Our steering group consists of representatives from people with experience of diabetes and pregnancy, healthcare professionals and researchers in diabetes and pregnancy, and the charities Diabetes UK and JDRF. The group is chaired by our JLA Adviser, Katherine Cowan.
The steering group has oversight of the PSP and is responsible for key decisions through the process. The group will be responsible for various activities including publicising the PSP, overseeing the collection and checking of the uncertainties, and sharing the final priorities with research funders and policy makers.
'I hope that asking people about their questions will help to raise awareness of diabetes and pregnancy as well as ensuring that funding is directed towards questions that really matter to women.'
When Sonya Carnell found out that she was pregnant with her first child, she didn't have diabetes and wasn't particularly concerned about it, despite a family history of the disease. It wasn't until after she had delivered a large baby at 37 weeks that her doctor began to wonder whether she had had gestational diabetes – a condition that is more likely to develop if one of your parents or siblings has diabetes.
'I didn't have any checks for diabetes during my first pregnancy,' said Sonya. 'It was about a year after my first child was born that I was diagnosed with type 2 diabetes and my doctor began to wonder whether this had been triggered by diabetes developed during my pregnancy. I hadn't had any checks for diabetes and wasn't given any information about the disease either before getting pregnant or during the pregnancy.'
Sonya's second pregnancy involved weekly visits to clinics and numerous checks, but she still felt that vital information was missing.
'There were so many questions that I would like to have asked. I was repeatedly told that I was 'high risk' but I wasn't given much advice on how to manage the risks, or how my pregnancy might differ from others because of my diabetes. Information on the problems that can occur due to diabetes and pregnancy, and how to mitigate risks through lifestyle changes would have been really useful.'
Sonya would like to know whether there are links between diabetes, pregnancy and postnatal depression. She also believes that more information should be provided to women with diabetes before they become pregnant so that they can consider how best to manage the disease and how their medication might change as their pregnancy progresses. Those without diabetes should be made aware of risk factors such as family history of diabetes, having a baby over 4.5kg previously, or having a body mass index (BMI) over 30.
Sonya is now managing her diabetes to try to ensure that it doesn't progress. 'It doesn't stop me doing things but I am much more conscious of it,' she said. Her experience of diabetes and pregnancy and her interest in the topic has resulted in her joining the steering group for a new project that will draw upon the perspectives of women, their families and healthcare professionals to identify priority research questions.
Experience of pregnancy with Type 1 Diabetes
'My experience in hospital has made me want to help improve the care that diabetic mothers receive after birth.'
'I am a type 1 diabetic mum of two wonderful children. One is two and a half and one is three months old. The care I received during pregnancy and birth was exceptional. Unfortunately, the care I received after birth was not. My blood sugar levels were only tested two or three times during the five days that I was in hospital after having my first child. My blood sugar levels were not tested at all after having my second child. There were no meals customised for diabetics which meant that my blood sugar levels increased.
'Our older child was crying from the moment he was born till his first few feeds (which were formula as my milk didn't come till 5 days later after birth). He was tested four hours after birth and his blood sugars were low. With our second baby, I was better prepared. I managed to express some colostrum before she was born and she was fed that straight after birth. This improved her blood glucose but not enough unfortunately. She needed 48 hours of intensive care to be able to manage her blood glucose by herself.
'Managing diabetes is hard, but being a diabetic mum is even harder. This is due to the breastfeeding which adds another layer to managing diabetes, as breastfeeding lowers sugar levels and may require changes to medication. I received very little specialist care for my diabetes whilst I was in hospital after birth. This is why I am part of this project - to be able to help other diabetic mothers have a better experience in hospitals after birth. I think that diabetic mothers should receive customised care to include close blood glucose monitoring, and healthy meals and snacks.'