We are extremely grateful to our patients who responded to this brief survey during 2019. This survey was conducted because we were aware of a risk of closure of NHS CFS/ME specialist services due to limited funding, particularly in response to the changes which were recommended by the Joint Commissioning Panel for Mental Health (2018) that services for people living with CFS/ME should be provided by mental health teams after their revised classification of CFS/ME as a Medically Unexplained Symptom (MUS).
The services provided by NHS specialist CFS/ME teams provide an assessment and diagnosis for people who often struggle with the symptoms of undiagnosed CFS/ME for years, and following assessment these specialist services can offer referrals to other specialists for support with comorbidities (such as Postural Orthostatic Tachycardia Syndrome, or POTS) that lie outside the CFS/ME cluster of symptoms.
The survey was sent to current and recent patients of NHS specialist adult and child services in Bristol and Bath between late April and August 2019. It was a simple survey to limit the burden on participants, and asked the primary question “Do you think that adults and children with Chronic Fatigue Syndrome or ME (CFS/ME) should have access to specialist NHS services for assessment and treatment?” There was an invitation to add free text if desired. No demographic data was collected, to limit the patient burden.
The qualitative data in the free text section was then analysed and the following themes were identified:
1. The importance of there being a specialist service
2. The negative impact of potentially withdrawing a specialist service
3. Benefits of meeting others living with CFS/ME through an NHS service
4. Lack of understanding and support by health care professionals outside of the service
5. Recognition and validation of the condition
6. Offer of self-management support, with CBT and Mindfulness meditation specifically mentioned as helpful approaches
7. Reported improvement in health and function as a result of the support of the services.
Out of the 612 responses before the 23rd July 2019, there were 99.8% positive responses to the primary question, with only one person (0.2%) responding negatively. There were three comments that critiqued Cognitive Behaviour Therapy (CBT) and Graded Exercise Therapy (GET). After this date, the survey URL was shared on social media, resulting in a reduction in the positive responses (from 99.85 to 70.6%), and a rise in negative responses (from 0.2% to 29.4%). There was also then a highly critical focus on CBT, GET and the PACE trial. We were interested to note that these views did not match those initial responses of the NHS patients.
As this finding raises doubts that surveys using social media can accurately represent the experiences of NHS patients accessing specialist services, this survey finding is concerning given the fact that the 2020 NICE review panel used similarly sourced material provided by service user organisations. Therefore, there is a clear case to be made to develop this methodology for the future in order to continue to learn from the experience of NHS patients.
If you are interested to read more, we have included the complete summary of the survey below.
References1. BACME (2019) British Association for CFS/ME. CFS/ME National Services Survey February 2018 Available from https://www.bacme.info/sites/bacme.info/files/BACME%20C FS%20ME%20National%20services%20survey%20March19.pdf [Accessed 27th December 2019]