Summary
JDRF, the Type 1 diabetes charity, and Diabetes UK teamed up with Norfolk and Norwich NHS Trust (led by Dr Swe Myint) to conduct a survey of the provision of diabetes care in UK universities and patients’ perceptions of their university diabetes care. The aim was to offer a collaborative, online University Toolkit for those with Type 1 diabetes studying at, or planning to attend, university. The key message of the online resource is that Type 1 diabetes is not an obstacle to university life. The toolkit helps patients to look after their condition effectively, so that they can make the most of their time at university. The online platform has sections covering: planning and preparing for university; UCAS and student support; accessing GP and specialist care; insulin storage and supplies; new friends; food; exams and stress; alcohol; smoking and drugs; sex and relationships; managing sick days; new routines; insulin pump users; emotional wellbeing; studying abroad; exercise; safe driving; advice and help, plus downloadable guides for friends or flatmates and a healthcare professional transfer letter.
Innovation
JDRF started developing a University Toolkit in 2016 and became aware, through local engagement at a transition conference, that Dr Myint was working with Diabetes UK to offer a resource for the Type 1 community focused on university. A meeting was arranged in Norwich to discuss collaboration and ensure that resources were not duplicated and efforts and budgets were not wasted. Everyone wanted the final resource to be as thorough and beneficial as possible to those affected by Type 1. The original toolkit planning was led mostly by volunteers and lots of work went into creating content and a structured list of university student services/disability teams to feed into a structured marketing plan. Social media messaging relevant for the audience was a part of the plan.
Results
To reinforce the message that Type 1 diabetes is not an obstacle to university life, the toolkit has been made as user friendly as possible. User feedback and focus groups showed that students wanted information electronically that was easy to access via the internet on various platforms (browser, tablet, phone etc). The toolkit is compatible with all formats and offers downloadable PDFs of each section. The tabbed layout of the home page, similar to an iPhone home screen, makes accessing relevant information quick and easy. There is also a smart search function. The marketing teams at Diabetes UK and JDRF worked collaboratively to agree on a structured marketing plan for the launch on 17 August 2018. Usage statistics from launch to 3 May 2019 showed: 4,119 visits; 11,532 page views; pages viewed per session: 2.8; average session duration: 1 minute 48 seconds; new visitors (never visited before): 91%; location: 63% UK, 21% US; devices: mobile 46%, desktop 45%, tablet 8%, and the top nine pages visited after the ‘Home’ page were: drugs and smoking, planning for university, alcohol, sex, contacting the university ahead of time, insulin storage, food, downloads, exams and stress.
Dissemination and Sustainability
The collaboration has saved any spend by Diabetes UK and the NHS. The original JDRF University Toolkit was funded by the Monument Trust, and updates were managed within the budget utilising in-house expertise. All content and website back-end changes were made by JDRF staff to minimise costs. The resource has been publicised in the media and feedback from healthcare professionals, university welfare officers and students suggests it is, and will continue to be, a valuable asset for students with Type 1 diabetes at university.
Method
The first meeting was productive and the three organisations, supported by a patient with Type 1 at all collaboration meetings, decided to work together on the content and style of the toolkit. The NHS team and Diabetes UK loved the look and feel of the existing toolkit and agreed to work together to review and add new content. As a result, the content has undergone many revisions and changes to offer an exhaustive structured platform for all topics important to the university audience. Students, graduates, parents, healthcare professionals and JDRF staff and volunteers have all had input. It has also been supported by the research work of Dr Myint and her team at Norfolk and Norwich University Hospital. For the national survey, 865 current UK university students aged 18-24 with Type 1 diabetes were invited to complete a structured questionnaire. Of these, 584 (31%), from 64 hospitals and 37 university medical practices completed it. It was revealed that 62% had maintained routine diabetes care with their home team, while 32% moved to the university provider. Since starting university, 63% reported that it was harder to manage their diabetes and 44% reported higher HbA1c levels. At university, 52% had frequent hypoglycaemia, 9.6% reported one or more episodes of severe hypoglycaemia and 26% had diabetes-related hospital admissions. Female students, and those who changed healthcare provider, were approximately twice as likely to report poor glycaemic control, emergency hospital admissions and frequent hypoglycaemia. Females were more likely than males to report stress, illness and weight management issues as barriers to self-care. Despite these difficulties, 91% of respondents never, or rarely, contacted university support services about their diabetes. Users have been involved with the content and design of the toolkit at all stages, via meetings at universities and attendance at the 2017 RAG National Student Fundraising conference.
