7 years ago I had the privilege of being invited to join the Asthma UK Centre for Applied Research (AUKCAR). At the time I had no idea what I was getting in to. I had no idea what patient and public involvement (PPI) in research was and to be honest was a little daunted at the prospect.
Over the last 7 years I have so much to thank AUKCAR for. The have shaped me as a person. I have gone from a person who was really shy, spoke quietly or would pass a note to someone else and get them to speak on my behalf to someone who is fairly confident and happy to speak in public and raise my concerns as a person with asthma.
Sadly this latter statement is the catalyst to what has caused me to leave AUKCAR.
I have not always considered myself to be a patient advocate but after being invited to speak at HealtheVoices 2019 I realised this is what I am. During that conference it was apparent that as patient advocates we need to use our voice to speak our truth. Speak our views for the good of all patients, not just those in our community. It is not always appreciated but it is often the case that if someone doesn’t like what you say or takes umbrage over it then it is because they follow that behaviour. One thing I will always do is make sure that any statements I make about asthma, asthma treatment and asthma research can be backed up with evidence if it is needed. When it is my own personal experience I will not back this up as it is how I have experienced something.
As a result of my involvement in AUKCAR I have been exposed to various different groups and organisations which I have then become involved with has expanded my experiences but lately this has caused me some conflict and stress. I was able to share these concerns with the relevant people when I emailed my resignation to AUKCAR.
As a patient and a patient VOLUNTEER it is important to be treated as that and given the support needed to make the biggest impact in our lives. I did not want to have to pick and choose what I was agreeing to do or not do but did not appreciate the conflict this caused me. At the end of the ay when I do PPI I like to think what change is this involvement going to actually have for people with asthma at ground level and this is not just for the way studies are conducted but how PPI itself is conducted. PPI is not done widely and we want to encourage this. As a patient volunteer I was tore able to have the autonomy to speak to researchers and clinicians informally about their ideas and grow ideas with them. If these conversations then become a grant application this is fantastic but it is often these informal conversations that have the biggest impact. Formalising PPI is putting up barriers.
Due to various issues I thought long an hard about staying or leaving AUKCAR. My main hesitancy was that AUKCAR has given me so much. If it was not for them I would not be the person I am now. I would not have had the opportunities I have. I would not have been a published author, I would not be a public speaker, I would not be a fairly confident person, I would be lost to my condition. PPI has given me a positive aspect to a very negative situation I found myself in with my asthma and for that I will be forever grateful. But now it is time to move on and spread my wings else where. I have so many projects on my table just now including being a PPI lead for 2 big research projects, deputy patient chair of SHARP and various other bits and pieces.
Thank you to all you have done for me particularly Allison for getting me involved and Elisabeth for being my mentor and helping me transform from someone who she could never hear to someone who now won’t stop talking!
ANONYMOUS-ASTHMA 