Producing guidance on diabetes in pregnancy: a personal account
Saiyyidah Zaidi describes her experience as a lay representative on the NICE guideline development group that produced guidance on diabetes in pregnancy earlier this year.
“At 26 weeks pregnant I was shocked to find out I had gestational diabetes. All of a sudden, I had to take in information about a condition I knew nothing about. I became extremely worried about the increased risks my baby and I faced,” says Saiyyidah.
She logged on to the Internet to find out more, but what she found was not reassuring - in fact, it made her diagnosis even more daunting.
A few weeks later, she heard that NICE was due to start work on guidance for the NHS on the care women with diabetes should get to help manage their condition when they are preparing to conceive and after giving birth.
Saiyyidah decided to apply to be a lay representative on the group producing the guidance, “so that I could provide a voice for all women who found themselves in the same position as me”.
Although delighted when her application was accepted, she did wonder if the invitation was just a gesture towards patient involvement.
“I could not have been more wrong. My views were listened to and I felt fully able to contribute to the discussion. Of course, at times I did not understand all the discussions going on around me, particularly when technical terms were being used. However, my colleagues took time out, when necessary, to explain complex terms so that I could contribute”.
The recommendations, which were developed over 15 months, formalise the care of women with diabetes and gestational diabetes in England and Wales.
“For example, after looking at the best available evidence we have recommended that women with pre-existing diabetes should access specialist services prior to conception and be given advice on the importance of planning their pregnancy.”
The recommendations, she adds, will help to minimise the risk of problems for women with diabetes and their babies.
Being on a guideline development group has helped develop Saiyyidah's confidence and was, she says, a “great experience”. “It really took me out of my comfort zone and I developed skills that have benefited me personally. For example, I delivered a presentation on the guideline at a large medical conference and was a media spokesperson when the guideline was launched.”
Having a baby is a huge decision for anyone but, as she points out, for women with diabetes, it is a decision that requires much more thought and careful planning. “If the NICE guideline had existed when I was going through my first pregnancy, I would have realised that my family origin and being a little overweight put me at high risk of getting gestational diabetes. Then I would have planned accordingly.
“This guideline takes the information-seeking and questioning that I had to do by myself and puts it into a package to give women the right level of support to help them plan before, during and after their pregnancy.
“I'm very proud that I had the opportunity to contribute to formulating the NICE guidelines and would certainly be a lay representative again if I have the opportunity.”
Saiyyidah was 8 months pregnant when she joined the guideline development group. She gave birth to a healthy baby boy.
The NICE ‘Diabetes in pregnancy' clinical guideline was published in March 2008 and is available at www.nice.org.uk/CG63
Issued: 6 July 2009
This page was last updated: 10 May 2010