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'It was such a relief to be able to share experiences of my condition with others'

John Roberts, who was a patient representative on the NICE guideline development group talks about his experience of diabetes and the importance of receiving ongoing structured education around the time of diagnosis.

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"When I was diagnosed with diabetes at the age of 47 I had already been experiencing many of the classic symptoms of the condition, such as regularly getting up during the night to use the toilet, excessive thirst and tiredness. Up until this point, the only other person I had known with diabetes was my grandmother.

"I remember going to visit her as a child and seeing her steel insulin needles being sterilised in a pan on the stove. When my diagnosis was confirmed, I resigned myself to the fact that this was the type of everyday regime I would now have to follow in order to manage my condition.

“Looking back, what I really needed was a book that gave me straightforward facts about Type 2 diabetes based on up-to-date medical knowledge rather than the distorted memory of my youth.

"I needed answers to important questions such as how changing my diet could help my condition, long terms effects, what insulin is and information about medications that could help me. Unfortunately the little information I did manage to obtain was written in medical jargon and I found myself getting extremely frustrated.

"A friend told me about a local support group for people with diabetes, which I reluctantly agreed to attend. It was such a relief to be able to share experiences of my condition with others and receive clear information for the first time.

"Not only did the classes cover information such as what foods to eat, how to understand food labels and possible complications of the condition – the group gave me reassurance that I was not the only person out there who wanted to get answers to separate the fact from the fiction about diabetes.

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“I now help in running patient education programmes at the Merseyside Diabetes Support Group. The sessions we run, in line with the X-pert programme, help address issues that often get overlooked in the management and care of diabetes.

"As part of the sessions I run, we take members out on a tour around a local supermarket to address some common confusion surrounding dietary fat, starchy and sugary foods, salt, fibre and food labels.

"This encourages a diet that is enjoyable and balanced whilst dispelling the concept of ‘good’ and ‘bad’ foods. It also allows participants to become familiar with food labels and confident in making sensible food choices. The programme also includes a close look at carbohydrate digestion and the resulting rise in blood glucose levels, and explanation of health results such blood cholesterol levels, body mass index (BMI) and waist circumference.

“I’m really glad that the new NICE guideline calls for structured education to be offered to every person and/or their carer at and around the time of diagnosis. Being diagnosed with diabetes can throw up questions about how it fits into your lifestyle - from how it makes you feel, to the best ways of managing diabetes when you are exercising.

"Although there’s no known drug to cure the condition, clinicians and other healthcare professionals can provide important practical help to individuals - for example, advice on how to ensure they are getting accurate and helpful blood glucose results.

"By putting a structured education programme in place, people with the condition and their carers will have access to good information when they need it most – this will mean they feel more confident in managing their condition and that they have good information at the right time to help them make decisions about their care that are right for them."

The NICE guideline is available at:http://www.nice.org.uk/Guidance/CG66

 

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