What started as an idea during lockdown while shielding away from the world feeling lonely and isolated has turned into something I never imagined.
I actually forgot that I held the first official virtual severe asthma peer support group meeting in September 2022. It was not until I was writing my notes from the meeting that I realised the first meeting took place a year before.
The group is probably to date one of my proudest achievements when it comes to the work I do with severe asthma. It has not been easy, with my own health giving me challenges but then also making sure I stick to my guns and do what is right for people living with severe asthma rather than the wider group of people who perhaps just don’t have their asthma medication optimised.
I didnt know how the group would evolve and it has been very much adapting as time goes. The biggest decision I had to make was to move the group away from being under the umbrella of a charity and run it independently. This means I was able to ensure the needs of those with severe asthma are being met. I was led by the group and this was what they wanted they did not want it open to others as severe asthma is very unique with the challenges faced and experience had by not just the person, but family and friends.
In the first year the support group has:
- Over 100 members on the mailing list
- Members from 17 different countries around the world
- Active what’s app group with messages daily from members
- Secret Facebook group with 53 members
- Virtual zoom meetings with 18 people regularly attending
Ultimately the group has given people with severe asthma a safe place to ask questions, get things off their chest, share frustrations and offer advice in various different formats so there is something for everyone. It has been so great to see friendships being formed and conversations happening outwith the support group forum.
There is so much more I want to do with the group and now that my own challenges have settled down a bit I will have the time to sit down and really put time and energy into the group to allow it to be the best it can be and provide the best support people with severe asthma. (I know I don’t get it right all the time so please if you are reading this and think something needs to be done better please let me know).
With the highs of the group and the personal achievement I feel from it there are some aspects of living with severe asthma that the group have spoken about which are essentially horrendous. It has made me realise how disjointed asthma care is not only around the world or in the UK but in individual countries. Asthma care within countries varies a huge amount. There are people in the group who live in side by side counties and the severe asthma care is vastly different, the fight for treatments is not the same. The condition is the same but the way in which it is treated varies a huge amount. It brings the term post code lottery to a whole new level.
In times when the NHS is under a huge amount of pressure people with severe asthma (and I am sure this happens with other chronic conditions) are suffering and ultimately it is probably causing more pressure on the NHS. The nature of severe asthma and the medications needed means most people will have some degree of multi-morbidity yet each condition is being treated in isolation with no thought to the person as a whole or how the treatment of one condition may impact other conditions. The patient is also being left to make decisions about their conditions or to relay information to various members of the healthcare team because the NHS system is so disjointed it means there is no one central point apart from the patient. I know myself as a patient I walk away from a clinic appointment and will not have taken all the information in, let alone correctly take it in yet people are then expected to tell other clinicians this information. I cant help but feel if there was a central way in which information about a patient can be stored and managed then all those who care for that patient will have the right information. This would take this stress away from the patient but also mean that conditions can be managed better which could alleviate pressure on the NHS too.
In this next year I want to be able to reach more people and offer peer support to them. Bring in guest speakers who can provide different information about how to live well with severe asthma and also more expert knowledge of severe asthma. I also hope to bring in people who work in severe asthma so they can see just what it is like to live with severe asthma and some of the things that we struggle with.