Sue Griffin was an active 68-year-old, retraining to become a nurse and indulging her love of horse riding, when she began to experience breathing difficulties, such as breathlessness. “She was then diagnosed with asthma, and was going to see an asthma nurse,” her daughter Kirstie Campbell recalls.
But despite treatment, it soon became apparent that Griffin’s symptoms were not improving. “She was getting more and more breathless as time was progressing,” Campbell says. “She struggled doing things with the horses as well, she’d always done everything herself. She was getting fairly frustrated with herself, thinking that she was just turning into an old lady really quickly.”
Griffin’s breathing difficulties seriously progressed in 2021 and, after phoning 111, she was admitted to hospital and seen by the cardiology ward, where she was diagnosed with severe aortic stenosis. Her aortic valve, which controls blood moving from the heart to the body, was restricting blood flow. This causes it to become narrow, resulting in symptoms such as shortness of breath and chest pain.
“She stayed [in hospital] for a few days and it became apparent how serious her condition was,” Campbell says. “It was made worse by the fact that she was anaemic. She was told she needed the procedure asap, but was still told to go home and wait for the hospital to be in contact within the next two weeks for an appointment.”
The procedure, known as transcatheter aortic valve implantation (Tavi), is used to replace the valve without open heart surgery. Griffin was still waiting for her procedure to be scheduled when her condition suddenly declined, leading to her death in hospital.
According to research by Valve for Life UK, up to 8.2% of patients on the elective Tavi waiting list die before being able to receive treatment, with some centres reporting a mortality rate as high as 20%. “Everyone on the waiting list for this procedure needs it and is urgent, and they’re all just a ticking timebomb, unfortunately,” Campbell says.
“It comes as no surprise that the figure is as high as it is, and I think it comes down purely to [the lack of] early diagnosis. Once they’ve got the diagnosis, they’re already gravely ill,” she says. “What I’m finding really sad is that it’s all been missed.”
But, for Campbell, one of the hardest things to process is the fact that, if her mother had been able to have the procedure scheduled, the outcome may have been different.
“Knowing and listening to the surgeon who could have performed the surgery on my mum, and hearing him saying [during the inquest] there is a 1% mortality rate to this surgery that could have saved her life is extraordinary,” she says. “She was so fit, so well and so stoic, and she was my everything in my life. I worked with her for the last 40-odd years and spoke to her every day.”
She added: “Since then, I’ve lost myself as well because I don’t have the one person that I can trust and belong to. It’s hit me in a huge way that I didn’t think was possible. Everything is more transient because I’ve lost the biggest person in my life and that’s what I struggle to get over.”