Learn more about Joanne Ashworth's story
What is your experience of asthma?
I have adult onset asthma, and had my first asthma attack at 18. My asthma was well controlled in my teens and 20’s but since turning 30 I have had several exacerbations and my asthma control has been up and down for the past few years. I’m working with my hospital consultant to find the treatment that works for me and I’m hoping to be ‘back to my old self’ in the near future!
Why did you decide to get involved with Asthma UK as a Research and Policy (RaP) volunteer? Why do you think it's important to get involved?
When my asthma started to become worse, Asthma UK were a fantastic source of information and comfort during difficult times. The helpline especially was brilliant in providing really useful information and reassurance and I am grateful that it continues to be funded and is there to provide much needed advice for people with asthma who often aren’t getting the basic care they need. I wanted to give something back to Asthma UK so decided to look into volunteer opportunities; RaP appealed to me because of the variety of interesting opportunities available, and that there isn’t any obligation to give a specific amount of time, so you can choose opportunities to get involved in that fit around your family/work life!
Providing the patient perspective for research projects is essential as we are the people that will ultimately benefit from the end product of the research or policy.
Tell us about your involvement with Asthma UK funded research projects, or external projects that we've supported you to get involved in.
I have taken part in numerous online surveys to ask my perspective on topics such as asthma management, use of technology to manage health, design of apps to improve inhaler technique. I have provided advice on a research proposal for a self-help asthma management application and also was a lay reviewer for an Asthma UK Innovation and PhD grant application round, which involved feeding back my thoughts on grant applications and attending a teleconference to discuss the applications and my perspective as a patient with asthma.
How has being a RaP volunteer benefitted you?
I have enjoyed finding out about the new research in the field of asthma, which may eventually benefit me – such as the development of asthma management apps, including monitoring of inhaler technique, as well as new drugs that may help improve symptoms for people with severe/brittle asthma. I hope that my feedback has helped shape future research for the better, focusing on the needs of people with asthma.
What has been your best experience as a RaP volunteer so far? What impact do you believe, or know, you've had as a RaP volunteer?
I enjoyed the training day in London very much, meeting fellow volunteers and learning about everything Asthma UK does, and what being a RaP volunteer is all about. I enjoyed reviewing the Innovation and PhD grant applications and participating in the teleconference with other volunteers and hearing how our feedback helped to decide which studies received funding.