Severe Asthma Peer Support Group

Last September I started the Severe Asthma Peer Support Group with the support of Asthma + Lung UK. Unfortunately this has not worked out so I am now running the group independently from Asthma + Lung UK. It was not an easy decision to make, and I had many sleepless nights thinking about what I should do.

For many years I have wanted to set up some sort of peer support group for people like me with severe asthma because it is a horrendous condition to live with. During lockdown I ran a couple of web chats for people with severe asthma which were really successful which us why I knew a peer support group was needed.

The support group I set up for people with severe asthma but over time we were finding that others with asthma were joining. When people approach me to join the group I ask them a few questions. First is if they are over 18 and secondly if they have ben diagnosed with severe asthma and under the care of a hospital consultant. I don’t ask for proof and take the responses at face value and believe the people. I don’t have the right to question people however over time it was evident from what people were saying in group meetings that they did not have severe asthma, some even stated it, but felt aggrieved when I spoke to them about the group after they had said they did not have severe asthma. This caused some issue and disagreement between myself and Asthma + Lung UK. I was told that I could not tell people they could not be part of the group because they did not have severe asthma as some people felt they got a lot out of the group. They may have got a lot out of the group however they caused upset to other members who did have severe asthma.

Severe asthma is a very difficult condition and the support needed is unique to severe asthma. It is not the same as having asthma, or having allergic asthma or exercise induced asthma. The issues we speak about in the group can be traumatising if you don’t have severe asthma. For example we have spoken about facing our own mortality and fear of dying from severe asthma, or feeling like we don’t have the energy to keep on breathing when we are having an attack. Speaking to people who don’t understand this when you are looking for support is not helpful and potentially harmful to the person who does not have severe asthma.

Some may think I am being selective as to who can join but I am not, it is not only people I know in the group. There are new members from around the world joining all the time. I am selective in that people need to have severe asthma or have a partner, relative with it and looking for support. This is because of the nature of the discussions. It is also to protect those with severe asthma who need a safe place to speak to others who have the same condition. Many voiced that they would not want to be part of a group if others who don’t have severe asthma or a relationship to severe asthma as they would not want to share their experiences. This is not why I set the group up. I set it up as a safe space for people with severe asthma.

It is a shame the relationship with Asthma + Lung UK (for the support group) has not worked and I can understand where they are coming from as they want to serve everyone with lung conditions and provide peer support for everyone with a lung condition but when it is a condition specific group then only those with that condition should be joining otherwise the group won’t work and it will break down. Peer support is called peer support because you are supporting those who are like you with the same issues as you, not someone who may have a loose link to what you have. One of the hardest bits was trying to explain that severe asthma and asthma are so different. The connection really stops and starts with the fact they share the term asthma but severe asthma is nothing like asthma and that is why the severe asthma peer support group is for people with severe asthma much like other condition specific groups will only have those with that condition in them. I would say if someone wants a peer support group and there is not one then do what I did and set your own one up. I saw a gap and that’s why I set the group up.

Severe Asthma Peer support done right can be as valuable to the person with severe asthma as their appointments with their consultant or asthma nurse because there is only so much time in your appointments and you want to ask the most pressing questions there and many of the things you want to know often medical staff won’t have the answers but others living with the condition will be able to answer those questions.

While I am sad that there is not the support of Asthma + Lung UK for the severe asthma peer support group, I will continue to run the group as I always have. Anyone in the group won’t notice any difference to the meetings or anything, it will just be run independently by myself. I feel it is important that the group still runs due to the positive comments I have had from people in the group.

It has been and will always we a group for people with severe asthma to support each other from all over the world.