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By IH Thursday 11 October 2012 Updated: 16/10 09:20
CHARITY really did begin at home for inspirational Trudie Lobban.
What started 20 years ago as a parent support group run from her kitchen in the tiny village of Newbold has evolved into an international charity at the forefront of the fight to raise awareness of heart rhythm disorders.
But to truly appreciate the ceaseless effort and determination behind the success and growth of Shipston-based Arrhythmia Alliance (The Heart Rhythm Charity) and its associated charities over the last two decades, one has to understand the very human side to Trudie’s story and indeed how her own life has been touched by tragedy.
Here she tells the Observer how her incredible journey has shaped her work.
THEY say passion is at the heart of every successful venture - but for charity founder Trudie Lobban MBE the heart is her passion.
It is now nearly 20 years since Trudie’s daughter Francesca suddenly and inexplicably began blacking out and collapsing at just ten months old. Little could she have known this was to be the beginning of a remarkable journey.
Terrified at what was happening to Francesca, Trudie visited countless medical professionals desperately trying to find an answer.
Then finally, aged three, after seeing a consultant neurologist she was diagnosed with the rare heart condition Reflex Anoxic Seizures (RAS) – which causes the heart to stop for short periods.
“It was a real awakening for me,” said Trudie. “I had absolutely no medical knowledge.
“Knowing Francesca’s heart was actually stopping, and sometimes for nearly 40 seconds, was terrifying but at least we had an answer and we knew we could deal with it.”
RAS is one of many heart rhythm disorders which come under the umbrella of arrhythmias – which cause the heart to beat irregularly, too fast or too slowly, and can have devastating effects.
They are distinct from plumbing problems with the heart which can cause the more commonly understood ‘heart attack’ in that they affect the electrics or rhythm of the heart. They are always treatable if detected but can sometimes not cause any symptoms.
So grateful for the help of consultant Prof John Stephenson for his diagnosis, Trudie asked if there was anything she could do and was asked if she could set up a ‘small support group’ for other affected parents.
“I imagined I would be dealing with something like ten parents a year,” Trudie says. “I could never have believed where it would lead and just how quickly it would take off.
“At first we managed to get some coverage in the local news and then I landed an appearance on GMTV to talk about the condition and naively I gave out my home telephone number. My husband Charles was at home and within hours the phone did not stop ringing.
“It literally exploded. It was instantly apparent we had touched on something which affected so many people.”
From that moment on Trudie’s life has been dedicated to her work - transforming the small patient group she established into a global charity.
“I was working out of my kitchen, dining room and then we moved to my garage and then finally into offices in Shipston.
“We were taking so many calls from people affected and not just parents with children with the condition but a host of others. People frightened about what was happening and a lot of adults wanting their own symptoms explained.
“We just wanted to try and help as many people as we could. I remember us putting out our first patient information sheet just to help people understand the condition more.”
From these humble beginnings the achievements flowed – the first patient conference, the formation of a committee containing a host of medical professionals looking into the spectrum of arrhythmias and then perhaps the biggest breakthrough of all in 2005.
“We became aware the National Service Framework for Coronary Heart Disease – which guides NHS policies – only mentioned the word arrhythmia once – despite evidence which showed the huge prevalence of the disorders in society.
“Our effort to get a new chapter written specifically on arrhythmias was stalling but then in the very same year, Tony Blair was diagnosed with atrial flutter and we started a letter campaign from our members. Within months it had been agreed a new chapter documenting arrhythmias would be adopted. We had finally managed to get arrhythmias on the policy agenda.”
The fact heart rhythm disorders had been so neglected is staggering when one is furnished with any one of the burgeoning number of shocking statistics surrounding the disorders.
Take the fact 100,000 people die from sudden cardiac arrest in the UK every year – something footballer Fabrice Muamba was lucky to survive. Or the fact the arrhythmia atrial fibrillation, which makes a person five times more likely to have a potentially fatal stroke, affects an astounding one million people in England alone. The list goes on.
“The lack of awareness is extraordinary when you consider the devastating impact arrhythmias have in society,” continued Trudie.
“Think about your workplace. How many fire extinguishers are there dotted around? Yet the chances of you dying in a fire at work are miniscule compared to you dying from sudden cardiac arrest. So why don’t we have automated external defibrillators (AEDs) in all public places?”
It is a convincing comparison and one which brings out an unmistakeable passion in Trudie - one borne out of her own personal tragedy.
In 2008, by a cruel twist of fate her husband Charles, who had been at Trudie’s side from the beginning and was instrumental in the success of the Arrhythmia Alliance, died from a sudden cardiac arrest aged 58.
“Charles just looked at me and said ‘Trudie I am going to faint’. And that was it,” she recalls.
“So when people ask me what motivates me, or how I do it, my answer is quite simple really. I knew I had to carry on after that and it did really strengthen my resolve – it made me more determined than ever.
“This is something which has deeply affected my own life and I know the devastating effects only too well.”
From there the charities have gone from strength to strength. Trudie, who was awarded an MBE in 2009, is recognised as a world expert and patient representative and the charity is established in 30 countries – continuing to push for greater awareness, helping patients and medical professionals and influencing policy.
The charity’s campaigns include one to get defibrillators into public places and another encouraging people simply to check their pulse – as this can be the simplest and easiest way to detect an irregular heart rhythm.
“The real tragedy is arrhythmias are nearly always treatable so a huge proportion of the tens of thousands of deaths every year are avoidable,” said Trudie.
“I’m very proud we have been able to get arrhythmias onto the agenda but there is so much work still to be done.
“Awareness of arrhythmias in both the public and the medical profession still lags way behind nearly all other countries in Western Europe and America and relative to other illnesses. Only when this is addressed can more lives be saved. After all SCA kills more people than AIDS, breast cancer and lung cancer combined.
“I want the work of the charity to go on long after me and continue to make our aims reality.”
It is an inspirational vision from a woman absolutely committed to a cause so very close to her own heart.
Visit www.arrhythmiaalliance.org.uk for more information.
Trudie Lobban - founder of Arrhythmia Alliance (The Heart Rhythm Charity). (s)
Trudie with former Prime Minister Tony Blair who was diagnosed with atrial flutter in 2005. (s)
Trudie was awarded an MBE in 2009. (s)
Trudie with her late husband Charles who suffered a sudden cardiac arrest aged 58. (s)
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