UK House of Lords/ House of Commons Questions

None of this really takes into account the fact that the professional associations have declared their hostile intent and refusal to implement the guidelines, and that not a single clinic, let alone care board, has actually implemented it as intended, following through on that prior declared hostile intent.

When facts don't matter, no system can function. The purpose of a system is what it does, if a system is openly hostile to doing its job, then that's its purpose, officially. A hostility that has been openly declared and followed through.

But whatever thoughts and prayers. Just go on pretending that people are blatantly refusing to fulfil their duties, I'm sure it won't ever affect you or someone you love negatively.

 

Daisy Cooper Liberal Democrat Spokesperson (Health and Social Care), Deputy Leader, Liberal Democrats
To ask the Secretary of State for Health and Social Care, what progress her Department has made on the Interim Delivery Plan for ME/CFS.

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• Hansard source(Citation: HC Deb, 20 May 2024, cW)

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
In August 2023, the Department published My Full Reality, a cross-Government interim delivery plan on myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), which sets out a number of actions to improve the experiences and outcomes for people with the condition through an expansion of research, better education of professionals, improvements in attitudes towards the condition, and improvements to service provision.

Alongside the publication of the interim Delivery Plan, we ran a public consultation to gather the views and experiences of healthcare professionals, organisations, and individuals with lived experiences of ME/CFS. The aim of the consultation is to build a picture of how well the interim delivery plan identifies and meets the needs of the ME/CFS community, and to understand where there are any gaps where further action may be necessary.

The consultation received well over 3,000 highly detailed responses, which are in the process of being analysed. The consideration and analysis of these responses is progressing steadily, and we are on track to publish a summary of the consultation responses shortly. The consultation responses, along with continued close engagement with stakeholders, will inform the development of the final delivery plan, which we aim to publish later this year.

 

Fabian Hamilton Labour, Leeds North East
To ask the Secretary of State for Health and Social Care, whether her Department (a) has and (b) plans to provide funding for new treatments for ME or chronic fatigue syndrome.

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

Fabian Hamilton Labour, Leeds North East
To ask the Secretary of State for Health and Social Care, if she will make an assessment of the adequacy of NHS provision of specialist ME or chronic fatigue syndrome services; and if she will take steps to increase the number of clinicians who specialise in ME or chronic fatigue syndrome.

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

Andrew Stephenson Assistant Whip, Minister of State (Department of Health and Social Care)[/paste:font]
The Department, through the National Institute for Health and Care Research (NIHR), provides funding for research projects which aim to understand the underlying causes of myalgic encephalomyelitis, also known as chronic fatigue syndrome (ME/CFS), and find new treatments for the condition. As part of this, the NIHR and the Medical Research Council have funded 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. By helping us to understand ME/CFS better, this research has the potential to lead to new treatments for the condition.

Integrated care boards (ICBs) are responsible for commissioning specialist ME/CFS services that 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 guidance on ME/CFS diagnosis and management, published in October 2021. In addition, in October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey. This report provides insight into the services being delivered for adults, children, and young people with ME/CFS.