Aortic Dissection Awareness UK & Ireland, the national patient association for people affected by Aortic Dissection, today published its Annual Report & Accounts for the year ending 5th April 2020. The Association, which now numbers over 500 members, reports strong membership growth and significant progress in its work of raising awareness of Aortic Dissection and driving improvements in the care and treatment of affected patients. “The Association is going from strength to strength and is making a real and lasting impact on the Aortic Dissection patient pathway”, says Chair, Gareth Owens.
Widow of legendary American actor John Ritter to speak at national Aortic Dissection awareness event
National patient association Aortic Dissection Awareness UK & Ireland has announced that Hollywood actress Amy Yasbeck, widow of John Ritter, will visit the UK to speak at the fourth annual Aortic Dissection Awareness Day UK, on 19th September, at the University of Leicester. Amy will address an audience of patients, relatives and clinicians about the death of her husband in 2003 from a misdiagnosed Aortic Dissection and how the genetics of this condition affected his family.
Amy Yasbeck is best-known in the UK for playing Elizabeth Stuckey alongside Richard Gere and Julia Roberts in Pretty Woman and for her role as Maid Marian in Mel Brook’s comedy spoof Robin Hood: Men in Tights. Her late husband, John Ritter, remains a much-loved American actor, who featured in The Waltons and played the starring role of Jack Tripper for eight seasons in the US TV series Three’s Company. He also starred as the surrogate father of a rebellious little boy who wrought havoc on the family in the movies Problem Child and Problem Child 2. John died of a misdiagnosed Aortic Dissection on September 11th 2003 and his wife Amy established the John Ritter Foundation for Aortic Health in his memory.
Speaking about her forthcoming UK visit, Amy said: “I’m very excited to be visiting the UK for Aortic Dissection Awareness Day. I look forward to seeing everybody there and to helping raise awareness of this life-threatening disease.”
Making the announcement today, Mr. Gareth Owens, Chair of Aortic Dissection Awareness UK & Ireland and an Aortic Dissection survivor himself, said: “Amy’s vision and initiative in founding the world’s largest Aortic charity, in memory of John Ritter, are truly inspirational. I am delighted that she has accepted our invitation to visit the UK in order to help us raise awareness of the problem of Aortic Dissection, which currently kills more people each year in the UK than Road Traffic Accidents.”
Aortic Dissection Awareness Day UK takes place on 19th September – a date established as global Aortic Dissection Awareness Day by the worldwide movement that is increasing awareness of this life-threatening disease. Over 20 countries are expected to host an Aortic Dissection Awareness event this year. With 180 delegates, the UK event in Leicester is expected to be by far the largest and is the one that Amy and her colleagues from the John Ritter Foundation have chosen to attend. Aortic Dissection Awareness Day UK 2019 is an invitation-only event for Aortic Dissection patients, relatives and selected healthcare professionals. More information is available here aorticdissectionawareness.org, thinkaorta.org and on Twitter #ADADUK19.
National patient association Aortic Dissection Awareness UK & Ireland has announced that the fourth annual Aortic Dissection Awareness Day UK, on 19th September 2019, will be hosted by the British Heart Foundation Cardiovascular Research Centre at the University of Leicester. This full-day event will see over 100 patients and family members affected by Aortic Dissection join with leading national and international experts in the field of Aortic disease to share their experiences and discuss how to improve care for patients with Aortic Dissection in the UK.
Making the announcement today, Mr. Gareth Owens, Chair of Aortic Dissection Awareness UK & Ireland and an Aortic Dissection survivor himself, said: “Each year, we award the honour of hosting our flagship annual event to a centre that is doing great work in the field of Aortic Dissection. The University of Leicester has published ground-breaking research that is leading to significant improvement in care for patients across the UK. We also get great feedback from patients about the care they receive at Glenfield Hospital, where the Research Centre is located. With this award, we want to recognise and celebrate the achievements of the University of Leicester team and build a closer working relationship with them to develop further research in the field of Aortic Dissection.”
Aortic Dissection Awareness Day UK takes place on 19th September – a date established as global Aortic Dissection Awareness Day by the worldwide movement that is increasing awareness of this life-threatening disease. Over 20 countries are expected to host an Aortic Dissection Awareness event this year. With 180 delegates, the UK event in Leicester is expected to be by far the largest. In previous years, Aortic Dissection Awareness Day UK has been hosted by Barts Health NHS Trust (the largest cardiac surgery centre in Europe), Liverpool Heart & Chest Hospital; and the Royal Brompton Hospital in London. For 2019, the University of Leicester intends to make the event even bigger and better than before. Professor Gavin Murphy, British Heart Foundation Chair of Cardiac Surgery at the University of Leicester, explains: “As a research centre, patient engagement is absolutely crucial to what we do. Aortic Dissection is a complex, multi-faceted disease and we need patients to work with us to develop and conduct the research projects that will make the biggest difference to them. I am delighted to have the opportunity to work with Aortic Dissection Awareness UK & Ireland. We are going to use this event to host a unique collaboration with patients and tackle a real research challenge in the field of Aortic Dissection.”
Aortic Dissection Awareness Day UK 2019 is an invitation-only event and is likely to be oversubscribed.
Statistics show that a diagnosis of Aortic Dissection is considered in only half of the patients who present with this fatal condition. One-third of patients with an Aortic Dissection are actively treated in Emergency Medicine for an incorrect diagnosis such as a heart attack or gastritis.
Aortic Dissection is not a difficult condition to diagnose when you have a heightened suspicion and are aware enough to THINK AORTA in the first instance. Experience shows that if Emergency Departments educate staff about Aortic Dissection and lower the barriers to CT scanning, lives will be saved.
Omar Nawaytou of Liverpool Heart & Chest Hospital was inspired by the THINK AORTA campaign and came up with the concept of an Aortic Dissection educational film that could be embedded into every induction within Emergency Departments across the UK.
Taking the idea into action, Catherine Fowler of Aortic Dissection Awareness (UK & Ireland) took on the initiative to create and lead a collaboration between SCTS, Royal College of Emergency Medicine & Royal Collage of Radiology to develop a learning experience for Emergency Medicine providing valuable perspectives across the patient pathway. Pamela Struthers (patient of Deborah Harrington LHCH) shares her personal story, where she survived an acute aortic dissection following a delayed diagnosis.
The learning material will be released on the RCEM eLeaning platform in May 2019. As it is an open access platform, materials are available for you to access, share and encourage your colleagues in radiology and emergency medicine to adopt and embed.
Together we can make a difference to inspire and accelerate the needed change to save lives.
Aortic Dissection Awareness UKI is delighted to have been accepted as a “Stakeholder” within the NICE review process, on 23 April 2019.
NICE, the National Institute for Health and Care Excellence, is the body which produces Clinical Guidelines and Advice for use in the UK NHS. Clinical Guidelines are a consolidated summary of best practice, backed up by the latest evidence, and they are used by GPs and other Doctors across the UK to help them follow the considered best diagnoses and treatments for patients.
NICE’s guidelines are issued or updated after a review process which includes input from bodies with a special interest in a topic. Our ability to comment to NICE on matters affecting those with Aortic Disease is crucial to our drive to improve management of aortic disease.
We commented in 2018 on the updated guidelines for AAA – Abdominal Aortic Aneurysms – and a publication date is awaited, but we have now commented on the update on Blood Pressure Management, due for release this August. We know good B.P. control is a crucial aspect of aortic disease management, and have particularly made the point that sufferers from aortic disease need much tighter and immediate B.P. control than with practices based primarily on a general approach to the prevention of stroke, heart attack and heart failure. Aortic disease can strike much more suddenly and more catastrophically.
Our Stakeholder status also ensures we are advised in advance on new and updated Guidelines in preparation by NICE, and we look forward over the next couple of years to being able to put the AD perspective into upcoming guidelines including care through the admission/operation/recovery cycle, cardiovascular disease, atrial fibrillation management, long-term sickness absence and capability to work, shared decision making, and assessment and diagnosis of recent-onset chest pain.
We look forward to being able to put the AD case forward for you, the patient.