Setting up a virtual severe asthma peer support group

For a long time I have wanted to set up a severe asthma peer support group because the condition is so isolating and very difficult to live with. We often have to use our own knowledge of the condition to help ourselves manage it because the medical knowledge of experts is limited to the science side of it.

With the evolution of social media it has made life a bit easier to connect with other people like yourself all over the world. Some of the best connections I have had are with people who live in Canada who I only ever see through a screen yet I have had some of the best conversations with and who I have been able to share the inner frustrations of living with severe asthma.

The negative side to virtual interactions is that people don’t always portray themselves as who they actually are which can cause some issues. This commonly occurs in support groups that are formed on platforms such as Facebook. Essentially on the internet you can portray yourself however you want to and say whatever you want as people will not always end up meeting you so they won’t know. As a moderator of many support groups I have seen people give a different version of themselves particularly when it comes to health. After a while it all unravels and as my mum has always said it is very hard to lie well and lie well over time as you would more that likely trip yourself up and this is what I have seen happen.

But the key thing is that there are still people who need support so this is why I wanted to set up the peer support group. I have been involved in peer support groups for a while through ICUsteps which started off well but then it turned very negative and as a result I have broken free from ICUsteps Edinburgh but remain a trustee of the main charity. There were a lot if issues which I have used when setting up the severe asthma group to ensure the problems I have had do not happen with the severe asthma group.

The lessons I have learnt from ICUsteps Edinburgh

• Guidelines- along with Asthma + Lung UK we developed some guidelines for the group and at the first meeting I asked the group if they had any points they wanted to be added to the group guidelines. All members must agree to the guidelines when they join the group and then we go over them quickly at the start of every meeting. This ensures that everyone knows where they stand and what they can expect.
• Trust- a support group will only run well if there is trust between those running the group and also for those who are attending the group. I ensure that at any meeting we have, that everyone feels safe. If members don’t feel safe or don’t trust the group then they will not get what they need out of it and then there is no point to having the group.
• Good facilitation of the group. I would often feel like the ICUsteps Edinburgh group would not run well. The focus would be on ICU quite rightly but in a negative way. We would go around the group and say our name, when we were in ICU, how long for and when. It felt to me a little bit like how alcoholics anonymous groups are portrayed in films. I don’t see the real benefit in this. I have researched the best ways to facilitate peer support groups and have done a few courses. We all know that we are at the group because we all have something in common so we don’t need to tell each other this part which wastes time, Instead I use the CHIME method to allow members to focus on what they have achieved and what they want to work on or work through.
• Understanding my own limitations and being honest to the group members this way the group doesn’t have expectations that are beyond my capability. After all this is voluntary.
• Resources- I have developed a bank of resources which I can use to help members and point them in the right direction should they need more help.
• Advertising the group so that everyone who needs the support can access it.
• Guest Speakers- having a mix of facilitated group discussion and guest speakers keeps the group going and keeps it different. Guest speakers will always speak about a topic that is relevant to living with severe asthma.
• I have also found that a meeting once a month is not always enough but it is not feasible to have more than this. Members are always able to contact me but they may not want to contact me with a question or concern, so I have set up a Facebook group which is secret which is available for the group members to join and they can then continue conversations that were happening in the peer support group meeting. This gives them a place to go in-between times to ask questions share experiences etc.

The group has been running since September and has really grown with new members joining all the time. It has been so rewarding to set this group up. I have seen the benefits of it already. We had a guest speaker who came and spoke to the group about the adrenal gland, its function and the impact that oral cortiosteriods can have on it. We also learnt about the signs and symptoms to watch out for with regards to adrenal failure. As a result of this talk a member was able to take the information to their Dr and has been diagnosed with adrenal insufficiency and started on treatment. This has highlighted how important peer support groups are for people with chronic conditions.

If anyone is over 18 and has a diagnosis of severe asthma from a hospital consultant then you are more than welcome to join the Severe Asthma Peer Support Group. Please email me on: aluksevereasthma@gmail.com and I can tell you more!