How Research Gave Gilbert a Better Life

By Eloise Healey
July 12, 2026

“If you have interest to get involved in research, it will benefit you as well as others! I have learnt so much about myself and my involvement has also helped doctors and research. It’s probably also given me a better life, through getting involved.”

~ Gilbert, Patient and Patient Advocate

His story in 6 moments

“I have been involved in patient advocacy for many years. My voice has been heard and the feedback I have given has helped to steer services to where we are now with the delivery of support to patients. I know many other people who have been involved, but I’m proud to have contributed quite largely to a lot of programs.”

“Patient voices have driven forward research around this condition. In 2013 when the NHS opened up to getting patients involved, I was there as one of the pioneering guys in the early stages. Since then, it’s become such a priority in research and in the NHS – if you haven’t got patient support to a programme, there is no programme.”

“We can sometimes learn more through families and representatives than we do through the patient. It extends beyond the patient, listen to the family, the carers, the support network. We need to know more, and we need to know every little thing – it’s the detail that matters to health.”

“The patient is the expert; they’re the ones living with the condition and going through it. Each person is always different, and we have to establish how to treat each person and how the condition affects them.”

“Having been given so much, I want to give back. To be given a new heart was such a wonderful gift, right before Christmas. I was in hospital over Christmas and I was thinking over Christmas that the best gift anyone can give is life.”

“I’ve created Facebook groups, I’ve done peer support to patients, clinical lead support to clinicians, doctors and nurses to many different organisations over the years. I’ve felt like my work has been rewarding.”

Gilbert’s Story

Gilbert was diagnosed with hypertrophic cardiomyopathy in 1990. At the time of his diagnosis there was very little information surrounding the condition which inspired him to help drive research forwards. He worked closely with the Cardiomyopathy Association which had just been set up back in 1990 by Caroline Biro and Prof William McKenna. After being placed on the organ donor list in 2013 and receiving a heart transplant in 2016, he acknowledges how patient voices, including his own, have helped raise awareness and understanding of the condition so that treatments and services can progress.

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