Action for Pulmonary Fibrosis > News > Fight IPF Choir > Voice of the Patient – Secrets, Celebrity and Song: Part 2

Voice of the Patient – Secrets, Celebrity and Song: Part 2

The last blog was issued before the release of the video, here’s a bit of background into it’s making.

Firstly, what a great end product and a fine springboard from which to launch a number of ideas. The style of editing certainly captures the mood of the day and accurately reflects the extent to which it tugged at the emotions. I guess we’ve watched it a dozen times now and I can’t envisage us growing tired of it. Running out of tissues yes, but not tiring.

Reaction from the media has been great with a few TV interviews, although nothing national yet, but loads of quality regional radio and newspaper coverage. We’re so proud to have been given the chance to play a part in the whole thing, and the grandkids were superb throughout. For anyone who’s interested they’re on the front row of the choir and from left to right the first girl is Lauren (12), the third is Megan (6) and the forth is Emma (8). That’s enough of me being the very, very proud granddad.

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So, I was to finish my tale with a summary of the follow-up interview. If you remember we’d spent almost six hours laying bare our home and history for the purposes of the cause. There was some intrigue after we were told that for all the day’s efforts, the result would likely amount to just thirty seconds of footage. Over a day a lot gets said and quite a bit of it recorded, what if they publish the lines you really wished you hadn’t said, or worse, couldn’t remember you’d said?

I say this because Jackie remembers explaining the factors leading to her taking early retirement as a teacher just after my diagnosis; one being the way the profession had become disproportionately focused on box ticking and league tables. I was supportively adding the odd comment, a few of which she recalls could be construed a little inappropriate. Rather than stop the filming and tell me, she let it go, and had worried ever since, bless her.

After much preparation I was ready for the day. Preparation for what? I hear you ask. Well, for me if someone is going to ask me questions about something I care passionately about then I’m going to figure out how best to use that opportunity. Please don’t forget that at this time I have no idea we were only likely to get thirty seconds.

By the time the crew arrived I was like a coiled spring, loaded with facts, opinions, helpful advice, contact details, my story from diagnosis, it’s impact on Jackie and I, how friends and family had helped, and how wonderful it is to be working with Action for Pulmonary Fibrosis and most importantly, how it’s possible to still enjoy ourselves despite this disease.

Having tried at every opportunity throughout the day to insert as many little pearls of wisdom as possible, I could only hope that at least some semblance of it all would shine through in the finished article. Delighted as we all are with the result, I was at least initially saddened that my first visual appearance was to the line: “My oxygen’s run out.” Not a sentence one might expect after hours of planning, and hardly a pearl of wisdom!

Anyway, the day began around 10:00am with the arrival of Rosie, Claire, Rob and an awful lot of large black boxes. There was a very convincing sense of organisation from the start, Rob identified himself as the cameraman by rapidly assembling one with the precision and speed of a marine putting together an assault rifle. Claire was doing the directing while Rosie spoke of the logistics involved in facilitating projects of this nature.

“We might just have to move a couple of things, is that ok?” said Rob as he paced around the lounge looking at the best options for camera angles. We agreed and we’re thinking of plants or ornaments, when a sofa was suddenly lifted and moved to the other end of the room. I thought, “That’s the heavy one.” Jackie thought, “I knew it!” and they probably thought, “That’s possibly the cleanest floor we’ve ever seen under a sofa!”

Soon enough we were settled and relaxed answering questions on all aspects of living with the disease and our experience in London with fellow sufferers. The day was long but not for the lack of effort on the part of the crew, they had worked out a plan and saw it through professionally and with great consideration for our needs.

A section that didn’t sit so easy was the request to get the wedding album out. I suppose the only reason is that whenever you see someone going through one on the news it’s because they’ve lost a partner and it seems a bit contrived. Truth is it’s evocative and of course that’s what matters but I wasn’t upset it didn’t make it here, but fully understand it has a part in the bigger picture, despite the fact that I was the double of Peter Sutcliffe.

APF Ambassador Tony Gowland talking at the Voice of the Patient inaugural meeting

APF Ambassador Tony Gowland talking at the Voice of the Patient inaugural meeting

The fight for awareness is most certainly gathering pace. I was speaking at a ‘Voice of the Patient’ conference last week organised by Action for Pulmonary Fibrosis, If I’m honest I felt lousy and was far from my best but I could still talk. It was a particularly breathless day for me which means that while talking I need to take breaks to get my breath back. This may be after a minute or just fifteen seconds, sometimes less.

I’d asked Wendy Dickinson, a trustee, to help out if needed and figured we could make it conversational in tone if necessary. Wendy had taken over as I was talking about my early involvement with the charity and reminded delegates that it had only existed for three years. This never ceases to amaze me. It prompted me to go off script and recall the day Jackie and I went to meet the trustees after I had been offered the role of ambassador.

We all have preconceived notions of what charities look like and mine was a group of kindly souls, sat around a table surrounded by jam and cakes planning ways to fix the church roof. I was humbled to sit amongst seasoned professionals who’s plans used words like awareness, support, research, education, international, parliament and who spoke confidently of strategy and growth.

Voice of the Patient Council

Voice of the Patient Council

I’d been diagnosed for eighteen months before the charity was even born and they are now an internationally recognised body in the fight to improve the futures of those touched by this disease. Moreover it is clear to see that their commitment and professionalism is quite simply bone deep and I for one am so very proud to know them.

So another milestone is upon us as IPF Global Awareness Week draws to a close and we are blessed with another powerful tool to help take the next steps. Thank you so much for reading this, you have made a difference.

#FIGHTIPF

In case you were wondering we’re featured for exactly thirty seconds!

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