Question to the Department of Health and Social Care:

To ask His Majesty's Government what steps they are taking to ensure accurate coding of a diagnosis of myalgic encephalomyelitis on both primary and secondary care records.

The National Institute for Health and Care Excellence’s (NICE) guideline, Myalgic encephalomyelitis (or encephalopathy)/chronic fatigue syndrome: diagnosis and management, published in October 2021, outlines the expectations for inpatient care for patients with severe myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome (CFS), who require hospitalisation.

The National Health Service commissions services across England that provide support for people living with ME. In October 2023, the British Association of Clinicians in ME/CFS published the ME/CFS National Services Survey 2023. This report provides insight into the services being delivered for adults, children, and young people with ME.

No assessment has been made of the extent of hospital compliance with the NICE guidelines on ME. It is the duty of clinicians to keep themselves appraised of best practice, in particular guidance issued by the NICE. Whilst guidelines are not mandatory, clinicians and commissioners are expected to take them fully into account when designing services that meet the needs of their local population. The NICE promotes its guidance via its website, newsletters, and other media.

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. The Medical Schools Council will promote the NHS England e-learning package on ME to all United Kingdom medical schools, and encourage those schools to provide undergraduates with direct patient experience of ME.

Systematized Nomenclature of Medicine Clinical Terms (SNOMED CT) is used in the NHS to ensure accurate coding of medical conditions, including ME, in both primary and secondary care records. Within SNOMED CT, all content for ME is contained within a single overarching code, with linked codes for mild, moderate, and severe forms. These can be used by all NHS healthcare providers, including general practitioners. It is estimated that there are over 250,000 people in England and Wales with ME.