Shared learning database

Published date:
May 2015

The toolkit is an accessible and easy-to-read information resource for women with type 1 diabetes planning a pregnancy. The resource covers preconception planning and takes the patient through to delivery, describing what healthcare to expect during each trimester and at delivery. The resource follows the recommendations made in the latest NICE guidelines (NG3) to ensure it complements the information provided at clinic/hospital appointments.

Does the example relate to a general implementation of all NICE guidance?
Does the example relate to a specific implementation of a specific piece of NICE guidance?


Aims and objectives

- Produce a top quality, type 1 diabetes-focused resource to educate and inform women with type 1 diabetes who are pregnant or are planning a pregnancy.
- Providing information about what to do when planning a pregnancy and what to expect during each trimester, including how it will affect type 1 diabetes management, and what to expect from the healthcare team.
- Raise awareness within the type 1 diabetes community of the needs of women with type 1 diabetes who are pregnant or planning a pregnancy.
- Ensure women with type 1 diabetes, their friends and their families are aware of their specific pregnancy needs and the importance of preplanning.
- Raise awareness within the healthcare community of the needs of women with type 1 diabetes planning a pregnancy
- Provide a tool for healthcare professionals to help educate and inform women with type 1 diabetes planning a pregnancy
- Produce a nationally available information resource that can be distributed free of charge to women with type 1 diabetes
- Signpost women with type 1 diabetes who are pregnant or are planning a pregnancy to appropriate organisations and resources.
- Include names, contact details, and web addresses of other organisations and resources with type 1 diabetes and pregnancy information.

Reasons for implementing your project

JDRF produces a variety of information and support resources for people living with type 1 diabetes. Our resources are available free of charge on our website, are ordered by people living with type 1 diabetes, and are distributed by healthcare professionals to their patients across the UK. They benefit a potential 400,000 people living with type 1 diabetes in the UK.

Prior to this project, JDRF did not have a resource solely for women with type 1 diabetes planning a pregnancy. Not only was this frequently requested by our supporters, but we also believed it was vitally important for women to be aware of the potential complications and risks of their pregnancy and understand how to work with their healthcare team to mitigate them.

We carried out research to determine what pregnancy resources were already available nationally to women with type 1 diabetes. The research showed that there was very little easy to understand information available aimed solely at women with type 1 diabetes. Existing resources were often produced by individual diabetes departments focusing on local populations, and without the resources to distribute them nationally. Furthermore, advice for women with type 1 diabetes advice was often mixed with advice for women with type 2 diabetes.

We identified a clear patient need for a simple, downloadable, information resource about all aspects of pregnancy with type 1 diabetes that identified pre-conception goals.

How did you implement the project

This was a volunteer-led project, making it extremely cost-efficient. Being volunteer-led also ensured the project had people living with type 1 diabetes at its heart, and was service-user focused from the outset. No budget was required for printing as we decided to make the resource only available as a PDF download. The only cost was using an external graphic designer to design the toolkit for approximately £500. This was funded by JDRF.

The research stage revealed a new diabetes and pregnancy resource produced by Dr Valerie Holmes and her team at Queen's University, Belfast. While the resource was not solely focused at women with type 1 diabetes, the online videos are useful and informative and so we wanted to link to this resource within ours. Dr Holmes was approached by the volunteer project lead and agreed to sit on a review panel for this project and allow us to reference and link to the Queen's University resource. The review panel was recruited to ensure the advice in the toolkit is relevant to the UK healthcare system, with members from England, Scotland and Northern Ireland. The review panel was made up of a balance of service users and providers. Service providers included nursing staff, clinicians and experts in the field of pregnancy and type 1 diabetes. Service users were women with type 1 who were pregnant or had given birth.

The JDRF affiliate in the US launched an online pregnancy toolkit in 2013 and this was identified as a good starting point for the text of the UK version. The review panel helped to rewrite the healthcare content to follow UK NICE and NHS guidelines. Additional quotes and comments were added by the service users. The review panel included:
- Gillian Sweeney, JDRF volunteer lead - Dr Valerie Holmes - Senior Lecturer, Centre for Public Health, School of Medicine, Dentistry and Biomedical Sciences, Queen's University Belfast - Dr Helen R Murphy - Honorary Consultant/Senior Research Associate University of Cambridge - Professor Graham Leese - Consultant and Professor in Diabetes and Endocrinology Ninewells Hospital and Medical School, Dundee - Dr Michael J A Maresh - Consultant Obstetrician, St Mary's Hospital, Manchester - Susan Quinn - Diabetes Specialist Midwife St Mary's Hospital , Manchester - Mary Roberston - Senior Diabetes Specialist Nurse , Honorary Teaching Fellow, Biomedical Research Institute, Ninewells Hospital , Dundee - Pauline Mitchell - Diabetes Specialist Midwife - 3 x service users

Key findings

As the resource is very new, its success is initially being judged by qualitative user feedback, and monitoring the number of downloads from the JDRF website.

Between its launch on 16 January and 25 March 2015, there were 171 orders of the toolkit, with a forecast total of 800 orders over a 12 month period. This far exceeds our expectations for a downloadable PDF resource, as many copies will simply be emailed between users rather than ordered from our website. Orders have been placed from the following geographic regions:
Greater London, South East, South West, Central England, Wales, Anglia, Yorkshire & Humberside, North East, North West, Scotland. Qualitative feedback sent to us by users included:
"Thanks very much for sharing this - it looks like an excellent resource. I'll forward to the rest of the team - as you say there may be some of the older teenagers who'd find it helpful to reassure them about planning a pregnancy in the future". Consultant Paediatrician, Dundee.

"I've just had a chance to scan over the new pregnancy toolkit but it looks good and something we could definitely use". DSN, Inverness.

"An excellent resource". Consultant diabetologist, Aberdeen
Further user feedback is going to be obtained on an ongoing basis by emailing an online questionnaire to both HCP Toolkit users and patients. Questionnaires can be viewed here:
Survey for general public:
Survey for healthcare professionals:

Key learning points

The project has been straightforward so far with no significant challenges or obstacles to overcome. However the project did take slightly longer than anticipated largely due to the differing response times of the review panel. But this is difficult to avoid and would just need to be factored into future projects. The use of a digital download has so far proved very successful. The format is widely used, and means that edits and changes can be incorporated almost instantly without need for a new print run. It also cuts costs for printing and postage. If, at a later date, we find sponsorship for the resource, then we would consider printing the toolkit to ensure we maximise its reach.

Contact details

Simon Mitchell
Community Relationship Manager

Is the example industry-sponsored in any way?