Summary
The Derby Peer Support Model, established in 2016 from collaboration between people living with type 1 diabetes and the local healthcare team, has been hugely successful. It now supports over 800 people to connect and share experiences via the Derby T1 Diabetes Facebook group. Underpinned by the NHS England six principles of peer support, almost all would recommend the group to others. The model is a source of information and emotional support – at no cost and with positive outcome data presented at Diabetes UK 2023. This model could easily be adapted and used in other diabetes localities.
Innovation
In 2016 Dr Wilmot had discussions with Nick Rycroft and Shaun Carpenter who highlighted that many people living with type 1 diabetes (T1D) had no mechanism for sharing experiences or gaining emotional support from others with diabetes. Nick and Shaun wanted to overcome this isolation through 24/7 peer support. The Derby team worked with Shaun and Nick and the Derby Peer Support Model was born. Historically, most diabetes peer support groups had been face-to-face and for people living with T1D and T2D, with low turnouts. The new model recognised that these groups had different needs. The Derby T1D Facebook page was set up, providing an online forum for people living with type 1 diabetes in Derbyshire to connect and support each other from home. In addition, face-to-face get-togethers were organised between members, and occasionally by the healthcare team. These involved discussions and open forums regarding the latest developments and innovations in T1D. The convenience of Facebook, coupled with the enthusiasm of the healthcare team to promote access and support the group, saw it grow from an administration group of three people with T1D in 2016 to 823 members in 2023. The group allows regular communication and support, as well as disseminating diabetes-related updates. There are usually four posts per day. This is thought to be one of the largest online local peer support groups. The team has provided input into the NHS England national recommendations on peer support models. To overcome medico-legal considerations healthcare staff did not become members themselves, but signposted people to the group. The team screen, review and moderate membership posts and ensure the group is for sharing experiences, not for the provision of medical advice.
Equality, Diversity and Variation
The online format removes barriers such as the time and money required to attend a face-to-face meeting. In 2023 98% of the UK population have internet access of some description, making the online format accessible for many, regardless of social status, deprivation or ethnicity. This 24/7 access on any online device negates variation in accessibility and allows people to reach out anywhere at any time. The Derby T1 Group is advertised by the healthcare team at diabetes clinics and members use word of mouth to grow the membership.
Results
Since 2016 there has been a substantial increase in the number of people joining and engaging with the group. People pre-emptively post their diabetes clinic appointment times and recognise each other from the Facebook group, creating a friendly, lively waiting room. The group is promoted by HCPs in the University Hospitals of Derby and Burton NHS FT. Cards were printed with DTN-UK flash glucose monitoring education links on one side and information about how to access the Derby T1 Facebook group on the other. These are available in clinic for professionals to hand out and to prompt discussion about holistic support. A total of 59 respondents were included in a user survey. They had a modal age of 41-60 years (66%) and were mostly female (78%). The mean diabetes duration was 25-40 years (32%) and mean HbA1c 54+/- 10mmol/mol. The majority used Facebook as their primary source of diabetes social media peer support (86%) and 64% had diabetes-related distress. Almost all (92%) would recommend the Derby T1 group to others and 56% had. The main reasons for membership were: ‘information and updates’ (54%); ‘emotional support’ (18%), ‘to help others’ (12%), ‘support when things get tough’ (8%) and ‘socialising (2%). The top reasons for posting were: ‘to help others with their diabetes’ (43%), ‘to get help with diabetes’ (31%), ‘socialising’ (10%), ‘venting frustrations’ (10%) and ‘sharing advancements and updates’ (3%). The majority (>70%) found the peer support offered useful. The set-up costs were zero. The group needed a small number of motivated people with diabetes as volunteer administrators and HCPs who recognised the value of peer support and directed people to the group.
User Feedback
The Derby diabetes multi-disciplinary team is invested in the importance of peer support and remains keen to direct people to the Derby T1 diabetes Facebook page. The University Hospitals of Derby and Burton team obtained ethical approval from the University of Notitngham to conduct a survey of the Derby T1 Facebook group membership in 2022 to assess the impact. The survey remained open for a couple of months, giving members the opportunity to feed back. Quantitative and qualitative data were gained, alongside anecdotal feedback from the group administration team. People said they enjoyed the sense of community and emotional support. Practically, members believed that their control had been improved by exposure to their peers’ experiences and advice. Individuals also made suggestions for improvements to the group. Some recommended subgroups, such as ‘Preparing for pregnancy’, or practical interventions like ‘More weekend meet-ups’, which are being considered for the future. Having a self-driven population allows the group to be flexible and shaped by user feedback.
Dissemination and Sustainability
The Derby Peer Support Model delivered a mechanism for peer support for the local T1D community. It is a no/low-cost model, which can be replicated elsewhere easily. The success of the group is evidenced by its seven-year duration and the ongoing active engagement and discussion within the group. Optional low-cost mechanisms for spreading the word about the group include cards in clinic, posters in waiting areas, plus dissemination about the group via primary care. Translation of similar initiatives to other medical areas with long-term, high-burden conditions would be feasible too.
