UK House of Lords/ House of Commons Questions

Ellie Chowns Green, North Herefordshire
To ask the Secretary of State for Work and Pensions, pursuant to the Answer of 6 May 2025 to Question 49218 on Social Security Benefits: Medical Examinations, whether her Department plans to (a) make an assessment of the potential merits of exploring more tailored mechanisms to reduce the frequency of assessments for people with (i) Myalgic Encephalomyelitis and (ii) other clearly documented, severe and long-term health conditions where improvement is unlikely and (b) involve (A) people with lived experience and (B) relevant charities in the (1) development and (2) implementation of such mechanisms.

Stephen Timms The Minister of State, Department for Work and Pensions[/paste:font]
As stated in our response to Question 49218, we are not planning to exempt specific conditions, but we are planning to reduce reassessments for those with the most severe conditions.

We aim to do this in Universal Credit through guaranteeing that for both new and existing claims, those with the most severe, life-long health conditions, who will never be able to work, will not need to be reassessed in the future. In PIP, we are exploring ways we could use evidence from other services to reduce the need for some people with very severe conditions to undergo a full functional assessment.

In the Green Paper, we also promised to review the PIP assessment to make sure that it is fit for the future. I shall lead the review in close consultation with disabled people, disabled people’s organisations, and other experts. To get this right, I am bringing together stakeholders to agree the scope and timing of the review. I will then publish Terms of Reference for the review in due course.
 
Adam Dance Liberal Democrat, Yeovil
To ask the Secretary of State for Health and Social Care, what steps he is taking to help improve support for people with Myalgic Encephalomyelitis in Yeovil constituency.

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
NHS England is responsible for allocating funding to integrated care boards (ICBs), including the Somerset ICB which covers the Yeovil constituency, and ICBs are in turn responsible for commissioning specialist myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), services to meet the needs of their population, subject to local prioritisation and funding.

The process of commissioning services should take into account best practice guidance such as the National Institute for Health and Care Excellence’s (NICE) guidance on ME/CFS diagnosis and management, published in October 2021. The NICE’s guidelines provide recommendations on the principles of care for people with severe ME/CFS, including hospital care, and adapting a multidisciplinary approach involving access to a range of health and social care professionals based on needs.

At a national level, we aim to publish the ME/CFS final delivery plan by the end of June 2025. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of the people with this debilitating disease. The responses to the interim delivery plan consultation, along with continued close engagement with the Government, the National Health Service, and external stakeholders, will inform the development of the final ME/CFS delivery plan.
 
Lord Strasburger Liberal Democrat
To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 10 March (HL5426), which of the research studies relating to long Covid are still running; and how much they are planning to spend in this financial year to treat or cure the symptoms of long Covid.

Lord Strasburger Liberal Democrat
To ask His Majesty's Government what assessment they have made of progress made by UK-based researchers on finding methods to treat the symptoms of long Covid and to cure patients suffering from long Covid.

Baroness Merron The Parliamentary Under-Secretary for Health and Social Care
The National Institute for Health and Care Research (NIHR) and UK Research and Innovation (UKRI) have dedicated funding to research into treatment options, clinical trials, and to understanding the underlying mechanisms of long COVID. The overall Government investment in long COVID research is over £57 million. Government research funders welcome applications for funding for long COVID research.

Of the research studies identified in the answer for HL5426, four are ongoing and have expected spend in this financial year, namely: STIMULATE-ICP; PHOSP-COVID; Percutaneous Auricular Nerve Stimulation for Treating Post-COVID Fatigue; and Online cognitive training for people with cognitive impairment following SARS-CoV-2 infection. The total budget for these studies is over £15 million, but spend in this financial year is not yet confirmed, as it depends on the progress of the studies.

No specific assessment has been made of the progress of United Kingdom-based researchers on finding methods to treat the symptoms of long COVID. The UK has a strong track record of developing and evaluating new treatments for COVID-19 through randomised control trials. In November 2020, the NIHR and UKRI launched their first call for research proposals on long COVID and subsequently funded the treatments for long COVID. In 2021, the NIHR funded the STIMULATE-ICP study as the largest trial for long COVID treatments at the time. This study is still ongoing, and emerging findings will be shared with the National Institute for Health and Care Excellence. The NIHR Innovation Observatory has undertaken a rapid horizon scan to identify repurposed medicines in clinical development for the treatment of myalgic encephalomyelitis, also known as chronic fatigue syndrome, as well as related conditions such as long COVID and fibromyalgia. The horizon scan focused on medicines with a UK licence that are in phase two or three clinical trials, with trial registration dates from 2020 onwards.

Unfortunately, no study globally has identified a cure for long COVID. The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm from rehabilitation programmes for long COVID. The NIHR provided £1.5 million towards this trial, which combined exercise with behavioural support, to measure their effects on symptoms, health, and other outcomes.
 
Sigh, is REGAIN long covid’s PACE? Millions always seems available for psychologising studies with questionable methodology. But for biomedical proposals the standards seem to be different.

‘The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm from rehabilitation programmes for long COVID. The NIHR provided £1.5 million towards this trial,’
 
The government said:
No specific assessment has been made of the progress of United Kingdom-based researchers on finding methods to treat the symptoms of long COVID
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Well, that sure would explain a lot. Who spends money without caring whether it achieves anything? Those people, clearly. Also: the entire industry, clearly.

If you're not measuring, you're not doing science. Hell, even in business they measure everything they do. Sometimes to a fault, but still. Because, really, who spends money without even looking into what it achieves? People who don't intent do achieve anything, that's who.

"No need to check Dr Lysenko's work. The politburo has full confidence in the methods of Dr Lysenko."
 
The REGAIN study became the first randomised trial to show a benefit from rehabilitation for people with long COVID, and the first high quality evidence confirming the sustained clinical benefit and lack of harm from rehabilitation programmes for long COVID.
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This marketing line has been used a couple of times now by govt spokespeople, it's obviously the party line. I'm trying to compose an email to the Long Covid APPG group pointing out the correction in the BMJ about the results only being applicable to hospitalised patients. Hoping maybe some MP in that group can push back on it. (I would hope perhaps the LC/ME organisations are on the case too.)
 
Juliet Campbell Labour, Broxtowe
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of providing free Covid-19 vaccine boosters to people with long Covid.

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
The Government is committed to protecting those most vulnerable to COVID-19 through vaccination, as guided by the independent Joint Committee on Vaccination and Immunisation (JCVI).

The JCVI stated in its advice for the autumn 2024 COVID-19 vaccination programme that there remains considerable uncertainty regarding the impact of additional vaccine doses, beyond the primary vaccination, on the risk, progression, and outcome of post-COVID syndromes. The JCVI advised that better data is needed on the impact of additional vaccine doses on the occurrence and severity of post-COVID syndromes in the current era of omicron sub-variants of the COVID-19 virus, and high population immunity. This advice is available at the following link:

https://www.gov.uk/government/publi...nation-programme-for-autumn-2024-8-april-2024

On 13 November 2024, the JCVI published advice on the COVID-19 vaccination programmes in spring 2025, autumn 2025, and spring 2026. This advice is available at the following link:

https://www.gov.uk/government/publi...-covid-19-vaccination-in-2025-and-spring-2026

The Government has accepted the JCVI’s advice on eligibility for the spring 2025 COVID-19 vaccination programme, to include those aged 75 years old and above, those aged six months old or above with immunosuppression, and those living in care homes for older adults. The Government response is available at the following link:

https://www.gov.uk/government/news/advice-accepted-on-spring-2025-covid-19-vaccination-programme

The Government is considering the advice for autumn 2025 and spring 2026 carefully, and will respond in due course.
 
Juliet Campbell Labour, Broxtowe
To ask the Secretary of State for Health and Social Care, what steps his Department is taking to support people with long Covid.

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
NHS England has invested £314 million since the start of the pandemic to provide care and support for people with long COVID. This includes establishing specialist clinics throughout England to assess adults, children, and young people who are experiencing long-term effects of COVID-19 infection. A further £86.7 million of funding was included in integrated care board core allocations for 2024/25, and specific regional funding was also allocated for assurance and system support.

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 via the National Health Service website, at the following link:

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

Between 2019/20 and 2023/24, through the National Institute for Health and Care Research and the Medical Research Council, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects 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 the effectiveness of clinical care.
 
UK government said:
NHS England has invested £314 million since the start of the pandemic to provide care and support for people with long COVID
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This needs to raise very awkward questions about why so much money was wasted for absolutely no benefits. All this money was just as completely wasted as if they had spent it, and lost it, at a casino. It's a scandalous waste, not for its purpose, but for its complete lack of results. A failure that was predictable based on similar previous wastes for identical services.
 
Lord Strasburger Liberal Democrat
To ask His Majesty's Government, further to the Written Answer by Baroness Merron on 17 March (HL5423), what plans they have to treat or cure the estimated 1.8 million people suffering from long Covid in the period to March 2024 and those additional people who have contracted the disease since that date.

Baroness Merron The Parliamentary Under-Secretary for Health and Social Care
NHS England has invested £314 million since the start of the pandemic to provide care and support for people with long COVID. This includes establishing specialist clinics throughout England to assess adults, children, and young people who are experiencing long-term effects due to COVID-19 infection. A further £86.7 million of funding was included in integrated care board core allocations for 2024/25, and specific regional funding was also allocated for assurance and system support.

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 and to support people affected by long COVID. Further information on the Clinical Post-COVID Society is available on their website, in an online only format.

Between 2019/20 and 2023/24, through the National Institute for Health and Care Research and the Medical Research Council, we have invested over £57 million on research into long COVID, with almost £40 million of this through two specific research calls on long COVID. The funded projects 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 the effectiveness of clinical care.
 
I don't think I've ever seen an example side-by-side of two separate ministers using copy and paste to deliver pretty much identical answers. I thank each minister deeply for the 15 seconds they took to answer these questions. I also thank Ashley Dalton for the extra 45 seconds she took to copy and paste a slightly longer reply to the questions put by the MEA and she also kindly timed the letter to arrive on May 12, thinking that it was exactly what people wanted to hear on ME awareness day. In case it wasn’t shared:
https://meassociation.org.uk/2025/0...ed-concerns-regarding-the-dhsc-delivery-plan/
 
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Tao Fogger said:
NHS England has invested £314 million
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1. Where did it go?
2. What treatments/outcomes do you have to show for this investment?
3. covid is not "over" so why are the clinics being closed / defunded?

Maybe sound less pleased with yourselves when you have achieved the square root of nothing and wasted £314 million doing it

Full disclosure : I had a lot of time out of my local LC clinic, and they were lovely humans, but it spent a lot of money when my health is worse than when I started, because they could offer me nothing but psychological support and conversations about pacing - the latter completely pointless without treatment for my ADHD.

The lack of joined up thinking and follow up is breathtaking. In any business they would be fired for this outcome.
 
JellyBabyKid said:
The lack of joined up thinking and follow up is breathtaking
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This is one of the things that annoys me the most. All this fake talk about "holistic" this and that, and psychobehavioral being even more "holistic", when it literally rates 0 on it. It's the most maddeningly narrow-minded fanatically obsessed with one thing and one thing only anyone can imagine.

Which actually says a lot about how it's all completely fake, how almost no one in health care actually cares about any of this, because anyone who would actually care should be enraged at how it's all a lie, and the outcome of this "holistic" psychobehavioral is even less so than traditional medicine, which also doesn't bother with that.

The average corporate slogan is more honest than this. It's certainly taken more seriously, and it almost never is.
 
Cinders66 said:
I don't think I've ever seen an example side-by-side of two separate ministers using copy and paste to deliver pretty much identical answers. I thank each minister deeply for the 15 seconds they took to answer these questions. I also thank Ashley Dalton for the extra 45 seconds she took to copy and paste a slightly longer reply to the questions put by the MEA and she also kindly timed the letter to arrive on May 12, thinking that it was exactly what people wanted to hear on ME awareness day. In case it wasn’t shared:
https://meassociation.org.uk/2025/0...ed-concerns-regarding-the-dhsc-delivery-plan/
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The responses to written questions as with replies to letters to Ministers are put together by junior officials and it has always been the practice that standard paragraphs are used and then the response should be tailored to the question.

written questions are routine policy work. to get topics high on ministerial radar oral PQs, debates as in the 2019 debates, getting MPs to request meetings as in the recent Stephen Timms meeting APPG. All of which they need to prepare for and receive written briefing and briefing meetings from more senior officials than those who deal with routine policy work. So those activities get the issues registered with both politicians and civil service senior policy advisers
 
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NelliePledge said:
The responses to written questions as with replies to letters to Ministers are put together by junior officials and it has always been the practice that standard paragraphs are used and then the response should be tailored to the question.

written questions are routine policy work. to get topics high on ministerial radar oral PQs, debates as in the 2019 debates, getting MPs to request meetings as in the recent Stephen Timms meeting APPG. All of which they need to prepare for and receive written briefing and briefing meetings from more senior officials than those who deal with routine policy work. So those activities get the issues registered with both politicians and civil service senior policy advisers
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thank you.
Imo it does show that written questions or written letters to ministers or even to MPs are a waste of time then aren’t they? And we should be using much more varied ways of trying to lobby and campaign which charities have not led in any way. Every attempt to apply more public pressure regarding funding the DHSC delivery plan came from outside of the main charities , as efforts prior to the formal discussions did too and most were ignored rather than passed on for publicity , despite the main charities being the one with a meberhsip to mobilise. With other successful Charities, the charities both lobby and lead campaigns.
 
Cinders66 said:
Imo it does show that written questions or written letters to ministers or even to MPs are a waste of time then aren’t they?
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I’d say they’re not a waste of time, but we should also be realistic in what they can achieve and that it varies a great deal between MPs. The letters and statements out aren’t likely to be where the change occurs or is announced, but that doesn’t mean they can’t influence.

Beyond the formal process @NelliePledge describes well, there are people involved. If an MP knows about an issue then they may have a different view of it if it crops up, especially if it’s in their brief, than if they didn’t. If they hear lots of constituents with a message, then it may be heard. If lots of MPs are hearing similar messages from their constituents it can change things. Politics is about people and relationships.
 
hotblack said:
I’d say they’re not a waste of time, but we should also be realistic in what they can achieve and that it varies a great deal between MPs. The letters and statements out aren’t likely to be where the change occurs or is announced, but that doesn’t mean they can’t influence.

Beyond the formal process @NelliePledge describes well, there are people involved. If an MP knows about an issue then they may have a different view of it if it crops up, especially if it’s in their brief, than if they didn’t. If they hear lots of constituents with a message, then it may be heard. If lots of MPs are hearing similar messages from their constituents it can change things. Politics is about people and relationships.
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In terms of ministers, it's pretty much about numbers vs substance of argument isn't it? . So the hours over weeks arguing a case in a long letter have been pointless but a campaign, which our main charities never lead, to inundate with citizens concern would be worthwhile because it would signal this has enough interest/ concern, we might have to look at this.
Letters to individual MPs are probably more worth it, if they will take further it and join the APPG, if the APPG after 27 years develop a more robust action plan or if one MP dares to make this a sort of big issue, in the way that MPs for example might speak out for WASPI women or take the blood scandal as a cause. However mine just "raised my issues" with the minister and doubtless got the same copy paste fob off & that satisfied him.

Ultimately I am loosing Faith with working with the establishment where we've had the face set against us , I think additionally it is required to make noise - outside of polite lobbying - so through protest, billboards , through the media, through getting celebrities on board with a powerful campaign to embarrass the government and to embarrass MRC and make them feel that they have no choice but to do the decent thing. Other illnesss have used this approach.
 
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