We are pleased to announce we have test run our very first PPE ‘virtual workshop’ – our thanks to the people who came forward to volunteer as a result of last week’s call out and those who participated. The theme was ‘Coping with a rheumatic condition during the Coronavirus lockdown’ and involved through a set of 5 main questions around feeling safe, feeling well, keeping active, mental wellbeing and access to treatment – all designed to initiate discussion and capture the experiences and thoughts of the participants.

Many participants told us they had started to self-isolate before the government issued instructions for everyone and they were all aware of the additional risk factors they might face due to their various rheumatic conditions and medications. They said they currently felt safe at home and they were all in different situations. One person had a partner who still works but goes through a process of ‘decontamination’ as he arrives home. This involves changing out of work clothes and shoes which stay in a different room in addition to handwashing/antibac usage. Shopping wasn’t a problem and most were having deliveries and felt safe with those. No-one was particularly washing the shopping or leaving it for a day; one person had tried it, but felt that the effort had flared symptoms and decided not to whereas another participant had at times been quite anxious and occasionally felt panicky with regards to knowing whether to clean or not clean items coming into the house. Having a child going between households could be a slight concern (but the entertainment and distraction of having them outweighed it). Most people went for daily walks and those in smaller areas such as villages or near countryside felt safer going outside. Some people said they felt safer shopping in smaller, local shops rather than big supermarkets. Dog walking was particularly beneficial to those with a dog and they felt safe doing that.

All participants were missing their usual classes, examples of which are were Zumba, Pilates, Adult Ballet, Aquafit, Hydrotherapy. However, they had managed to replace these with online alternatives, in-house equipment or just going out and keeping active. They felt that sitting for too long was detrimental – making them stiffer and less able to move about when they wanted to and that exercise helps wellbeing. In general, most felt well and were managing. One participant had been unable to have a steroid joint injection which they would have had usually. In terms of sleep, all participants noted that their sleep was normally disrupted anyway, so it hadn’t changed much during lockdown.. One participant had felt that they were comfort eating too start with but stopped and overall many thought their diet had improved – planning their meals more and seeing it as more of an event.

Everyone recognised the need to be patient with the current situation. Those who were retired hadn’t felt there had been an enormous change as they were used to having to keep occupied – although not being able to travel was missed. One person mentioned being able to do some online teaching for grandchildren, which was very much enjoyed by both. In addition to their daily exercise, the participants were gardening, connecting with friends online, sewing, cleaning, sorting, experimenting with cooking and enjoying hobbies such as family history research. Some people felt that planning the day out was a positive thing to do.

All the workshop participants felt they would be able to get advice over the phone if they needed it and one commented that using the nurse advice line had helped to re-arranged their tests. They were missing the check-ups and hydrotherapy and although there could be some anxiety around GP appointments felt it was better than worry about something.

Workshop Top tips:

• Find alternative activities if regular exercise classes have stopped, do them online or something of your own. Just don’t stop.
• Ask for help, people are there for you. Online or in the community. Don’t struggle!
• It’s ok to do nothing sometimes, just rest if you need to.
• Have a variety of things to do, small things, not all big tasks. Things you can pick up and put down easily depending on how you feel.
• Stay in touch with people by whatever means are available to you.
• Don’t watch the news too much. Perhaps check in, but in the middle of the day, so you don’t start and end the day on a negative.

Everyone enjoyed the workshop and felt it worked really well as a first try so the PPE team will now be evaluating how to progress this as a remote engagement option going forward.