We can save 1,000s of lives if we can spot hidden condition that killed our Ben
WHEN we lost our beloved son Ben just over two years ago, there was no headspace for understanding the reasons for the tragedy. Now I know what happened, I have become focused on ensuring that fewer people endure the trauma of losing a loved one to aortic dissection – the condition which killed him.
Therefore, I am delighted to report the early success of the Aortic Dissection Charitable Trust which was launched last month, (www. tadct.org).
I was keen to be a trustee of the charity which has the support of other bereaved families, survivors of aortic dissection, clinicians and, I am pleased to say, the Health Secretary, Matt Hancock.
Matt joined my fellow trustees, very senior medics and Radio 2 presenter “Whispering”
Bob Harris – also a survivor of aortic dissection – and me at the charity’s first event, a cyberlaunch that attracted several hundred people.
They all had a common aim – faster diagnosis of aortic dissection and saving thousands of lives as a result.
I know that most people have never heard of aortic dissection until it affects them – but 2,000 people a year die from the condition, more than on our roads. Aortic dissection occurs when there is a partial tear in the aortic wall. This tear then spreads along the length of the aorta. This can rupture or interrupt the blood supply to vital organs.
If it isn’t diagnosed accurately at the time that someone is in pain and goes to A&E, the patient will not survive.
Ben was just 44, a husband with two gorgeous children and he had his life ahead of him.
He went into hospital, not feeling well and by the time he arrived there, he could not remember why he had gone because the blood supply wasn’t getting to his brain.
So, after four hours they sent him home with what they called transient amnesia.
That was late in the evening, he had a snack before he went to bed and a couple of hours later he died.
The hospital clinician had not carried out a chest CT scan which could have diagnosed his condition and could have led to him being saved.
Surgery is long, up to 12 hours, and is very complex but does work.
We don’t know how long he had had aortic dissection and the family has since been screened and we are all clear, so there is no genetic link, which is sometimes the cause.
He was very fit, played squash two or three times a week and ate a healthy diet and didn’t seem to have any problems other than high blood pressure which I now understand made him more pre-disposed to aortic dissection.
Over the past year, I have joined the campaign for better recognition of the symptoms of this dreadful condition.
It was imperative that we created a charity which aims to improve the diagnosis of aortic dissection and bring consistency of treatment across the whole patient pathway.
We intend to accomplish this through increased access to education for medical professionals and patients in the UK and Ireland and working with those responsible for healthcare policy.
The goal is to ensure that there is consistency in the provision of diagnosis for acute aortic dissection, specialised follow-up for survivors and access to clinical genetics for relatives.
We will also be campaigning for funding for medical research into the detection, prevention, treatment and cure of aortic dissection.
I am delighted to say that we had a good start to the campaign launch with pledges from many in the medical profession to support our ambitions. I am praying that we succeed for Ben and the thousands of victims like him.
Ben was just 44, a husband with two gorgeous children and he had his life ahead of him