On the 13th of November 2024, Karin Smyth (Labour, Bristol South) answered a parliamentary question from John McDonnell (Independent, Hayes & Harlington).
Question
To ask the Secretary of State for Health and Social Care, how codes are created for the SNOMED CT classification system in primary care.
Answer
Karin Smyth, Labour, Bristol South:
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.
Despite SNOMED providing clinicians with a suitable diagnostic code – and the news about the addition of ‘ME/CFS' is welcomed – several challenges remain. We know, for example, that appropriate codes are not being applied to digital medical records which makes it very difficult to ascertain how many people have ME/CFS (or Long Covid) across the country.
SNOMED also allows for illness severities to be recorded and while we have seen an example of this working in one GP practice within the Suffolk and North-East Essex ICB, it is not something that other GPs have been using. This makes it harder for healthcare commissioners to scope new ME/CFS/LC specialist services – especially for those who are worst affected – because they don't have an accurate understanding of local patient numbers and have to fall back on some really dated and more general prevalence estimates.
We will continue promoting the use of SNOMED codes to ICBs and Health Boards and in primary and secondary care services as part of part of the Health & Social Care project.
Russell Fleming Head of Project Development