health plan. In Manchester last month, I had the opportunity, as I said, to hear directly about potential solutions and opportunities from those at the coalface. ABI affects every facet of life, and creating a plan that truly delivers requires co-ordination across multiple Departments and extensive stakeholder engagement, as well as alignment with wider reforms and developments such as the 10-year health plan, neighbourhood health services, new NICE guidance on rehabilitation and NHS England’s recently refreshed service specification for adult neurology services.”
“Member for Bath (Wera Hobhouse), that the Government are committed to advancing research into ABI in sport. We recognise the significant impact of sports-related head injuries on long-term health outcomes. Through the National Institute for Health and Care Research, we are co-funding a major initiative, the UK traumatic brain injury platform. In addition, the Department for Culture, Media and Sport established the concussion in sport research forum, in which we are working alongside them. We recognise that developing the plan is taking slightly longer than we had originally wished, but I reassure right hon. and hon. Members that that is not because of a lack of commitment; it is because we want to get it right.”
“The Department also reached out to those working on transport, sport and defence, among others, asking them to commit to tangible actions in the ABI plan. I note the suggestion of my hon. Friend the Member for Bury North (Mr Frith)—he is no longer in his place—and we will give that consideration. The plan will build on already excellent work that is going on across Whitehall, helping to tackle the impacts of ABI directly or indirectly. That includes the Ministry of Justice’s update to its new neurodiversity action plan; working with the Department for Transport on its road safety strategy; the Department for Education’s planned consultation on an updated version of supporting pupils with medical conditions at school; and the Home Office-led work to tackle domestic abuse. I also confirm, as was raised by the hon.”
“I am just coming to that, so the right hon. Member’s intervention was very timely. As has been highlighted, the plan matters, because ABI is not just a health issue; it touches education, employment, justice, work, benefits, housing, homelessness and many other areas of life. Without co-ordinated action, too many people will continue to fall through the gaps. In the first instance, therefore, I have started conversations with ministerial colleagues who have responsibility for education at the DFE, for the criminal justice system at the MOJ, for housing and homelessness at the Ministry of Housing, Communities and Local Government, and for work and benefits at the Department for Work and Pensions.”
“This Government take our responsibility to that goal with the utmost seriousness, as the cross-Government approach to that mission demonstrates. Equally serious is the need to ensure that those living with COPD, especially from communities that have been overlooked, are supported to live healthier and longer lives.”
“The actions being taken as part of winter planning, and the other actions I have set out today on smoking cessation and pulmonary rehabilitation, directly relate to the NICE fundamentals of COPD care. I hope that the totality of that work reassures the hon. Members for Strangford and for Surrey Heath that we are committed to NICE’s fundamentals being delivered across the country. Too many people have had their lives cut short by COPD—people such as my cousin’s husband, Steve Ormerwood, who we lost to COPD far too young. His wife, Janet, his children, Adam and Joanne, his young granddaughter, Ada, and all our family feel his loss keenly. COPD is a lifelong condition, but it can and should be prevented.”
“The high cost of biologics means that a specialist approach by ICBs is needed, but we cannot pre-empt the findings of NICE, so we will wait to see the outcome of that. I want briefly to cover the points made on winter planning. The NHS chief executive wrote to the NHS in September following the testing of winter plans, and set out key areas for learning for providers and systems. It included the need for robust plans to maximise vaccination rates and proactively to manage rising risk to COPD patients during the winter, including the optimisation of care and remote monitoring, greater emphasis on self-management and education, and strengthening community support.”
“Lung cancer screening has been very positive, particularly for deprived communities, and is growing year on year. I visited a programme in the north-west recently and saw the amazing work that they were doing to identify early-stage lung disease. It is an opportunity for many more people to be recognised and treated for lung conditions who previously were not receiving support. Where emphysema is found, the screening programme refers people to their GP. GPs have established clinical pathways for supporting people with COPD. The hon. Member for Strangford is understandably interested in biologic therapies, which have also been mentioned by other Members. Biologic therapies for COPD will be commissioned by ICBs, should NICE approve them.”
“To address that, NHS England has published commissioning standards for pulmonary rehabilitation, setting out the benchmarks that high-quality services should aim for, while recognising that cardiac comorbidity is highly prevalent in patients attending pulmonary rehabilitation. In addition, the nine health systems across England have been awarded funding totalling £2.61 million through the pathway transformation fund to deliver innovative projects between October 2025 and March 2026, to drive system-wide transformation in asthma and COPD care. I confirm to the hon. Member for Strangford that reporting on the outcomes of the PTF projects will follow later in 2026. It is vital that all screening programmes are evidence-based. That is why the Government are guided by the independent scientific advice of the UK National Screening Committee.”
“The number of community diagnostic centres reporting spirometry testing capacity is growing and will continue to as more sites come online. So far this year, we have seen an increase in CDC spirometry testing of 2,000 tests a month—more than in the previous year. Preventing and diagnosing COPD are two key areas we are making improvements in, but we also want to ensure that people with COPD have healthier lives. As highlighted by the shadow Minister, pulmonary rehabilitation is a key intervention to improve the health of people with COPD and reduce pressure on NHS hospitals. As he knows, we inherited very low rates of people accessing this service, and I want briefly to set out the action we are taking to change that. We want to ensure equitable access to these services and reduce health inequalities.”
“As part of the strategy, we will expand the existing respiratory pathways transformation fund initiative by investing an additional £1 million this year, through the Oxfordshire health innovation network, to develop targeted, case-finding initiatives in former coalfield areas. That will help us to identify the individuals who need support to access appropriate local services. We will continue to capture learning in the men’s health strategy “one year on” report. The hon. Member for Strangford raised coverage of spirometry and the progress made to increase coverage of this diagnosis service in the community. I also assure the shadow Minister that we are shifting care from hospitals to the community, as it is one of the key pillars of the 10-year plan, and we are building on progress so far.”
“In March, we announced in the “Pathways to Work” Green Paper that we will establish a new guarantee of support for all disabled people and people with long-term health conditions claiming out-of-work benefits who want help to get into or return to work. That will be backed up by £1.9 billion of new funding by the end of the decade. Unemployment is worst in the most deprived areas of the country, and those areas have the worst health inequalities. COPD disproportionately affects people in deprived areas and we intend to address that. Yesterday, we announced the publication of our men’s health strategy, which includes our commitment to addressing entrenched health inequalities in ex-mining and industrial communities, where economic transition and occupational legacies have led to persistent respiratory and cardiovascular disease burdens.”
“In terms of housing and air quality, the Tobacco and Vapes Bill is the first step, but it is only part of the action that we are taking to improve air quality. We are working across Government with the Department for Environment, Food and Rural Affairs to tackle air pollution and with the Department for Energy Security and Net Zero to fix housing and reduce damp and mould, both of which can exacerbate COPD, as hon. Members have said today, and make life much harder for people than it needs to be. We are also working with the Department for Work and Pensions to support people with COPD to get back into and stay in work.”
“The focus of the JCVI-advised programme has therefore moved towards targeted vaccination of the two groups who continue to be at higher risk of serious disease, including mortality: the oldest adults and individuals who are immunosuppressed. In line with the JCVI advice, a covid-19 vaccination is being offered to adults aged 75 years and over, residents in care homes for older adults, and individuals aged six months and over who are immunosuppressed. I do not have to hand the data on uptake for the Liberal Democrat spokesperson, the hon. Member for North Shropshire (Helen Morgan), but the Government’s vaccine strategy is being rolled out and is focused on stabilising and increasing vaccine take-up. I will write to the hon. Lady with an update on the data following this debate.”
“As part of our health mission, we will shift the health system from treatment to prevention by tackling the social determinants of health. The public health allocations, including for smoking cessation, will be announced shortly. In terms of vaccines, the primary aim of the national covid-19 vaccination programme remains the prevention of serious illness, hospitalisations and deaths arising from covid-19. The independent Joint Committee on Vaccination and Immunisation has advised that population immunity to covid-19 has been significantly increasing due to a combination of naturally acquired immunity following recovery from infection and vaccine-derived immunity.”
“However, there will be more—those are just the first three. The criteria for determining future frameworks will be based on where there is potential for rapid and significant improvements in quality of care and productivity. I assure hon. Members that respiratory disease will be considered alongside many other things as we bring forward more modern service frameworks in the future. As has been said, smoking is the No. 1 preventable cause of COPD. The Tobacco and Vapes Bill will be the biggest public health intervention since Labour’s indoor smoking ban in 2007. The Bill also allows us to expand current indoor smoking restrictions to outdoor public places and workplaces. In England, we are considering extending smoke-free outdoor places to outside schools, children’s playgrounds and hospitals. Prevention will always be better than cure.”
“Our 10-year plan is built around the recognition that widespread change is needed to shift from treating COPD to preventing it, to ensure that those living with COPD receive care in the areas where they live and to embrace new technology to diagnose COPD earlier. I reassure the shadow Minister that the National Institute for Health and Care Research welcomes all proposals for research, and I encourage researchers to submit proposals on COPD and similar respiratory conditions for consideration. Before I speak about the actions we are taking through the plan and more broadly, I want to address the points about a modern service framework for respiratory disease. Frameworks for cardiovascular disease and severe mental illness and the first ever service framework for frailty and dementia will be developed first.”
“It is a pleasure, as always, to serve under your chairship, Mr Efford. I thank the hon. Member for Strangford (Jim Shannon) for securing this timely debate, as we mark World COPD Day. As hon. Members have clearly demonstrated in this debate, tackling COPD does not lend itself to one area of activity; that point was well made by my hon. Friend the Member for Blaydon and Consett (Liz Twist). COPD is known to affect 1.5 million people in the UK but, due to uncertainties, that number, as has been stated, could well be much higher. Improvements are needed across society and the healthcare system to reduce the incidence of COPD and help people living with the condition—people like my mum, Margaret—to lead healthier, longer lives.”
“We know that neurological conditions often come with emotional and behavioural challenges. That is why mental health support is being embedded into paediatric neurology pathways. Initiatives such as the national bundle of care for children and young people with epilepsy include psychological support as a core component. We are also expanding mental health support teams in schools and launching young futures hubs to provide integrated local support. This holistic approach recognises that physical and mental health are inseparable. For many families, the move from paediatric to adult services is a key time of uncertainty. We are addressing that through structured transition planning, as set out in the National Institute for Health and Care Excellence guidance and NHS England frameworks.”
“The 10-year health plan also sets out ambitious goals to transform mental health services across the country so that everyone living with a rare disease, along with their loved ones, can get the support they truly deserve. We know that timely access to care is critical, yet many families face delays of months. That is unacceptable. That is why we have committed to meeting the NHS constitutional standard of patients seen within 18 weeks by March 2029. For the elective reform plan and the neurology transformation programme, we are expanding diagnostic capacity, rolling out virtual consultations and opening more community diagnostic centres seven days a week. Those steps will cut waiting lists and ensure that children and families get the care they need when they need it.”
“Specialised paediatric neurosciences services provide access to life-changing procedures, such as epilepsy surgery and selective dorsal rhizotomy—that is a difficult word to say, Madam Deputy Speaker. The Government are committed to improving lives for those affected by rare diseases, which includes some serious neurological conditions, under the UK rare diseases framework. This includes better co-ordination of care and improving access to specialist care, treatment and drugs. We also hear that children and families impacted by these conditions can struggle to access mental health support, which is just not right. To address that, the NHS genomics education programme has published new resources on rare diseases for healthcare professionals to help them with sensitive conversations.”
“Through neighbourhood health centres, multidisciplinary teams—including paediatric neurologists, therapists, mental health professionals and social workers—will provide wraparound support that meets medical, emotional and practical needs. Digital tools will empower parents to manage appointments and access records as easily as they bank online. This is about creating a system that works for families, not against them. Through NHS England’s neurology transformation programme, we are creating pathways that wrap around families. The national bundle of care for children and young people with epilepsy sets clear standards for paediatric epilepsy care. For cerebral palsy, new commissioning frameworks ensure early intervention and co-ordinated services.”
“Whether congenital, acquired or progressive, these conditions often bring profound physical limitations, developmental delays and complex care needs. Families face relentless hospital visits, financial strain and the emotional toll of uncertainty, all while navigating fragmented health, education and social care systems. The Government recognise these challenges and are committed to improving access to care, reducing inequalities and providing holistic support through health, education and social care systems. Our 10-year health plan will transform care for children with serious neurological conditions by delivering integrated, community-based services that put families at the centre and by prioritising early identification and intervention, ensuring that children receive timely diagnoses and treatment to prevent complications.”
“Friend the Member for Newcastle-under-Lyme (Adam Jogee) highlighted the need for joined-up care and services. I am grateful for the opportunity to speak on a subject that touches on the lives of thousands of families across the country. There are hundreds of serious neuro- logical conditions that affect children, ranging from epilepsy and cerebral palsy to rare, genetic and degenerative disorders and acquired brain injury. I will speak on the common themes that unite people’s experiences: the need for timely diagnosis, integrated care and comprehensive support for every child and family, regardless of the specific condition they face. Living with a serious neurological condition is a life-altering reality for children and their families.”
“I congratulate my hon. Friend the Member for West Ham and Beckton (James Asser) on securing this important debate and acknowledge the journey of his constituent Shelina Begum and the work she has done on behalf of her daughter, Tafida Raqeeb, with the establishment of the Tafida Raqeeb Foundation and all the work it does. I thank my hon. Friend the Member for Bexleyheath and Crayford (Daniel Francis) for his contribution. His tireless work raising issues around supporting and caring for children with neurological issues is well known in this House. My hon. Friend the Member for Leeds South West and Morley (Mark Sewards) raised the issue of access to EHCPs—which are provided through local authorities—which continues to need work, and my hon.”
“We will ensure that no child or family feels abandoned, and that compassion and co-ordination define the care that they receive.”
“The Government provide support through a range of benefits, including disability living allowance, carer’s allowance, personal health budgets and local authority support, including respite care and equipment provision. Financial support is not just about money; it is about giving families the stability and security they need to focus on what matters most—their child’s wellbeing. Our commitment to children with serious neurological conditions reflects the core values of our society: compassion, fairness and the belief that every child deserves the chance to reach their full potential. By improving healthcare access and providing comprehensive support systems, we are building a more inclusive and resilient future for all.”
“We are moving towards earlier intervention, stronger inclusion in mainstream education, and better collaboration between health, education and social care. These changes will ensure that support is needs-led rather than diagnosis-driven, with clear accountability across integrated care boards and schools. By embedding mental health provision, improving workforce expertise and planning smooth transitions into adulthood care, we aim to deliver consistent, high-quality support that helps children to thrive and restores confidence in the system. Caring for a child with a serious neurological condition can place enormous financial strain on families. The welfare system is designed to provide a crucial lifeline, ensuring that no family is crushed by the additional, often substantial, costs associated with their child’s condition.”
“I am more than happy to do that. All too often, we have seen that the transition is a really difficult time, and as he points out, where services are perhaps not as joined up and cohesive for adults as they are for children, that is hugely jarring—a huge problem for families to navigate. We are committed to making sure that transition plans start early, involve families and ensure that continuity of care. Our goal is to make the process smooth and supportive, not stressful and fragmented. Health is only one part of the picture. Children with serious neurological conditions often have special educational needs and disabilities, and their success depends on a joined-up approach across sectors. That is why the SEND reforms that the Government are working on are so important.”
“It is a pleasure to serve under your chairship, Mr Mundell. I congratulate the hon. Member for Wells and Mendip Hills (Tessa Munt) on securing this debate, and pay tribute to her for her continued advocacy on behalf of people living with myalgic encephalomyelitis. Her work has ensured that the voices of those affected are heard at the highest levels of Government, and I am happy to accept her invitation to meet her and stakeholders, and the invitation from my hon. Friend the Member for Leigh and Atherton (Jo Platt), the chair of the APPG. I thank all hon. Members who have contributed today, and I particularly acknowledge all the constituents they have referred to. They all deserve the very best care from our NHS. I will endeavour to respond to as many of the issues raised as I possibly can.”
“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.”
“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.”
“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.”
“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.”
“Two of the most important actions in the plan are focused on NHS services. NHS England has already started its work on co-designing resources for systems to improve services for mild and moderate ME/CFS.”
“The final delivery plan also sets out actions to improve access to specialist services—to provide better support for children and young people, and their families, and to address employment challenges. It aligns with our 10-year health plan, which includes the roll-out of neighbourhood health services, bringing care closer to home and ensuring that multidisciplinary teams can support people with complex conditions such as ME/CFS. Provision varies across the country and we are determined to reduce those inequalities. The final delivery plan includes actions to improve service mapping and workforce training so that every patient, regardless of postcode, can access the care they need. NHS England is working closely with the Department to support ICBs in commissioning equitable evidence-based services.”
“New awards announced this year include funding for repurposed treatments and £845,000 for a large infrastructure project called PRIME, or, to give it its full name, Building Infrastructure for Patients, Researchers and Industry for ME/CFS. Together with the MRC, we are actively exploring next steps in ME/CFS research. For example, earlier this month we co-hosted the research showcase event for post-acute infection conditions, including ME/CFS. It brought together people with lived experience, researchers, clinicians and funders to help to stimulate further research in this field. We are now considering the discussions that took place at the showcase to explore the next steps to stimulate further research. The output of that event will be circulated as soon as possible.”