This month we spoke to Lisa McNeil, a patient advocate for aspergillosis who is a member of the ELF Aspergillosis Patient Advisory Group (PAG). Here, she talks about this and our newest resource on antimicrobial resistance, which she helped to produce.
My name is Lisa McNeil and I live on the coast in the north west of England, which is not a great place to live when you have two major lung conditions. I’m 52 years old and was diagnosed with bronchiectasis when I was 27. I had a partial lobectomy in 2001 as they believed my bronchiectasis was localised. Unfortunately this was not the case. In 2011, after years of repeated exacerbations and stays in hospital, I was diagnosed with Aspergillus Bronchitis. I was put on antifungal medication and remain on it today.
I first became involved with ELF through a local ‘Breathe Easy’ group and this led me to join ELF’s Patient Advisory Group (PAG) for bronchiectasis patients. Then, when ELF agreed to create a PAG for aspergillosis patients I joined immediately.
In 2021, I was a member of an online aspergillosis support group. I was asked to be a trustee and help to set up the charity Aspergillosis Trust, of which I am now the Chair. Our aims are to help and support anyone affected by aspergillosis and raise awareness of the condition amongst the public and healthcare professionals.
Antimicrobial resistance is the overuse and misuse of antimicrobial medication, which makes these treatments less effective. AMR should be an important topic for everyone. But for those of us who rely on antibiotics to fight recurring bacterial infections and those of us on life saving antifungals, it’s vital that we protect our antimicrobial medication. Without them we will become very poorly and may even die.
It’s important as we have the lived experience. We have a vested interest in the fight, and the narrative and the storytelling helps us improve other people’s understanding of our experience and this can lead to more meaningful outcomes. We need people to listen and who better to tell them why than those it is directly impacting.
I enjoy being part of the PAGs as I feel we are listened to, and our opinions are always valid. I get access to Q&A sessions and webinars where I can ask questions of other patients and health professionals from around the world. I can then share these sessions and what I have learned with our support group. I also help important projects get the funding they need by carrying out lay person reviews and attending focus groups.
I would recommend anyone that is thinking of becoming a patient advocate or joining a PAG to go for it. Patient advocacy is how we get change. It’s how we are part of the solution. We need to contribute towards our own health, and we can help develop more meaningful solutions to so many things: primary care, access, innovation, barriers, health outcomes and more.
If anyone is struggling with Aspergillosis and is looking for help, they can find us on Facebook or on our website at www.aspergillosistrust.org.
