Research a banker for Essex man Terry

Terry Clark was looking at his mum, who was laid up in hospital with polycystic kidney disease that would later cause her to need dialysis treatment.

Junior doctors had surrounded her bed when she was admitted, puzzling over a diagnosis. When Terry returned to visit her the next day, he noticed bruises on her arms caused by doctors prodding.

He said: “When I asked her why she put herself through all the testing, she told me: ‘If it saves someone else’s life, then what does it matter?’

“I’m not quite as strong a character as my mum was, but I knew then – and this was back in the 70s - that she was right. Unless you get involved in research, nothing advances.”

Terry’s mum was given six months to live, but due to the excellent care of doctors, testing and research, she lived a relatively healthy life for a further 10 years. “That’s another reason why I realise how valuable research is,” Terry said.

Monday, 20 May every year is International Clinical Trials Day, the anniversary of what is believed to be start of the first clinical trial into scurvy in 1747. Terry is sharing the story of his passion for research to help raise awareness of clinical trials offered by NHS trusts and GPs.

The former banker from Chelmsford, Essex, was himself diagnosed with polycystic kidney disease when he was in his 30s. The hereditary disorder, which causes lots of fluid-filled cysts to form in the kidneys, is a form of chronic kidney disease that reduces kidney function and can lead to kidney failure. The disease has progressed to such an extent in Terry that he relies on dialysis treatment to stay alive.

Terry is currently involved in two research studies at Broomfield Hospital, part of Mid Essex Hospitals NHS Trust. As a survivor of three heart attacks in three years from 2014 to 2016, he is enrolled in a cardiac study, where he completes a questionnaire to assess his diet, exercise and lifestyle, and a kidney study on Vitamin D.

Of the questionnaire study, he said: “It’s only when you see questions in black and white that you stop and think about what you could be doing differently. I’ve lost about four stone since I started the trial about three years ago and I think being part of the research, which gives me accountability, has helped as much as getting my medication, dialysis and fluid balance right. I feel so much fitter.”

The ongoing care 60-year-old Terry, who lives with wife Linda, receives while being part of the studies has contributed to his wellbeing, too. “It feels like my MoT, where I get everything checked,” he explained.

Terry is one of 870,250 participants in NHS research supported by the National Institute for Health Research (NIHR) in 2018/19. The NIHR, which is funded by the Department of Health and Social Care, funds, supports and delivers high quality research that benefits the NHS, public health and social care.

Dr Jonathan Sheffield, chief executive of the NIHR Clinical Research Network, said: “We are delighted that this year alone, hundreds of thousands of people across the country have given their time to improve healthcare for others. Without their commitment, vital health research that changes lives simply could not happen.”

For someone who has had so many health issues – he also had two ‘mini-strokes’ within a week of each other two years ago – Terry maintains a positive outlook on life. “I’m lucky to be here,” he said. “I’ve had difficulties, but I’ve come through them.

“Research has really helped me to take stock. I would encourage anyone to ask their doctor or nurse about getting involved.”

If you would like to find out more about research in your area, visit the new Be Part of Research website at www.bepartofresearch.uk.