‘Signing up for a diabetic research study saved my life’

Diabetes can be life changing. For Steven, the condition stopped him working and has had long-term impacts on his health leaving him with neuropathy, poor mental health and significant sight loss. But a research study at ESNEFT offering the opportunity of trying a device to monitor his condition helped him take back control and get back to work.

Steven, who worked as a teacher and social care commissioner, found monitoring his blood sugar for his type 1 diabetes a challenge. Finger prick tests throughout the day were difficult and he was self-conscious doing them in front of others.

Man in tortoiseshell glasses

Trying to manage his diabetes while working, being a dad to his two young children, while his condition continued to worsen left Steven in poor health.

Steven, who lives in Hadleigh, said: “My blood sugars were up and down like a yo-yo. When I was working, there were times when I needed to be helped by colleagues as my blood sugars would drop and I’d start feeling confused or even collapse. Ambulances had to be called and it must’ve been really difficult for my children to watch that.

“Living with type 1 diabetes affects your personality too – I know there were times when I wasn’t behaving like myself, when my mood was so low and the constant need to make countless decisions about my diabetes resulted in my just wanting to give up.”

His condition became so bad, affecting his eyesight and overall health, Steven felt he had no choice and gave up teaching in 2004.

But a positive change came when he was put in touch with the Diabetes Research team at Ipswich Hospital who were running an ongoing study into a device for people with type 1 diabetes called FreeStyle Libre. The device is attached to your upper arm and you use your mobile phone to scan it to check your glucose levels.

Steven’s involvement with the trial changed his life.

Steven, who is 63 now but joined the trial ten years ago, said he could easily and discreetly monitor what his blood sugar was doing, know when he would have to give himself insulin and prevent a hypo or hyper.

He said: “Libre changed my life – I wish it was available years ago and then perhaps I wouldn’t be experiencing such severe side-effects of diabetes now. Being able to easily monitor what was happening with my sugar levels without having to keep finger pricking was fantastic. I was able to earn a living again, I was able to start living for perhaps the very first time. I felt I was gaining some control over my condition.”

Two images merged, top image of top of person's arm with white plastic circle attached. Bottom image a mobile phone showing blood sugar levels

The Libre device is a circle stuck onto on a person’s upper arm and when scanned shows the sugar levels on a mobile phone app

Steven said constant finger pricking over 50 years is not only painful but has left his fingertips numb.

“I was so conscious about doing finger pricking and never wanted to do it in front of people. I was a bit conscious about the Libre disc on my arm, particularly in the early days, but I see so many people with them on. My wife works in a school and there are children who have them and no one bats an eyelid.”

Steven said he even helped someone at a bus station who he recognised had a Libre and was acting strangely, which he recognised as meaning he was poorly. “Others thought he was drunk but I could see he was unwell and I could help assist him assessing his glucose levels and saved an ambulance from being called.”

Steven said his son Simon, 32, also has type 1 diabetes and uses the Libre system as well which is allowing him to “live the life any young person should live”.

Woman with dark hair smiling at camera

Jane-Zhixin Jiao

Senior diabetes research lead nurse Jane-Zhixin Jiao said the Libre study offers a vital lifeline to people living with the condition.

She added: “The study continues to run and is gathering crucial information to validate the performance of the FreeStyle Libre device before they can be purchased or given out on the NHS. This has changed the lives of people who live with diabetes nationally and internationally.

“With the trials running in the Ipswich Hospital diabetes research team, we are able to offer a great opportunity for people to try out the device to monitor their sugar levels and help keep in control of the condition – as Steven experienced.

“Not everyone is eligible for the device on the NHS tariff or can afford this device, so we are proud of offering the trial for the people who are in need.”

For anyone interested in signing up for the Libre study please contact the Diabetic Research Team by emailing Research.AdultDiab@esneft.nhs.uk

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