Worthing woman launches UK’s first charity dedicated to aortic dissection education, research and policy change
A Worthing woman who has been raising awareness of aortic dissection since her father died suddenly from the rare condition has today launched a new charity to help improve diagnosis and save lives.
The Aortic Dissection Charitable Trust is the first charity in the UK dedicated to aortic dissection education, research and policy change.
Catherine Fowler from Worthing, Society for Cardiothoracic Surgery past president Graham Cooper and Mid Derbyshire MP Pauline Latham are the three trustees and broadcasting legend ‘Whispering’ Bob Harris has agreed to be an ambassador.
During the virtual launch event this afternoon, Catherine said: “Our overarching aim is to save 2,000 lives a year and also to improve the outcomes for patients who do survive as well.”
She described it as a ‘time critical medical emergency’, as the condition is detectable, treatable and survivable but in 33 per cent of cases, it is misdiagnosed.
Mr Harris, who suffered an aortic dissection in May 2019, said he was proud to ‘give support and encouragement to those who have suffered this very difficult, sometimes life-changing experience’.
He said the experience was ‘terrifying’ and the effects were inhibiting for months afterwards but there were positives and people could come through it.
Aortic dissection is a rare condition where the main artery from the heart ruptures, and can be life-threatening if left untreated. In some cases, patients may require emergency aortic arch surgery to repair the aorta, the main artery which carries blood from the heart to the body.
The journey to launching the trust started with a family petition following the death of Catherine’s father, Tim Fleming, at the age of 69 in 2015, after he was sent home from hospital with an incorrect diagnosis of indigestion.
The petition gathered the support of thousands of bereaved families impacted by misdiagnosis, along with many patients who had poor outcomes because of a delayed diagnosis of aortic dissection.
Catherine and her family worked with the Aortic Dissection Awareness UK & Ireland to co-create a national campaign in 2017 to drive change, increase awareness, improve diagnostics rates and save lives by increasing aortic dissection awareness within emergency medicine across the UK and Ireland.
Recognising the need to increase reach and broaden the aims to include improving consistency of treatment across the whole patient pathway, the trust was established as a registered charity.
Catherine said: “My father lost his life to this devastating condition. I have now formalised my support to change the UK landscape for other families by setting up a national charity.”
Since the condition took Tim’s life so suddenly and unexpectedly, Catherine has been working to raise its profile and ensure frontline healthcare staff have more information about signs and symptoms, to help them diagnose and treat it faster.
She said they were told the condition did not run in families but soon after her father died, her aunt was also affected. The family was so shocked, they did not think to mention Tim’s aortic dissection but luckily, the hospital recognised what was going on and she survived.
Mr Cooper said it was important to have better screening and better control of blood pressure in the population.
Patients, relatives, senior medics, politicians and celebrities attended the virtual launch of the trust today, March 31.
Speakers included health secretary Matt Hancock, who said: “It is so important that this condition gets the recognition that it needs. But it is not just about people knowing more about it, as important as that is. We need to ensure there is policy and research, and better screening of close relatives, as it is clear there is a risk. It is something I am committed to work on.”
The Aortic Dissection Charitable Trust aims to improve the diagnosis of aortic dissection and bring consistency of treatment across the whole patient pathway. Visit aorticdissectioncharitabletrust.org for more information.