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.


Comments

Hi Sue, I'm so sorry to hear about your husband, it is never easy to see our loved ones go through the end of life. We are campaigning to improve specialist palliative care for IPF as part of our <a href="http://www.blf.org.uk/Page/IPF-patient-charter" title="IPF patient charter" rel="nofollow">IPF patient charter</a>, as well as increase funding for IPF research. A big thank you to your daughter from all of us at the BLF - we couldn't continue our work without your support. All the best, Suzanne British Lung Foundation
Hi Lynn, There is certainly a long way to go - that's why we created our IPF charter and continue to campaign for more research funding, timely and accurate diagnosis and better quality care for IPF. And we hope to run more parliamentary events like this one to keep raising awareness of IPF and to highlight the urgency of the need to act. If this is something you would like to be involved with in the future, do let me know and I'll pass on your details. It's fantastic that you've been in touch with all those MPs! We need as many people as possible to speak out about this condition to keep our campaign moving forward, so thank you for your support Lynn. I'm sorry to hear you're feeling so alone, we have lots of support available for both you and your husband might be helpful. Our <a href="http://www.blf.org.uk/Page/Helpline" title="British Lung Foundation helpline" rel="nofollow">Helpline team</a> is available if you want a chat or have any questions about lung conditions, and we've also just uploaded a list of <a href="http://www.blf.org.uk/Page/Pulmonary-fibrosis-support-groups" title="Pulmonary fibrosis support groups" rel="nofollow">pulmonary fibrosis support groups</a> that might be of interest. All the best, Suzanne British Lung Foundation
My husband was diagnosed with pulmonary fibrosis when in the later stages of the disease. He did not live long and suffered a lot. My daughter is running the Great North Run for the second time in aid of The British Lung Foundation. This is a terrible disease and more research needs to be done.
I was told i have IPF in may after at least 5years of tests my mum died of it 14 yrs ago i feel totally alone weve been in touch with over 50 MPs and got no were there is no support at all and just feel like my husband who has COPD is fighting all the time and we are getting no were at all nobody thinks there is any urgency for every year the government sit back there will be another 5,000 deaths
I have never heard of this and having Asthma know what I feel at times and BLF sounds very much worse so. I feel strongly that money going to stupid things like gastric bands and the such needs to go into finding some sort of cure or away of catching it earlier To much money is wasted on things which people do to themselves and should be made to take more care of their body themselves not using other peoples money
My father had this illness 3 years ago this year but on the 27th July 2011 he saddly passed away in hospital after being diagnosed with it in March 2011. He suffered greatly from it and with alot of pain Non of the doctors he saw knew about this illness and it wasn't until the march 2011 when a consultant told him what he had But their is No cure only treatment which don't always work all he was told by his own doctors till then was that he had heart failure. I only hope one day their will be a cure for this illness for it is a horrorable illness to have.

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31 July 2014