I was both excited & a wee bit daunted to be awarded a NES AHP Career Fellowship to work in partnership with the Maggies Centre Glasgow, to deliver group based cognitive rehabilitation for people who have experienced cancer related cognitive changes. Alongside this I also planned to develop a clear referral pathway for 1-1 follow up via the existing occupational therapy out-patient clinic.
I have worked as an occupational therapist as part of an amazing Oncology team in NHS Greater Glasgow & Clyde for almost 6 years now. I have been extremely fortunate to learn from some very experienced colleagues of the impact of cancer related cognitive changes.
Following the success of the Transforming Care after Treatment (TCAT) Cognitive Rehabilitation and Support programme, I was fortunate to be invited to undertake Memory and Attention Adaptation Training (MAAT) with Professor Robert Ferguson from University of Pittsburgh. The next step was to collaborate with Maggie’s Glasgow to deliver Memory & Concentration group interventions 2 or 3 times per year, depending on demand, using the original programme.
We got started and were fortunate enough to complete one session. Feedback was good:
“The course and the tutors made me feel like my problems are not so bad. My emotions are becoming less erratic and I now feel in control in everyday situations”
“Very informative and useful”
There were some challenges though. Individuals raised the issue of limited access to transport and/or distance to travel being a barrier to attending the group programme. I was also trying to balance a busy ward workload with moving between sites to deliver the groups.
Then, even bigger than that, the Covid pandemic hit! Myself and the psychologist at the Maggies were obviously extremely disappointed that another group couldn’t be held face-to-face, particularly after positive feedback from participants.
We had to look at a different model of delivery from previous group sessions. We explored the advantages of virtual groups and proposed this option as a way of making the course more accessible and reducing travel and time pressures, for both patients and facilitators.
I was anxious about getting the group started and it seemed to take a long time to get off the ground despite our best intentions. Others on the cohort of AHP fellows appeared to be much further on in relation to their own projects. I found the one-to-one sessions with Audrey (@Audreynesahp) and my mentor Jennifer Cameron (@OTjcameron) reassuring during this time. Re-focusing my efforts to push forward with virtual group sessions even though, at the time, there wasn’t much guidance available regarding these. We then had to explore and agree upon a digital platform to use. This was to be via a digital platform hosted by the Maggies. I had a number of technicalities to address; organising remote working, sourcing electronic copies of the workbooks for participants & presentations to deliver each of the weekly sessions.
Having persevered, Debbie Cook, psychologist at the Maggies & myself managed to allocate dates & recruit a small number of participants to join in a virtual CRCC education programme. On this occasion I emailed the head of psychology at the Beatson West of Scotland Cancer Centre, with regards to identifying patients who may be suitable participants.
Once again, I was nervous about facilitating the groups, I am fairly tech savvy, but how would it work remotely online? Actually quite well, albeit a bit slow, but my broadband held up. Would participants manage to join us when they were having cognitive difficulties? Would I manage to facilitate a group digitally? In the end we were able to have a laugh with participants who were worried about their own lack of experience using video calls and about our own hiccups. My cat even managed to make an appearance in the group!
In a typical group session (1.5 to 2 hrs long), we cover “what is chemo brain/fog” & how it affects three main areas in everyday life:-
- Attention/Concentration – Finding the right words or struggling to follow conversations, getting easily distracted
- Memory – forgetting dates, phone numbers or names you would normally remember
- Executive functioning – Multi-tasking, making plans, solving problems & taking longer to complete tasks
By raising awareness of what memory and attention is it is fantastic to see members share with each other how this impacts on their everyday life. At the end of each session we provided person centred, self-help materials & suggested occupational therapy based interventions & strategies to overcome these difficulties.
It is very exciting to hear patients talk about their experiences of trialling strategies -what worked for them what didn’t. Even with a smaller virtual group this seemed to work well, sharing their problems & how they have overcome them, in a safe, supportive & informal environment. We managed to master the art of presenting a virtual group and participants seemed comfortable & safer with this format under the current pandemic climate. This was particularly important because some of the participants had not left their homes due to shielding and was the first time in a while they had interacted socially.
I was then invited by Anthony Nolan to peer review an information booklet/resources for use by patients post Stem Cell Transplant. My name is now in print.
The NES AHP careers fellowship has given me the confidence to take on these challenges & moving forwards, I am hopeful that further groups can be held in collaboration with the Maggies, & that we will be able to offer 1-1 sessions via the Occupational Therapy outpatient service, upskilling other members of the Oncology team. For more information about this project email: Jennie.Simcock@ggc.scot.nhs.uk. For more information about NES AHP Careers Fellowship AHP careers fellowship scheme click here.
Writer Info:
Jennie Simcock, Specialist Occupational Therapist, National Stem Cell Transplant Unit & Beatson Oncology Centre
Follow Jennie on Twitter @OTJSimcock
AHPs across health and social care. 