UK parliamentary question on NICE 2021 ME/CFS guideline implementation

On 25th March 2024 Lord Hunt of Kings Heath laid a written parliamentary question to the Department of Health and Social Care

To ask His Majesty’s Government what assessment they have made of the extent to which the 2021 NICE guidance for myalgic encephalomyelitis/chronic fatigue syndrome (ME/CFS) has been implemented (1) in general, and (2) in relation to the training health and social care professionals on how to employ the new recommendations, (a) establishing a UK-wide network of hospital-based ME/CFS specialist services, (b) making all NHS services accessible and capable of providing personalised ongoing care and support to those with ME/CFS, and (c) ensuring social care provision for ME/CFS is monitored and regularly reviewed.

Lord Markham Parliamentary under-Secretary of State responded on 9th April 2024 –

No formal assessment has been made of the extent to which the 2021 National Institute for Health and Care Excellence (NICE) guidance for myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), has been implemented.

NHS England does not centrally commission services for ME. Services to support people living with ME are commissioned by integrated care boards (ICBs) to meet the needs of their local population, and are not reviewed or assessed by NHS England centrally. In October 2023, the British Association of Clinicians in ME published their ME/CFS National Services Survey 2023. This survey provides insight on the services being delivered for adults, and children and young people, living with ME. A copy of the survey is attached.

In relation to the training of health and social care professionals, it is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. The Department is working with NHS England to develop an e-learning course on ME for healthcare professionals, with the aim of supporting staff to be able to provide better care and improve patient outcomes. This has involved feedback and input from the ME Research Collaborative (MERC) Patient Advisory Group. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage medical schools to provide undergraduates with direct patient experience of ME.

The Department published My full reality: an interim delivery plan for ME/CFS in August 2023, which sets out a number of actions to improve the experiences and outcomes for people living with the condition, including better education of professionals and improvements to service provision. More information about the interim plan is available on the GOV.UK website, in an online only format.

Alongside the publication of the interim delivery plan, we ran a public consultation to build a picture of how well the plan meets the needs of the ME community, and to understand if there are any gaps where further action may be necessary. The Department is currently analysing over 3,000 responses to the consultation on the interim delivery plan on ME, and will publish a final delivery plan later this year.

In relation to the monitoring of social care provision for individuals with ME, the Department has made a landmark shift in how we hold local authorities to account for their adult social care duties, through a new Care Quality Commission (CQC) assessment. The CQC will examine how well local authorities deliver their Care Act duties, increasing transparency and accountability and, most importantly, driving improved outcomes for people, including those with ME, who draw on care and support. The CQC completed five pilot assessments and is now rolling out assessment to all local authorities.

UIN HL3586
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