This month’s patient spotlight is on Olivia Fulton, who is living with severe asthma. Olivia is a patient advocate, member of the ELF Asthma Patient Advisory Group (PAG) and co-chair of SHARP – a European Respiratory Society (ERS) Clinical Research Collaboration (CRC). Here she talks about her life with severe asthma, her patient advocacy work and about the upcoming Severe Asthma Patient Conference, which she is co-chairing.
I am from Scotland and live in Edinburgh with my dog Ghillie, although my heart is in the Scottish Highlands where I long to live. I have had severe asthma most of my life and don’t know what life is like without having to take inhalers. They have always been part of me. I have always loved and will always love sport. I have had some fantastic experiences being able to represent Scotland in lacrosse and once my health became worse was able to move to a coaching and managerial role for both the Scotland Women’s Senior and U19 teams. I have the philosophy that when your body prevents you from being able to do something you love, there are ways to stay involved – you just need to look.
I used to work as a Renal Home Dialysis and Pre Dialysis Education Nurse but had to give this up in 2018. I enjoyed being able to help patients manage their condition and provide treatments to enable them to live their life to the best of their ability.
I never set out to become a patient advocate. As my severe asthma impacted more of my life I was frustrated by the lack of understanding and advancements in treatment. I set out to raise awareness of what life is like with severe asthma. This then evolved and I have become more involved in various aspects of work that is being done to help those with severe asthma. My involvement has grown and I have found it so rewarding, as being a severe asthma patient advocate is something I will always be able to do no matter what. In some way severe asthma has destroyed my life and prevented me from doing so much, but I am now able to use this very negative situation for good and to help others.
Being a patient chair of SHARP is an honour. It is the only CRC within ERS that has a patient chair. Often patient involvement in research groups can be tokenistic or an afterthought, with some academics involving patients because they have to. This is not the case with SHARP. My voice as patient chair is just as valuable as the other chairs and means that SHARP will be able to focus on what is really important for people living with severe asthma. For example, some of the research being done is looking at aspects of severe asthma that clinicians never thought of, such as the impact of fatigue. The patient group is considered equal and just as important as the scientists, clinicians or industry.
I am really excited about the Severe Asthma Patient Conference. It is something that has not been done before for people with severe asthma. It will not only be educational for people living with severe asthma but will also give patients the opportunity to hear from others. The topics chosen for the day have all been identified by patients as areas they want to learn more about.
The day will include a mix of presentations by medical experts and patient stories. It will also be an opportunity for attendees to ask questions to the medical experts and patients and have them answered live. I hope the event will encourage other people living with severe asthma to get involved and use their lived experience to help drive change. I hope they can see how beneficial it can be not just to others but for themselves as well.
There are a couple of things that I am really proud about. A few years ago I was invited to the Royal Garden Party at The Palace of Holyroodhouse in recognition of the voluntary work I have done for people living with severe asthma. I was also invited to speak at a conference in Dallas, Texas, USA about my role as a patient partner in research. More recently I have set up a virtual peer support group for people with severe asthma. It has only been running for 4 months but there are over 70 people who have joined the group from all over the world.
Being in the ELF Asthma PAG has been a unique opportunity where I have been able to meet other patients from across Europe who live with asthma. Until I joined I only knew people in the UK. I have been able to learn from other members of the group what asthma care is like across Europe. In the PAG we have also been able to identify where there was uncertainty by other stakeholders about how to involve patients in their research. As a result we hosted a workshop to enable people to learn more about patient involvement and have put together a patient charter which will be published soon. We are grateful for ELF’s support to enable us to do this.
I would say go for it. I had no clue what I was getting into when I first started, but a fellow asthma patient was able to hold my hand at the start to help me understand the different activities I would be involved in such as reviewing a lay summary or taking part in advisory groups. The great thing about being a patient ambassador and member of a PAG is that I can get involved in as much or as little as I want depending on what my personal circumstances are. I have had so many fantastic opportunities and made some lifelong friends as a result of being in a PAG.
Getting involved has far more positives than negatives. It is not only helping others and making research stronger and more applicable, but it gives you personal growth as well. I now have a greater understanding of severe asthma and the research process, and have gained more confidence and the ability to speak in public at large conferences – something I would never have done before.
So don’t be afraid to get involved. PAG members all support each other so you won’t be left alone if there is anything you are not sure about.
It may sound dramatic but getting involved as a patient advocate and ambassador has saved my life. It gives purpose to my days when my severe asthma has prevented everything else. There is always something I can do.
I am really looking forward to the Severe Asthma Patient Conference and hope that the people attending come away feeling as though they have learnt something and want to find out more about joining a PAG and getting involved in research.
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