Remote Consulting for People with CFS/ME and FM
Research type
Research Study
Full title
The experiences of remote consulting for people with chronic fatigue syndrome/myalgic encephalomyelitis and fibromyalgia in primary care
IRAS ID
311497
Contact name
Helen Sarah Leach
Contact email
Sponsor organisation
University of Warwick
Duration of Study in the UK
0 years, 9 months, 1 days
Research summary
Research Summary
Chronic fatigue syndrome/myalgic encephalomyelitis (CFS/ME) and fibromyalgia are chronic conditions that have a range of symptoms but are often associated with pain and fatigue. People living with these conditions report difficulties with healthcare professionals, often because there are no clear causes or cures for CFS/ME or fibromyalgia. The advice given to healthcare professionals has been to develop relationships with these patients, where they and the patient work together, to support recovery and function. These relationships are based on communicating well and focusing care on the needs of the individual patient, known as personalised care. These recommendations are found in guidance for chronic pain and CFS/ME, and are supported by the Royal College of General Practitioners, the national body that supports GPs.
The Covid-19 pandemic resulted in most consultations with GPs and other healthcare professionals working in general practice being held remotely, often by telephone or an online platform with questionnaires amongst others. For many patients, remote consulting is effective and acceptable but there is concern that it is not appropriate for certain patient groups and that it may be more difficult to provide personalised care. Suggested explanations for this include difficulties with technology or a difference in how doctors and patients interact with each other when they are not face-to-face.
This study will look at how people living with CFS/ME and fibromyalgia experience remote consulting, something that has not been done in great detail before. Considering that remote consulting will likely remain a large part of general practice, and that the relationships between doctors and people living with CFS/ME and fibromyalgia are important for support, it is crucial that we understand what the experience of remote consulting is for these patients. We will develop recommendations for clinicians and patients based on our findings to assist them when consulting remotely.
Summary of Results
The study team interviewed thirteen people living with Chronic Fatigue Syndrome/Myalgic Encephalomyelitis [CFS/ME] and/or Fibromyalgia. They were asked about their experiences consulting with their GP practice by telephone, video or online. This is known as ‘remote consulting’.
All of the participants talked about how important it was to be believed by their GP. Many found living with their conditions difficult. This was sometimes because they felt clinicians did not believe in these conditions or lacked understanding of them.
There were mixed experiences of remote consulting. It was important for participants to feel listened to during a consultation. Some found remote consulting more difficult as it was hard to communicate clearly, for example being unable to hear on the phone. Some people felt that communicating when in-person was better as clinicians could see body language. Consulting by video sometimes was helpful for this.
Many participants had a clinician they would choose to speak to. Sometimes they would be unable to get an appointment with this person. A remote consultation meant that some participants were more likely to speak to a clinician they did not know. It was more likely that people would have a remote consultation if their problem was urgent. This made their experiences more difficult.
Participants liked having a relationship with a clinician. They felt that this gave better knowledge of their condition and of them as an individual. One person said that having good notes was good enough. CFS/ME and Fibromyalgia were seen as complex conditions. Some participants said that in-person consultations were better at looking at this complexity and seeing them as a whole person. However, this was again helped by having a clinician who had understanding about them and their condition.
There were some things that could be done in both remote and in-person consulting. This included listening to patients and communicating clearly. Some participants suggested ideas to improve care. This included being able to book different types of appointment or to choose a specific clinician to speak with.
REC name
East of England - Cambridgeshire and Hertfordshire Research Ethics Committee
REC reference
22/EE/0130
Date of REC Opinion
26 Jul 2022
REC opinion
Further Information Favourable Opinion