Case studies

What is your experience of asthma?

I live with asthma. I have asthma with fixed airways obstruction which means I have to take large doses of inhaled corticosteroids plus a long acting beta antagonist plus an antilieukotriene tablet every day. In the hay fever season I also take steroid nose drops. If I don't my asthma gets out of control, I wheeze, cough and find it very difficult to breathe out. Sometimes I have an asthma attack and either have to take my rescue inhaler more than I should, or I have to take oral steroids. This is usually when I catch a cold or sometimes in the winter when it is cold weather. Luckily I have never had an asthma attack that has meant admission to hospital, but I know I would be at risk of one if I didn't take my medications.

Why did you decide to get involved with Asthma UK as a Research and Policy (RaP) volunteer?

When I was diagnosed with asthma I was shocked! I was very fit and active, but a colleague I worked with noticed I couldn't climb a small flight of stairs without being breathless. The doctor was amazed because I had probably lived with asthma for a long time, but my fitness had disguised the symptoms. I was very silly not to get my symptoms checked out earlier. I knew nothing about asthma. About 10 years ago I saw an advert in the Guardian for RaP volunteers. Since I had a background in social science research I decided I might use my background and learn about asthma at the same time.

Why do you think that research into asthma is important?

Research is important for so many reasons. Asthma is a chronic condition which currently has no cure. Research into this area is important. But likewise it is important to try and see if there are ways to prevent children and adults getting asthma in the first place.

Since being involved as a RaP volunteer I have discovered that there are different kinds of asthma and there is a need to target treatment because at the moment everyone gets the same treatment which is usually stepped up with deterioration. But there is now a feeling amongst scientists that treatment can be better targeted with fewer side effects. A further very important reason for research is to try and stop the things that cause asthma attacks like preventing people like me picking up the rhinovirus (common cold).

Tell us about your involvement with Asthma UK funded research projects, or external projects that we've supported you to get involved with.

There are so many of these, so I will highlight some of them. I started being a lay reviewer. I knew nothing about asthma so I was rather worried about how I would get on, but I needn't have been. There was lots of training and support from Asthma UK staff and in telephone conferences with lay members of the Research Review Panel who coordinated our calls.

Asthma UK put out an advert for a RaP to become a member of the Ethics Board of a Project called U-BIOPRED, which is a European Project looking for 'hand prints' for severe asthma. I was lucky enough to have my application accepted and be chosen for that.

At the end of 2012 I was asked to become a member of Asthma UK's research review panel, and I have just finished a three year term on that. Also at that time I was asked to be the lay member of a panel to interview for the Asthma UK Applied Research Centre.

One of my most recent experiences has been to be a patient member of a big group of patients, academics, clinicians and members of pharmacy organisations who have been granted an MRC award to try and find personalised (stratified) asthma treatments the RASP-UK project. This is so important for people with severe asthma who tend to get treated generally because no one knows what else to do, and thus carry the risks of side effects of increasing numbers of drugs like oral steroids.

I am now also on my second NICE Committee and although I do not represent Asthma UK on this, I wouldn't have been successful without the knowledge and skills I have gained through Asthma UK volunteering.

I am lucky because my work allows me to be flexible and give as much time as I want to. But Asthma UK welcomes research and policy volunteers with as much or as little time as you are able to give

Why do you think that involving people affected by asthma is an important part of Asthma UK's research programme?

Involving people affected by asthma, whether as a patient or a family carer, is important because we know what it is like to live with the condition and can tell scientists and clinicians what are the right questions to ask about the way living with asthma affects people's quality of life. A good example is the effects of oral steroids. I and many people with asthma hate having to take even one course of oral steroids because of the effects they have on me. They make me jumpy and agitated and I spend night after night just not sleeping. This comes as a big surprise to many professionals who think side effects are just about things like affecting your growth or thinning your bones. Also people affected by asthma can ask questions of scientists and clinicians to encourage them always to explain things in plain English.

How has being a RaP volunteer benefitted you?

Being a Rap volunteer has helped me in ways that are too numerous to mention. Probably it has helped me to understand my asthma better and to understand that to keep it under control I must take my medication. But it has also helped me to understand some of the wider issues of asthma.

Being a RaP volunteer has shown me that many life-threatening outcomes for people with asthma occur because they do not take (usually their preventer) medication. I am now a massive advocate of checking adherence.

What has been your best experience as a RaP volunteer so far?

The best experience of being a RaP volunteer for me has been the process of seeing people living with asthma accepted as equal partners by scientists, clinicians and other professionals researching asthma.

Much of this has been because Asthma UK has been a massive promoter of this, and scientists know their applications for funding will be affected if they do not recognise the difference lay involvement can make.

What are your hopes for Asthma UK's research, and asthma research in general, for the future?

I think Asthma UK’s research priorities are the right ones. In an ideal world I would like to see research that finds a way to prevent and if not prevent, cure asthma so that it is not the life limiting condition it remains for so many people. In the meantime research needs to concentrate on controlling asthma with the aim of preventing asthma attacks which still kill people on a daily basis.