Experiencing the evolution of an asthma charity in the UK

Last month saw the rebranding of the Asthma UK and British Lung Foundation Partnership. It has been rebranded and is now Asthma + Lung UK.

Evolution is sometimes scary and can be uncertain but there is often so many positive things that come from it, my perspective is that this has continually happened in the various different iterations from the National Asthma Campaign to present day.

My involvement with the charity started from when I was a young child having been diagnosed with asthma. It was our family GP who told my Mum about the National Asthma Campaign and the Junior Asthma Club, the mascot for which was very aptly called JAC (I tried to find a picture of JAC but I couldn’t- in my memory it was a red round character with tiny legs and arms). I was signed up and because back then there was no social media or internet really so we would receive the newsletter called “A is for Asthma”. The adult version was “Asthma News”. I remember it not so much because of its content because as a child you are often way more excited by the freebies that come with it! I always remember the balloon and also the pencil that was no ordinary pencil, it was one of those ones that had a 4 coloured lead in it. The newsletter was the primary way in which the charity could communicate with asthmatics across the UK. The newsletter also had fun games to play as well which aimed to enhance a child’s knowledge of asthma.

Aside from being a member of the Junior Asthma Club my main involvement with the National Asthma Campaign was through fundraising. I did things like a bring and buy sale, or a bake sale at school, also things such as a swimathon and a readathon. These tended to be things school encouraged us to do and we would go around trying to get as many people as possible to sponsor you- by the time of the event the paper sponsorship form was a total state and often held together with sellotape!

During this time as a child and not directly linked to the National Asthma Campaign I remember so vividly the educational materials that were developed by Allen & Hanbury (a pharma company that has now been absorbed by GSK). The asthma education and management resources for children all featured Desmond dragon. I remember it so well and the story of Desmond too!

While I was at boarding school despite my asthma being really bad and under the care of a consultant in Dundee I didnt have any engagement with the National Asthma Campaign.

In 2004 the National Asthma Campaign became Asthma UK. My involvement at this point was really not much and I do not have any memories of the switch as I was in my final year of school and then over in Canada so did not really get actively involved in the charity again until 2006 at which point my asthma was really really severe thanks to a rare pneumonia I got in my lungs while living in Canada.

From 2006 onwards I had a lot of involvement with Asthma UK doing a range of different things which increased as my asthma got worse and I was being limited by what I could do as I could always do something to help the charity. One of the first things I do remember doing was raising public awareness of Asthma UK and asthma, this involved a bucket collection at Waverley Station in Edinburgh. I remember it so clearly because I was dressed in a lime green t-shirt and neon green curly wig!

At this stage social media was in its infancy and the only way to communicate or meet other people with asthma or severe asthma was via the message board that Asthma UK had. There was also the Kick Asthma message board for young people too. These message boards were so valuable as it was the only way you really knew you were not alone and that others were out there who had severe asthma too. As with anything there were always some rogue people on the message boards but there are still people from the message board that I am still speak to especially DiscoDolly (you know who you are!!).

Asthma UK has always had one focus on educating people living with asthma. A carry over from the National Asthma Campaign was Kick Asthma Holiday Camps- basically a holiday camp for people with asthma to do normal kid stuff but also be educated on their asthma. They also hosted a weekend for young adults in Manchester which again had a focus on educating you and providing you with resources so you could live a better life with asthma. The weekend was slightly ill fated and there was a host of issues mainly from one group of people but it made me realise that not everyone with asthma wants it to go away. It turned out there were quite a number of people who liked the attention they got if they had an asthma attack so as a result they really did not behave appropriately. It was a really good weekend as I got to meet people but it was also eye opening. It is a real shame that the weekend was almost highjacked by this group as there has never been another weekend like it. I got a lot out of some of the workshops they had that weekend.

Fundraising has always been an essential need for Asthma UK like any charity. Over the years I have done various things to raise money for Asthma UK. When I was originally fundraising I new I was doing it for Asthma UK but beyond that I never really had any understanding of where it went to but also how much various activities that Asthma UK did cost. In 2012 I ran the Edinburgh Half Marathon which for me was a great achievement and since then have always helped runners by having a cheer station to support the Asthma UK runners. Then in 2015 the Captain of my golf club Craigmillar Park held a charity golf day raising a huge amount for Asthma UK. The final event that means a lot to me in terms of fund raising was my brother running the London Marathon raising money for Asthma UK.

I have always tried to raise awareness about what it is like to live with severe asthma. In doing this I have had some amazing opportunities and have also understand all the different ways in which Asthma UK helps people with asthma and the work they need to do to improve the lives of people with asthma.

World Asthma Day in 2014 was when my involvement with Asthma UK really took off. I sat on the cross party group at the Scottish Parliament for Asthma (now the Lung Health Cross Party Group) and also had the opportunity to join the Asthma UK Centre for Applied Research as a patient and public involvement lead. Being part of this centre meant I met a huge number of people, made connections and was able to use my voice as a patient advocate to express the concerns and needs of people with asthma. I never could have anticipated where I would be now just from putting a video on social media raising awareness about living with severe asthma. I do not take one opportunity for granted. My motivation is that severe asthma has taken my life away from me, I do not want that to happen to anyone else.

There have been many ups and downs over the years with my involvement in Asthma UK. I have spoken openly about my views on various actions they took years ago but after discussions could move past it. This is a key fundamental for why I have stayed involved in the charity. No one is always going to agree with what is done but respecting their volunteers and their views is key. They have never once dictated what I am to say. I can have my voice and my views.

From 2015 to 2019 I have had some amazing experiences, I travelled to various events and spoke about living with asthma, and attended workshops to help academics design their research, sit in panels to help identify the key priorities for people with asthma or speak to potential funders about why Asthma UK needs the money they will potentially donate. Within Asthma UK there were a lot of different roles that you could do. I was a member of the Readers Panel and also a Research and Policy Volunteer. Being able to speak to journalists who are willing to share my story gets more people seeing what asthma can really be like. Having the chance to speak to parents of a young women who died as a result of an asthma attack was inspiring because I could see their strength and how they wanted to make a change and raise awareness of asthma death. That is something I will never forget and look back on when I cant see a way forward. While I spend a lot of time trying to raise awareness of living with severe asthma and speaking to academics in 2017 I had the opportunity to give the charity a platform as well. The 2017 Women’s Lacrosse World Cup was held in England. The Scottish team wore the Asthma UK logo on the sleeve of their warm up tops. Many of the team were asthmatic so this was a great chance to highlight the charity too. The highlight of this time period was being invited to the Queens Garden Party at The Palace of Holyrood. I was invited due to the contribution I had made to Asthma UK over the years. I was so honoured to be invited as they have hundreds of volunteers and I was chosen. I am so thankful for that and will remember it always.

2020 was a year that no one will forget due to the coronavirus pandemic but it will stay in my mind for another reason too. The back end of 2019 I had a phone call with someone who I have worked a lot with over the years. I was asked about what my opinion would be if Asthma UK were to join with the British Lung Foundation. They explained their side and why. Initially I wasn’t sure what to say but then I could only see it as being a positive because it would mean lung conditions were being recognised as a collective rather than in isolation. So the start of 2020 the announcement was made that Asthma UK would join forces with the British Lung Foundation to form The Asthma UK and British Lung Foundation Partnership. For me living in Scotland I was excited by this. Due to funding issues the Asthma UK offices in Scotland and other devolved nations had to be shut but the British Lung Foundation had a good set up with the devolved nations so I new that this could only be a good thing. It would mean that asthma is back on the agenda in Scotland via the Lung Health Cross Party Group at the Scottish Parliament (with the closing of the Scottish offices the Asthma CPG folded). Since then it has been so good especially with the pandemic and so many with lung disease having to shield much of the work has moved to online work but this has meant that even though we could not meet up in person we were still involved and included. The variety of activities put on for their supporters helped people during the pandemic as they were all things that could be done from the safety of your own home. The webinar series as well went down well. The formation of the Expert Patient Panel by AUKBLF brought patients from different lung diseases together and formed 2 panels. I sit on one of these panels and have been able to meet others who have different lung diseases, learn from them and work together to help researchers with their research questions and various other aspects of work in lung disease.

28th February 2022 was the launch of the new name, branding and strategy for lung health. Asthma + Lung UK is the new name of the charity. Throughout the first week of Asthma + Lung UK there were launches at each of the home nations parliaments, Westminster, The Senedd, Holyrood, The Assembly to make lung health a priority. I was so fortunate I was able to go up to Holyrood and meet many MSP’s (Members of the Scottish Parliament) and speak to them about living with asthma and why it is important. I was so determined to make it as I had not long had my second abdominal surgery and was in a lot of pain but having seen the charity transition I wanted to be there and it was worth it. I was gutted that I was not able to make it to London yesterday for the celebration event launching Asthma + Lung UK where there would be many people from the asthma world attending.

Over the years I have attended many events and often get thanked for sharing my experience of living with severe asthma but the side that many don’t appreciate is that even though I am helping them understand my life, they are actually enhancing mine as they are giving me opportunities to do something productive with my life despite severe asthma taking so much away. It is making a really negative situation into a positive one. I don’t think anyone really understands just how much I value these opportunities. I am so glad it is helping them but it is helping me more than they will know.

This has been a bit of a long post but there were many years to cover and many events too that I have been to or activities I have participated in. To write about it all the post would be more like a novel!

Overall I am really proud to have been involved and seen the National Asthma Campaign evolve to Asthma + Lung UK. I am excited to see what the future will be and to see the change for people with lung disease in the coming years.

This is why we do what we do so we can prevent images like this.

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