5/23/2012 9:58 AM
By Paul Willgoss
Well, sort of (I’ll explain the reference at the end, bear with me)…
May is always a busy month, none more so than this year.
Marathons to run, awareness-raising to do, politicians to chat up (and not in a lusty way), nationwide reviews of services to participate in, more runs and walks to do… and the day job, and the arts course I’m doing for fun.
Let’s start at the top—the Belfast Marathon, 26.2 miles. Seven minutes faster than I’ve ever done 26.2 miles before, in conditions that had much more experienced marathoners than me cursing the gods of weather. There is something about horizontal driving rain that take the joy out of running!
There was also the little matter of the hills, or rather hill—seven miles of “hill,” just sharp enough that you couldn’t relax into it, with a downhill so steep that, with it wet underfoot, I couldn’t just let gravity take its course. Then it was a slog, hard work, not pleasant, with weather so cold that my heart rate was low enough to make me a tad twitchy—most of the reason for your heart rate going up when you run is your body dumping the heat out of your system…
Anyway, a very good personal best, no major injuries (minor strains and chafing, but you’d expect that), the usual mental tiredness following that level of concentration. If you want to follow my passage, click here.
“Belfast the Brutal” is how that run shall ever be known, but in a curious way I did love it. I ran the vast majority of it, unlike my normal wearing out at 14 miles, and the people were fantastic. I’ll be back, but maybe not next year…
One thing that does happen every year is Children’s Heart Week (the annual U.K.-based awareness raising and campaigning week) and what a week it’s been. As one of the trustees of the Children’s Heart Federation I know what happens behind the scenes to make the magic happen, and this year the magic was special.
We started with an update on how pregnant women and babies should be examined to check for CHDs so they can be operated on when they need it and ideally not as emergencies. The U.K. system is being reviewed, and fitting it all together will result in a fairly comprehensive screening process for all parents who choose to do it. But as was explained, screening is never perfect. This is where the next development comes in: ThinkHEART, a mnemonic to give you an easy checklist of what symptoms you should watch out for and get a doctor to check.
The last big thing to mention is that the services for adults with CHDs are being reviewed, and I’ve been part of the group setting the standards to make sure that we get the care we deserve and need. The documents are published, and are open for comment, so if anyone from the U.K. wants to comment or come along to an engagement session then please do so. The standards are based on best practice around the world, so hopefully will form a template for other countries looking to ensuring good services. What you can’t see in the documents is that hours of work behind the scenes to make sure they’re good. My role is to be one of patient representatives, keeping the clinicians honest with my beguiling requests for evidence and often just asking the most powerful word in a patient’s vocabulary—why?
The Lusty Month of May reference—it’s a song from Camelot the musical—is one of my favourites, not normally for this song but for the discussion on power politics, e.g. that it should not be might that makes right but might should work for what is right. And this week has shown we as a patient group can get the mighty (the clinicians and the politicians) working for what’s right for us.
That was a canter, through, and the month is only three-quarters done! I’ve runs to run and walks to walk and essays don’t (unfortunately) write themselves—so take care and keep plodding.
Marathon runner, GUCH (Grown Up with Congenital Heart Disease), long-distance hiker, charity trustee, patient advocate and whisky lover—Paul Willgoss is all of these and more. A member of the Most Honourable Order of the British Empire, his efforts both in front and behind the scenes for those with congenital heart defects have been recognized at the highest levels in his native U.K.