Guidance on managing patients with severe ME in hospital from The Royal Devon University Healthcare NHS Foundation Trust

As the plight of people with severe ME who have been hospitalized continues to get media coverage, we have chosen to focus of our ME Awareness Campaign 2025 on this. In our summer 2024 newsletter, we provided information on relevant guidance and reasonable adjustments for people with severe and very severe ME who are going to be admitted to hospital

Dr Anthony Hemsley, medical director of The Royal Devon University Healthcare NHS Foundation Trust, RDUH NHS FT was tasked to write clinical guidance by Deborah Archer, the coroner who heard Maeve Boothby O’Neill’s inquest last year. It is authored by the trusts’ clinical matron for patient safety, Clinical Governance Medicine and Community Care Groups. It was approved by the clinical effectiveness committee in November 2024 with trust wide responsibility.  The document, described as a template, is entitled Planned and unplanned admission process for severe or very severe adult ME patients-clinical guidance and is available on RDUH’s website

The template recognises the difficulties people with severe and very severe ME face when going into hospital whether for a planned or unplanned admission, and looks at how best to address and overcome them.

It states, ‘where possible, hospital admission will be avoided because it is recognised that there is a significant negative impact on severe and very severe patients with ME/CFS when they are exposed to the hospital environment which can have long-term sequelae.’

The template looks at planning for an elective admission and advises staff what to do if it is an emergency admission via A+E. The community nursing team should have already discussed the patient’s wishes around an emergency admission. This should be down when the patient goes onto their caseload. The aim of this is to aid decision making at the time of the emergency.

 It identifies that there should be ‘a clear aim and purpose’ for an acute hospital admission.

For an elective admission, it recommends extensive planning be undertaken by the community matron who would liaise with the ward and senior hospital staff, (that is ward managers, clinical matrons and care group professional structures) to arrange a bed location and to brief staff. It recommends patients with severe ME are admitted directly to the ward.

It suggests an individualised care plan be drawn up by the admitting clinician and the multi-disciplinary team with input from the patient and/or carer/nominated advocate. This would outline the best bed location, travel to hospital etc. A hospital passport would provide information about the patient.

For an emergency admission, it says a flag will be put on the person’s electronic hospital records providing relevant information to the acute team and for the clinical matron of the admitting ward to arrange a team meeting promptly with the relevant community clinicians to provide a handover and develop an individualised care plan.  

The template looks at other aspects of inpatient care such as the environment and the reasonable adjustments that may be required such as a side room on a ward where noise can be reduced where possible and a low stimuli environment along with the adjustments to clinical care that may be needed such as less vital sign monitoring or the use of a portal X-ray machine so the person can stay in their room. Furthermore, it says there should be close working between the community and acute teams with ‘a clear handover and transfer of care at admission and discharge.’

The template states ‘it is important that all staff on the ward are supported to understand the reasoning behind any adjustments in the way care is delivered’ and the trust will provide training for this.

This document also takes into consideration the role of the family carer and how best they can be supported if they are providing care to the patient outside normal visiting times, such as parking clearance, accommodation and potentially giving them meals on the ward. It acknowledges the role a family carer may provide in care provision saying the patient, relatives and staff ‘will need to agree what support they will be offering and how they will work together with staff to deliver the care needed for the patient.’ This template also supports carers assisting the person with severe ME with communication.

This guidance opens the door to staff ‘adopting a different approach to medical care’ and has been well thought through. It also raises the awareness of severe ME, and it would be good to see such guidance for healthcare professionals in all hospitals.