“I thought – I’m having a heart attack, but I don’t want to have it here! – so I got on my motorbike and went home…”
The patient is telling me about the time he nearly died and the time when, even in that terrible moment, his main concern was about how it would be perceived in his workplace.
“I just thought I’d never live it down. I knew I had bad chest pains but didn’t want to cause a fuss. I ended up getting an Uber to the hospital.” There, it was confirmed he had narrowly avoided a potentially massive heart attack and doctors immediately put six stents into his clogged vessels, to get the blood flowing around his heart again.
“I got discharged on Saturday and I can tell you, on Sunday I went to church, looked up, and said: ‘Thanks mate!’”
I am listening to this story in the Clinical Research Facility at Harefield Hospital, told by one of the patients who are trialling new drugs. This patient has familial hypercholesterolemia, a common enough condition, but with a twist that made his doctors interested in putting him forward for a trial.
“I was doing well on Repatha – it was causing my cholesterol to plummet. But I got a call about this new drug that tackles my LP(a) cholesterol. They said LP(a) is supposed to be 300, but for this study they want people with over 700. I asked about mine and it was 2,500!”
He is now one of thousands of patients worldwide trying out the new drug, under a trial being run by pharmaceutical giant Novartis. The trial is among more than 30 studies being carefully managed by the eight-strong Clinical Research Nursing team at Harefield.
The team’s role is multi-faceted. They recruit patients to the trials, manage their education and expectations about what the trial is about, conduct the trial by administering the drugs and taking samples, manage the data collection process, and interact with regulators, while collaborating with drug companies and providing feedback on the design of the trials themselves.
“We get to see our patients for a long time, we get to know them and get to know their families. We get to know them for years,” says one of the research nurses. In that sense, it is different to many other forms of nursing, where patients come and go quite quickly. “It’s about improving people’s lives, not just currently, but for the future, too.”
In the lab, I speak to two of the team who are processing samples – in this case, centrifuging blood to separate the red and white blood cells, and then storing them in minus 80 degree freezers. “You have to know what you’re doing. There are so many different studies and you have to know the right protocol for each one. It keeps you on your toes,” says one of them, a former psychology graduate who switched careers. “We all really depend on each other which makes me feel valuable, an asset to the team.”
I begin to see the appeal of a role I thought would feel like being a small cog in a huge, never-ending machine. Like one of those pharmacists who works on just one small part of a drug that takes decades to develop, and never sees the end of their work.
The team love the blend of scientific discovery and advanced medicine, the impact this can have on the vast, seemingly never-ending diversity of human illnesses, and the way they look after their patients through the many weeks, months or years of a trial, often seeing them physically getting better and better.
“I’m really passionate about research. If it doesn’t happen, you just can’t treat people. One day I will design a drug myself. I’m working my way up to that!” says another member of the team. “I get bored quite easily but research is constantly changing and you are constantly learning.”
Her colleague adds: “The patients who say yes to doing the trials are so lovely too. They don’t get paid. They are just giving us their time. It’s that generosity which keeps us going as a hospital.”
The patient I’ve met is certainly grateful. “If this had happened to me 20 years ago, without all these drugs, I would basically have been dead.”
He has also since discovered, since this is an inherited condition, that his two young children have it as well, which means he and his wife can now be better prepared to tackle how the condition affects them and take measures to mitigate this.
“This is why we do what we do,” says the team manager. “…to prevent these kinds of things from happening to other people and changing people’s lives for generations to come.”
The study phase of the Novartis trial is due to continue until 2030, with a target of recruiting more than 8,000 patients across more than 40 different countries, including the patient at Harefield who is grateful he is still alive.
His experience has had a wider impact too – on the work family, as well as the actual family. Back at his workplace, warmly welcomed on his return by the very colleagues he was afraid would tease him, there is now a rather different mood, a new awareness of vulnerability in this male-dominated office.
“Everyone is so much more health conscious. One of our colleagues was diagnosed with prostate cancer and overnight, everyone else got tested.”