The All Wales Adult CF centre looks after the vast majority of adult Welsh CF patients. We are a multi-disciplinary team looking after just over 300 patients, which we follow regularly. Our patients are spread across a large footprint, which has often been a challenge as some face long journeys to attend their clinics or exercise classes.
Pre-COVID-19 we had already started to address some of these challenges, by offering virtual clinics over Skype to those that found it difficult to come in person. Some of these patients were also offered one-to-one phone consultations with our psychology team, to avoid having to come in several times for different appointments. We are always working to improve the services we offer, but when the coronavirus outbreak reached the UK things had to move extremely fast, and we quickly set-up and deployed a number of new or modified interventions.
The first thing was to enhance our virtual clinics. We switched from Skype to Accurx and then to Attend Anywhere as a platform and we extended the service to all patients, not only to those that found it difficult attending in person. It was taken up eagerly and we had over 200 video consultations in the first month, with high satisfaction rates in a challenging and dynamic clinical environment.
These virtual clinics are multidisciplinary and generally include a clinical nurse specialist, a physiotherapist, a dietitian and a CF clinician, to be able to cover all aspects of CF management including exercise and nutrition all in one session. More specialists can attend depending on the patient’s requirements, of course. We used to run multi-disciplinary clinics before, but as the different specialists can now log in to the call from wherever they are, this has made it easier to have all the skills we need in each clinic.
For the patients that required mental health support, and that would generally have one-to-one sessions with the psychology team either in person or by phone, we introduced video consultations, something that was very well received by both patients and team, as they realised that the video element of it enhanced communication during sessions with the psychology team.
Another innovation brought by COVID-19 was the introduction of a weekly Support/Information group session, held after standard working hours over Zoom, open to all our patients. People living with CF had been instructed to shield at home, and had to navigate changing guidelines, some had to take leave from their job while others ended up living alone for weeks without any contact. It’s a very diverse group with different needs. What we did was to arrange a regular session every Wednesday evening, managed by the psychology team, based on a topic chosen from the patients. We ran sessions on a variety of topics such as shielding, exercise during lockdown, guidance on masks, medications and on employment rights; in each of these we invited one or more experts in the area to answer questions and concerns directly.
CF can become quite isolated especially in the current situation. Being able to chat with or share stories or even just listen to others experiencing ur experiences has been great. You understand you’re not alone
The last new service we introduced is what we called the Virtual Leisure Centre. Exercise is part of the treatment for people with CF, not just a way to improve wellness, so we made sure that we continued to offer it. The classes are over Zoom, with all of our community welcome to attend. Each class is open to eight to ten patients at the time and delivered by an exercise technician while a qualified physiotherapist supervises and opens each session with a safety check. We called it Leisure Centre because we offer many different types of exercise classes, including aerobic, spin, strengthening and body conditioning, so it’s a bit like a gym at home. We have been able to tailor the classes to enable both people awaiting transplant and those with higher level physical abilities to exercise alongside each another.
We are now running 15 sessions a week, at different times of the day, including after normal “work” hours in the evening, to allow the patients that are working a 9-17 job to be able to join. Our exercise and physio team have introduced staggered hours and rotas to be able to cover all classes, and help with social distancing within the team. We have worked hard to establish this way of working recognising the risks and benefits of this way of delivering group classes. Throughout our organisation there has been recognition that this is a problem that needs solving and a considerable amount of work has been done to make this a safe and secure solution.
We had such a positive feedback for this service.
It allowed some people with CF to exercise as a group for the first time as transmission of respiratory infections between CF patients can be very dangerous. Doing the classes on video-call has given them perspective on their condition and helped build camaraderie.
I’ve really enjoyed the Virtual Leisure Centre and hope this continues after the pandemic. Exercise classes can be quite expensive so this has been amazing. It’s been really nice to do an exercise class where I don’t feel conscious about coughing
We have been running for a few months now, and this has allowed us to collect plenty of evidence of the effectiveness and value of these interventions. Because of the geography of our area, this new virtual approach works well for both us and our patients, and we would like to continue with this model even after we emerge from the pandemic. It would be great if this model could be expanded to other patient groups too, as distances are a big challenge in our community.
So, one of our next steps will be putting in a bid to keep the service going. Resuming “business as usual” will continue to be challenging in light of COVID and we are keen to be able to build upon the virtual services we offer to our patients and continue to redesign the CF service in partnership with people with CF. We are instituting a Virtual Group therapy for CF patients called a “Living Well with CF group”