11 August 2023
In this month’s eLearning spotlight, we spoke to clinical physiotherapy specialist Sophie Taylor and occupational therapists Mandy Richards and Jill Walker who have worked together for over 15 years and have shared their expertise to develop an online patient education resource for patients with fibromyalgia.
Why did you get interested in fibromyalgia?
We felt that this patient group would benefit from specialist therapy input, and we had excellent therapy leads and a supportive GPwSI (General Practitioner with a Special Interest) colleague Dr Phil Cumberlidge with who we worked closely and felt the need to invest in these patients.
What are the potential problems with group sessions for education/exercise?
The lack of flexibility was an issue. In face-to-face group sessions, there are often restrictions on who can attend the programme with them. These patients often have brain fog, and listening to a 45-minute session meant it wasn’t a perfect environment for patients to be in. Initially, we thought our online resource would be a poor substitute for face-to-face, but for most, it was more convenient.
Can you tell me a bit about the online resource you developed?
Historically, we offered a six-week face-to-face education programme which introduced patients to fibromyalgia, talking about the benefits of physical activity, energy conservation, pacing, planning, fatigue management, sleep, relaxation, and how to manage flare-ups.
When Covid came, we developed an online resource to ensure we could continue to support patients. We recorded presentations on condition management topics which patients could access in their own time. Our resources encourage active learning through worksheets where patients completed tasks and set goals. We initially offered online sessions for patients to allow interaction and discussion of progress.
The online resources have been extremely well received. Patients have reported that they’re convenient and more accessible when they couldn’t physically meet regularly. It also meant people could watch them with their families and revisit the information as required.
How did you find working together as a group?
We are patient-centred, and we try to work holistically; one of the advantages we have is that we work closely together, so we’re able to continuously tap into each other’s knowledge and expertise. There is a drive for fibromyalgia to be managed more in primary care so we are thinking about how we can share our resources and work more closely with primary care colleagues.
Why is patient education important?
What's emerged over several years is our focus on patient-centred care. It’s about empowering our patients, and ensuring they are provided with the information that they need to allow them to live well with their condition.
We try and enable and empower patients to be confident in condition management. We want patients to have knowledge of local services that may be of benefit to them, such as social prescribing services and other online and community-based services and amenities.
What are the next steps?
We’re continuing to deliver our resources online and are currently up against very challenging waiting times throughout all areas in the Trust. Our focus is on trying to provide support for people living with fibromyalgia in the most effective way. We’ve had to rethink how we offer our services to try to make them as efficient and accessible as possible.
Check out our fibromyalgia spotlight on the eLearning platform, if you prefer the understanding pain pod can also be found on Spotify/ iTunes.