BC (Before Covid), the Clare, Limerick and Dublin groups organised face to face meetups often and when “C” hit, the groups easily moved to online support which was so appreciated and helped to reduce the physical isolation and anxiety we were all feeling.
Thankfully we now have a vaccination programme underway and even though we are still in some of the darkest days of the pandemic, many of us are hopeful that the end of this physically distanced life is close. I would be one of those optimistic souls and I’ve been thinking about what our peer support community will look in the future and if there is anything we learned from living online.
First though, here’s a couple of the benefits we’ve seen through moving the platform online.
The Benefits
Increase in Numbers
In March 2020, when Ireland experienced our first lockdown, the numbers of people with diabetes looking for information online exploded. I’m one of six volunteers who are administrators in one private diabetes facebook group and I can testify that our membership grew in those months by several hundred people with lots of new faces joining every time a virtual event was organised. The new faces bring with them new experiences to share, new information and new motivation.
Removing the Distance Barrier
The time involved to attend face to face meetups is significant and the online event removed this barrier, we actually had people attend one of our events from the UK, the US and lots of places in Europe and vice versa. It was great to be able to attend the Friends for Life Conference this year which normally takes place in Florida. Our events were very much focused on the Irish service which doesn’t happen very often, so hearing the surprise from people living the UK at how different and how far behind we are here was something we needed to have acknowledged. We felt heard!
Filling a Large Gap
Many of our diabetes clinics were cancelled in the first and third lockdowns and many staff were redeployed to covid. Some diabetes clinics were available via email and virtually but many people with diabetes struggled to get in touch with their clinics through the telephone and were left feeling abandoned. There were many, many, many questions and HUGE concern and anxiety in our community, especially in the beginning. A lot of the Irish community found this support from the many health professionals on twitter. In Ireland, the Irish online community filled this gap by relaying information from trusted sources and helping to reduce anxiety in the community. As we are now in our third covid lockdown and one where our patient services are again cancelled the online community is growing in numbers again.
There are other benefits to accessing support online and this paper from 2015 is one of my favourites “The Emerging Diabetes Online Community”
The Disadvantages
The Neglected
Sadly, there are many people who do not have access to any of the online platforms, I’m thinking specifically about the type 2 diabetes community here who have been largely neglected due to online accessibility. Support via telephone on a one-to-one basis is labour intensive but not impossible to those who are not “WhatsApp”ers. How do we address this and who should address this? Maybe we in the type 1 community could start fostering the type 2 community a little more so that we have more than just two Type 2 support groups in Ireland.
It’s not the same
While the online meetups are better than having nothing, they remove the barrier of distance and I know that I am considering incorporating at least one virtual meet-up per year as part of our local group.
Virtual events don’t have the same informality or the same ability to have a casual conversation as face to face but as I said it gives enough to sustain us for now.
The Future of Support
Increase in the Number of Face-to-Face Groups
I do want to say that when we get through Covid and it's no longer a threat, I feel there will be a renewed vigour to meet up in person and I hope this spreads into the diabetes world more and to see more support groups forming nationally. These support groups are also a great way to find out what medical services there are in your area or if there are services lacking and what you could do about it.
People were surprised to learn that there were groups in their area and during some of the meet-ups we identified areas where a group is needed, it just needs one person to take the initiative. After all, if the Wexford group can set up their group just before a lockdown and still succeed then there are no excuses for the rest of us (see feature on Nicola O’Hanlon p.30 in Diabetes Ireland’s member magazine Winter 2020 issue).
More Type 2 Support should be a Priority
There are over 200,000 people in Ireland with type 2 diabetes and there are just two peer support groups and I desperately think this needs to change but it does require a couple of people to volunteer to get it started and once established maintain it. I also think the establishment of a type 2 diabetes support network means doing it old school - physical venue, notices in newspapers, a subscriber's phone list, etc which is definitely more labour intensive but in my opinion it would be worth it for any organisation to take this on in terms of developing steering groups and promoting advocacy.
Combination of Virtual and F2F
Going forward, and because the virtual platform works so well for the type 1 community, I plan to incorporate at least one virtual event per year for the Clare Type 1 Diabetes group so that people don’t have to live with the distance barrier full time.
For now though, we remain online and are counting down the days until we meet again.