The device that raised the alarm and saved my life
Gavin Redhead, a patient advocate, tells us how heart failure healthtech recommended by NICE helped transform his life.
Gavin Redhead
Patient advocate
I’ve had heart health issues for most of my life; I was born with a hole in my heart which did resolve itself but left me with hypertrophic cardiomyopathy, a disease where the heart muscle becomes thickened. My condition got steadily worse and in 2019 I was diagnosed with severe heart failure.
I’ve got a new lease of life, and I’ve got to meet my grandson, which is the most precious gift of all.
Signing up for a clinical trial changed everything
I signed up to be part of a clinical trial called Triage HF. The trial looked at using implanted devices to monitor patients remotely.
The TriageHF device detects subtle changes in your body that signal trouble ahead, such as changes in fluid levels in the chest, heart rhythm irregularities, or reduced physical activity. Most importantly, they can spot these warning signs up to 30 days before a patient would typically notice symptoms or need hospital treatment. This is exactly what the device did for me.
Data from the trial I was on in Manchester was used by NICE when producing its guidance on algorithm-based remote monitoring in people with cardiac implantable electronic devices, which was published in 2024.
When my device raised the alarm
With heart failure, you can have good and bad days. Until I had a call from my clinical team, there were no warning signs to tell me I was in trouble. They told me that my device was indicating that I was experiencing atrial fibrillation and I needed to be seen as soon as possible.
Following further tests at the hospital, they confirmed I had atrial fibrillation and advised me to start thinking about having a heart transplant.
I was transferred to the transplant team, and following a 3-day assessment, I was selected as a candidate for the routine transplant list. After 5 weeks, I was contacted at home to say they’d found a match and could I come in. I could not believe it; I was expecting to be on the list for months, or years, certainly not a few weeks!
A new lease of life
Before my heart transplant, I struggled to get up the stairs. I knew something had to be done, but I could not believe how much my quality of life improved after my transplant.
Now, I’m spending a few hours a week gardening at my allotment. I recently competed in my first British Transplant Games, taking part in 4 sports which I had never tried before and was surprised to become a bronze medalist in 2 of them!
Recently, I’ve celebrated the birth of my first grandchild, which is something I did not expect to happen. He’s nearly 18 months old now and he brings me joy every day.
Driven to help others
Through the Pumping Marvellous Foundation, a leading heart failure charity, I had the opportunity to get involved in re-shaping the heart failure guidance with NICE. I jumped at the chance, working with a whole mix of people, from clinicians to policy makers, to develop NICE guidance together. I can explain what it feels like to have heart failure and when others were listening to me, I understood the importance of having patient voices in this process.
I was a lead patient expert that feedback as part of a team on behalf of the charity on a total of 4 of NICE’s technology appraisals. These were:
Get involved with NICE’s work
You can get involved with NICE by registering as a stakeholder, joining a committee or working group, attending open meetings, or helping shape their guidance, like I do.
It has been a great experience, and I cannot recommend it enough.