On Tuesday evening I attended one of my first face to face events since the COVID-19 pandemic started. I cannot begin to explain how good it was to be back at an in person event.
A few months ago the rebranding of the Asthma UK and British Lung Foundation Partnership was unveiled. Along with new branding came the new name Asthma + Lung UK (ALUK). As part of the celebrations there have been various events held to celebrate the launch and share the vision of charity going forward. I was invited to the launch event in London but due to my health I was not able to attend so was excited when I was also invited to a similar event being held in Scotland. When I got the invite I was determined to make this and I was not going to let my health stop me.
In Scotland, through the Scottish Government we are fairly lucky as we have various cross party groups (CPG) which work together on a particular interest. Years ago I was a member of the Asthma CPG but this folded. I joined the Lung Health CPG at the start of the pandemic not long after Asthma UK and the British Lung Foundation merged. For people with lung conditions in Scotland we are very fortunate to have such an active CPG with many MSP’s heavily invested in improving the lives of people who have various different lung conditions. MSP’s who are members of the Lung Health CPG are also each a champion for a range of different conditions. The asthma champion is Emma Harper MSP (also co-convener of the group) and we are very lucky as her previous experience as a nurse and dedication is second to none.
The event on Tuesday evening was held at the Scottish Parliament and sponsored by Asthma + Lung UK. It was an opportunity to hear more about the vision and strategy of Asthma + Lung UK as well as a chance to meet others. I was really looking forward to this as it was a chance to meet Sarah Woolnough who is the chief exec of the charity. Due to COVID I have not had the chance to meet her face to face. The wonders of modern technology has meant I have been in various calls with her and communicated via email and also Twitter. I was also able to see other members of the patient advisory group (PAG) and others whose work involves lung health wether that be for the charity, clinicians, academics and industry partners too.
I cannot pretend I was not nervous attending my first face to face meeting. Having spent the last few years shielding, protecting myself from COVID and the risks it could pose to me if I was to catch it. Even though the virus is no where near as deadly as it once was due to the success of the vaccination program I cannot shake off the fear I still have surrounding COVID. I think this is because I and others like me heard nothing for 2 years except to protect ourselves from COVID. When this is all you heard for so long it is hard to change your mindset especially when it is still so prevalent (even if it is deemed to be a lower risk). But it was an important milestone for me in returning to life as we knew it over 2 years ago. It was probably a good event to attend as the room was fairly big and not too crowded but also all those attending had an understanding of lung conditions and were very accommodating. For example when I saw someone who I have not seen in a very long time asked if it was ok to give me a hug and others asked if they were standing to close to me when we were speaking. This put me at ease and me feel more comfortable about being out again.
I always feel very humbled when I attend events like this. I am in awe of the way so many have decided to dedicate their lives to improving the life of people like me with lung disease. Everyone has their own reason for doing what they do but no matter the reason I am eternally grateful and it gives me hope that there will be improvements for those living with lung disease.
We were able to hear from a variety of different speakers during the course of the evening. A friend Linda was invited to speak about her experience living with lung disease from the fears she had at diagnosis, day to day management and the fears she had during the COVID pandemic. Linda has been a champion for people living with lung conditions and volunteers tirelessly through her Breathe Easy Group (Clackmannanshire) ensuring that people feel supported and have the opportunity to meet others going through similar experiences. As someone who has benefited from peer support groups, Linda’s work is invaluable.
The patient voice at events is key. When I first started doing advocacy work and raising awareness of severe asthma the patient voice was very quiet. The value of the patient voice was not the same as it is now. It could still be louder but there is a shift change, and the patient voice is now seen as an essential component in any work involving health (I do acknowledge there some huge gaps and not everyone welcomes the patient to the table). Maree Todd MSP (Minister for Public Health, Women’s Health and Sport) also spoke and shared how vulnerable she felt when COVID hit because she also has asthma. She also emphasised the importance of the Respiratory Care Action Plan and was able to draw on her work in other health care areas highlighting how important the correct pathways are for patients when they need to access healthcare wether it be when seeking a diagnosis or the longer term management of a chronic condition.
Dr Tom Fardon also spoke at the event. He is considered one of the best severe asthma specialists in Scotland and highly regarded by his patients and colleagues. He shared the challenges that he and the team faced when trying to write the commitments for the Respiratory Care Action Plan (RCAP). Trying to establish the areas that need to be focused on was hard to narrow down, then turn these into the commitments for RCAP and then once RCAP is implemented transform them into actions. Dr Fardon reminded us that his main job is as a chest clinician in a very busy hospital. It is one thing getting the government to approve plans and strategies but clinicians need help on the ground to implement the changes required which can then benefit patients. Without support it is impossible to make positive changes.
I left the evening feeling invigorated. On social media I have shared just how hard I have been finding this year so far due to the ongoing issues with a wound in my abdomen so going to this event was a really big deal for me. Listening to the various speakers got my brain cells working and ideas flowing again on how I can do my bit to try and help those living with severe asthma and other lung diseases. I now have various notes in my phone where my brain has dumped the ideas and how I hope to go about changing them from a note and idea to an actual concept for others to see and benefit from.
Some of the key things I took from listening to the various speakers at the event are:
- We have to shift the perception of lung disease. We have become accepting of it and this should not be the case. We should never have the mindset of “its just asthma” if we are prevented from doing something due to asthma.
- There is a huge lack of understanding about lung disease.
- Lung diseases such as asthma are not getting the attention or focus that they deserve across the full spectrum of society. If asthma was a different condition we would not have ended up in the situation we are in with 3 people dying each day in the UK from a potentially preventable asthma attack.
- Different lung conditions are kept in metaphorical silos and there is now inter condition discussion so to speak, however we can learn a great deal from each other as there are common themes across all lung conditions which will help people living with them.
- Living with a lung disease does not just affect you lungs, it affects all aspects of life and negatively impacts far more than anyone realises.
- Societal inequalities have a big impact on the outcomes for those with a lung condition, this is particularly apparent for those who come from a lower socio-economic background.
These are just a few of the points that I took away after hearing all the speakers. As a person living with a severe lung condition which has impacted my life in ways I could never have imagined I want to finish using the motto that Linda shared with us during her talk:
“Everything that can be done, should be done”
I must offer my continued Thanks to all at Asthma + Lung UK for all they do for people like me but also the involvement and opportunities they give me. It means that my negative experience with asthma is being put to good use and hopefully will make a change for others so no one else will have the experience of living with asthma I have had.