Beyond the emergency of an aortic dissection, patients often struggle with inadequate follow-up care, psychological distress and limited support networks. The Aortic Dissection Charitable Trust is working to change this. By focusing on education, policy reform, and research, the charity aims to create a safer future for those affected.
The Urgent Need for Change
Many people diagnosed with aortic dissection receive life-saving emergency treatment but are then left without structured long-term care. Follow-up services can be inconsistent, leading to unnecessary complications or even fatal outcomes. This lack of standardised aftercare means patients are often left to navigate their recovery alone, with little psychological or physical support.
During a discussion with CTSNet at the EACTS conference in Lisbon, the charity highlighted these issues and introduced an initiative designed to fill the gaps: the funding of specialist aortic nurses.
Having an aortic nurse to support these patients through their follow-up journey is going to be a really positive step to improving not only quality of life, but the length of life and outcomes for this important cohort of patients.
Graham Cooper, Trustee, The Aortic Dissection Charitable Trust
A Lifeline for Patients
The campaign to fund aortic advanced practitioners mirrors the success of Macmillan Nurses, which has provided dedicated cancer nurses since 1977. These nurses will play a crucial role in patient follow-up, offering:
- Ongoing medical monitoring to prevent complications.
- Psychological support to help manage post-traumatic stress disorder (PTSD), a common issue after dissection.
- Genetic screening and family guidance, as aortic dissection can be hereditary.
Bob Harris OBE, a survivor of aortic dissection, spoke about his experience. He described his fear and isolation after leaving hospital, explaining how he struggled to find support. His oncologist, who was treating him for prostate cancer, ultimately became his point of contact for monitoring the health of his aorta, simply because no dedicated aortic service existed. His story reflects the urgent need for a structured system of care.
Once I left the environment of the hospital, I felt very alone. I didn’t want to talk to anyone. I became very frightened about even the idea of going up and down stairs, in case this would happen again.
Bob Harris OBE, aortic dissection patient and charity ambassador
A Fight for Standards
The charity is not only funding direct patient support but is also lobbying for systemic change. Aortic dissection care lacks consistent guidelines across the UK and Ireland, making patient outcomes highly dependent on where they live. The charity is working with policymakers, healthcare providers, and international organisations to establish national standards for post-dissection care.
We know that guidelines and standards are really lacking in this area. It’s something we’ve been lobbying government and the Department of Health to change.
Catherine Fowler, Trustee, The Aortic Dissection Charitable Trust
The goal is to move from a postcode lottery of care to a nationwide framework that ensures every patient receives the follow-up they need.
Aortic Dissection Task Forces
One of the most effective ways to improve aortic dissection care is through dedicated Aortic Dissection Task Forces. These groups, made up of cardiologists, vascular surgeons and radiologists, focus on developing best practices for diagnosis, treatment and long-term patient management.
By taking a multidisciplinary approach, task forces ensure that care is comprehensive, addressing both emergency intervention and ongoing support. Their work includes setting clear guidelines on when to use imaging, how to manage blood pressure, and when surgery is necessary. They also update treatment pathways based on the latest medical research, helping to bridge the gap between scientific developments and real-world patient care.
Many respected organisations, including the European Society of Cardiology have established Aortic Dissection Task Forces to push for improvements on a global scale. These efforts align closely with our mission, reinforcing the urgent need for structured and standardised follow-up care. By working alongside these task forces and advocating for their findings to be implemented in national policies, the charity strengthens its case for lasting change in aortic dissection management.
Strength in Numbers
The charity collaborates with international organisations, including the John Ritter Foundation in the United States, which has been instrumental in advancing aortic dissection awareness and research. By working together across borders, these partnerships aim to share best practices and push for better patient outcomes worldwide.
Collaborating with each other – patients, medical professionals, nationally and internationally – makes us stronger. Together, we can make a real difference.
Catherine Fowler, Trustee, The Aortic Dissection Charitable Trust
Who Are CTSNet?
CTSNet (Cardiothoracic Surgery Network) is a global platform for cardiothoracic surgeons and healthcare professionals. It provides education, research updates, and a space for collaboration in heart and lung surgery. By hosting discussions like this EACTS interview helps bring important issues like aortic dissection aftercare into the spotlight.
Funding Research to Drive Change
Beyond advocacy and patient support, the charity is committed to advancing scientific understanding of aortic dissection through research grants. These grants provide early-stage funding to support studies that have the potential to improve diagnosis, treatment, and long-term care.
The grants are open to members of the multidisciplinary medical team and researchers working in the field of aortic dissection. Applications for patient and public engagement, pilot studies, and the continuation of existing research projects are all considered. The charity’s Research Advisory Group and Public and Patient Voice play an active role in this process, offering guidance and feedback.
Proposals are assessed based on their clinical significance, scientific merit, feasibility, and potential to improve patient outcomes. By supporting innovative ideas at an early stage, we aim to accelerate progress in a field where research is urgently needed.
A Safer Future for Aortic Dissection Patients
Aortic dissection aftercare needs urgent reform. The charity is leading the charge, but real change will only come with widespread support. Whether through donations, awareness campaigns, or pushing for policy change, everyone can play a role in shaping a future where no patient is left behind.