Personalised Care for Disengaged Young Adults Aged 16-30 with T1DM


Disengaged young adults with type 1 diabetes (T1D) are vulnerable to poor health outcomes, and notoriously difficult to support with existing models of care. Structured education using psychological techniques has had no demonstrable beneficial impact in this group. Potentially 20% of young adults aged 16-30 could be included in this category. East and North Herts CCG commissioned East and North Herts Institute of Diabetes and Endocrinology (ENHIDE) to pilot an innovative model of supported tailored care, which started in August 2016. A two-year pilot project was set up to provide an alternative model of tailored care, with access to a dedicated young adult (YA) support worker and diabetes specialist nurse (DSN), using text, Skype, email contact, flexible appointments, and access to newer methods of treatment and monitoring.

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There does not appear to be any other scheme that combines flexible support through nurse and YA key worker-based care for this challenging group with T1D. Many efforts have been made to adopt psychological models of care, education and support but they have not demonstrated impactful change in admissions rates or metabolic control. This new initiative is based on primary and secondary care working closer together to understand the patient’s needs while also informing YAs of the importance of regular diabetes health checks and re-engaging them to come back into the service. It seeks to understand the difficulties and challenges YAs are facing with T1D and to empathise with individuals’ pressures of work, social situations, the mental acceptance of having a long-term condition and the impact it has on their lives. The project heard views from disengaged YAs via a survey carried out by Diabetes UK detailing what they would like from diabetes services. Initial conversations took place with patients when they joined the project and they were asked to share why they were disengaged with their diabetes care. Outcomes were agreed by the team with the patient and the objectives, frequency and method of contact were finalised. Providing different methods of communication and flexible, individualised patient care is important to this vulnerable cohort of patients.


The project started in October 2016 with consultant diabetologist support for the diabetes specialist nurses (DSN), as well as a full-time YA support worker and project manager. It operated beyond boundaries, with the team active in community and hospital settings. The team worked closely with primary care to identify each individual’s psychosocial needs. The consultant identified care process and biomedical improvements, agreed and complemented by those the YA wished to achieve. Initial contact was made by invitations hand-delivered to home addresses with an ‘opt out’ choice. Thereafter a face-to-face, phone or text introduction took place. The team offered flexible communication, signposting to lifestyle andbehavioural support, use of newer insulins and monitoring systems, with the objectives of: regular contact with the telehealth care team using texting, Skype or direct contact; improved attendance at clinics, routine laboratory tests and retinal screening; reduced hospital admissions with diabetic ketoacidosis (DKA) and hypoglycaemia; improvements in biomedical measures, and improved patient experience. A clinical proforma was completed by the DSN, capturing baseline information on the reason for inclusion, psychosocial status, biomedical measures and YA priorities. The same information was captured at six and 12 months to assess the impact of the new model of tailored care, also looking at the improvement in their diabetes management and theiroverall well-being . All those recruited to the pilot project were also asked to complete a Diabetes Attitudes Wishes and Needs (DAWN) questionnaire to assess their psychological needs. If patients were identified as ‘at risk’, further action would be taken.


There was a higher proportion of males (69%) to females (31%) in the disengaged cohort, in contrast to a 54% male, 46% female distribution among those already engaged with the specialist service. As at 9 May 2018, 86% of the young adults invited (n =148)had engaged with the telehealth team, either via the DSN or with the YA support worker. Of the 115 patients who had a six-month follow-up review a 78% reduction in acute admissions was documented, compared to one year prior to participation; there was a 90% increase in face-to-face contact; a 57% uptake in retinal screening, and 60% had recent blood testing. Further analysis will be undertaken to examine the impact of deprivation, a family history of diabetes and other psychosocial factors in individuals’ responsiveness to the telehealth service.

Sustainability and Spread

This is a two-year funded project that is due to be reviewed in October 2018. The project team has presented to the CCG and GP Governing Body with a view to sustaining the service. Various enquires have been received from other clinical teams to share learnings, resulting in a presentation at a conference held by the Thames Valley CCGs, an enquiry from York Teaching Hospital and Foundation Trust, which is considering running a similar project, and local interest in the role of a YA support worker within a specialist service.

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QiC Diabetes Finalist 2018
Type 1 Specialist Service – Children, Young People and Emerging Adults
Personalised Care for Disengaged Young Adults Aged 16-30 with T1DM
by East and North Herts NHS Trust


Anne Currie

Job title:
Senior Diabetes Specialist Nurse
Place of work:
East and North Herts NHS Trust, New QE2 Hospital, Howlands Clinic


Quality In Care Diabetes

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  • 2021 KEY DATES
  • Open for entry:
    Tuesday 20 April 2021
  • Extended Entry Deadline:
    Monday 12 July 2021
  • Judging day:
    Tuesday 7 September 2021
  • Awards ceremony:
    Thursday 14 October 2021