Are you interested in using your lived experience and voice to help us shape the future pulmonary fibrosis research?
In the world before Covid, it was our normal practice to meet up as a group every other month and to communicate in-between times by email. Coronavirus put paid to this and as a consequence when lockdown began, we were challenged to find alternative ways of keeping in touch to provide support to one another.
In this regard, WhatsApp proved to be a very simple, cost free and effective way of communicating and we were quick off the mark to set up our "Puffers and Blowers" WhatsApp Group. This allowed members to communicate with one another on a continuous basis rather than through me, acting as an intermediary, and it didn't take long for people to start to contribute and ask questions and offer advice. As I write, we have 22 members enrolled on WhatsApp.
This has been helpful in keeping people in touch but it didn't fully bridge the gap left by the suspension of our meetings. Still looking for ways in which we might do this, we happened upon "Zoom" as a means of hosting "virtual meetings". This audio/visual platform allowed any number of members to join a live discussion at a pre-determined time and date with the great advantage that we could both hear and see each other. We decided that in the first instance we would keep our Zoom meetings as informal as possible so we introduced a coffee morning approach to our gatherings. We held our first meeting on 21st May and they've proved so popular that we now host meetings every fortnight rather than every two months.
Once the initial issues arising out of lockdown had been overcome, namely the absence of letters confirming the extremely vulnerable status of members and the knock on effect of procuring on-line shopping slots, the topics which are raised most frequently on Zoom relate to how to keeping safe in an a Covid environment and family interaction which has proved to be so challenging for many members. We've been joined on one occasion by the lead respiratory consultant at the Northern General Hospital, the specialist nurse team on another and by Jo Ruck (APF) at our most recent meeting, all of whom have made valuable contributions and added new and interesting perspectives to our discussions.
We very much look forward to the time when we can physically meet up again in the same room but until then, I see Zoom and platforms like this playing an important role in keeping us together and enabling us help each other out.
Vice Chair, Sheffield Pulmonary Fibrosis Support Group