Patient experience proves vital in improving diabetes care

Sarah Gregory and Mandy Carliell with diabetes patients
Members of the diabetes patient group with specialist nurse Sarah Gregory and Head of Patient and Public Involvement Mandy Carliell

Published on 27 November 2019

Discussing the weather is a British tradition but for Pauline Driver it proved potentially life-saving.

Because when she mentioned the foggy conditions she’d experienced getting to the office one morning, and her colleagues looked at her blankly and said it was a bright, sunny day, she realised something was wrong with her vision.

It turned out to be a symptom of Type 2 diabetes, and she was diagnosed less than a year after her husband Ron was told he had Type 1.

Pauline believes the stress of his diagnosis had an effect on her health.

She said: “I think it was the shock of Ron being ill. My glucose levels are affected by a range of things, including emotions and stress, so it makes sense.

“It wasn’t something either of us wanted but actually at times it’s useful that we both use insulin because it means if I need some quick advice or have a query I can ask Ron and often he’ll know the answer.”

Looking back, Pauline had other symptoms of the condition, such as increased thirst, but it was easy to dismiss them as part of getting older, or other factors.

The couple, from Birchington, both use insulin injections to control their condition. Most people with Type 2 diabetes use diet or tablets but they didn’t work for Pauline.

Ron said: “Controlling it is not as easy as people think. It’s not as simple as eat this and don’t eat that, or inject this much insulin and you’ll be fine.

“My first consultant at Medway hospital put the situation in perspective by saying it’s easier putting a man on the moon than sorting diabetes.

“It’s a combination of a lot of different factors, including food, exercise, and stress, and you are constantly juggling them.

“You have to be proactive rather than reactive and plan ahead and there is always more to learn.”

The pair are both part of the patient project group for diabetes set up by East Kent Hospitals University NHS Foundation Trust, and have been helping to improve care for other people with the condition.

Part of this has involved creating a patient passport for people with diabetes, to help them prepare for planned operations and to help staff provide the best care.

People whose diabetes is not well-controlled are at a greater risk of having their operations cancelled or postponed because of the increased risks to their health.

The booklet was prepared by specialist staff with input from the patient group, and diabetes nurse Sarah Gregory said their feedback was vital.

She said: “Without their input, the passport would be produced by clinical staff based on what we think patients need.

“But thanks to the patient group, we can find out exactly what they need and want, and can make sure the language is appropriate and the document is easy to understand.

“We were able to involve representatives from Diabetes UK as well as our colleagues from the community as well and I think the result is something that will be very useful in helping people with diabetes avoid having their operations postponed or cancelled due to their condition.”

The passport is now being trialled for patients at the William Harvey Hospital in Ashford and will be rolled out to other sites over the coming year.

Training for staff and primary care teams is also being arranged.