Here, members of the ELF Cough Patient Advisory Group (PAG) share their experiences of being a PAG member. They tell us what they would like people to know about chronic cough, about the PAG’s biggest achievements and what they hope to achieve in the future.
The ELF Cough Patient Advisory Group (PAG) is made up of people with chronic cough from across Europe. The group is involved in a range of activities to raise awareness with the aim to improve treatment and care for people with the condition.
We first got together in 2017 to support patient involvement in a new Task Force that was developing guidelines for clinicians on chronic cough. The Task Force wanted to hear what patients thought about the tests and treatments for chronic cough, and what we wanted clinicians to know about living with the condition. Back then there were 5 of us, but the group has now expanded, with 12 members based in France, Germany, Italy, Spain, Sweden and the United Kingdom.
Chronic cough can be a really isolating condition. People do not always understand it and it can affect our social life – many of us have needed to leave a cinema or party because we cannot stop coughing. The COVID-19 pandemic has made things worse as everyone seems afraid of people who cough! Being in the PAG allows us to meet others, share experiences and realise that we are not alone. There is no cure for chronic cough but being a PAG member helps us to contribute to research to improve care and treatment. Access to the latest research is an added benefit, which gives us hope for a cure in the future.
There is not always a cause for chronic cough, and many of the treatments do not work for everyone or have side effects. Many of us have been wrongly diagnosed with other conditions before we were finally told that we had chronic cough. We would like both the general public and the medical profession to be more aware of cough as a condition, so that people can be more understanding of us and we can get access to treatments sooner.
It is important for people to understand that we cannot help coughing – we do not want to cough but we cannot stop! It is easiest if people do not draw attention to our cough and understand if we have to leave the room. Some of us find that our cough is triggered by things such as strong perfumes, cleaning products or cigarette smoke, so please ask us what you can do to help.
After we contributed to the Cough guidelines, ELF produced them in a lay format for patients and the public. They are now available on the ELF website, and we hope that they improve knowledge and understanding of cough in clinicians as well as patients and the public. The lay guidelines will be available in certain European languages soon. We are also working with the NEUROCOUGH Clinical Research Collaboration – a group of clinicians, researchers and pharmaceutical representatives who have come together to enhance awareness, understanding, treatment and care of chronic cough. The group are really receptive to patient involvement and always keen to hear our views. We have already worked with them to create a chronic cough ‘patient journey’, and we have some more exciting things coming up in the future.
We would love to see a cure for chronic cough! Until then, we want to raise the profile of cough and for there to be more research into treatments. Together with the NEUROCOUGH team, we are going to be holding an online patient conference about chronic cough, hopefully later this year. It will be a chance for people to learn more about the illness, meet others, and find out about the latest research and treatments. We would also like to have more members in our PAG so we can be more representative of people with cough – so if you are interested in joining us and getting involved, please email clare.williams@europeanlung.org
Being part of a PAG is a great way to have a real input into research about an illness that many people have not even heard of, as well as find out about the latest treatments. We also meet with global experts in the disease, who are really focused on improving the situation for patients. Together we can make the patient voice stronger and raise our profile. It is also really good to be able to share experiences with people who truly understand what we are going through.
If you are interested in joining the Cough PAG, please contact clare.williams@europeanlung.org
We have Patient Advisory Groups covering a range of other lung disease topics, many of which are currently welcoming new members. Find out how you could get involved in a PAG
