The event will explore the latest advances in chronic cough research, diagnosis and treatment, while encouraging discussion between patients and professionals on the future of care for this often-misunderstood condition.
Ahead of the conference, we spoke to two patient representatives who will be sharing their experiences of living with chronic cough and contributing their perspectives to discussions throughout the event.
Andrew is a member of the European Lung Foundation (ELF)’s Chronic Cough Patient Advisory Group (PAG). He joined the group less than a year ago after discovering ELF while looking for information and support for his own chronic cough. Having lived with the condition for many years, Andrew is passionate about ensuring that the voices of people living with chronic cough are included in conversations about research, treatment and care. At the ERS Cough Conference, Andrew will provide a patient testimonial during a session on chronic cough and contribute to discussions on the condition, including its variability, treatment and management.
As this is the first time I have ever been to a medical conference, I am looking forward to attending events that will provide me with the latest insights into chronic cough, and in particular those where I am called upon to contribute the patient’s perspective.
Having patient representatives attending the conference will give clinicians access to the patient perspective as an integral part of their discussions and deliberations, which I hope will prove valuable to both patients and practitioners alike.
My attendance allows me to communicate the patient perspective by sharing the day-to-day reality of living with chronic cough, which has far-reaching impacts encompassing physical, emotional and social consequences.
Specifically, I hope to advocate for earlier adoption of speech and language therapy, ideally in primary care, during the diagnostic process itself. Some of the techniques are very straightforward for patients to incorporate into daily living, and they may help to control or reduce laryngeal hypersensitivity at a much earlier stage for many sufferers of chronic cough.
My presence as a patient representative is itself an example of the patient–professional partnership, but the partnership goes beyond representation. It involves actively contributing lived experience to discussions with clinicians and researchers, helping to ensure that scientific and clinical advances are aligned with patients’ needs, priorities and everyday realities.
I hope that this will lead attendees to a more rounded and holistic understanding of chronic cough, with patients acting as a bridge between clinicians and the lived reality of the condition. In particular, patients can help illuminate the emotional and social dimensions that studies and clinical data alone cannot fully capture.
I think it is not just important – it is essential that we are involved. My personal experience tells me that patients have a valuable contribution to make, and I am confident that this will ultimately lead to better outcomes, not least through more empathetic, patient-centred care. It may challenge assumptions, reveal unmet needs, and encourage new ways of supporting patients that better reflect their lived experience.
Patients should always feel heard and valued throughout their healthcare journey rather than merely being cases to be managed.
Ruth is a member of the ELF Chronic Cough Patient Advisory Group (PAG), which she joined in 2019. She also sits on the Respiratory PAG at King’s College Hospital and has participated in several clinical trials focused on chronic cough. Ruth is passionate about improving understanding of chronic cough and ensuring the patient voice is included in discussions about research, treatment and care.
Like Andrew, I am presenting a short 10-minute testimonial briefly documenting my journey and the challenges encountered along the way as a patient with a refractory chronic cough. I will also be taking part in discussion sessions regarding the disease, assessment, variability, treatment and management of chronic cough.
This will be my first-ever conference. I feel very privileged to be asked to take part in it and to contribute personally as a patient and as a PAG representative.
Despite previously working in the NHS and being familiar with a lot of medical terminology, I am really looking forward to listening to the more in-depth scientific presentations, learning more, and hearing how the chronic cough patient could be best served going forward, especially in the primary care setting.
I am certainly an advocate for early introduction of speech and language therapy, which, though not a cure, can be useful for reducing, managing or controlling refractory coughs.
I have no expectations but have high hopes for chronic cough to be designated a disease, as it greatly impacts every aspect of the sufferer’s life, not forgetting their spouses, family, friends and colleagues.
Chronic cough affects around 1 in 10 adults and can have a significant impact on daily life. By bringing together people with lived experience alongside clinicians and researchers, the ERS Cough Conference aims to encourage meaningful discussion about the challenges of living with chronic cough and the opportunities to improve diagnosis, treatment and care.
To find out more about chronic cough, including symptoms, diagnosis and treatment options, visit the ELF chronic cough information hub: https://europeanlung.org/en/information-hub/lung-conditions/chronic-cough/
Our Patient Advisory Groups or PAGs are made up of people who have an interest in a particular lung condition or topic related to lung health. Members share their views and get involved in projects to help improve treatment and healthcare. If you are interested in joining a PAG or would like further information, please get in touch at info@europeanlung.org.
If you are interested in getting involved with patient involvement and advocacy, you can sign up to our free, online, self-learning programme, the European Patient Ambassador Programme (EPAP). EPAP introduces patients and carers to some of the basic skills and knowledge needed to represent yourself and others successfully.
