Voice of the Patient Day

The wonderful people at Action for Pulmonary Fibrosis invited me to the Voice of the Patient Day this past Saturday, an annual event for those with close personal links to Pulmonary Fibrosis to come together and share their thoughts and opinions on how best we can come together to raise awareness and support those who are diagnosed with IPF. And, what made this day all the more special was that it coincided with the launch of IPF World Week, which I spoke about in more detail in my previous post. All pictures courtesy of Action for Pulmonary Fibrosis.

The Attendees at Voice of the Patient Day

Action for PF organised this at a beautiful location, The Belfry at Sutton Coldfield which is a gorgeous resort that combines fine dining, stunning interiors and a bit of golf if it should tickle your fancy. Set at the back of the hotel in an impressive conference room, a group of people came together with the same ideals. Some were diagnosed with IPF, some had received successful lung transplants, some were carers and some were fundraisers who had gone above and beyond to remember their loved one who had passed.

We were given the opportunity to speak in smaller circles about our own experiences with IPF, many of those sat at my table had done incredible things in fundraising but all had heartbreaking stories to tell of how their loved one died, and most of them so tremendously young. There were also many who are struggling with not only the disease itself but the lack of awareness, the lack of support and the obvious postcode lottery that is taking place as to how well you are looked after. There were Carers who themselves need a wealth of support, having been a Carer for my Father I can too attest to how hard it is coming to terms with the new role you have with your loved one in such difficult circumstances. And quite rightly it was raised that support should somehow be given to those who are bereaved from the loss of their loved one.

One of the Action for Pulmonary Fibrosis Trustees was Doctor Simon Hart, a leading clinician in Interstitial Lung Disease, and who gave us a really interesting talk walking down memory lane of all that has or hasn’t been learned in the last decade of research into IPF. Whilst some progress has been made, it is clear we are still far away from making any sort of groundbreaking triumphs any time soon, which is why it is so vital to ensure the right support is given where possible.

As well as this informative talk, we were able to hear how far the charity itself has come in the last four years since its creation by founding member Mike Bray who unfortunately passed away earlier this year. Close to £1 million has been raised, education has been provided to healthcare professionals, support groups all around the nation are now going strong and new projects to help Carers are in the works as well as a £300,000 research grant that is to being offered to help further the knowledge into the background and treatment of IPF. Most importantly though, the organisation has held onto its roots and is going above and beyond to ensure they listen to the voices of those who are directly affected by IPF so that they are always thinking of new ways in which they can help or provide support where needed.

However, what the most memorable aspect of this day for me was the positive atmosphere, the willing to listen and the genuine care that was shown between these people who live all over the country, but had all got Pulmonary Fibrosis in common. There was a wealth of laughter, of kindness and a chance for everyone to speak open and honestly about their thoughts and feelings. With this passion, drive and good attitude I’m sure we can go much further on ensuring IPF has more awareness in the future.

You can follow Action for Pulmonary Fibrosis on Twitter and Facebook to see some of the brilliant fundraising and awareness events that have been taking place this week all over the country as part of IPF World Week. You can also find out more about the charity by visiting their website and if you have a few pennies to share, then I urge you to donate them to such a wonderful cause.



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