UK House of Lords/ House of Commons Questions

Sharon Hodgson Labour, Washington and Gateshead South
To ask the Secretary of State for Health and Social Care, whether he plans to leverage international cooperation to accelerate (a) biomedical research and (b) treatments for (i) ME and (ii) long covid.

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• Hansard source(Citation: HC Deb, 21 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The National Institute for Health and Care Research (NIHR) is exploring opportunities with international research partners to foster research cooperation in areas of unmet need. For example, the Department of Health and Social Care has close links with the United States Department of Health and Human Services’ Office of Long COVID Research and Practice. The US’ Assistant Secretary for Health has discussed long COVID with the Chief Medical Officer, and the Department of Health and Social Care has also co-hosted a series of researcher exchanges between United Kingdom and US experts.

The NIHR and Medical Research Council are committed to funding high-quality research to understand the causes, consequences, and treatment of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome, and are actively exploring next steps for research in these areas.

 

That's an incomplete answer in connection with ME, also known as chronic fatigue syndrome in respect of leveraging international co-operation to accelerate (a) biomedical research and (b) treatments for (1) ME. It says nothing except 'unmet need'. They would argue that the 2021 NICE Guideline advises clinicians and it's for the ICBs to finance local services.

 

I did a search from 1 Oct and 30 Oct 2024. Here's the link. Find written questions and answers - Written questions, answers and statements - UK Parliament

 

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the adequacy of funding allocated to research into (a) myalgic encephalomyelitis and (b) long covid.

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• Hansard source(Citation: HC Deb, 28 October 2024, cW)

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the potential merits of allocating more funding for research into (a) myalgic encephalomyelitis and (b) long covid.

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• Hansard source(Citation: HC Deb, 28 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
The Department funds research in health and social care through the National Institute for Health and Care Research (NIHR). The NIHR and the Medical Research Council (MRC) are committed to funding high-quality research to understand the causes, consequences, and treatment of long COVID and myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and are actively exploring next steps for research in these areas. This includes a roundtable I hosted on long COVID on 17 October 2024, which included discussion on how long COVID research is relevant to other post-viral syndromes and how to stimulate the research community to undertake future research.

Over the last five years, the NIHR has invested almost £2.3 million in research programme funding for ME/CFS. In addition, the NIHR and the MRC are also providing £3.2 million of co-funding towards the DecodeME study, which aims to understand if there is a genetic component to the condition, and in doing so increase our understanding of ME/CFS to support the development of diagnostic tests and targeted treatments.

In the same period, the Government, through the NIHR and the MRC, 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 funding 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.

The NIHR welcomes funding applications for research into any aspect of human health including ME/CFS and long COVID. These 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. In all areas, the amount of NIHR funding depends on the volume and quality of scientific activity.

Publishing the consultation response and delivery plan for ME/CFS is a key priority for me.

 

Tessa Munt Liberal Democrat, Wells and Mendip Hills
To ask the Secretary of State for Health and Social Care, whether the delivery plan for ME/CFS will include measures to improve the safety of NHS care for patients with ME.

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• Hansard source(Citation: HC Deb, 29 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.


Tessa Munt Liberal Democrat, Wells and Mendip Hills
To ask the Secretary of State for Health and Social Care, if he will make an assessment of the potential merits of ring-fencing biomedical research funding for ME.

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• Hansard source(Citation: HC Deb, 29 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.


Tessa Munt Liberal Democrat, Wells and Mendip Hills
To ask the Secretary of State for Health and Social Care, what assessment he has made with the Chancellor of the Exchequer of the potential impact of (a) ME and (b) long covid on economic growth.

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• Hansard source(Citation: HC Deb, 29 October 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
The Department of Health and Social Care has indicated that it will not be possible to answer this question within the usual time period. An answer is being prepared and will be provided as soon as it is available.

 

John Martin McDonnell Labour, Hayes and Harlington
To ask the Secretary of State for Health and Social Care, how codes are created for the SNOMED CT classification system in primary care.

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• Hansard source(Citation: HC Deb, 13 November 2024, cW)

John Martin McDonnell Labour, Hayes and Harlington[/paste:font]
To ask the Secretary of State for Health and Social Care, if he will ensure that a code is created for myalgic encephalomyelitis in the SNOMED CT classification system in primary care.

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• Hansard source(Citation: HC Deb, 13 November 2024, cW)

Karin Smyth Minister of State (Department of Health and Social Care)[/paste:font]
Codes are created for SNOMED CT by one of the following organisations:

- UK National Release Centre (NRC), hosted by the Technology and Information Standards (TIS) group in NHS England;

- SNOMED International, a not-for-profit organisation that owns, administers and develops SNOMED CT;

- any other NRC in any other SNOMED CT member country.

All requests made to NHS England must be compliant with the Editorial Policy and are processed in accordance with the SNOMED CT UK Edition Governance and Change Request Process. Concepts are added or changed in SNOMED CT by NHS England terminologists in line with International and UK Editorial Principles as defined by SNOMED International at the recommendation of international clinical advisory groups. The authoring process includes a technical quality assurance and peer review. Once the authoring process has been completed and quality assured, the files are published on the Terminology Reference data Update Distribution website.

There is currently a code in SNOMED CT for myalgic encephalomyelitis. The Fully Specified Name (FSN) is ‘Chronic fatigue syndrome (disorder)’. The FSN for a code is not intended for use by a clinician. Instead, a clinician is expected to make use of the synonyms for the code, which include myalgic encephalomyelitis.

Clinical systems usually display a ‘preferred term’, deemed to be the most clinically appropriate way of expressing a concept. The preferred term for the code ‘Chronic fatigue syndrome (disorder)’ is ‘Chronic fatigue syndrome’.

NHS England is reviewing the preferred term to align it with the current most clinically appropriate term for the UK, with the preferred term ‘ME/CFS - myalgic encephalomyelitis/ chronic fatigue syndrome’ being considered.

 

Tim Roca Labour, Macclesfield
To ask the Secretary of State for Health and Social Care, what steps he is taking to provide support for people with (a) long Covid, (b) chronic fatigue syndrome and (c) ME.

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• Hansard source(Citation: HC Deb, 15 November 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care[/paste:font]
Since 2020, the National Health Service in England has invested significantly in supporting people with long COVID. This includes setting up specialist post-COVID services nationwide for adults, and children and young people, as well as investing in ensuring general practice teams are equipped to support people affected by the condition.

As of 1 April 2024, there are more than 90 adult post-COVID services across England, along with an additional ten children and young people’s hubs. These services assess people with long COVID and direct them into care pathways which provide appropriate support and treatment. General practitioners will assess patients that have COVID-19 symptoms lasting longer than four weeks and refer them into a long COVID service where appropriate. Referral should be via a single point of access, which is managed by clinician-led triage.

Over the last five years, the Government, through the National Institute for Health Research (NIHR) and the Medical Research Council (MRC), 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 funding 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

It is a priority for the Department to publish the final myalgic encephalomyelitis / chronic fatigue syndrome (ME/CFS) delivery plan, and it is our intention to publish a consultation response summary later this autumn. We cannot comment on the exact content of the final delivery plan at this time, but it will be shaped by the consultation responses, along with continued close engagement with stakeholders, with three broad themes of attitudes and education, research and living with ME. We aim to publish in the winter of 2024/25.

The Department is also currently working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes.

Additionally, the Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. In 2020, the NIHR and the MRC came together to fund the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. Further details of the study are available at the following link:

www.decodeme.org.uk

 

Complete Potemkin health care stuff. They could have a single cardboard model clinic for all that it matters.

 

Somebody could usefully ask how many of those services are due to close in the next few months (as my local one is), or have already closed, because of denial of funding.

 

And at how many of them patients usually see a doctor when they attend, which is obviously critical if the NHS is to build an evidence base on how to manage people with ME/CFS and long Covid.

 

Steve Race Labour, Exeter
To ask the Secretary of State for Science, Innovation and Technology, if he will take steps to prioritise research funding for myalgic encephalomyelitis.

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• Hansard source(Citation: HC Deb, 19 November 2024, cW)

Steve Race Labour, Exeter[/paste:font]
To ask the Secretary of State for Science, Innovation and Technology, if he will prioritise funding for research on the impact of myalgic encephalomyelitis on women.

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• Hansard source(Citation: HC Deb, 19 November 2024, cW)

Feryal Clark Parliamentary Under Secretary of State (Department for Science, Innovation and Technology)[/paste:font]
UK Research and Innovation’s (UKRI) Medical Research Council (MRC) has invested in research into Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) for many years, awarding £6.6 million in this area since 2012.

This includes through DecodeME, the world’s largest ME/CFS study, via strategic co-funding with the National Institute of Health and Care Research (NIHIR), which aims to find genetic factors to better understand ME/CFS disease pathways and unlock future treatment pathways. Initial results of the DecodeME study, posted on NIHR Open Research, include consideration of the impact of ME/CFS on women.

UKRI continue to encourage high-quality proposals across their funding opportunities, maintaining an open highlight notice to encourage ME/CFS research. MRC also co-funded the ME/CFS Priority Setting Partnership to identify research priorities for ME/CFS, led by people with ME/CFS, their carers and clinicians, and facilitated by Action for M.E.

 

Munira Wilson Liberal Democrat Spokesperson (Education, Children and Families)
To ask the Secretary of State for Health and Social Care, when he plans to publish his Department's final delivery plan on myalgic encephalomyelitis (ME).

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• Hansard source(Citation: HC Deb, 9 December 2024, cW)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
The final myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), delivery plan is a priority for the Department, and we aim to publish it in March 2025. We cannot comment on the exact content of the final delivery plan at this time, but it will be shaped by the consultation responses, along with continued close engagement with ME/CFS stakeholders, with three broad themes of attitudes and education, research, and living with ME/CFS.

 

They're never releasing this, are they?

Yeah, they're not ever releasing this, not anything resembling a plan anyway.

 

Jo Platt
Labour
Leigh and Atherton
Commons
To ask the Secretary of State for Health and Social Care, what assessment his Department has made of the adequacy of implementation of NICE guideline NG206 on myalgic encephalomyelitis.

Answer

Andrew Gwynne
Labour
Gorton and Denton
Commons
Answered on
12 December 2024

No assessment has been made on the adequacy of the implementation of National Institute for Health and Care Excellence (NICE) guidance NG206 on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS). NICE guidelines are not mandatory, but the Government does expect healthcare commissioners to take the guidelines fully into account in designing services to meet the needs of their local population, and to work towards their implementation over time.

There are steps that the Government is taking to improve care for patients with ME/CFS. It is a priority for the Department to publish the final ME/CFS delivery plan. We cannot comment on the exact content of the final delivery plan at this time, but it will be shaped by the consultation responses, along with continued close engagement with stakeholders, with three broad themes of attitudes and education, research, and living with ME/CFS. We aim to publish it at the end of March 2025.

The Department is also currently working with NHS England to develop an e-learning course on ME/CFS for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes.

Additionally, the Government funds research into ME/CFS through the National Institute for Health and Care Research (NIHR) and the Medical Research Council (MRC), through UK Research and Innovation. In 2020, the NIHR and the MRC came together to fund the world’s largest genome-wide association study of ME/CFS. This £3.2 million study, termed DecodeME, will analyse samples from 25,000 people with ME/CFS to search for genetic differences that may indicate underlying causes or an increased risk of developing the condition. Further details of the study are available at the following link:

www.decodeme.org.uk

 

Tessa Munt Liberal Democrat, Wells and Mendip Hills
To ask the Secretary of State for Health and Social Care, whether his Department plans to publish the findings of the consultation entitled Improving the experiences of people with ME/CFS: interim delivery plan, published on 9 August 2023.

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• Hansard source(Citation: HC Deb, 19 December 2024, cW)

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

We published a summary report of the responses to the 2023 consultation on the interim delivery plan on 19 December 2024. The responses to that 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 March 2025. The plan will focus on boosting research, improving attitudes and education, and bettering the lives of people with this debilitating disease.

The report is available at the following link:

https://www.gov.uk/government/consu...ces-of-people-with-mecfs-consultation-outcome

 

Jo Platt Labour/Co-operative, Leigh and Atherton
Groups such as Action for ME and Long Covid Support tirelessly advocate for improved care for over 2 million people living in the UK. How will the Minister ensure that NHS reforms deliver timely diagnosis, effective treatment and long-term support for those affected?

• Link to this speechIn context Individually
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• (Citation: HC Deb, 7 January 2025, c728)

Andrew Gwynne The Parliamentary Under-Secretary for Health and Social Care
My hon. Friend raises a really important point. NHS England is due to complete a stocktake of long covid services throughout England at the end of this month. That will provide an accurate in-depth overview of not only long covid services but ME/CFS—myalgic encephalomyelitis/chronic fatigue syndrome—services. The stocktake will provide a comprehensive and accurate national picture, identify key challenges and make strategic recommendations for future service improvement, development and assurance.

 

For the avoidance of such doubt:

1. Why is Long Covid not given by Hansard the courtesy of capital letters ? Is Hansard still programmed to read Long as an adjective with no Long Covid in its vocabulary, or must I ask Boris ? Hansard would not dare venture an "me/cfs". Humph.

Spoiler: Just because Long Covid is the Junior and ME / CFS is the Senior

Just because Long Covid is the Junior and ME / CFS is the Senior (um - so might the coupling mean one spawned the other and if so why not look for a completely unknown pathogen conferring susceptibility, instead of hunting the usual unlikely unavoidable suspects

Or would that make lepers of people already scapegoated as the hated pariahs of gory yore

Either way - Long Covid can be misled to try but it cannot dissociate its own unhappy unwanted rejected profile from ME/CFS - we were and are and remain in this together. Long Covid SOS can volunteer its volunteers but will not be lifted out into exceptional trusty privilege reserved for the brokers.

2. Does this mean that England has until the end of January to finish taking stock (of which period), or does this mean that the English stock as still outstanding on that day will be taken into the record then ?

£. Or might this accounting go back further (eg 2020-2024), accountably, if each serving Long Covid clinic was at that time accountable at all to anyone, before filing its closing account ?

 

.
January 7th post #696

Memo

Today is Monday January 27th.
This Friday is January 31st
The end of the month

When our MP questions get answers

This week we will be told
how Mr Streeting
will ensure
that NHS reforms
deliver:

* timely diagnosis
* effective treatment and
* long-term support

for those affected

So as Mr Streeting said:

NHS England is due
to complete a stock-take ...
...at the end of this month

That will provide an
accurate
in-depth
overview
of . ME/CF .. services

The stock-take will:

* provide a comprehensive and accurate national picture

* identify key challenges

* make strategic recommendations for future service

- improvement
- development
- assurance

Won't that be nice? No more suspense

Now I am wondering if the Q&A sessions are every week or every month, on a Wednesday, and what is the deadline for an MP to table a Question, also did Labour schedule all these disclosures for before, or after, or in, the next Q & A session

Surely not IN the session. We can surely have this grown-up conversation with our MPs properly briefed before-hand.

Sounds like an audit of the CFS Clinics, and as good as completed already

 

.
Another, coincidental Question & Answer on Jan 7th


Vikki Slade
Liberal Democrat Spokeswoman
(Housing, Communities and Local Government)

Will the Secretary of State confirm what is being done

- to ensure that patients with rare and complex conditions
- such as functional neurologic disorder and achalasia,

can access consistent and co-ordinated care,

- including referrals to the multidisciplinary teams
they need
- for the different symptoms they experience?

• Link to this speech In context Individually
• (Citation: HC Deb, 7 January 2025, c732)

Wes Streeting
Secretary of State for Health and Social Care

The hon. Member is right to raise cases where there are

* multiple comorbidities or
* complex conditions

requiring a range of care services.

- That is why we need to design services around the patient,

- not expect patients to contort themselves around the services.

Our approach to neighbour-hood health services
- should make a real difference in that regard,
- but we have to go further and faster
- on health and care integration,
- and we absolutely will

• Link to this speech In context Individually

--------------

Spoiler: This is marvellous. We can have...

This is marvellous. We can have a revival of everything attempted over the last 30 years, including bespoke, tailored, person-centred service, and the pre-requisite personal budgets which stop bulk-funded, trading sub-contractors, organising us, only for their own convenience

i.e "we need to design services around the patient, not expect patients to contort themselves around the services"

Bliss. Mt Streeting begins to sound perspicacious.

Trading sub-contractors are:

- the local health services (and their sub-sub contractors eg GPs and their sub-sub-sub contractors)

- the local governments and their sub-sub-contracting community services

- and so on and on

Won't it be nice when Mr Streeting moves "faster and further" on the co-ordination of health services and community services. So I get the personal budget, with the customer choice, customer services and customer satisfaction, in return for my good custom. Then I can "access consistent and co-ordinated care," as intended

So it all gets organised around me, the customer. Not around the trader buying it for me i.e in my name

The services can all retain their infra-structures, and their commercial, state and charity sectors, just bill me instead, as intended by NHS Continuing Care (Personal Budget), and as planned by Teresa May (before she got deposed)

Then I can deliver the missing quality control, the missing conferencing (rebranded as "meeting 5-10mins"), the missing co-ordination (rebranded as "integration"), and the missing professional networks (rebranded as "multi-disciplined teams"). I can be the person "requiring a range of care services"

Also I can discipline the multi-disciplined net-workers (rebranded as "teams"), if defaulting in service (to me), or just not needed and unwanted

This is the only way our delivery plan can be feasibly implemented (feasible means efficient and economical).

Happily Mr Streeting also understands, perfectly, what bespoke access is required by the rare complications of ME/CFS, eg the nutritional failures, "requiring a range of care services" which specified networked referrals will be "designed around [and by] the patient", who need never starve again

He just has to authorise the permissions, for just such rare complications, to "access consistent and co-ordinated" service i.e the bespoke medical feeds already available for unspecified conditions

So that makes 2 memos:

- disclosures this week on planned ME/CFS delivery (see previous post)
- provision promised for all sorts of diverse, rare complications (this post)