What it’s like to take part in a stroke research trial
There are, as we get older, always various health issues to consider. But getting involved with a research project can help to shape care for patients now and into the future.
John Lewis, a retired TV film editor from Blofield, Norwich, helped to deliver news to BBC audiences across the country for more than 30 years and now he is helping the NHS to deliver better treatments for the future by championing health research.
Before retiring, John edited more than 6,000 editions of BBC Look East from its studios in Norwich.
His career also saw him working on the national BBC news in London alongside news readers such as Michael Aspel and Richard Baker.
In 2015, having been retired from the TV world for some years, John suffered a transient ischaemic attack (TIA) also known as a ministroke, which was caused by a temporary blockage in the blood supply to part of his brain.
John says: “It was as if I had an icicle at the top of my head and all of a sudden I felt cold and shaky, my left arm went numb and my face drooped. Having seen the TV promotional adverts about what to do in the event of a stroke, I thankfully managed to call 999.”
John was rushed to the Norfolk and Norwich University Hospital (NNUH) where doctors gave him treatment to break up the blood clot that had caused the blockage.
John started to feel a bit better by the next day and while on the ward he was visited by a nurse from the hospital’s research team.
The research nurse offered him the chance to join a clinical research trial looking at blood pressure variation in people who had had strokes or TIAs and John decided to go for it.
He says: “All of the staff were quite exceptional and the research nurse himself was not pushy in any way. He said I was free to leave the trial at any time and said there’s nothing compulsory about it. I thought ‘Well they’ve been really good to me here and I can’t fault the treatment that I’ve had so I’ll volunteer’.”
The study aims to test if blood pressure variation is an indication of risk of stroke, and it required volunteers to be monitored over the course of one year following their stroke or TIA. The monitoring included having an electrocardiogram (ECG) along with testing of mental ability, memory and coordination. John was also given a blood pressure monitor to take readings at home for a week and report back to the team.
I thought well, this is different to what I expected. I would definitely take part in research again
He says: “I thought ‘Well, this is different to what I expected’. When you think of medical tests, one immediately thinks of taking tablets for a trial period or having something more serious done. The research nurse gave me his phone number and said ‘If you’ve got any worries about anything just call me’. It was very reassuring to have somebody who is experienced in post-stroke care to be able to instantly get through to.”
Since taking part in research, John has been spreading the word and raising awareness of how he felt he benefitted, which has even led to others getting involved in different studies. He says: “I spoke to a few other people about the experience and said that joining it is the best thing I ever did, and one of them was subsequently asked to take part in a different research study.
“I would definitely take part in research again if offered it. You know, there’s nothing like having that barometer to know how you’re doing. It’s fantastic, I’m all for it. It’s vital! There is no other word for it.”
Professor Erika Denton, NIHR clinical research network accountable officer for the Eastern region and associate medical director at NNUH says: “At NNUH and across the Eastern region researchers are striving to find new treatments to help patients now and for the future, but we simply could not do this without the valued input of volunteers like John. We can never thank them enough but with their help, and the dedication of our NIHR and NHS research teams, we can make important advances to allow more people to achieve healthier outcomes.”
John Lewis at home, recovering from his mini stroke.