Royal Papworth to host AD Awareness Day UK 2023

Royal Papworth to host AD Awareness Day UK 2023

16 January 2023

Royal Papworth to host Aortic Dissection Awareness Day UK 2023

Royal Papworth Hospital NHS Foundation Trust has been awarded the honour of hosting Aortic Dissection Awareness Day UK on Tuesday 19 September 2023 by the national patient charity Aortic Dissection Awareness UK and Ireland.

The annual Aortic Dissection Awareness Day was founded in 2016 by a small group of survivors from the UK, Sweden and Italy and has since grown into a major national conference. The day will focus on improving patient care in Aortic Dissection and will see around 120 patients, relatives, healthcare professionals and policymakers gather at the newly opened Heart & Lung Research Institute at Royal Papworth, on the Cambridge Biomedical campus.

Aortic Dissection is a life-threatening condition involving a tear in the body’s biggest artery, the Aorta, which carries blood from the heart to the brain, limbs and vital organs. Aortic Dissection kills more people in the UK each year than road traffic accidents, according to Aortic Dissection Awareness UK and Ireland.

Royal Papworth Hospital has been awarded the hosting of the event after being recognised for excellence in the field of aortic dissection and for the outstanding care provided to our patients.

Dr. Bobby Agrawal, Consultant Cardiac and Thoracic Radiologist at Royal Papworth Hospital, said: “We’re delighted that Aortic Dissection Awareness UK & Ireland have recognised our expertise and excellence in Aortic surgery to the profession and to our patients and our role in sharing our knowledge to the sector. We look forward to welcoming them and all the delegates to Royal Papworth in September”

Dr. Stephen Webb, Deputy Medical Director at Royal Papworth Hospital, said: “We are very proud to be hosting the Aortic Dissection Awareness Day UK at Royal Papworth in September and that we have been recognised for our care to our patients.”

“We are the UK’s leading heart and lung hospital and the first hospital trust in the country to receive the top rating of ‘outstanding’ by the Care Quality Commission, as well as being the first NHS acute Trust to have gained an ‘outstanding’ rating in the ‘Safe’ category. An increasing number of patients are now surviving after Aortic Dissection, demonstrating our expertise in this field by quickly recognising the symptoms and our considerable experience in treating aortic dissection.

“It is important that we continue to provide an exceptional level of care for our patients from the moment they are admitted through to supporting them for the rest of their lives.”

Mr. Gareth Owens, Chair of the national patient charity, said: “Royal Papworth is an excellent specialist Aortic surgery centre, in addition to its renowned track record in heart transplantation. Our Aortic patients tell us that they receive exceptional care there. The Royal Papworth Aortic team are also raising awareness of Aortic disease and actively sharing their expertise both regionally and nationally through education events. We have awarded Royal Papworth the hosting of Aortic Dissection Awareness Day UK 2023 in recognition of their care quality and leadership in this field.”

Aortic Dissection Awareness Day UK is on Tuesday 19th September 2023 and further details about the event will be published in due course. For more information on Aortic Dissection awareness, please visit www.aorticdissectionawareness.org

 

Leaflet Launch: Planning Pregnancy with Aortic Disease

Leaflet Launch: Planning Pregnancy with Aortic Disease

7 September 2022

Aortic Dissection Awareness UK & Ireland has launched an important new resource for mothers and those contemplating pregnancy, ‘Planning Pregnancy with Aortic Disease.’

Created by Vice Chair of Aortic Dissection Awareness, Haleema Sadia and Dr. Stephanie Curtis, a consultant cardiologist from Bristol who specialises in aortic disease and obstetric cardiology, the leaflet addresses a vital need for more information on pregnancy and aortic disease.

Building on her own extraordinary personal experience of AD during pregnancy, Haleema has said “I don’t want another mother & baby to have to go through what we did” and that “this was all so avoidable.“

The Chair of Aortic Dissection Awareness UK & Ireland, Mr. Gareth Owens, said, “This leaflet is a fantastic new information resource for women who are at risk of aortic dissection during pregnancy. It will prevent other mothers and their babies from having to endure the ordeal that Haleema & her daughter Ruqqayah faced, or the tragic worst-case outcome, where some mothers and their babies have sadly not survived.

I commend this leaflet to the medical profession as one way in which we can get better at managing aortic dissection, which continues to be a leading cause of cardiac maternal death and more generally, is responsible for more deaths in the UK each year than road traffic accidents. This is a really important initiative that Haleema is leading. It deserves our full support.“

Read the full PRESS RELEASE and DOWNLOAD THE LEAFLET HERE.

 

Cover picture of Aortic Dissection: The Patient Guide

Planning Pregnancy with Aortic Disease

Download the pdf here

Launch of Aortic Dissection: The Patient Guide

Launch of Aortic Dissection: The Patient Guide

8 May 2022

Break-out view of Aortic Dissection: The Patient Guide

NEW BOOK LAUNCH –

AORTIC DISSECTION: THE PATIENT GUIDE

Aortic Dissection Awareness UK & Ireland has launched, at the SCTS 2022 annual meeting in Belfast, a major new resource for patients, ‘Aortic Dissection: The Patient Guide’.

Since our inception in 2016, we have campaigned to raise awareness of Aortic Dissection and to improve aortic services for patients.  As more patients survive an aortic dissection, one of their main concerns is how little information is available to help them understand the condition, manage their recovery and manage the life-long implications of being an aortic dissection survivor.

The national patient association’s project lead Cliff Grover, himself a Type A aortic dissection survivor from 2017, explains:

“Aortic Dissection: The Patient Guide is written by patients, for patients. It’s a 96-page, A5 paperback handbook containing all the information that we wish we had been given after our aortic dissection. It ranges in scope from the initial hospital stay, through all the stages of recovery to the long term.

The Guide is designed to be given to an AD patient and their family or carers while they are still in hospital.  Our feedback showed that a patient’s family often have to find out on their own about this condition which they had never heard of. The Guide is structured to help the patient and the family during the very worrying hospital stay, and in the longer term.

Over the last 18 months, a team of twenty patients, relatives and carers wrote the Guide, and a multidisciplinary team of seven expert clinicians reviewed and approved the content. We are delighted that both the Society for Cardiothoracic Surgery (SCTS) and The Vascular Society have endorsed the final product with their logos on the front cover. 

With our charitable funding in place, and distribution arrangements through our partner Terumo Aortic, we will provide free copies of the Guide to every UK and Ireland aortic centre. Our aim, in partnership with SCTS and The Vascular Society, is that by the end of 2022, every AD patient will receive a copy before they leave hospital. This charitable act represents a long-term commitment to provide a free copy of the Guide to every aortic dissection patient in perpetuity.”

Gareth Owens, Chair of AD Awareness UK & Ireland, said:

“I wish I had been given something like this when I left hospital. It’s such an obvious thing to do. Aortic Dissection: The Patient Guide is a fantastic resource which we are making available free to UK and Ireland Aortic centres, for the benefit of their patients. We’re very grateful to SCTS and The Vascular Society for their support of this initiative and to the President of SCTS, Mr. Simon Kendall, for the opportunity to launch the Guide at the SCTS Annual Meeting.”

HOW TO GET YOUR COPIES

Aortic centres can order a free stock of Aortic Dissection: The Patient Guide to be delivered to their unit by clicking HERE.

The Patient Guide can also be downloaded as a free PDF from our website HERE or you can go straight to specific sections of the Patient Guide here:

  1. In the Hospital
  2. Your Discharge & Early Recovery
  3. Long-Term Recovery
  4. Medications
  5. How can Family, Carers & Friends help?
  6. Why do Families need Genetic Screening?

For other enquiries regarding the Patient Guide, please Contact us, or e-mail patientguide@aorticdissectionawareness.org

Cover picture of Aortic Dissection: The Patient Guide

Aortic Dissection: The Patient Guide

Download the pdf here

Association Becomes the National Patient Charity for Aortic Dissection

Association Becomes the National Patient Charity for Aortic Dissection

13 April 2022

On 13th April 2022, the UK Charity Commissioners granted Aortic Dissection Awareness UK & Ireland registered charity status, making us the national patient charity for Aortic Dissection.

Our Chair, Gareth Owens, announced this important milestone in the growth of our patient-led organisation by making a short video which you can watch by clicking here.

Patient Leaders Welcome Publication of Life-Saving National Guidance after 5-Year ‘THINK AORTA’ Campaign

Patient Leaders Welcome Publication of Life-Saving National Guidance after 5-Year ‘THINK AORTA’ Campaign

10 March 2022

Two survivors of a life-threatening cardiac condition have welcomed the publication of new national guidance to improve the diagnosis of Aortic Dissection, after a 5-year campaign which attracted the support of the Secretary of State for Health and the Presidents of two of the medical profession’s Royal Colleges with a combined membership of 21,000 hospital doctors.

Read the full press release 

Read the RCEM-RCR Guideline 

Press Release 8th March 2022
National patient association partners in TRAVERSING study of Aortic emergencies pathway

National patient association partners in TRAVERSING study of Aortic emergencies pathway

18 January 2022

TRAVERSING: TRansfer of thoracic Aortic Vascular Emergencies to Regional Specialist INstitutes Group

Aortic Dissection Awareness UK & Ireland and the THINK AORTA campaign are partnered with experts in the TRAVERSING research group to undertake a national study of the acute aortic syndrome patient pathway, from the point of diagnosis to arrival of the patient in a specialist aortic centre for treatment.

As the voice of patients and relatives affected by Aortic Dissection in the UK, we welcome this expert-led, evidence-based, national study of how to improve patient care and transfer. It is exactly the sort of national, research-led initiative that we have been asking for.

The project starts with a Delphi study to examine the patient pathway and develop a consensus on the transfer of patients with confirmed acute aortic syndrome from diagnosis until their arrival at the specialist centre providing definitive management (‘aortic centre’).

We would like to ask all clinicians in the UK with an interest or involvement in acute aortic syndrome to participate in the Delphi survey, in order to ensure that your views are included in the development of a national consensus for this important patient pathway.

Please click here to access the Delphi questionnaire:

TRAVERSING Delphi Questionnaire

Thank you in advance for your help, which will improve care for aortic patients.

Gareth Owens

Chair

Gordon McManus

Head of Research

Aortic Dissection Awareness UK & Ireland