Our Engagement ME/CFS Support Group
In today’s ‘Our Impact’ report we look at recent visits to two groups in Preston and Chorley that support those living with Myalgic Encephalomyelitis (ME) and/or chronic fatigue syndrome (CFS). We had conversations with 11 people, and focused on issues around access to services and support after diagnosis.
The ME/CFS Service, run by Lancashire and South Cumbria Foundation Trust (LSCFT), aims to provide supportive, holistic, patient-centred advice to aid acceptance, education and self-management for adults with mild or moderate ME/CFS.
Both groups talked to us about issues around diagnosis and support. Patients explained that they felt abandoned by healthcare professionals after being diagnosed with ME, being left with little help, support or follow-up treatment. They also expressed their feelings about how there is no follow-on communication about new medication or new developments, and they feel out of the loop.
“No up-to-date information for patients. New patients are told about new medication and new techniques, but I feel they forget about patients who have already been diagnosed.”
Concerns were raised about the awareness of ME and how more training is needed for healthcare professionals around this. Also, health professionals don’t always understand how someone who has ME feels and how the condition can change very quickly.
“Doctors don’t understand that living with ME can affect you in many different ways including how you will feel the day of an appointment. You can get up, get ready and then the travel can floor you. They then expect you to speak with them and talk about your condition which isn’t always easy to do.”
Both groups spoke in depth about how it can take a long time to diagnose ME, and noted that even after getting a diagnosis information on the condition provided by health professionals is limited. It is evident that participants felt communication was poor and support inadequate.
Participants also told us that they were often unsure whether they were feeling ill at any particular time because of their ME or something else. Moreover, some feel that healthcare professionals too readily explain their symptoms in relation to ME, rather than checking for other causes.
Some suggestions for better support included yearly checkups for patients to establish how they are feeling, and regular medication reviews. Also, a need for healthcare professionals to better understand what ME is and better access to support (including home visits).
These two groups, then, highlighted several barriers to support and help after a diagnosis of ME, and how difficult it can be to get follow-up treatment.