Ron Flewett is living with idiopathic pulmonary fibrosis (IPF). For this year’s European Respiratory Society (ERS) Congress, he volunteered to produce a video to present in the symposium Fear and anxiety, psychological wellbeing and prevention of psychological distress in chronic lung diseases.
In the video, Ron shared his experience of how his condition affects him mentally. He gave some advice to healthcare professionals about addressing the psychological impact when treating their patients and how they can help to reduce the distress they face. Ron received very positive feedback from healthcare professionals and other patients.
We asked Ron some questions about being a patient speaker at the ERS Congress and about the positive responses he got.
Why did you get involved with the ERS Congress?
I have been aware of ERS for a couple of years, but as a patient I have not been able to get involved in it, so when I was asked by EU-IPFF (European Idiopathic Pulmonary Fibrosis & Related Disorders Federation) to take part, I thought it would be a great opportunity.
Was it worthwhile making a video to present at the ERS Congress?
It was very worthwhile as it allowed me to give a view from a patient perspective to healthcare professionals about the difficulties we live with daily.
How did you feel about the feedback and social media engagement you received?
It made me feel very proud and I was really pleased with how the healthcare professionals reacted to the video.
Would you encourage other patients to get involved?
I would encourage other patients to get involved by watching videos from other patients and see how they can make a difference.
How do you think the patient voice can influence research?
I believe that as a patient, talking to healthcare professionals helps them to really understand what a patient needs and which treatments can best help them.
What do you think the advantages are to having a virtual conference?
I prefer face-to-face meetings, but an advantage of virtual meetings is having bigger audiences.
Have you shared your video with other organisations? If so, how have they viewed it?
I shared my video with the local hospice as I thought is was powerful in helping people with other conditions who are feeling lonely, isolated and depressed.
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