Question to the Department of Health and Social Care:

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

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.