3 and a half years ago I set out to set up a peer support group for people living with severe asthma having had experience of peer support, facilitating and running groups with ICUsteps. I held the first meeting in September 2022 and now the last meeting has been held as I call time on the group.
Severe asthma is such a misunderstood condition and I have written before about why I set the group up and the various paths I took and why. You can read the various posts below:
- Severe Asthma Peer Support Group
- Setting Up Virtual Severe Asthma Peer Support Group
- Becoming an independent severe asthma peer support group
- Severe Asthma Peer Support Group is 1 year old
It was a very difficult decision to end the group as I have put so much time into it and I hate having to end something when it is something I feel passionately about but at the same time it was a very easy decision, but ultimately I feel like I have failed. I want to take some time to reflect on the group and the progress it made but also some key learning as well.
Going into setting up the group I knew it was going to be a very difficult task because the severe asthma community is very fickle. Having been a moderator and admin in various support groups there is an unhealthy competitive nature in the severe asthma world about who has the worst asthma and who is on the most medication etc. It is a side of severe asthma I hate which is why a lot of my social media does not focus on my asthma but what I do despite it. I don’t know any other condition where you have this, certainly my other conditions that I have had support for from others has not been like this. I was fed up on the messages with probing questions about my unique treatment regime only to find the person who asked me about it to then be posting they were on it. I digress, I was determined that from the outset the peer support group would be a supportive environment where competition would not be tolerated and the first sign of it the person would be out.
I knew setting the group up on my own would be hard especially as someone with severe asthma and other conditions. My health is a lot more stable than it has been in the past but it is still far from great but due to logistics I could be the only one running it due to the zoom licence I have from an external company who graciously let me use it for the group. This meant that it would all fall on my shoulders as the email attached to the licence was also my own email so could not give that out to others. As a volunteer as well with no external funding any means to get a different method of holding a virtual meeting would come out of my own pocket and learning from my previous experience of running a virtual group using the free meetings that zoom for example do just not work as they are short and it means support groups are capped at 45 minutes and then a new meeting needs to be set up but meetings often last over 2 hours so that would be 3 or maybe 4 meetings would need to be done. It would have been great to have a team of people but logistically this was not possible.
At the outset I thought by setting some guidelines for the group that the group helped to write would ensure the key values of the group would be maintained and this would help prevent the competitive nature that I have seen in severe asthma. I also hoped it would protect all members of the group as there were people from all different backgrounds including those who would be considered as vulnerable adults, but also those working in the health sector and teaching sector too. Despite reminding people of these guidelines which were written by the group it felt like they fell on deaf ears repeatedly and rather than me being a peer I felt like some sort of enforcer made harder when people would no respect what was being said and stopping to think why I was saying something, particularly when it came to asking for medication dose advice etc which put people into tricky situations. In an ideal world it would be great to have an external person these people could be referred on to so I was not being the bad guy, the peer and someone with the condition too but I didnt have that luxury so had to be them all rolled in to one.
In the end it did feel like a chore to run the group due to the politics and managing different personalities to make sure that everyone felt an equal and that everyones stories was valid no matter how serious or not it was it is their own individual experience which everyone will feel differently depending on what they have experienced in the past.
Peer support is something I have value and have benefitted so much from and this is what made the decision to stop the group so difficult but I was starting to hate running it so I knew I could not be my best self if I was not enjoying what I was doing. The severe asthma peer support group was not just virtual meetings but there was a facebook group and a what’s app community which had 5 sub groups focusing on various topics too which were all very active. I had asked for help for aspects of the running of the group but like with all things people volunteer help but then never actually do or the offer help then when you give them something they say they cant do it or it comes with a caveat. Since closing the group of course because people are now aware that the group is no more they suddenly realise what they won’t have so I have had people want to take control of various aspects but for me it was to little too late. I am really hurt as I know a new what’s app group has been set up but I am yet to receive a invitation for this which grates a lot after all the time I gave up when if I am honest I could have been doing other things so that has soured things a bit.
I would suggest to anyone thinking of setting a peer support group up to make sure of the following:
- Have a team to set the group up with you and all have clear roles that they have to ensure they fulfil and if they don’t they take responsibility for finding someone to cover them
- Have funding to provide for the group so that a zoom licence can be purchased solely for the group
- Have multiple people who can facilitate the peer support group and have meetings set up to support the facilitators
- Have guidelines and a process by which to deal with people if they breach the guidelines
- Privacy when using whats app- an issue I have subsequently faced since shutting the group down is one member went and took other members numbers and was then messaging people once the group was shut. This was not something I thought about but someone people are not happy this has been done so protection needs to be put in place to prevent this occurring.
- Have a complaints procedure so if people are not happy they can go through a more formal process of complaining
- Make sure people understand what peer support is and that those who run the group are peers and therefore have similar lived experience and accommodations need to be made for this.
Overall I am proud of the group, the number of people I reached and provided peer support too and the number of different countries that people were from too, there were people from all over the world. I got to speak about peer support at the Scottish Parliament and the benefits it brings to people as well as having a range of guest speakers come and speak to the group too. While things are a bit bitter just now I know this will pass and I will look back fondly on what I was able to do for a community of people. I hope that I will still be able to support people with severe asthma going forward.
ANONYMOUS-ASTHMA 