Speaking as a patient at the ERS Congress in Madrid
Karen Needham and Oxana Rucsineanu talk to us about their experiences speaking in sessions at this year’s ERS Congress in Madrid.
Can you tell us a little bit about yourself?
KN: My name is Karen Needham, I have severe Eosinophilic Asthma and was diagnosed aged 49 years. I developed an allergy to plaster dust and house dust which caused my asthma when I moved into my new home.
OR: I am Oxana Rucsineanu and I define myself as a tuberculosis (TB) activist. I live in the Republic of Moldova and I am leading the Moldova National Association of tuberculosis patients “SMIT”. Being a member of the National Platform of TB non-governmental organistions (NGOs), the Global Coalition of TB Activists (GCTA), the TB Europe Coalition (TBEC) and TB People networks and having gone through a personal experience of drug-resistant tuberculosis, I have coordinated several projects since 2011 focusing on the rights and responsibilities of TB communities, the need to build comprehensive approaches to TB care and engaging communities in operational and clinical research. I am committed to advocating for constructive partnerships and efficient treatment processes, as well as to making TB voices heard in the global response to the disease.
How did you first get involved with the European Lung Foundation?
KN: After seeing a post on social media for volunteers as a patient advisor, I called ELF. Asthma was still quite new to me and I had recently started on a new asthma treatment. I was interested in finding further information about my illness as well as my treatment. I hoped speaking to other people who were going through the same as me could help, as well as possibly helping others. I was then asked if I would present my story at Congress.
OR: I had heard about the European Lung Foundation, but never had any active interaction with it until the recent event – the ERS Congress held this year in Madrid, which I really enjoyed. I had been contacted by the organisers and asked to present in a session on patients’ perspectives – of course I agreed, as I see the ERS as an open space that is willing to promote the perspectives of people affected by lung disease.
What was your impression of ERS Congress this year?
KN: ERS Congress was an amazing experience. I hadn’t been before and wasn’t sure exactly what to expect. I did my speech on Saturday morning in a fully booked seminar and attended two other meetings. I had access to lots of seminars for the whole of Congress, and I attended the ones applicable to my type of asthma, which were very informative for me, allowing me to understand more about my illness and the medications I’m on and why. There was a hall with information posters, which I went into and read about biologicals and their impact. It was a fabulous opportunity, which was very informative and made me understand so much more than I think I ever would have without it.
OR: Being present for the first time at the opening ceremony, seeing the number of the attendees and participating in the Congress, I really understood the ERS impact in the region and the work the ERS does in science, education and advocacy. It has been an incredible opportunity to be part of an event of such magnitude. I have also learned that the ERS uses the patient voice and their resources to shape public health policies to benefit those affected, making them valuable partners in the joint effort to end lung diseases.
What was it like to share your experiences as a patient speaker at Congress?
KN: When I started taking my new biologic, it worked literally overnight, and it was very overwhelming to go from not being able to breathe and barely function, to wake up the next morning and suddenly be able to breathe and feel so much better. 100% better in fact. Writing my speech and actually saying it out loud was very beneficial, helping me to cope with my feelings. I also hope my experience will help others in the future.
OR: Every time I participate in an event I feel responsible, as I hope that people that listen to my speech leave the room with the idea that it is time to engage more with patients. This is what I have strived for since the beginning of my work in TB – I would like patients to be heard and to be treated with dignity and respect. It’s only by raising awareness, forming partnerships, and supporting personal perspectives, values, beliefs and preferences that the best outcomes can be achieved.
What would you say to others who are considering speaking at a similar event?
KN: Do it. Definitely. Given the chance, I would absolutely do it again. If I helped other people with my experiences, then it will have achieved what I wanted to do. Everybody’s story is different. We could all add to the story which could so easily help others.
OR: I would encourage patients and representatives of affected communities to participate in similar events. The incorporation of patients’ perspectives and opinions into scientific and educational events should be an accepted approach worldwide.
Read more about ELF activities at ERS Congress