Our annual report to the Charity Commissioners about is presented to our members at the Annual General Meeting and then made available here.
Membership of the charity grew by 35% during the year, to more than 1,000 members across the UK & Ireland. Our ‘AD Buddies’ peer support group for patients and their families saw a similar increase and the private online support group is busy every day with members asking and answering questions about Aortic Dissection. During the year, we established two additional peer support groups catering for the specific needs of bereaved relatives and caregivers.
The charity published the definitive handbook to the condition “Aortic Dissection: The Patient Guide” and made a charitable commitment to provide, in perpetuity, a free copy to every patient in the UK & Ireland via their treating hospital. More than 3,000 copies were distributed during the first year. We also highlighted the under-diagnosed problem of Aortic Dissection during pregnancy and published a booklet “Planning Pregnancy with Aortic Disease”, written by a patient who had survived this experience and a leading maternal cardiologist.
The Trustees awarded the hosting of our annual conference “Aortic Dissection Awareness Day UK” to the Wellcome Centre for Interventional Surgical Sciences at University College London, in recognition of their ground-breaking research in the field. More than 120 patients, relatives, clinicians, and researchers attended the conference, which was held at the Headquarters of the British Medical Association in central London.
The charity completed a post-COVID refresh of our THINK AORTA poster campaign, in partnership with Heart Research UK, which resulted in posters being sent to every A&E Department in the UK & Ireland. One of our speakers at the AD Awareness Day UK 2022 conference was a patient whose life was saved as a result of the charity’s THINK AORTA campaign.
The charity also extended its reach into prevention of Aortic Dissection, with the launch of the public THINK AORTA, THINK FAMILY campaign, which addresses the often genetic nature of the disease and highlights the need for improvements in familial genetic testing.
The charity provides the patient voice on the NHS England Acute Aortic Dissection Toolkit Working Group. Since the toolkit was launched for the NHS England Regions to implement in April 2022, we have supported each Region with the offer of a team of local patients and a tailored support package for improving the acute Aortic Dissection patient pathway. To date, five of the seven NHS England Regions have taken advantage of this support.
The charity also provides a Patient & Public Voice Partner to sit on the NHS England Vascular Clinical Reference Group, which advises on the provision of vascular services nationally.
The charity made submissions proposing a focus on the prevention of Aortic Dissection as part of the UK Parliament Health & Social Care Committee Inquiry into Prevention in Healthcare.
The charity’s Research Team met every second month to discuss proposals and partnerships in the field of Aortic Dissection and consider and respond to requests for patient involvement and advice. The strategic DECIDE-TAD research partnership that the charity co-leads with the BHF Cardiovascular Sciences Research Centre at the University of Leicester completed its first phase. The initial results were presented at the Society for Cardiothoracic Surgery Annual Meeting in Birmingham. Papers are in preparation for publication in leading journals. This multi-year research programme is leading towards Decision Support Tools and professional guidance/pathways that will enable screening of the first- and second-degree relatives of people who have an Aortic Dissection.
The charity also completed its work with Barts Health NHS Trust on the CardiacCOVID study, which was published in the European Journal of Cardiovascular Nursing.
The charity also completed its work in a multi-centre, multidisciplinary research partnership led by the University of Bristol – the TRAVERSING study - which reached a consensus on the care of acute Aortic Dissection patients during transfer to specialist centres. Publication of the consensus guideline is expected during 2023.
The charity was pleased to be invited to speak at several national events for medical professionals during the year, including the annual conferences of the Society for Cardiothoracic Surgery in Belfast, the Vascular Society in Brighton, and the British Cardiovascular Society in Manchester. We also put together a highly successful patient-interactive session for the prestigious London Aorta conference.
The work of the charity has also been recognised with the award of the title “Best Specialist Patient Support Charity – UK – 2023” in the international non-profit organisation awards.
Read the full Annual Report 2022/23 here