The leading voice of those impacted by AD
The Aortic Dissection Charitable Trust is the UK and Ireland charity uniting patients, families and the medical community in a shared goal of improving diagnosis, increasing survival and reducing disability due to aortic dissection.
We are bringing consistency of treatment across the whole patient pathway through:
- Increased access to education for medical professionals and patients in the UK & Ireland
- Working with those responsible for healthcare policy in the UK & Ireland 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
- Promoting funding for medical research into the detection, prevention, treatment and cure for aortic dissection
Our Story
Our journey started as a family petition following the death of Tim Fleming, who died of an aortic dissection in 2015 after being sent home from the emergency department 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.
Tim’s family, along with the UK & Ireland national patient association, co-created 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. Supporters included Heart Research UK, the Royal College of Emergency Medicine, the Society for Cardiothoracic Surgery, the Vascular Society, the Royal College of Radiologists and the British Cardiovascular Society.
However, many aortic dissection patients continued to be misdiagnosed, resulting in fatal outcomes. In 2018 Ben Latham lost his life aged only 44, leaving behind his wife, young family, brother, sister and parents.
Recognising the need to increase reach and broaden our aims, to include improving consistency of treatment across the whole patient pathway, in late 2020 The Aortic Dissection Charitable Trust was established as a registered charity. In 2021 the charity officially launched with the support of patients, families, health care professionals, MPs, the Secretary of State for Health and Social Care, the John Ritter Foundation and medical associations including the British Cardiovascular Society.
The Aortic Dissection Charitable Trust is the aortic dissection focussed charity in the United Kingdom & Ireland.
Our Trustees
Catherine Fowler MBA BSc BCAh
A relentless campaigner to improve diagnosis for aortic dissection following the loss of her father to an undiagnosed aortic dissection in 2015. Has appeared on national radio, television and at medical conferences throughout the UK, Ireland and Europe. Co-creator and former lead of a highly successful national campaign, which has been a catalyst for change in first responder and emergency medicine. Currently the patient and public voice partner (PPV) of the NHS Cardiac Clinical Reference Group (CRG), the Cardiac Pathway Improvement Programme (CPIP) acute workstream and the Cardiac Clinical Policy Unit.
Pauline Latham OBE
The Member of Parliament for Mid Derbyshire 2010-2024, who lost her son to aortic dissection at the age of 44, in 2018. Currently influencing NHS England and NHS Improvement to progress Thoracic Aortic Dissection service specification as part of the Specialised Vascular and Cardiac Clinical Group work programme. Has directly impacted the NHS Improvement Specialised Cardiac Improvement Programme guide and toolkit, which is now due to roll out. Currently influencing policymakers in the UK Parliament and working directly with ministers at the UK Department of Health and Social Care.
Graham Cooper MD FRCS (CTh)
Past president of the Society for Cardiothoracic Surgery in Great Britain and Ireland and recently retired consultant cardiac surgeon and Honorary Senior Clinical Lecturer at Sheffield Teaching Hospitals with a specialist clinical interest in thoracic aortic surgery. Fellow of the Royal College of Surgeons of England. Clinical Lead for the implementation of NHS England’s Acute Aortic Dissection (AAD) Toolkit across England and Wales and working with NHS England on the development of the Elective Toolkit for aortic dissection.
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Our Patron
Dr John A. Elefteriades, MD, PhD (Hon)
A renowned cardiothoracic surgeon, Dr John A. Elefteriades, MD, PhD, holds the William W.L. Glenn Professorship at Yale University and serves as the Founding Director of the Aortic Institute at Yale. With a magna cum laude degree from Yale in Physics, French and Psychology, and an MD from Yale School of Medicine, he has performed numerous heart transplants and thoracic aortic aneurysm operations.
Dr Elefteriades is a prolific author, with notable works including “Your Heart: An Owner’s Guide” and “Transplant.” His numerous accolades, such as the Walter Bleifeld Memorial Award and the John B. Chang Research Achievement Award highlight his contributions to the field. Recognised as the world’s leading expert in Aortic Aneurysm by expertscape, Dr Elefteriades’ involvement as a patron enhances our charity’s mission to advance aortic disease research and education.
Our Ambassadors
The Aortic Dissection Charitable Trust Ambassadors support our trustees, volunteers, fundraisers and our wider team by promoting our work as widely as possible and encouraging more people to support the charity. They are committed to our cause and to increasing the education of aortic dissection.
Bob Harris OBE
‘Whispering’ Bob Harris is a broadcasting legend whose career spans over 50 years, from his groundbreaking work at BBC Radio 1 in the 1970s, the introductions of many superb bands on the Old Grey Whistle Test TV show, to his current programme Bob Harris Country on BBC Radio 2. In 2011, Bob received an OBE for his services to music broadcasting.
In the spring of 2019, Bob suffered an aortic dissection whilst out walking. Bob describes the experience as an incredibly scary moment and feels he owes his life to the prompt arrival of the ambulance crew and quick thinking of the intensive care team. But Bob continues to live life to the full, returning to his Radio 2 show within just four months.
As a patient ambassador for The Aortic Dissection Charitable Trust, Bob helps to champion the charity’s work and drive change for those at risk of an aortic dissection.
Clip courtesy of Rob Brydon and Spotify
“I am proud to work with The Aortic Dissection Charitable Trust to help give support and encouragement to those who have suffered this very difficult, sometimes life-changing experience”
‘Whispering‘ Bob Harris OBE
Broadcasting legend & aortic dissection patient
Steve Perryman MBE
Former English professional footballer, affectionately known as ‘Stevie P’, played for 19 years at Tottenham Hotspur during the 70s and 80s. Following a successful career on the field, Steve became a manager, appointed at several teams across the world during the 90s including in Japan, winning the Asian Cup Winners Cup, before taking a role as director of football for Exeter City.
During Exeter’s final game of the season, at home playing Sheffield United in 2012, Steve suffered an aortic dissection. He owes his life to the swift actions of the first responders at the game, St Johns Ambulance and Devon Air Ambulance for his quick transport to surgery.
As a patient ambassador for The Aortic Dissection Charitable Trust, Steve works to drive forward the charity’s mission to improve the diagnosis of aortic dissection and bring consistency of treatment across the whole patient pathway.
Clip courtesy of SCTS Annual Meeting
“I spent three weeks in a coma on life support following my dissection. I might have died if it had not been for the swift actions of the first responders.”
Steve Perryman MBE
Former professional footballer & aortic dissection patient
Recent Media
At #pmqs @Pauline_Latham raises awareness of aortic dissection, a condition from which her son died. 2000 people a year die in UK. (It’s a tear in body’s largest artery which carries blood to brain & vital organs) Asks for research commitment Was promised meeting with Health Sec pic.twitter.com/1xyHsDLiec
— Tony Roe (@tonyroe) March 9, 2022
A tough but important subject to raise at #PMQs today.
— Pauline Latham (@Pauline_Latham) March 9, 2022
Aortic Dissection kills over 2000 people every year, and I asked the PM for research funding to increase awareness and detection of this disease.
More on the work of @AorticDissectCT here: https://t.co/aWsCHrXwNG pic.twitter.com/Zu2wvPU4VQ
I am honoured to be the ambassador for the @AorticDissectCT and proud to be on the founding committee with Catherine Fowler, Graham Cooper and the wonderful @Pauline_Latham who tabled this question at PMQ’s today @UKParliament https://t.co/J49ybvJP2G
— Bob Harris 💙 (@WhisperingBob) March 9, 2022
Would like to be part of the team?
If you have been impacted by aortic dissection as a patient, family or healthcare professional and would like to find out how you can help and support the charity for aortic dissection. Find out how to get involved.
The Aortic Dissection Charitable Trust
Registered charity in the England & Wales No. 1191420
Registered charity in Scotland No. SC051517
PO Box 812, Hope Valley, Chesterfield S40 9QY
The information and materials on this site are for general information purposes only. This site is not designed to provide individual medical advice, diagnosis or treatment. If you have any concerns, please speak to your GP. If you believe you have a medical emergency, call 999 immediately.
