Question to the Department of Health and Social Care:

To ask the Secretary of State for Health and Social Care, with reference to section 1.17 of the National Institute for Health and Care Excellence (NICE) guidelines entitled Myalgic encephalomyelitis (or encephalopathy) chronic fatigue syndrome: diagnosis and management, published on 29 October 2021, what steps her Department is taking to help ensure that hospital staff are aware of NICE guidelines for caring patients with very severe myalgic encephalomyelitis.

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 myalgic encephalomyelitis (ME), also known as chronic fatigue syndrome. The guidance states that where possible, patients with ME should be provided with a single room, and that factors such as the level of lighting and sound should be taken into consideration, and necessary adjustments made.

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 in providing better care and improving patient outcomes. 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.

We have finished consulting on My Full Reality, the cross-Government interim delivery plan on ME, which seeks to improve the experiences and outcomes of people living with this condition. We are in the process of analysing the results of the consultation. The views and experiences gathered through this consultation will be used to build a picture of how well the interim delivery plan identifies and meets the needs of the ME community, and to highlight any significant gaps where further action may be necessary. We will publish a summary of the consultation responses, which will inform the final delivery plan being published later this year, in due course.