Elsewhere on Ulster
An insight into the experiences of patients with a Ventricular Assist Device (VAD) and their families within Northern Ireland.
On 20 August, colleagues from Ulster University’s School of Nursing and Paramedic Science, funded by the Public Health Agency (PHA), hosted a pioneering event offering a rare insight into the experiences of people living with a Ventricular Assist Device (VAD) and their families in Northern Ireland.
A VAD is a mechanical pump surgically inserted into a person’s heart chamber (most commonly the left ventricle) to help circulate blood around the body. The device is often used for people awaiting a heart transplant, with a power source connected externally via a ‘driveline’ that exits the body and attaches to a controller.
There are currently just 15 people in Northern Ireland living with a VAD. The team were delighted when nine patients, four spouses, and a friend attended the event, alongside representatives from Heart Failure Warriors NI and clinical colleagues from the Belfast Health and Social Care Trust and Freeman Hospital, Newcastle, where the devices are implanted.
The event provided a valuable opportunity for patients and family members to connect, share lived experiences, and engage directly with healthcare professionals. The atmosphere was vibrant and open, with participants expressing a strong desire to continue meeting and working together.
As a result, a steering group has now been established to guide future initiatives and ensure that the voices of those living with a VAD remain central to ongoing research and support development.
Discussions throughout the day highlighted the daily realities of living with a VAD. Patients described practical challenges such as carrying the external equipment (weighing around 2.5kg) and managing the driveline, alongside emotional and psychological concerns around body image, fear of complications, and social isolation.
Family members also shared their perspectives, reflecting on the stress and sense of isolation often felt upon returning home after surgery.
"The LVAD workshop proved to be an invaluable, professional yet personable experience. Bringing patients, carers, health care professionals and educators together to share lived experiences for the first time has shown the need and eagerness for future engagement."
A clinical colleague added:
"This was a very important first step in understanding the needs of LVAD patients and their carers in Northern Ireland. It created a safe and supportive environment for open discussion and will help us direct and develop patient-centred research with the ultimate aim of improving outcomes and quality of life."
The success of this first-ever Patient and Public Involvement and Engagement (PPIE) event has laid the foundation for a more connected and informed LVAD community in Northern Ireland. The enthusiasm and collaboration shown by participants highlight the importance of ongoing engagement and research to improve the lives of patients and their families.
Follow the School of Nursing and Paramedic Science for updates on future initiatives:
