UK House of Lords/ House of Commons Questions

Everything about us, in secret, behind closed doors, unaccountable.

You don't have to work in secret when you are doing well. Because you want to show it. When you systematically have to hide everything, no one can pretend like it's any legitimate. But it is their show, their system, for them, by them.

 

The APPG report on nhs services in 2010 said:

NHS England in its only stock take I am aware of , in 2025 are reporting problematic variation, nothing was done between 2010-2025 about this and I'm unsure whether physician-led services , which patients *do* want, are being asked for by ME charities , because the NICE guidelines do not require them
http://appgme.org.uk/Downloads/appg_interim_report_v2.pdf

 

Jo Platt Labour/Co-operative, Leigh and Atherton
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to supporting people with Long Covid in the context of the closure of Long Covid clinics.

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• Hansard source(Citation: HC Deb, 11 March 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
Across the National Health Service in England there are services supporting people with post-COVID syndrome, also known as long COVID. These services offer physical, cognitive, and psychological assessment, and, where appropriate, refer patients onto existing services for treatment and rehabilitation. Further information can be found on NHS England’s website, at the following link:

https://www.england.nhs.uk/coronavirus/post-covid-syndrome-long-covid/

The commissioning of post-COVID services transitioned from the long COVID national programme to local integrated care boards (ICBs) at the end of March 2024. Funding for post-COVID services in 2024/25 was expected to be allocated based on the previous distribution for 2023/24, to minimise disruption to funding flows and maintain services.

NHS England has published commissioning guidance for post-COVID services which sets out the commissioning and service requirements and the oversight of post-COVID services by the ICBs in England for adults, and children and young people (CYP). It outlines the elements that post-COVID services should comprise of and the principles of care for long COVID, and is available at the following link:

https://www.england.nhs.uk/long-rea...ervices-for-adults-children-and-young-people/

There is specific advice for general practitioners to manage long COVID. Patients should be managed according to current clinical guidance, such as that published and updated by the National Institute for Health and Care Excellence, the Scottish Intercollegiate Guidelines Network, and the Royal College of General Practitioners, which is available at the following link:

https://www.nice.org.uk/guidance/NG188

Primary care plays a key role in the long COVID clinical pathway, in considering and excluding potential other causes of symptoms and in determining the appropriate management of symptoms and the timing of onward referral to post-COVID services, if appropriate. A post-COVID-19 syndrome diagnostic pathway, the criteria for referral to post-COVID services, and separate adult and CYP pathways are outlined in the commissioning guidance to help provide consistency of delivery and to improve patient experience.

Not all people who report long COVID symptoms will require assessment in a post-COVID assessment service. For example, some of the most common symptoms may still not warrant a specialist assessment as people can benefit from self-management advice, including from the NHS website. Some people may be seen in other disease-specific pathways, depending on their individual circumstances.

NHS England has recently completed a long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), stocktake, which aimed to provide a nationwide overview of service delivery in commissioning and contracting, assessing access, activity, and outcomes. The findings confirmed widely recognised challenges, specifically significant variation in care delivery across England, and a lack of comprehensive activity data.

Executive NHS England board members were updated on the current provision of long COVID and ME/CFS services, noting those challenges. Discussions considered service prioritisation and potential COVID Inquiry recommendations. It was agreed that long COVID and ME/CFS services are rightly commissioned by ICBs, which have responsibility for ensuring coverage for their population.

Furthermore, to support clinical leadership in this area, NHS England has worked in partnership with the British Society of Physical and Rehabilitation Medicine to develop a new Clinical Post-COVID Society to facilitate the ongoing sharing of best practice, to support people affected by long COVID. Further information about the society is available at the following link:

https://www.clinicalpcs.org.uk

 

A lot of verbiage that doesn't address the question about the closure of services.

 

& if they don't? What if all the commission boards decide that m.e in never-ending tough times isn't their priority? Is that just okay? What has been the penalty or pushback against swathes of the United Kingdom That haven’t provided any service or have provided half-heart minimal measures and haven’t even bothered to look after those severely ill?

 

Scott Arthur Labour, Edinburgh South West
To ask the Secretary of State for Health and Social Care, what steps he is taking to support people with long covid; and what steps he is taking to increase awareness of the impacts of long covid.

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

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
Across England, services within the National Health Service are available to support people with post-COVID syndrome, often described as long COVID. These services offer physical, cognitive and psychological assessment, and, where appropriate, refer patients onto existing services for treatment and rehabilitation.

NHS England has recently completed a long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) stocktake, aimed to provide a national overview of service delivery in commissioning these services. It included assessing access, activity and outcomes. The findings confirmed significant variation in care delivery across England and a lack of comprehensive activity data.

To support clinical leadership in this area, NHS England has worked in partnership with the British Society of Physical and Rehabilitation Medicine to develop a new Clinical Post-COVID Society to facilitate the ongoing sharing of best practice to support people affected by long COVID. More information about the society is available at the following link:

https://www.clinicalpcs.org.uk.

Information on long COVID is widely available from the NHS and the Government in a variety of formats. Detailed information for people of all ages and background on symptoms and the healthcare support that is available for long COVID remains available at the following link:

https://www.england.nhs.uk/coronavirus/post-covid-syndrome-long-covid/

Over the last five years, the Government, through the National Institute for Health and Care Research (NIHR) and the Medical Research Council, has invested over £57 million in long COVID research, with almost £40 million of this through two specific research calls on long COVID. The NIHR specifically has invested £42.7 million towards research for long COVID. The projects funded aim to improve our understanding of the diagnosis and underlying mechanisms of the disease, and the effectiveness of both pharmacological and non-pharmacological therapies and interventions, as well as to evaluate clinical care. Further information on the research into long COVID commissioned through the NIHR is available at the following link:

https://www.nihr.ac.uk/about-us/what-we-do/covid-19/long-COVID

 

Steve Darling Liberal Democrat Spokesperson (Work and Pensions)
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support NHS long Covid clinics.

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• Hansard source(Citation: HC Deb, 24 March 2025, cW)

Steve Darling Liberal Democrat Spokesperson (Work and Pensions)[/paste:font]
To ask the Secretary of State for Health and Social Care, what guidance his Department has issued to NHS trusts on the provision of support for long COVID (a) clinics and (b) patients.

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• Hansard source(Citation: HC Deb, 24 March 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
Commissioning of post-COVID services transitioned from the long COVID national programme to local integrated care boards (ICBs) at the end of March 2024. Funding for post-COVID services in 2024/25 was expected to be allocated based on the 2023/24 distribution, to minimise disruption to funding flows and to maintain services.

NHS England has recently completed a long COVID and myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) stocktake, aimed to provide a nationwide overview of service delivery in commissioning and contracting, assessing access, activity and outcomes. It was agreed that long COVID and ME/CFS services are rightly commissioned by ICBs, which have responsibility for ensuring coverage for their population.

To support clinical leadership in this area, NHS England has worked in partnership with the British Society of Physical and Rehabilitation Medicine to develop a new Clinical Post-COVID Society to facilitate the ongoing sharing of best practice to support people affected by long COVID.

NHS England has published commissioning guidance for post-COVID services which sets out the commissioning, service requirements and oversight of post-COVID services by ICBs in England for adults, and children and young people. It outlines the elements that post-COVID services should comprise of and the principles of care for long COVID. The guidance is available at the following link:

https://www.england.nhs.uk/long-read/commissioning-guidance-for-post-covid-services-for-adults-children-and-young-people/

There is specific advice for general practitioners to manage long COVID. Patients should be managed according to current clinical guidance such as that published and updated by the National Institute for Health and Care Excellence; this is available at the following link:

https://www.nice.org.uk/guidance/NG188

 

Tom Morrison Liberal Democrat Deputy Chief Whip
To ask the Secretary of State for Health and Social Care, if he will increase funding for biomedical research as part of the cross-Government delivery plan for Myalgic encephalomyelitis.

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• Hansard source(Citation: HC Deb, 28 March 2025, cW)

Tom Morrison Liberal Democrat Deputy Chief Whip[/paste:font]
To ask the Secretary of State for Health and Social Care, if he will take steps to ensure the delivery plan for myalgic encephalomyelitis will contain mechanisms for (a) scruitnising and (b) measuring progress.

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• Hansard source(Citation: HC Deb, 28 March 2025, cW)

Tom Morrison Liberal Democrat Deputy Chief Whip[/paste:font]
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential impact of myalgic encephalomyelitis on the economy.

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• Hansard source(Citation: HC Deb, 28 March 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
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.

We intend to provide additional support to ME/CFS researchers to develop high quality funding applications and to access existing National Institute for Health and Care Research and Medical Research Council research funding. All research funding applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Our forthcoming ME/CFS delivery plan will outline the additional support we will offer to the research community to increase the volume and quality of applications and, therefore, increase the allocation of funding to this area.

While no specific assessment has been made of the impact of ME/CFS on the economy, we know that long-term conditions like ME/CFS not only impact negatively on patients and their loved ones, but also come at a cost to health and care services and the wider economy through, for example, loss of work and an increased benefits bill.

The content of the 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 delivery plan. We have listened to key ME/CFS stakeholders to allow for more time to develop the plan and help ensure we can be as ambitious as possible across the three themes, to make the most impact for those living with ME/CFS. As such, we aim to publish the plan by the end of June. As well as boosting research, the plan will focus on improving attitudes and education, and bettering the lives of people with this debilitating disease.

People with ME/CFS deserve the most appropriate treatment, and deserve to be confident that the National Health Service can offer that treatment. We 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 in the quality of life of people with ME/CFS.

 

They have literally refused to implement the updated guideline, and continue to promote failed treatments while mostly still refusing to diagnose. Liar.

 

this reminds me of when you watch Budget TV & they try to show you how you can have a good time or make things without spending any money, are they still implying we can quickly turn the whole field from barely any research and no treatments and little progress over thirty years around,without spending anything in terms of dedicated funding or special measures like centres of excellence? Refusing to invest hasn't worked for the past 20 years and they are still saying the same things. I thought With ring fence funding, such as what they did for long Covid, there isn’t open competition, there is dedicated funding to signal that funding will be available for an area, which increases interest? If there was more they could do to inspire the field without using money, Why didn't they choose to do this in the 40-odd meetings they had pre-2020 with charity reps working out how to stimulate Interest? The MRC was lecturing about the research community needing to increase the volume and quality of applications at the 2016 CMRC conference, Can they really say ,hand on heart, that if they had a desperately ill family member with this illness they would be happy with the way that progress has been driven?

Edit to add I personally do not see how they can sustain the two tier research effort -- out of one side of their mouth, telling people pwME that they can't possibly do anything much other than help to encourage more HQ applications whilst reassuring the long Covid community that their commitment to helping them can be seen by the fact they' had a fairly large research program and £50 million worth of funding

 

[Apologies, I realised I'd missed posting this at the time it was asked]

Jim Shannon DUP, Strangford
To ask the Secretary of State for Health and Social Care, what information his Department hold son the number of people who have been diagnosed with long covid in the last 12 months.

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• Hansard source(Citation: HC Deb, 21 March 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
Whilst the requested data is not available in the format requested, the most recent data from the Winter Coronavirus (COVID-19) Infection Study, a joint study carried out by the Office for National Statistics and the UK Health Security Agency, shows that, for the period between 6 February 2024 and 7 March 2024, an estimated two million people, or 3.3% of the population, in private households in England and Scotland, self-reported experiencing long COVID symptoms more than four weeks after a COVID-19 infection.

 

[Apologies, this one also]

Lord Strasburger Liberal Democrat
To ask His Majesty's Government what is their estimate of the level of functional impairment endured by patients suffering from long Covid.

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• Hansard source(Citation: HL Deb, 18 March 2025, cW)

Baroness Merron The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Government recognises that long COVID is a complex condition, with a wide range of symptoms, which, in the worst case, can be substantially incapacitating. The term ‘long COVID’ is an umbrella term, coined by patients and widely used to describe a wide range of symptoms or clusters of symptoms, of differing duration and severity, and potentially a number of distinct syndromes. The clinical case definition produced by the National Institute for Health and Care Excellence identifies three phases of post-COVID-19 infection, the latter two of which are commonly described as long COVID, which are as follows:

• acute COVID-19, with signs and symptoms of COVID-19 for up to four weeks;
• ongoing symptomatic COVID-19, with signs and symptoms of COVID-19 for between four and 12 weeks; and
• post-COVID-19 syndrome, with signs and symptoms that develop during or after an infection consistent with COVID‑19, which continue for more than 12 weeks, and which are not explained by an alternative diagnosis. It usually presents with clusters of symptoms, often overlapping, which can fluctuate and change over time and can affect any system in the body. Post‑COVID‑19 syndrome may be considered before 12 weeks while the possibility of an alternative underlying disease is also being assessed.

The most common symptoms of long COVID are extreme tiredness or fatigue, feeling short of breath, problems with your memory and concentration, sometimes referred to as brain fog, heart palpitations, dizziness, joint pain, and muscle aches.

 

[Apologies, last one missed that I can find. I have now added 'Long Covid' to my alerts, so should be posting all future ones]

Connor Naismith Labour, Crewe and Nantwich
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to help ensure that research into long-COVID is adequately funded.

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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 Department funds research on health and social care through the National Institute for Health and Care Research (NIHR). The NIHR remains committed to funding high-quality research to understand the causes, consequences, and treatment for long COVID.

We are actively exploring next steps for research in this area. We recently held a roundtable on long COVID research on 17 October 2025, led by the Minister responsible for long COVID and co-hosted with the Chief Scientific Adviser, Professor Lucy Chappell.

 

Thank you for keeping up with all these.

 

Al Pinkerton Liberal Democrat Spokesperson (Northern Ireland)
To ask the Secretary of State for Health and Social Care, what assessment he has made of the potential merits of establishing a centre of excellence for the (a) care and (b) research of (i) post-viral and (ii) infection-associated conditions.

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

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
We do not anticipate setting up a new centre of excellence for care and research specifically for post-viral or infection-associated conditions. The Department funds research on post-viral conditions through the National Institute for Health and Care Research (NIHR). The NIHR and the Medical Research Council (MRC) remain committed to funding high-quality research to understand the causes, consequences, and treatment of post-viral and infection-associated conditions such as myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and long COVID, and are actively exploring next steps for stimulating further research in this area. The MRC and NIHR currently fund research through a variety of routes, including infrastructure, research programmes, capacity building, for example with research fellowships, and in the case of the NIHR, research delivery to support recruitment to studies. Funding is available for post-viral and infection-associated research.

 

Al Pinkerton Liberal Democrat Spokesperson (Northern Ireland)
To ask the Secretary of State for Health and Social Care, what steps he is taking to support people impacted by myalgic encephalomyelitis in Surrey Heath constituency.

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

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
NHS Frimley does not currently have contracted support for myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). Patients who require support are offered services within neighbouring systems.

At a national level, the responses to the Department’s Improving the experiences of people with ME/CFS: 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 the end of June 2025. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease, including those in the Surrey Heath constituency.

We also intend to provide additional support to ME/CFS researchers to develop high quality funding applications and access existing National Institute for Health and Care Research and Medical Research Council research funding. All research funding applications are subject to peer review and judged in open competition, with awards being made on the basis of the importance of the topic to patients and health and care services, value for money, and scientific quality. Our forthcoming ME/CFS delivery plan will outline the additional support we will offer to the research community to increase the volume and quality of applications and, therefore, increase the allocation of funding to this area.

 

Yuan Yang Labour, Earley and Woodley
To ask the Secretary of State for Health and Social Care, what his planned timeframe is for the chronic fatigue syndrome delivery plan.

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• Hansard source(Citation: HC Deb, 8 April 2025, cW)

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
We have listened to key myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), stakeholders to allow for more time to develop the plan, to help ensure we can be as ambitious as possible and make the most impact for those living with ME/CFS. As such, we aim to publish the plan by the end of June 2025.