Summary
Newham, east London, has a young population (>40% under 25 years) with significant deprivation and social inequality. Recent migration from Somalia, Eastern Europe and Africa has seen a rising prevalence of type 1 diabetes (T1D). NHS England funded a Diabetes Transformation Programme which has: determined the number of young people with T1D, including those ’lost to follow-up’; identified and addressed gaps in service, particularly mental health needs, education and support for A&E attenders; developed a Youth Worker role; increased patient engagement through a Peer Support programme; redesigned referral pathways across primary and secondary care, and used online consultations for more flexible care.
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Method
A number of workstreams were implemented to complement each other. First, a Clinical Effectiveness Group (CEG) was set up and a clinical dashboard was developed to establish baseline and measure outcomes throughout the project. It was reviewed quarterly. The primary care audit included: primary care engagement championed by the GP diabetes clinical lead; data extracted from all practices to identify key metrics for initial support; development of a practice audit tool to support virtual reviews of primary care records by the DSN and a monthly reporting tool for clinicians to monitor progress and track changes.
A clinical facilitator initially visited practices. The DSN-led, practicebased audit included: virtual case record reviews, a review of T1D coding to ensure accuracy, access to specialist care pathways, including structured education and the provision of detailed feedback to practices with support to identify patients who needed re-engagement. A review of hospital A&E attendance was conducted. Over three months’ admissions, 9 out of 24 patients attending with T1D were between 16 and 25 years; most were not attending specialist clinics. Over 12 months, 18 of 65 patients attending A&E were between 18 and 25 years. The DSN reviewed the records of all patients attending A&E for: previous admissions, discharge for DNA, or underlying mental health problems. Patients were contacted by the DSN post-discharge to jointly agree a follow-up plan and a review by the Consultant Diabetes Psychiatrist was suggested. In the areas of administration and HCP training, a referral pathway was completed, a booking system was produced to avoid duplication of visits, contact details were recorded on the diabetes database (DIAMOND) and T1D was coded on all patients on the Trust Cerner EPR. All new nursing and dietitian staff had DAFNE training. In parallel with these steps, the multidisciplinary team (MDT) was formally established, with a DSN, consultant diabetologist, dietician, mental health colleagues and youth worker. Social media platforms were set up with input from service users and communications teams at Barts Health and Newham CCG. Four awareness events were arranged, with local partners and Diabetes UK, to inform the local community and improve uptake of services.
Results
The results show the impact of the programme up to February 2020. The numbers of T1D aged >12 achieving the 3TT (Cholesterol/HbA1c & BP) rose from 24.6% (April 2018) to 25.1% (April 2019) and then to 31.69% (January 2020). Primary care records showed a reduction in dual coding of 41%. Seven out of 17 patients attending A&E in 2019 were referred to the Consultant Psychiatrist, six were assessed and receiving regular review. Data analysis showed a reduction in admission and LOS in this cohort. A total of 10 patients completed DAFNE. Of these, eight had post-course Hba1c and all reduced HbA1c levels at 6-12 months post-DAFNE. The average HbA1c reduction was 12 mmol/mol (range 3-33 mmol/mol). The average HbA1c pre-DAFNE was 73 mmol/mol and 61 mmol/mol post-DAFNE. Flexible outpatient appointments (telephone, emails, evening clinics and video followup) helped reduce DNA. Video follow-up reduced DNA from 33% to 11%. Use of email reduced numbers of patients ‘lost’ to follow-up. Patients highlighted ease of access, convenience and changing dynamics of clinician-patient interaction. The number of patients initiated on Freestyle Libre during the period was 56 (23 in 2018 and 33 in 2019), with the total number of adults initiated 235. The baseline HbA1c range was 24-142mmol/mol and the median 83 mmol/mol. The average HbA1c now is 78 mmol/mol and the median value is 75 mmol/mol. There was an average 9mmol/l Hba1c reduction among 16 patients having regular dietitian input, representing a 12% average reduction over one year. The closed Facebook group has almost 100 members and rising. Regular video chats are hosted by patients for peer support. The youth worker makes about 10 successful contacts each week, helping patients with CV writing, job applications, disability benefit claims and so on, in addition to supporting transition, arranging clinic appointments and peer networking.
Sustainability and Spread
Children and Young People (CYP) care is a priority for NEL STP and has been identified as an area for transformation. Eight ambitions are to: strengthen CYP engagement with local authority, voluntary agencies and parents/carers, focusing on what matters to them; work to further empower CYP; monitor and collectively challenge activity across the system; retain a focus on the most vulnerable communities and challenge health inequalities; strengthen shared learning across partnership; address the challenges of digital/virtual consultations and continue to invest in, and grow, a workforce that meets the needs of CYP and families across NEL. Newham CCG plans to deliver these ambitions by strengthening partnership working with the local authority, public health, voluntary sector and provider organisations. To this end, young people’s care has been named as one of two priorities by Barts’ Medicine and Children’s Board and has executive-level support. The funding for this programme has been extended until 2023. The findings suggest that a similar model could be rolled out in other demographics and geographic areas, for patients with other chronic diseases. Dissemination has been achieved through a presentation at the RCPCH (Royal College of Paediatric Child Health) Adolescence: Coming of Age conference in September 2019 and a paper published in BMJ Open. The team has led the use of online consultations and supports national rollout.
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