Aortic Dissection Awareness

We miss aortic dissection. It's a time critical life-threatening disease. It's really it's classic emergency medicine. Aortic dissection as it's known occurs when a tear in the inner wall of the aorta causes blood to flow between layers of the wall forcing them apart. We were out having fun, very muddy fun, then And then 10 minutes later, I collapsed. Making the diagnosis of aortic dissection is actually quite difficult. It's not as rare as you freaking think. They go, really? Or some of them even said, oh, I haven't heard of that. The commonest cardiac surgical emergency. We had three misdiagnoses of aortic dissection. Type B dissection is a complete nightmare. And this is an opportunity to make a difference. We have made progress. and I'm sure we're going to make a lot more progress in the future. My name's Dan Burgess. I'm from London, Worcester Park. I'm Gareth Owens. I'm from Borough Bridge in North Yorkshire. So after I got out of hospital, I knew something very serious and life-threatening had happened to me. I knew that I was facing a long recovery. My name is Anne Cotton and I live in Warwick. I have experienced Type A aortic dissection in May of last year, 2015. My name is Catherine Fowler and I'm from Worthing. My father, Tim Fleming, he was a very young 69 year old man and he was struck I suppose quite suddenly with an aortic dissection. Sadly for dad, his dissection was misdiagnosed and he paid the ultimate price, it cost him his life. Today has been absolutely amazing. We've had the first global Aortic Dissection Awareness Day. We've had, I think, nine survivors of aortic dissection down. We've had Heart Research UK, which have been absolutely fantastic with their support. We've also had one of the lead cardiovascular doctors, Professor Pepper. That day really was the start of something, it's the coming together of everything that's been done over the last few months. I've been attending the first ever aortic dissection awareness day, very significant day for me. I've met the group of people who've supported me through my recovery. When I came out of hospital I felt alone, I didn't have any idea what a dissection was, I didn't have any support from the hospital, absolutely enough thing. It was a pat on the back, off you go and away. You beat the odds, it's a miracle. And I went online to find out more information and I found the Aortic Dissection Buddies Facebook group and connected with them and the first thing I became aware of was a bunch of survivors with the motto, today is a good day. It wasn't until I found others and then got involved. I dissected 13 years ago so I've been kind of support groups over the last I'd say 11 years and it's been fantastic. We've now got 80 members within the UK and Ireland and the goal is to get more. Absolutely delighted to welcome you to the second international Aortic Awareness Dissection Day. Every A&E should have a poster that says think aortic dissection. To increase awareness it's not just the patient groups, we need the junior doctors, we need the emergency departments to know what kind of flow there is, flow chart or what kind of diagnostic algorithm there is. I myself was extremely fortunate to have a junior doctor who had seen aortic dissection less than two months before mine. That patient sadly died because they were misdiagnosed and treated for heart attack. You all have a local MP, they have surgeries, you can go and speak to them and you all have a very personal and a moving story and if you are prepared to share it people will listen, will be moved and will act. The number of doctors I've said I've had an aortic dissection they go really? Well some of them even said oh I haven't heard of I remember something in medical school but I don't remember what it was. And there were certain things about me that made him just stop and question the senior doctor who was looking after me and ask for a CT scan. I really kind of felt like everything's possible and it's great to hear the echo from everyone today, the power of the patient voice. I'd like aortic dissection to be as well known as stroke and heart attack and diabetes and all the other diseases that people know about. For aortic dissection to become known in that way and then everybody will get more understanding of it. I'm just so impressed with all the enthusiasm and drive and motivation I've seen this morning. And I've heard this morning that basically all the building blocks are there. We know how to treat aortic dissection. Yes it's professionally challenging, but you know the ability to diagnose is there, the ability to manage medically is there, the ability to do surgery is there. There's really no excuse that people are still dying because of the lack of proper diagnosis, lack of access to these kind of tools and techniques and that's what we need to address. It was about time that we had a service specification for patients with thoracic aortic disease. And this has resulted in the establishment of a working party that's co-chaired by a cardiac surgeon, and their remit is to write a service specification for the whole patient journey for the whole of the aorta. Good morning, ladies and gentlemen, and welcome to Aortic Dissection Awareness Day UK 2018. Being part of a team is second nature to an aortic cardiac surgeon. Cardiologically, nobody really, I didn't have annual monitoring, I went to see the GP who said, if ever you get sharp tearing pains in your chest or up and down your back, to A&E. And then in 2007 I had a thing called an NSTEMI, which is a heart attack, basically. I had annual echo, and of course, echo cardiography, yes, we're checking your aorta, Mr. Owens, and it's all fine, it's not growing, it's three and a half centimetres. That went on for 30 years, until suddenly I keeled over and had an aortic dissection of the descending aorta, which had never been looked at. Having a type B dissection, basically this is a life-threatening disease, so I've said that 10% of patients will be dead within a month. The idea or the objective, so think about the split that happens in the artery, that weakness, the change in the flow, the potential for rupture, so what are our objectives? Well it's simple, we want to mitigate aortic rupture, the progression of the dissection. I don't think there's any other healthcare system in the world that will have or has a national strategy for dealing with aortic pathology. There are pockets of fantastic practice, but this is our opportunity to fix it for the entire country and for the rest of the world to follow us. 23rd March 2016 was the date I was working in the city and I set off from my London digs and for some reason I know not why I took a self. So I dissected in a pub in Monument, paramedics came, I said I've got Marfan syndrome, I think I'm having an aortic dissection, they said right, Royal London Major Trauma Centre, that's where you're going, off we went. I needed an expert multidisciplinary team who were going to care for my whole aorta. So we had all the multidisciplinary team, we meet every two weeks, but what about in acute dissection? We do have a communication through a group communication, if there's an acute aortic dissection come and there's a complex, we discuss in real time and we look at the images and we discuss what kind of treatment is appropriate for a particular patient. And so I think it is important to get the brain and expertise of everybody within the team to work together to achieve the best outcome for the patients. I had an open repair of my thoracic aorta, Bart's Heart Centre, in May 2016 and I had an open repair of my abdominal aorta at the Royal London Hospital in May 2017 and I know a lot of clinicians now are changing their practice in Marfells so that they look at the whole aorta, not just the ascending aorta and that's totally appropriate. The medical teams dealing with each portion of their aorta are different as well and therefore we require multidisciplinary care in looking after these patients. Today is Aortic Dissection Awareness Day. For me, partly today I want to get the message out there. People with connective tissue disorders like Marfan syndrome are at risk of aortic dissection. We're going to go to Professor Julian Barwell who's the East of England lead for genomics medicine and who's a clinical geneticist here in Leicester. This is a triple threat, this disease. It's incredibly sad when people pass away. It's dreadful when we don't have the opportunity to talk properly to our relatives. A lot of my work's in familial cancer. And although very tragic on many occasions, there is the opportunity to have those conversations. But the third one is, very soon afterwards, as has been described today, people start worrying about their relatives as well. I most importantly spoke to Dr. Milowitz who was researching this from the genetic end, the genetic beginning I should say, and she advised me wisely to make sure that all of John's first degree relatives were imaged. What do the genetics mean for you and your family in terms of the risk for aortic dissection for other family members? a relevant percentage of first-degree relatives and second-degree relatives of non-syndromic trastic artery disease patients are affected by the same condition. But once you've got that alteration in the gene, it can be passed through generations in the family. And we want to be able to use that information to go through families and identify who's at risk and who's not at risk. The GP sent me off to a genetic counsellor who talked about the 50% risk of passing on Marfan's to my children. Our view was that it was possible to live a perfectly happy and successful and fulfilled life with Marfan's syndrome, so that's a risk that we would take. We have three children, my youngest son David has Marfan's syndrome, the other two are unaffected. We need to understand what the aortic dissection genes do, so it's all well and good reading the DNA code and looking at the changes in it, but we need to really understand what that gene means. What are we looking for? Well, we're looking for aortic size, and before it used to be about screening for 55 millimeters, and now there's a consensus to say anything over 40 millimeters is defined as aortic dilatation. Cost is not a reason not to get this test set up so that it's done routinely in the UK. It's extra information that you need to think about. Are you looking for a bicuspid aortic valve? Do you want to look for coronary artery disease at the same time? Do you want to look for aortic disease? Are you looking at the descending aorta? I would really like to come back and talk to you in 10 years' time and give a talk called The Importance of Genetic Testing Before Aortic Dissection. After a series of deaths in Bristol, medics have been able to create a new training programme for doctors. It helps to identify a rare but potentially fatal heart condition. And what we need to do is to be able to deliver the diagnosis of that 24 hours a day from all my clinicians as quickly as we can and get the patient to surgery. We not only have to put in place a service specification and raise awareness amongst the public but also against the actions of emergency physicians. You have a good history for aortic dissection, you will need to proceed to CT to make the diagnosis. And the biggest problem for the ED team is that by the time we get to see the patients they've often settled. We had three misdiagnoses of aortic dissection in 43 year old otherwise well men who we discharged and then we investigated. For radiologists in that year we did 11 CT angiograms from the emergency department. Last year we did 458. Early diagnosis is vital. More people die from aortic dissection in England than in road traffic accidents. So it's absolutely essential we do everything we can to improve early detection and treatment of this life-threatening condition and frankly I don't think that awareness is high enough right now. Today is a good day. As a survivor of aortic dissection, today is a very good day because I'm here to tell the tale. I mean, today is a good day. Today has been an amazing day. It's a really good day. And today is a good day. Probably today is a good day. Thanks, today has been a good, good day. I've got a pulse, today is a good day.