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.

Let's Talk - - Contents -

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.

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