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<p>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.</p><p>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 <em>ME/CFS National
Services Survey 2023</em>. 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.</p><p>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.</p><p>The Department published <em>My full reality:
an interim delivery plan for ME/CFS</em> 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.</p><p>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.</p><p>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.</p>
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