Speaking at Lung Health Cross Party Group

Today I had the opportunity to speak at the Scottish Parliament Lung Health Cross Party Group Meeting. I was invited to speak about the formation of the severe asthma peer support group and what it will do for people with severe asthma.

I never normally get too worked up or nervous about speaking but today I did. I think it was because this group is so special to me. I have put so much effort into creating the group, facilitating it and recruiting people to join it so I think speaking about it at a meeting such as this was kind of scary because I was worried about how it would come across and if people would understand why it is special and also that people see the benefit of peer support.

It was fantastic- as ever I did not over prepare as that makes me even more nervous although I am super proud that I did some slides and they were not too awful! I was really touched by some of the lovely words from Alexander Stewart MSP who is one of the co-conveners of the group.

The key message I wanted to bring to the group was the benefits of peer support and how peer support can work in tandem with health professionals. The way in which I have set the group up to have a mix of facilitated discussion and guest speakers will give the opportunity for quality patient education which would not occur in the clinical setting. For example I invited a respiratory nurse specialist to come and speak about the Adrenal gland and the impact oral corticosteroids can have on it. There had been so many mixed messages given to patients on the subject so it was key to correct this. Looking at the numbers the nurse gave a 1 hour session to 45 people and the end result was patients improved knowledge and some being able to identify symptoms they had as adrenal insufficiency and got a diagnosis. For a nurse to do this in the clinical setting which is always one on one would not be feasible. It would take well over a week to just impart this knowledge to the patients let alone any other monitoring and management the nurse had to do as well.

Having key educational sessions will support not only patients but also help those in the clinical setting as well where time is not on side but information is key to ensuring patients can manage their severe asthma to the best of their ability.

Peer support also offers people connections with others who have the same condition easing loneliness and isolation. For me one of my closest friends is someone I met through (what was) Asthma UK and am so excited to go to their wedding later this year. We have been able to support each other with our asthma but also forge a great friendship. It has been so exciting to see so many members of the group making friends and communicating outwith the support group meetings.

Something I am very proud of is being from Scotland and as a patient advocate in Scotland it is not lost on me that I am in a very fortunate position that I can speak for people with severe asthma and lung disease to those who matter. Today at the meeting there were Members of the Scottish Parliament, respiratory nurses from across Europe, clinicians, pharmacists, 3rd sector and civil servants. That does not happen often and I love being in Scotland that I have the chance to do this.

I cant write this blog post without mentioning those at Asthma + Lung UK who allow me to speak up and support me in whatever brain wave I am having for people with lung disease. Since the COVID-19 pandemic meeting the 2 co-conveners Alexander Stewart and Emma Harper I have felt so positive with what I can do knowing that there are people who genuinely care for those with lung disease. Emma Harper MSP is also the asthma champion and backs all of us and wants people to have better asthma care.

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