UK House of Lords/ House of Commons Questions

Alison Bennett Liberal Democrat Spokesperson (Care and Carers)
To ask the Secretary of State for Health and Social Care, with reference to Coroner Deborah Archer's report entitled Maeve Boothby O’Neill: Prevention of Future Deaths Report, reference 2024-0530, dated 7 October 2024, what steps he has taken to ensure that the (a) care for patients and (b) training available for (i) GPs, (ii) hospital doctors and (ii) other health workers on treating patients with myalgic encephalomyelitis and chronic fatigue syndrome is adequate.

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• Hansard source(Citation: HC Deb, 30 January 2025, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
We are committed to improving care and support for people with myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). We recognise how devastating the symptoms can be, and the significant impact they can have on patients and their families.

The Department has reconvened the ME/CFS Task and Finish Group, including senior Department and cross-Government officials, ME/CFS specialists and representatives from NHS England, the National Institute for Health and Care Excellence, the devolved administrations, and ME/CFS charities and organisations. With stakeholder engagement via the ME/CFS Task and Finish Group, we are developing the final delivery plan for ME/CFS, which we aim to publish by the end of March. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

The Department is also working with NHS England to develop an e-learning programme on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. Sessions one and two of the e-learning programme are now available. The third session will become available later in 2025.

The Medical Schools Council will promote the NHS England e-learning programme on ME/CFS to all United Kingdom medical schools, and encourage those medical schools to provide undergraduates with direct patient experience of ME/CFS. The General Medical Council (GMC) is the regulator of medical schools, and it is important that education is reenforced at different stages of medical training. Royal colleges play an important role in this. The GMC has included ME/CFS in the content map for the new national exam, so all medical schools will need to teach it as a subject.

NHS England is currently undertaking a stocktake, commissioned in September 2024 and due at the end of January 2025, that will provide a more accurate, in-depth overview of the position of post-COVID-19 services across England. The scope of this commission has been extended to include ME/CFS services.

 

Martin Wrigley Liberal Democrat, Newton Abbot
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help support people with ME in Devon.

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• Hansard source(Citation: HC Deb, 31 January 2025, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
Integrated care boards are responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services that meet the needs of their population, including in Devon, subject to local prioritisation and funding.

NHS England colleagues in the south west of England have engaged with the Royal Devon University Healthcare NHS Foundation Trust, which is in the process of developing formal pathways for acute admission and emergency admission for patients with ME/CFS.

 

Steve Darling Liberal Democrat Spokesperson (Work and Pensions)
To ask the Secretary of State for Work and Pensions, what recent estimate she has made of the cost to the economy of economic inactivity due to myalgic encephalomyelitis.

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• Hansard source(Citation: HC Deb, 4 February 2025, cW)

Alison McGovern The Minister of State, Department for Work and Pensions
The Department has not made an estimate of the cost to the economy of economic inactivity due to myalgic encephalomyelitis.

The Department is committed to supporting disabled people and people with health conditions, including myalgic encephalomyelitis, with their employment journey.

As part of our Get Britain Working plan, more disabled people and people with health conditions will be supported to enter and stay in work. We will devolve power to local areas to shape a joined-up work, health, and skills offer meeting the needs of the people they serve.

 

A nonentity of an answer that embodies the governments willfull ignorance over the realities of living with ME. The state supported me in my employment journey so well I went from fairly functional and mild to bedbound. Now this is all they can muster? Disgusting.

 

That response is so inhuman she might as well be a bot. I’m not sure why questions always seem to be worded in a way that permits skirting over, oblivious responses? Are there some rules that questions must not use emotive language or specifics, because they’re so bland and short and then Achieve little. Eg if it had been - "Research has indicated that ME/CFS costs the UK economy at least £3b per year, with £1m per year spent on research. Will government increase the level of research investment to make it is commensurate with the human and economic burdens?" We might have got somewhere.i know they are talking specifically about economic activity vs care costs etc…

 

Jo Platt Labour/Co-operative, Leigh and Atherton
To ask the Secretary of State for Work and Pensions, what steps she is taking to support people with (a) Long Covid and (b) ME back into the workplace.

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• Hansard source(Citation: HC Deb, 17 February 2025, cW)

Alison McGovern The Minister of State, Department for Work and Pensions
Backed by £240m investment, the Get Britain Working White Paper launched on 26 November will drive forward approaches to tackling economic inactivity and work toward the long-term ambition of an 80% employment rate.

We are committed to reforming the system of health and disability benefits so that it promotes and enables employment among as many people as possible. The system must also support disabled people to live independently. It is also vital to ensure that the system is financially sustainable in the long term. We are working to develop proposals for reform in the months ahead and will set them out in a Green Paper ahead of the Spring Statement later this year.

Appropriate work is generally good for health and wellbeing, so we want everyone to get work and get on in work, whoever they are and wherever they live.

Disabled people and people with health conditions, including those with Long Covid and/or ME, are a diverse group so access to the right work and health support, in the right place, at the right time, is key. We therefore have a range of specialist initiatives to support individuals to stay in work and get back into work, including those that join up employment and health systems.

Measures include support from Work Coaches and Disability Employment Advisers in Jobcentres and Access to Work grants, as well as joining up health and employment support around the individual through Employment Advisors in NHS Talking Therapies and Individual Placement and Support in Primary Care.

Employers play a key role in increasing employment opportunities and supporting disabled people and people with health conditions, to thrive as part of the workforce. Our support to employers includes increasing access to Occupational Health, a digital information service for employers and the Disability Confident scheme.

 

I hope they hurry up and replace this ministerial post with an AI chatbot. It will generate equally clueless nonsense but we won't have to pay its salary and expenses.

 

This is completely delusional. Frankly it's not said enough just how much of this is complete fantasy with zero overlap with reality. A complete "imagine a world in which" delusional fantasies turn out to be true. They may as well be planning the future of the economy on an endless supply of gold-pooping unicorns.

 

Neil Duncan-Jordan Labour, Poole
To ask the Secretary of State for Health and Social Care, what steps he expects ICBs to take to support people with long covid.

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• Hansard source(Citation: HC Deb, 18 February 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
NHS England’s commissioning guidance from December 2023 presents guidance for the commissioning and oversight of post-COVID services by integrated care boards (ICBs) in England for adults, and children and young people from April 2024. Since then, in line with the National Health Service operating framework and the establishment of integrated care systems, the commissioning of post-COVID services has been the responsibility of ICBs. This is being supported by ongoing funding, and the expectation is that dedicated services should continue to be offered to support people with long COVID. The Government is also currently developing a delivery plan for patients with myalgic encephalomyelitis and chronic fatigue syndrome.

 

Alison McGovern The Minister of State, Department for Work and Pensions
“[...] Appropriate work is generally good for health and wellbeing, so we want everyone to get work and get on in work, whoever they are and wherever they live.”

If work is so good for health and well being, why have they delivered NOTHING to make us healthy and well again?

They have only offered treatments to get us more unwell.

Oh the irony of this stupidity

 

What little information we have supports the idea that traditional specialist intervention for ME/CFS results in fewer hours worked and more benefit claimed, which is not in my view necessarily a bad thing in relation to ME/CFS but is an indictment of current approaches to long Covid care focused on getting people back to work through rehabilitation, especially those that meet the diagnostic criteria for ME/CFS.

 

Wendy Chamberlain Liberal Democrat Chief Whip
To ask the Secretary of State for Health and Social Care, if he will take steps to ensure that the cross-government delivery plan for ME/CFS establishes a common UK-wide approach.

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• Hansard source(Citation: HC Deb, 26 February 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
The final delivery plan for myalgic encephalomyelitis, also known as chronic fatigue syndrome, will cover the population of England only.

However, due to the United Kingdom-wide nature of this issue, we have maintained engagement with the devolved administrations during the analysis of the consultation responses on the interim delivery plan, as well as on the ongoing development of the final plan.

We will continue to work closely with those devolved administrations to ensure that policy development and learning across the UK’s nations is shared.

 

The whole process seems so nebulous, I hope it will be a good plan, but I fear it will not be.

 

Baroness Miller of Chilthorne Domer Liberal Democrat
To ask His Majesty's Government what plans they have, if any, to include the development of standards for the care of people with severe myalgic encephalomyelitis in their delivery plan for myalgic encephalomyelitis/chronic fatigue syndrome.

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• Hansard source(Citation: HL Deb, 27 February 2025, cW)

Baroness Merron The Parliamentary Under-Secretary for Health and Social Care
The content of the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), delivery plan has not yet been finalised. The responses to the 2023 interim delivery plan consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan which we aim to publish by end of March. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

To support this, we have reconvened the ME/CFS Task and Finish Group, including senior Department and cross-Government officials, ME/CFS specialists and representatives from NHS England, the National Institute for Health and Care Excellence, the devolved administrations, and ME/CFS charities and organisations in the development of the final delivery plan for ME/CFS.

 

I shan't be posting these anymore; so someone else needs to take it over, if anyone is interested.

 

David Reed
Conservative
Exmouth and Exeter East
Commons
To ask the Secretary of State for Health and Social Care, whether the final delivery plan on myalgic encephalomyelitis will be published in March 2025; and what steps he plans to take to ensure its effectiveness without additional funding.

This answer is the replacement for a previous holding answer.

Answer

Ashley Dalton
Labour
West Lancashire
Commons
Answered on
28 February 2025

We aim to publish the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), final delivery plan in the coming months. The content of the ME/CFS delivery plan has not yet been finalised. The responses to the 2023 interim delivery plan consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people living with this debilitating disease. Following the publication of the final delivery plan, we will monitor the progress across all actions in the delivery plan to ensure timely implementation and periodically report to stakeholders as appropriate.



I think it's somewhat of a concern that they're now saying the delivery plan will be published in 'the coming months' whereas they had been saying it'd be published this month before.

 

John Martin McDonnell Independent, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, Care, if he will ensure that the cross-government delivery plan for ME/CFS will include (a) an apology to patients for their historic treatment and (b) clear steps that demonstrate his commitment to delivering a new approach.

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• Hansard source(Citation: HC Deb, 5 March 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The content of the myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), delivery plan has not yet been finalised. The responses to the 2023 interim delivery plan consultation, along with continued close engagement with stakeholders, will inform the development of the final ME/CFS delivery plan, which we aim to publish in the coming months. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

People with ME/CFS deserve the most appropriate treatment and to be confident that the National Health Service can offer that treatment. I recognise that care for people with ME/CFS has varied widely, and in the worst cases has left some people feeling that their illness is not recognised by the health and care system. We know that more research, better services, and a better understanding of the condition all have the potential to make a huge difference to the quality of life of people with ME/CFS.

 

"in the worst cases has left some people feeling that their illness is not recognised by the health and care system"

Feeling? I think that is rather an underestimate.

 

Jo Platt Labour/Co-operative, Leigh and Atherton
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 30 January 2025 to Question 26770 on Chronic Fatigue Syndrome: Health Services, whether the results from the NHS England stocktake will be published.

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• Hansard source(Citation: HC Deb, 10 March 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
NHS England’s long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome, stocktake aimed to collate information about service commissioning, activity, and delivery, to provide a national overview of the services commissioned by integrated care boards as part of their core activity. The stocktake was completed for an internal NHS England committee and, therefore, there are no plans to publish the findings. However, those findings did confirm the widely recognised challenges of significant variation in care delivery across England, and a lack of comprehensive activity data.