UK House of Lords/ House of Commons Questions

Siân Berry Green, Brighton Pavilion
To ask the Secretary of State for Health and Social Care, pursuant to the Answer of 28 March 2025 to Question 40020 on Chronic Fatigue Syndrome: Health Services, whether he has had discussions with the British Association of Clinicians in ME/CFS on the myalgic encephalomyelitis/chronic fatigue syndrome delivery plan; and whether that plan will establish more NHS specialist ME/CFS services.

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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 are engaging with our myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), Task and Finish Group, including the British Association of Clinicians in ME/CFS, seeking their feedback and suggestions as we develop our final delivery plan for ME/CFS. We will use that feedback, alongside the responses to the 2023 consultation on the interim delivery plan, to inform the final delivery plan, which we will publish by the end of June.

 

John Martin McDonnell Independent, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, what his planned publication date is of the ME/CFS Delivery Plan; and for what reason it has been delayed.

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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 aim to publish the final delivery plan by the end of June. 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 and help ensure we can be as ambitious as possible to make the most impact for those living with ME/CFS.

It will also enable the final delivery plan to align more closely with wider related Government strategies such as the forthcoming 10-Year Health Plan. The extension to the publication timeline will allow vital further engagement with the ME/CFS Task and Finish Group and those, across Government and beyond, responsible for actions in the final delivery plan. Through this engagement, we will further scope and develop new and stronger actions seeking to deliver meaningful change for the ME/CFS community.

 

Wasn't sure if this has been posted anywhere else?
‘There is no current national commissioning guidance or service delivery models in existence for ME/CFS services.’ ‘The Post Covid and ME/CFS services stocktake has not been able to demonstrate an ‘in depth accurate overview’ as commissioned.’
https://www.longcovidadvoc.com/post...overing-nhs-inaction-on-long-covid-and-me-cfs

 

Lord Blunkett Labour
To ask His Majesty's Government what analysis has been undertaken of the variation in the cost of providing first appointments for those presenting with long Covid symptoms at different hospital trusts across England; and what are the highest and lowest per-patient costs for such initial consultations.

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• Hansard source(Citation: HL Deb, 9 April 2025, cW)

Baroness Merron The Parliamentary Under-Secretary for Health and Social Care
There is an outpatient activity speciality for post-COVID-19 syndrome services, also known as long COVID services, with a treatment function code (TFC) of 348. The average costs for a first-time appointment for those presenting with long COVID symptoms for the 2023/24 financial year were as follows:

- for face to face attendance to a consultant-led appointment, the cost was £595;

- for face to face attendance to a non-consultant led appointment, the cost was £205;

- for non-face to face attendance to a consultant-led appointment, the cost was £595; and

- for non-face to face attendance to a non-consultant led appointment, the cost was £205.

The attached table shows a breakdown of highest, lowest, and average costs of face to face and non-face to face, as well as consultant led and non-consultant led, appointments for those presenting with long COVID symptoms.

Many patients may have been referred to other specialities and then subsequently been identified as suffering from long COVID and may, therefore, be being treated under a different speciality. This could include respiratory medicine, with a TFC of 341, cardiology, with a TFC of 320, and neurology, with a TFC of 400. Outpatients will only include the speciality the patient was seen in, and not what the patient was seen for, unless they were referred to a specific long COVID clinic. The average cost is available on the national cost collection publication on the NHS.UK website, in an online only format.

Table for HL6406 (docx, 14.3KB)

 

Isn’t it strange that all the other specialty consultants are cheaper than long covid consultants?

 

Yes - that was Caroline Lucas. As a Green I was very concerned about her involvement with them, especially as she is/was a GP! I emailed her a few times, and I think I posted about it on this site.

 

What's especially insulting here is that we know that the plan will be as unambitious as they can get away with, and if they could, they would simply throw it all down the deepest mine in the country and toast on expensive wine to celebrate, probably one named very ironically.

One way to look at it, though, is that more time gives more opportunity to sway the process in a direction that will show at least some minimal ambition. I just hope it's happening.

 

Only way I can read it is that the situation is too deplorable to expose, so they're pretending that it was too hard to do, and will work to cover up how bad things have been from the start. But it's hard to tell from this little information.

However it sure is true. The government has been pointing to the useless clinics from the start as the prime example of what they're doing. And because of the choices they made, there is nothing of value to report, all of which applies to the general approach to rehabilitation that they are trying to universalize to everyone.

 

Caroline wrote this excellent letter to minister brine in 2018 https://carolinelucas.com/caroline/...ten-misunderstood-disease-that-affects-250000 it is regrettable Sussex org has any influence on these green MPs

 

the ministers representative response the palm of the hand https://carolinelucas.com/sites/carolinelucas.com/files/ML.N0070.CM_.13.7.18.reply_.pdf

 

Totally unacceptable isn’t it? I mean what a joke

 

Good grief - I wonder why I thought she was?

 

Chris Ward Labour, Brighton Kemptown and Peacehaven
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential impact on clinical support staff of referring patients with long covid to ME/Chronic Fatigue Syndrome specialist services.

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

Ashley Dalton The Parliamentary Under-Secretary for Health and Social Care
While no assessment has been made, NHS England has published commissioning guidance for post-Covid services which sets out the principles of care for people with long COVID.

There is also specific advice for healthcare professionals 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 (NICE), the Scottish Intercollegiate Guidelines Network and the Royal College of General Practitioners. Whilst NICE guidelines are not mandatory, the Government does expect clinicians and healthcare commissioners to take them fully into account.

Commissioning, service provision and staffing for both myalgic encephalomyelitis services and long COVID services are the responsibility of local integrated care boards.

 

like trying to make the stigmatised & untaught m.e research field flourish and compete unaided , this has already been tried and demonstrably failed. What is the logic behind carrying on? What notice do ICB take of the fact that most are currently providing no severe ME support At all. None. And then you add onto that the fact that, unlike for long Covid, m.e services had no commissioning guides either. Just a nice guidelines that are not mandatory and are freely ignored. I honestly feel that the m.e community has human rights to a standard of care that is not being met