Case studies

Read the experiences of some of our Asthma UK Research and Policy volunteers and what getting involved in our research programme has meant to them.

Asthma UK involves over 150 people affected by asthma in our research programme to make sure that we're funding research that will benefit people with asthma.

Here, three of our volunteers share their experiences of getting involved in our research programme as Research and Policy (RaP) volunteers, why they feel that research is important and what they want research to achieve for people with asthma.

If you would like to recruit a RaP volunteer to your activity, you should read the section on our website on involving people with asthma in your study or project before completing an application form. Alternatively, please contact the Asthma UK Research Team at research@asthma.org.uk.

Kim-Leng Hills

What is your experience of asthma?

I was diagnosed with asthma at the age of 12; it was brought on by Hayfever and dust allergies. I was very fit and sporty, having trained in Karate for over 7 years; both my parents and I were very confused as to why I suddenly had a problem with breathing. I remember being too scared to train, so I quit Martial Arts and I refused to do most sports other than swimming until my late teens. At the time, a lot of people I knew were not educated on asthma or the fact it could be life-threatening.

In my adulthood, my asthma was often brought on by anxiety and stress. I felt it restricted me from getting my dream job and I would often struggle carrying heavy bags and equipment with me. I would end up having a multitude of Lung Function assessments and medication I became hugely dependent upon.

When I began to train back into Martial Arts again, I started to pay attention to the impact my mentality had upon my asthma. In this way, I have made changes to my lifestyle and diet that has resulted in me being able to manage my asthma much more effectively.

Of course, I still attend my Asthma Reviews and have an emergency inhaler in case either of us ever need it, as well as monitor my lung capacity every month or so.

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

I felt Asthma UK gave people like me a chance to make a difference by becoming that voice more so than many other charities I've ever worked with or read about.

Why do you think that research into asthma is important?

Research into how the disease develops and ways it can be managed and prevented will help change people's lives it is from this research that, albeit slowly but surely, government policies are changing about asthma as well as our expansion for knowledge and education. In doing so, more lives can be saved from asthma attacks that could have been prevented.

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

Due to Asthma UK, I have had the wonderful opportunity of being involved in a multitude of projects. I have been on the Research Lay Review Panel for a number of years, enabling me to assess and advise a number of research grant applications twice a year and also help nominate an innovative researcher I feel will make a huge difference in the future of asthma research. Analysing and advising these papers, whilst feeding back to the Panel certainly feels like you are making a difference and allows you to feel a part of the future of asthma research knowing that you helped enable a project to go ahead, or advised a researcher on how to improve their application.

I have also been sent to a number of conferences with the British Thoracic Society and Asthma UK, and I have been a patient representative to the British Medical Society and British Medical Journal. In 2014, through Asthma UK, I was invited an honorary place on a clinical Trial Steering Committee by the National Institute for Health Research, which I am a Patient Advisor for an on-going national clinical trial. The role involves advising a panel of professionals who are all either leading or overseeing the clinical trial.

More recently, thanks to Asthma UK, I was invited a place in the Patient Advisory Panel for the European Federation of Allergy and Airways Diseases Patients Association (EFA) project called myAirCoach. The role involves working with a panel of other patient advocates from around Europe helping to advise the creation, management and execution of the project.

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

I think having direct involvement with people affected by asthma is a hugely important way of learning about whether or not certain policies and research is effective or not. Those who are affected by asthma are inevitably going to be impacted first-hand by the research and outcomes of any research or policies that are made, so their advice and feedback is essential. Allowing people affected by asthma to have an involvement or a say in research and/or policies is more likely to result in a much more successful outcome.

How has being a RaP volunteer benefitted you?

Being a RaP volunteer has helped me understand the ways in which research is executed, and the processes researchers go through in order for their research to even be given the green light to go ahead.

I have found that through reading so much about asthma research, it has enabled me to explain to other friends who are impacted by asthma or other health difficulties the importance of prevention and managing our own health and lifestyles.

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

I have enjoyed every aspect of being a RaP volunteer. Every volunteering opportunity I have done has made a major difference within asthma research be it either now or will eventually make a difference in the future. That's what makes each project I seem to be given, or apply for, a brilliant experience.

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

I hope that one day everybody around the world will understand the severity of asthma so that people begin to care about their own treatment and management for it. I hope that research will help target specific aspects of asthma to result in the prevention of the disease from developing into chronic stages.

It is through research that we can all understand what asthma is, how it affects us, and how it can be treated and prevented. I hope that Asthma UK's research and its opportunities for patient involvement also inspires a dramatic change in research sectors as a whole, as I feel that this is the way forwards. There should be much more patient involvement, and I don't mean by filling in a questionnaire, I mean actively being able to influence research and policies on a large scale, directly.

David Supple

What is your experience of asthma?

My oldest son Alex has had asthma since early childhood, along with eczema, severe food allergies and hayfever. He's now 14 and his asthma is generally well controlled, but we have spent many nights in hospital wards when this delicate balance is disrupted. Through my work with Asthma UK I have met many people with very severe asthma, so in many ways, we count ourselves as lucky.

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

I have been involved for so long now, that I honestly can't remember when or how my involvement started, but it has certainly built steadily, powered by my own desire to be involved in not only understanding Alex's condition more, but also putting something back into helping Asthma UK help others in our community.

Why do you think that research into asthma is important?

Whilst I recognise that asthma is a complex condition that affects different people in different ways, I have been involved with asthma research for long enough now to be confident that it will eventually become a thing of the past. But this will only happen with consistent investment and a determination on behalf of all of those involved in understanding both the cause and the potential cures for the condition. It has been fantastic to be involved in some aspects of that journey so far, and I am ever hopeful that that journey will be one that is achieved in Alex's lifetime.

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

My involvement has really grown over the years principally on the back of my participation as a lay member of the Asthma UK Research Panel. This led on to joining the patient input platform (PIP) for U-BIOPRED (an EU-wide research project using information and samples from adults and children to learn more about different types of asthma) where I became Chair. I have subsequently become involved in the PIP for the new RASP-UK research programme (a large scale UK research project that aims to target treatments effectively in patients with severe asthma) and I have joined the Steering Committee for an exciting new clinical trail that is evaluating the effectiveness of a new treatment - Temperature Controlled Laminar Airflow (Laser for short). I have also become involved in the wider context of medical research in the EU I am a patient expert for the European Medicines Agency and I have joined the Scientific Advisory Board of ERACoSyMed - a new multidisciplinary European consortium that joined forces to develop an implementation strategy (road map) for Systems Medicine. I think that all probably demonstrates how your involvement with asthma research on behalf of Asthma UK can grow!

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

I believe that the best research comes as a form of collaboration between the research community and the patients who are affected by the condition. I have seen good patient engagement lift recruitment rates, provide clarity to the supporting study documentation and provide a lay voice that can help interpret the outcomes of research into language that helps boost public interest and provide a platform to broaden support for future studies. When research is well understood and widely communicated to the public, gaining greater levels of financial support and focus become much easier.

How has being a RaP volunteer benefitted you?

It has given me a fantastic sense of involvement and control I have learned so much to the benefit of Alex and others who I talk to about asthma barely a day goes by without it being a topic of conversation somewhere in my life. Through the volunteer activities, I have been lucky to meet some of the leading asthma researchers in the world and they have all been interested and engaged in Alex's story. Their commitment and passion to improve patient outcomes has equally driven my own engagement, and I have learned a lot about myself in the process.

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

Getting to the end of a big research project like U-BIOPRED has been really interesting to be part of 5 years is a long time to be involved with a project, and as in all aspects of life, there have been a fair share of ups and downs along the way. As the research now nears the end, it is really exciting to see the potential outcomes resolving hopefully for the direct benefit of all patients with severe asthma across the world as the research becomes a platform for other studies to build on.

Talking about the work of Asthma UK and the research at events has also been great to be involved in. I have spoken with alongside Alex to huge audiences at the European Respiratory Symposium in Vienna, ran a 5k with an Olympian, and met Sir Alex Ferguson and the inspiring Olympic rower, Katherine Grainger, whilst speaking at charity fundraisers. It has been fun and interesting in equal measure.

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

We all want a cure don't we? It is essential that the research continues apace, and it's wonderful to see the UK leading in so much of this on the ground. The involvement of RaP volunteers is essential to help build and maintain an understanding of how asthma affects daily lives, how medication works (or not!) and what the impact of asthma is on people where priorities for treatment or support lie to help influence that research agenda.

Val Hudson

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.