Disengaged young adults with Type 1 diabetes are vulnerable to poor health outcomes and difficult to support with existing models of care. Structured education using psychological techniques has had no demonstrable benefit in this group. Potentially 20% of young adults aged 16-30 could be included in this category. East and North Herts Clinical Commissioning Group (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. The two-year project provided access to a dedicated young adult support worker (YASW) and diabetes specialist nurse (DSN), using text, Skype, email, flexible appointments, and access to newer methods of treatment and monitoring.
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Engagement for this cohort can be low, with many lost in transition from child to adult services.
With 20% of this age group in East and North Herts disengaged from acute and primary care services a new approach to their care was needed. The team took a novel approach, putting the patient at the centre of their care. Patients were invited to the pilot by personalised leaflets hand-delivered to their homes, highlighting the benefits and flexibility available. They could meet the diabetes specialist nurse and/or support worker at a day, time and location of their choice within safe boundaries. The initiative involved a spectrum of NHS staff, such as primary care (GPs and practice nurses), community psychiatric nurses and dietician teams to provide individualised care and stress the importance of regular diabetes health checks and re-engaging with services. Appointments with the DSN were offered at the GP practice or patient’s home. The aim was to offer a ‘one-stop shop’ for patient appointments, annual screening checks and bloods. The DSN and youth worker had designated mobile phones to give patients text and phone support and reminders for appointments.
The project set out to understand the difficulties and challenges young adults with Type 1 diabetes face, such as pressures of work, social situations and acceptance of having a long-term
condition and the impact on their lives. Patients were asked why they had disengaged with their diabetes care and objectives were agreed by the team and patient. These informed the frequency and methods of contact.
The project started in October 2016 with a consultant diabetologist, DSN, YASW 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 individuals’ psychosocial needs. The consultant identified the care process and biomedical improvements, which were agreed and complemented by those the YA wanted to achieve. The invitations, hand delivered to homes, had an ‘opt out’ option. Then a face-to-face, phone call or text introduction took place. The team offered flexible communication, signposting to lifestyle and behavioural support and the use of newer insulins and monitoring systems. The DSN captured baseline information on: reason for inclusion; psychosocial status; biomedical measures; diabetes project team priorities and YA priorities.
The same information was subsequently captured at six and 12 months to assess the impact of the new model, improvements in their diabetes management and overall wellbeing. Staff also completed a DAWN (Diabetes Attitudes Wishes and Needs) questionnaire to assess the patients’ psychological needs, with any ‘at risk’ referred for additional support.
There was a higher proportion of males (69%) to females (31%) in the pilot disengaged cohort, in contrast to a 54% male, 46% female distribution among those engaged with the specialist service.
The service supported young adults in East and North Hertfordshire not just in their diabetes but as individuals transitioning from childhood to adulthood living with a long-term condition. The YASW highlighted wellbeing services, helped complete benefit forms and ensured individuals maintained contact with the project team via text, emails, phone calls and face-to-face meetings. The YASW worked closely with the community dietician and paediatric psychologist, highlighting and/or referring patients for additional support when needed. The team never discharged a patient from the service due to ‘non-response’ and persevered with those who were not initially keen to engage or did not respond to contact attempts. Approximately 50% of patients only accepting help after months of hard work and determination. All of the 148 patients included in the project met more than one of the entry criteria: admitted to hospital within past two years with diabetic ketoacidosis (DKA) or hypoglycaemia; not attended annual eye check; bloods not taken in the last 15 months; micro albuminuria not tested in the last 15 months; not attended two consecutive appointments for diabetes clinics in the last two years; HbA1c greater than 75mmol/mol; would benefit from a more flexible means of diabetes support. The following objectives were achieved: 68% reduction in hospital admissions for DKA or hypoglycaemia; patients with a high HbA1c (> 75mmol/mol) in 2016 to 2018 improved by 32% for those in the pilot, compared to 15% for those not in the pilot; a 57% increase in bloods taken for those who had previously not attended; annual retinal screening attendance improved from 47% to 83%; there was a 90% engagement in the project.
Sustainability and Spread
This pilot scheme would be easy to adopt in other Trusts. Learning was shared at the Diabetes UK conference, Hertfordshire Diabetes Conference, Thames Valley Diabetes Conference and in the British Journal of Diabetes. The project ended in December 2018 but has been extended until November 2019 while discussions are held with the CCG to continue funding on a more permanent basis. Other Type 1 patients who would benefit from this service are transition patients and patients aged 16-30 with an HbA1c over 75mmol/mol.
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