An Open Letter to the UK National Screening Committee

Dear UK NSC,

Earlier this morning, as I scrolled through Twitter, I came across a tweet that stopped me in my tracks. Now, what an earth might that tweet have been, I hear you asking? Here, let me refresh your memory:

CRY

I pulled open the article, the red hot feeling of rage already pushing its way through my veins. The anger… the disgust… the disbelief… it heightened with every single word until I could barely finish the post.

Because what sane person – sorry, what sane committee – could ever vote in such a direction? What living, breathing human being would ever believe that, actually, there’s no real need for young people to have this kind of easy access to cardiac screenings. I mean, sure, young people duh… it’s only those 50+ that have heart issues right?

Wrong. So, so f**king wrong.

I want to tell you a story. It isn’t my story to tell… not really, anyway. But it’s a story that has shaped mine and my loved one’s lives beyond recognition. A story that could have spun so very differently had screenings such as this been readily available. Had we been forced to face reality long before it was too late.

On Christmas Day 2008, my Dad my sister and I were sat watching festive TV after a feast of a dinner. My sister was 25, I 17. We’d had a fantastic day full of laughter and love, as you do at Christmas.  There were no signs, no hints that anything would change that. We all had “full of beans”. We all felt… fine.

I will never forget the moment my sister turned to my Dad, her face a deathly white.

“I don’t feel too well, Dad…”

It was probably about 10 seconds later that she was having a fit, her body contorted into shapes I didn’t know possible and her eyes rolling into the back of her head. I remember being fixed to the armchair, staring in disbelief as the walls closed in around me. I heard nothing but a ringing in my ears until she stopped fitting and fell into a heap on top of my Dad. That’s when his screams filled my ears. That’s a sound that I’ll never, ever forget.

I ran to the phone and called 999, a numb calmness taking control as I recounted to my Dad instructions. He carried out CPR onto her lifeless body whilst I kept the phone gripped in my hand. Minutes later, the flashing lights and siren of the ambulance brought me back into the room, and I fell into a bundle of wails, the emergency team pushing me into the kitchen away from the sight.

Lara had been hit by a cardiac arrest: four cardiac arrests, to be exact. The survival rate of cardiac arrests outside of hospital in young people is around 5%.

She was healthy. There was nothing wrong with her. So why was this happening?

By some miracle, Lara survived. She was in a coma from Christmas Day through until New Year’s Eve before leaving hospital on January 10 with the addition of an ICD (implantable cardioverter defibrillator) inside her chest. They said it would never happen again… that it was a freak accident. The ICD was “just in case.”

Until it happened again in 2013. Luckily the ICD did its job. It kept her alive, again.

Now tell me that there isn’t enough evidence to prove that cardiac risk in the young is a real thing? Show me the unclear data. Explain to me why on earth you wouldn’t want to diagnose problems like my sister’s before it’s too late.

And most of all, please shed a bit of light on this corker of a statement, delivered by Dr Anne Mackie, Director of Programmes for the UK NSC:

In addition to concerns about the test, there were uncertainties about the overall benefit of identifying people at risk, as currently the harms seem to outweigh the benefits.

Let me think about that one… oh yes, that’s it. How about the fact that if my sister’s heart condition had been recognised earlier, she could have had an ICD installed and avoided the biggest ordeal of her life. I wouldn’t have had to see my sister, the light of my life, dead on my living room floor.

My sister was lucky. But she so easily could not have been. And so many others aren’t.

Every year we lose 600 young people to un-diagnosed heart conditions. These aren’t just figures plucked from thin air. This is real and this is happening.

Sudden Cardiac Death doesn’t show any signs that it’s coming. It’s called sudden for a reason. It strikes when you’re least expecting it, and it can happen to absolutely anyone.

And you can tell me that “available tests were not accurate enough to correctly identify conditions” until the cows come home… because we all know that is utter rubbish.

This comes down to money. Funding. Cuts. End of discussion.

But what is the price of a human life? Of 600 young lives, every year?

What is the price of my sister’s health?

You’ve said that there will be no further reviews on this case until 2018/2019 (by which time 2,000 more young people will have died due to lack of diagnosis). What I am asking you, what I am pleading you, is that you bring this forward. That you re-address it right now. That you value human life above wealth.

I’m pretty sure that this open letter won’t do much to change that. But i’ll tell you now… that’s not going to stop me trying.

Because I for one believe that doing nothing is NEVER an option.

Sincerely,

Amber Bell

If this is something you feel strongly about, please support my bid to amend this decision by signing my petition on Change.org. It will only take a few seconds. Let’s work together for change.

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