I was recently at the first event since the partnership of Asthma UK and the British Lung Foundation. It was fantastic to see BLF colleagues with the Asthma UK logo on their name badges alongside the BLF logo. Also being welcomed with open arms too was lovely. I was a bit daunted to attend this event as I didnt know anyone however as soon as I walked into the room I spotted a familiar face Dave from Chest Heart and Stroke Scotland who had attended a PPI event I was teaching at. As more people arrived I then saw Toni (a fellow patient) who I got to attend the Garden Party with which was good too but actually by the end of day I was able to speak easily to so many people and have come away part of a whats app group.
The table I was on turned out to be one full of severe asthmatics (not done on purpose all by chance). As we got talking it was amazing speaking to others who have had the exact same experiences as I have and the way you feel as well. I think the biggest thing for me was that you would not be able to tell that any of us were seriously unwell and that 2 of us have had far too many intensive care stays to count.
One thing that did come up several times in conversation was around the term severe asthma and what it means. We all came to the conclusion that severe asthma is almost a totally different condition than asthma is but this is for another blog post.
The main point of the meeting was to discuss certain points of the Respiratory Care Action Plan which has been drafted by the Scottish Government however they have one huge fundamental flaw. They did NOT consult with those who have or are affected by respiratory conditions, so the BLF-AUK held a meeting to discuss key points which need patient in put on. In the room there was a mix of people with different respiratory conditions.
One part of the meeting that I found frustrating was that it became a bit of a platform for people to spout their complaints about their GP and how they never get to see their GP or if they want to see their GP they have to wait. This is just the way it is now but moaning at events like this is not going to get anything changed. The GP system is not ideal but there are so many who are not using the GP correctly like with A&E so that others miss out and suffer as a result but a consultation on a action plan is not the time to complain.
Asthma I think and I may be wrong is unique amount respiratory conditions because unlike other conditions which mainly affect the older generation asthma can affect anyone young or old. In the room everyone was much older than those with asthma. The other thing that made it unique is that unlike COPD asthma is not really a progressive disease. It goes through phases of being controlled and uncontrolled but generally won’t continue to get worse as you get older limiting your ability to function. So the needs of those with asthma are very different to those with a constrictive airways disease compared to a revisable airways disease. I think those with asthma in the room were able to speak up and give a good balanced argument for our opinions and why us as asthmatics think as we do.
I did get very frustrated when asking a few questions to be interrupted by those with COPD who clearly has no understanding of any other condition outside their own so would butt in with their opinion and how I was wrong. The one that got me really riled up was discussing spirometry. I asked what they meant by spirometry to the facilitator as it was a broad term and encompasses a number of different tests. The context of this question was on the background of spirometry being used in primary care. This person jumped in and would not let me explain what I meant and told me that spirometry is blowing into the machine when you sit in the glass box. I was wanting to know if they meant basic lung function by doing speak flow, or FEV1 or more advanced lung function tests given that the context is primary care. I was just really annoyed that some people were not given the chance to ask their questions or finish asking their questions without people butting in. The whole purpose of consultations and being involved patients and the public is to listen to each other and accept each others views wether you agree with them or not particularly when it comes to a variety of different conditions especially when we are all experts of our OWN condition but not in other peoples conditions.
The whole day was really good and I really hope the BLF-AUK got a lot of helpful information to take back to the government about their action plan and hopefully make some changes now that patients have been consulted. I look forward to seeing the result and to see the finished Respiratory Action Plan. If anyone is interested in giving their own feedback on the action plan they can do that here .