As you will no doubt be aware, Stripy Lightbulb CIC attended The OT Show at the end of November 2019. Our stand was certainly a hive of activity and we were very pleased with the number of powerfully positive conversations we had with Occupational Therapists during the two-day event. So many OTs admitted to not knowing much about the condition other than fatigue despite regularly having M.E/C.F.S patients under their care. The need for Stripy Lightbulb CIC’s e-training was validated at the OT Show! There were, of course, Occupational Therapists who remain convinced that the disease is psychological but here at Stripy Lightbulb CIC we fully understand that decades of misinformation and disbelief will not be overcome overnight. M.E/C.F.S is a ‘work in progress’!
We met Chantelle Martin, a Senior Occupational Therapist, Sussex Community Foundation Trust. Chantelle overwhelmed all Stripy Lightbulb CIC’s team members with her enthusiasm for change and empathy with patients with the illness. MD Sally asked her to write some words for us about Occupational Therapy and M.E/C.F.S. Read Chantelle’s thoughts on Occupational Therapists and M.E/C.F.S here:
What Occupational Therapists need to know about ME/CFS when working with patients debilitated by the condition.
I met Sally and her amazing team when visiting the OT show in Birmingham this November, I made a beeline for the stall as this is an interest area of mine after encountering more and more patients with the condition during nearly 5 years as a community Occupational Therapist, working in a team encouraging self-management of long term conditions. It quickly became apparent we had a shared vision and approach in how to work with people with ME/CFS. In fact, it was one of the most powerful conversations of my time at the OT Show.
Patients I work with have described being “let down” or having “given up” with healthcare professionals. The focus has been on identifying the cause, often involving harrowing questioning searching for abuse history or prescribing fatigue treatment using graded exercise programmes that they feel “make me worse.” Many patients cannot access specialist services as they do not meet requirements for the team or cannot physically get to programmes or appointments so do not bother. In our local area, the specialist CFS team does not visit patients at home therefore there is no service that will help individuals too debilitated to get to a 2-hour group session. I have found that many patients do not fit our service criteria and I have had conflict with team members to accept referrals to make a difference.
Occupational Therapists are in a prime position to support, advocate and empathise with an individual’s lived experience. Our Occupational Science theory base and knowledge of assessing not just the person and their symptoms, but the environment and the occupations an individual needs and wants to do, should mean we are well equipped to help and support BUT we need to apply these skills in our conversations and treatment plans! We need to understand the myths and history of how the condition is perceived, ditch the medical model approach and consider the most appropriate way to truly understand how the condition affects each of our patients. We need to consider all symptoms, comorbidities, lifestyle, environment and what occupations have the most meaning to individuals. Perhaps this means abandoning service assessments and selecting more appropriate assessment tools?
We need to educate others that it is a neurological condition, not psychological and believe that the patient is the “expert” of themselves.
Then, we need to consider whether the guidelines for treatment are accurately evidence-based to be realistic from what we have understood. We need to work alongside the individual to manage a variety of symptoms and engage in meaningful activity using grading and adaptation. I have worked with a young mother who wanted to fulfill her mother role so supported her to grade a baking session to allow her children to plan and participate in a family activity. This was more important than the guidelines for physical activity she was given for diabetes having spent the morning informing a health professional how her CFS affected her Activities of Daily Living. I have supported a young woman to cope with her condition, improve personal care and praise her success in craft youtube tutorials which brings meaning into her enclosed world of her bedroom. I also have used a sensory approach helping patients understand their environment and triggers which affect Occupational Performance and plan pacing for the activities they need and want to do. The feedback has been overwhelming and often hear from patients: “ I feel let down and angry at medical professionals.” “ You are the first person who has listened and really ‘got’ me”.
Having completed the training provided by Sally the idea of brain inflammation makes sense to me and how the areas of the brain affected relate to the symptoms experienced. Using a range of Occupational Models, Frames of Reference and Approaches we can support patients gain meaning and Occupational balance in their world. Colleagues I have spoken to either know nothing about the disease or assume trauma/psychologically related.
We need to upskill ourselves and use a variety of tools to support individuals until evidenced-based treatment is found.