Elevating Patient Care
This September, we ushered in a new era of patient care with the introduction of the Elective Toolkit and agreed reforms with the Department of Health and Social Care – political figures across the political spectrum back this initiative. NHS England is now in the process of forming a working group to action this project.
On World Patient Safety Day, we underscored the vital role of patient and family engagement in enhancing patient safety, with Chloe’s story serving as a poignant catalyst for change, shining a light on the risks of delayed and misdiagnosed critical conditions.
Research Grants 2023
The Health & Social Care Secretary and Chair of the UK BioBank welcomed the announcement of our two research project winners, both focused on pioneering diagnostic approaches.
Winning Projects
AORTA-AI
Leveraging Artificial Intelligence for Rapid Acute Aortic Syndrome Diagnosis, paving the way for improved medical decisions and patient outcomes.
Pan-London Decade-Long Analysis (PanDAMAAS)
A thorough exploration into the incidence and rate of misdiagnosed acute aortic syndromes across London hospitals, aiming to refine diagnostic tools and approaches.
Research with EMERGE
Furthermore, our research shared at the RCEM Annual Conference unveiled a concerning gap in acute aortic syndrome care within the NHS, calling for urgent improvements to bridge the expertise void in managing chest pain associated with aortic diseases.
Community at Heart
September saw a number of heartening awareness campaigns. Kirsty’s 12-hour treadmill challenge, Emily’s inflatable unicorn run, Ross’ Great North Run, Aidian & Simon’s Worcester City Run, and the cycling adventures of Ogulcan and Matt were not just keen fundraisers but strong statements on the importance of early diagnosis and support for aortic dissection patients.
The Greenwich parkrun takeover during Aortic Dissection Awareness Week 2023 was a phenomenal display of unity, with 30 patients and families, including the unforgettable unicorn, joining forces to make a significant impact on the 300 participants and volunteers.
Young Minds, Aortic Awareness
The feature in WhatsOn magazine over three months, donated by the editorial team, in memory of a colleague who tragically died to aortic dissection, aimed to raise awareness among the magazine’s 3 million youth and culture readers across the UK and Ireland. The feature shared essential information about aortic dissection, emphasised the importance of early diagnosis, and provided updates from fundraisers, a patient’s story, and promoted the Could it be AD? campaign. Additionally, the features were included in WhatsOn’s weekly email newsletter, expanding the reach and engagement with readers through both print and digital platforms, thereby educating a wider audience on aortic dissection and the importance of community support.
Cleveland Clinic Symposium
At the CLE Care of Aortic Disease Symposium, the Charity joined forces with the John Ritter Foundation and The Marfan Foundation. Each organisation shared its expertise: TADCT on educating emergency department teams, the John Ritter Foundation on genetic factors of aortic health, and The Marfan Foundation on Marfan syndrome research and outreach. Hosted by the Cleveland Clinic, the symposium aimed to enhance healthcare professionals’ understanding of aortic diseases.
The event enabled the sharing of tools, best practices, and research data, emphasising a global approach to aortic education and awareness. This collaboration marked a step towards better-informed care for aortic diseases, underscoring the need for ongoing education and joint efforts in the field.
A Survivor’s Story
At the BANCC Annual Conference 2023, one of our patient supporters shared his personal experience with aortic dissection. Richard detailed the sudden onset of severe chest pain, the process of diagnosis, and the subsequent surgical interventions he underwent. His narrative provided insight into the emotional and psychological toll the condition had on him and his family.
His story also highlighted the crucial supportive role healthcare professionals and the charity played in the overall well-being and recovery of patients facing such life-threatening conditions. Through this lived experience, attendees got a glimpse into the personal challenges patients with aortic disease face, enriching their understanding of the human aspect of the condition.
Bristol Patient Power
The 29th Anniversary Charity Fundraiser led by Paul Hobbs and his team was a monumental success. The 5K for AD event reached an astounding 13 million people, earning heartfelt gratitude from Bristol Deputy Lord Mayor Paula O’Rourke. This event epitomised the power of collective action, taking giant strides towards elevating aortic dissection awareness.
September 2023 was a testament to the collective action of our community. Each policy stride, research endeavour, awareness campaign, and community engagement reinforced our mission to alleviate the challenges posed by aortic dissection, inching closer to a future where enhanced diagnosis, improved patient care, and robust community support redefine the aortic dissection narrative.
