Speaking out on IPF

Ron shares his experience of speaking about IPF in parliament.

My name is Ron Flewett. I’m 53 years old, living in Lincolnshire. In April 2014, after many tests, I was finally diagnosed with the lung condition idiopathic pulmonary fibrosis (IPF).

My world fell apart when I got the news from the consultant. She confirmed that sadly there is currently no cure for IPF, and that around half of people affected live no more than 3 years after diagnosis. This condition progresses at different rates for everyone and treatment varies from person to person.

After I was diagnosed I contacted the British Lung Foundation helpline for support and advice. The help I received from their qualified nurses was invaluable. They really took the time to listen to and address all of my questions about the condition and how it would impact my life.

Not long after this, the BLF asked me if I would like to join a group who were going to meet MPs in Westminster to increase IPF awareness. I was very proud to have been asked and of course had no hesitation in accepting.

When the day of the meeting arrived, I travelled by train from Peterborough to London. I didn't really know what to expect and it was an emotional journey. I had butterflies in my stomach and tears occasionally rolling down my face.

I arrived at Westminster and met with the other volunteers affected by IPF. I had previously talked to a few of them on a Facebook support group and it was like being welcomed home. We all had the opportunity to share our stories of diagnosis and treatment face-to-face, something that doesn’t often happen when you have a relatively rare condition like this one.

We then headed into the meeting along with Biz and Lucinda from the British Lung Foundation and the MPs. I still didn’t really know what to expect at this point - and of course the butterflies were still going! There was no need to worry. Alex Cunningham MP opened and chaired the meeting and immediately put me at ease.

The meeting allowed both people with IPF and carers to freely voice their opinions and concerns about treatments they have received and what they felt was needed to improve public awareness.

The meeting was a big success. Already questions have been tabled in parliament about the issues we talked about; these will be answered by a minister in the Department of Health. And parliamentarians will also be writing to the Department of Health, NHS England and their local CCGs requesting more action on IPF.

This isn’t the end of the campaign though. I hope to be involved in more of these parliamentary events for people with IPF in the future, and if you’re someone who is affected by the condition, you can write to your local MP and ask to meet them to discuss your experiences in person.

During my journey back home on the train, I reflected on what the day had meant for me. I felt very proud to have been part of the group who had the chance to speak on IPF and be heard. But hearing everyone’s stories also brought home the seriousness of this condition. I hope this important step will lead to a more positive future for everyone affected by IPF.

We're working hard to improve the support available for people affected by IPF. Read about our IPF charter and find the latest research, health and campaigning information on our IPF web pages.