Overview

National Children and Young Adults Diabetes Programme

The Children and Young Adults (CYA) Diabetes Programme brings together the NHS Diabetes programme and the Children and Young People’s Transformation programme. This joint programme of work has been set up to deliver the commitments outlined in the NHS Long Term Plan, including moving to a 0-25 years’ service model.

Alongside regional teams, the programme aims to support systems to improve CYA diabetes treatment and care. To date, the programme has:

• established a National CYA Diabetes Oversight Group to support the development of national policy and strategy to improve the quality of care for CYA living with diabetes, as well as mobilise key stakeholder organisations
• included diabetes as one of the 5 key clinical areas within the children and young people Core20PLUS5 framework, the national NHS England approach to support the reduction of health inequalities
• worked closely with the National Paediatric Diabetes Audit programme on the publication of system level data (and other key outputs), to support benchmarking and improvement
• funded the Transition and Young Adult Pilot programme to build the evidence-base around effective transition and young adult care, as well as number of projects aiming to reduce inequalities in access to diabetes treatment technology. Learning from these are expected to help inform future models of care
• worked with Getting it Right First Time (GIRFT) to establish a Paediatric Diabetes GIRFT programme to support systems with identifying opportunities for improvement

The RightCare programme was engaged and asked to develop this toolkit to support the CYA Diabetes programme in delivering its key objectives.

About this toolkit

The NHS England National Children and Young Adults Diabetes programme worked in partnership with RightCare to develop this toolkit with the aims of bringing together latest guidance and data in one place and provide key practical actions for improvement. The toolkit was developed in collaboration with a wide range of stakeholders including Diabetes UK, clinicians, lived experience partners and their families/carers, NHS integrated care systems (ICS) programme and commissioning leads.

Accurate and timely diagnosis, optimal treatment and care, self-management tools, and support for mental well-being are essential to ensure people with diabetes can live well and avoid complications. This supports improved population health, reduces unnecessary healthcare activity, and has important wider societal and economic benefits.

Who is the toolkit aimed at?

The toolkit is designed to support ICSs to design, plan, and deliver high-quality treatment and care for children and young adults aged 0-25 years with all types of diabetes. 

The toolkit may also be of interest to clinicians, healthcare planners and commissioners in related clinical areas, healthcare public health professionals, those working in local authority or voluntary sector organisations, and those with lived experience of diabetes.

What’s included?

This toolkit includes:

• a general overview of an ICS’s role in delivering high quality care within CYA diabetes services
• details of the key areas of focus and actions to take by ICSs to support in the delivery of CYA diabetes services
• a section on enablers to support commissioning and delivery of high-quality care
• a checklist to help ICSs pinpoint where to focus to improve diabetes treatment and care
• links to key guidance, policy documents, and other useful resources
• appendix 1 provides details of the different diabetes data collections available, and appendix 2 provides links to different data sets and information on levels of granularity for each dataset

Four areas of focus

Diabetes can have a significant impact on the health outcomes and the lives of young people and their families or carers. It is a leading cause of healthcare service usage. Four areas of focus have been identified by the national programme. These have been identified through analysis of national audit data as well as working with children and young people, their families and carers, clinicians, and key stakeholders.

The National Children and Young Adults Diabetes programme four key areas of focus are outlined below:

Introduction

NHS England regional clinical leads

There are NHS England regional CYA diabetes clinical leads within each NHS England region. They provide leadership for improvement in children and young adults diabetes care. The clinical leads are supported by a programme team in each NHS England region. NHS England regional boundaries are colour coded on the map (see figure 1 below).

CYP Diabetes Network

CYP Diabetes Networks (CYPDNs) are collaborative groups whose membership includes local paediatric diabetes clinical teams along with other stakeholders with the aim to share best practice to improve children and young people diabetes care.

Each network has a Clinical Lead and a CYP network manager. Experts working in front-line diabetes services and young people with diabetes are also involved in the networks. CYP Diabetes Network boundaries are shown as black lines on the map, with networks labelled with black and white text (see figure 1).

Figure 1: Children and young people diabetes network map

Outcome data

Prevalence

There were 75,180 people aged 0-25 years with diabetes in England in 2022/23. 79.8% had Type 1 diabetes, 14.9% had Type 2 diabetes and 5.3% had other types of diabetes. Of these almost 44% (32,673) were cared for within Paediatric Diabetes Units. For those with Type 2 diabetes, 29.9% of 16 -18 year-olds and 69.4% of 19-25 year-olds were cared for within primary care (see the NDA annual report).

There has been an increase in the prevalence of diabetes over time. Figure 2 shows from 2016/17 to 2022/23, there has been just over a 16% increase in the number of children and young people with Type 1 diabetes, and just over 54% increase in the number with Type 2 diabetes (National Diabetes Audit annual reports in National Clinical Database Repository (NCDR). This has important implications for workforce planning, as ensuring adequate staffing is key to the provision of high-quality care. To support ICSs in managing the increased prevalence of diabetes, key considerations related to appropriate system leadership and workforce are included within the enablers section of this document.

People with a learning disability are at greater risk of developing diabetes than the general population. A recent review of available research shows 8.5% of people with a learning disability have Type 2 diabetes. For young people with a learning disability (15-24 years), a recent Learning from lives and deaths – people with a learning disability and autistic people (LeDeR) deep dive report indicates that the rate of Type 2 diabetes is approximately 16 times higher than for their peers without a learning disability (Baksh et al, 2023). Furthermore, in children and young people aged 5-24 years with Down’s Syndrome, the incidence rate of diabetes was also 4 times more common (Aslam et al, 2022).

Figure 2: Number of diabetes registrations (0-25 years) and percentage change from 2016/17 by year and diabetes type

Source: National Diabetes Audit annual reports for 2016/17 to 2022/23 (the most recently available) in NCDR (record level). Note about data: Registrations from the NDA audit reports include data from both GP practices and specialist services. The numbers here will not include patients who have indicated they don’t want their data shared with NHS Digital, a small number of non-submitting practices, and some incomplete/poor coding.

HbA1c

HbA1c is a marker of raised blood glucose. It is expressed in ‘mmol/mol’. A HbA1c target level of 48 mmol/mol or lower is defined as the ‘treatment target’ for children and young people by NICE. Reaching this will minimise the risk of developing long‑term complications related to diabetes.

Multiple drivers, including the introduction of the Best Practice Tariff in 2010/11, has seen the median HbA1c in children and young people with diabetes (Type 1 and 2) fall steadily nationally since 2009/10.

Despite this, the median HbA1c is still higher than the treatment target. Variation exists between ICSs and paediatric diabetes units, with the median HbA1c in children and young people with Type 1 diabetes within individual PDUs ranging from 53.0 mmol/mol to 70.3 mmol/mol (see figures 3 and 4 below).

ICSs can access relevant data from the National Paediatric Diabetes Audit  (NPDA). Key considerations for ICSs in reviewing data on HbA1c and care process completion is included within the enablers section on data.

Figure 3: Median HbA1c for children and young people with Type 1 diabetes in England 2022/23 by ICS (NPDA report)

Source: National Paediatric Diabetes Audit – data files | RCPCH

Figure 4: Median HbA1c for children and young people with all types of diabetes in England, 2009/10 to 2022/23 (NPDA report)

NICE target: NG18, Recommendation 1.2 Type 1 Diabetes

Source: NPDA – data files | RCPCH

Care processes

NICE recommends that people with diabetes receive key health checks (or ‘care processes’) completed annually. Higher completion of these health checks is associated with better glycaemic management. Undertaking these annual health checks is associated with reduced premature mortality, emergency admissions, and risks of developing diabetes complications and associated care costs (McKay et al, 2021a; Gunn et al, 2021a; Gunn et al, 2021b; McKay et al, 2021).

For children and young people with Type 1 diabetes, variation in completion rates exists between each of the individual care processes and within specific geographies, representing an opportunity for improvement. Latest figures (NPDA, 2022/23) show only 63.4% of children and young people aged 12 and over with Type 1 diabetes received all 6 health checks and the variation between ICSs was from 33.3% to 84.6%. ICSs can access relevant data from the NPDA (see figure 5).

Early-onset Type 2 diabetes is a more aggressive condition than older-onset Type 2 diabetes. Despite this, completion of the key annual health checks (‘care processes’) remains low compared to completion rates in adults. Only 36.0% of those with Type 2 diabetes aged 12 and over received all six care processes. Latest results from the NDA 2021-22 young people with Type 2 diabetes report suggest children and young people with Type 2 diabetes are less likely to have completion of all care processes compared to adults (aged 40 plus years). The latest detailed NDA data also shows that those with a learning disability (all ages) were less likely to receive all key care processes.

Figure 5: Percentage of children and young people aged 12+ with Type 1 diabetes* who received all 6 key health checks in 2022/23 by ICS

*6 key health checks for Type 1 diabetes in children and young people aged 12 and above are: HbA1c, BMI, blood pressure, thyroid test, albuminuria screening and foot checks.

Figure 6: Percentage of children and young people aged 12+ with Type 2 diabetes who received all 6 key health checks in 2022/23, by ICS

*6 key health checks for Type 2 diabetes in children and young people aged 12-18 are: HbA1c, BMI, blood pressure, cholesterol, albuminuria screening and foot checks

Source: National Paediatric Diabetes Audit – data files | RCPCH

Relevant to area of Focus 2: reduce variation in treatment, care, and outcomes across health systems

Diabetic ketoacidosis

Diabetic ketoacidosis (DKA) is a serious acute complication of diabetes that requires emergency in-patient management. It can be life threatening and may need to be managed in an intensive care setting.

Some people with undiagnosed diabetes may not be aware they have diabetes until they reach the stage of DKA for the first time (‘DKA at diagnosis’). Analysis from the National Paediatric Diabetes Audit admissions and complications reports, 2011-2020 show a steady increase in DKA at diagnosis across the audit years, with the rate increasing from 29.3% in 2015/16 to 38.5% in 2019/20. Supporting awareness amongst clinicians and the public of early signs and symptoms of diabetes is important to reduce rates of DKA at diagnosis.

People with a known diagnosis of diabetes can also experience DKA. DKA in this situation is often preventable and therefore may reflect a need for services to better engage, educate and support the individual with their diabetes care and management. Analysis from the NPDA showed that lower rates of admission with DKA, not at diagnosis, were associated with lower HbA1c and use of real time continuous glucose monitoring (rtCGM) in children and young people with Type 1 diabetes.

Variation in emergency admissions for DKA exists between ICSs and paediatric diabetes units for both DKA at diagnosis and DKA in those with a known diagnosis of diabetes (see figures 7 and 8).

Key considerations for systems to support reductions in DKA admissions are included within Area of Focus 2.

ICSs can access relevant local data on DKA admissions from the Children and Young People’s Transformation Programme dashboard, available on the NHS England Applications platform.

Figure 7: DKA emergency admissions for children and young people with a new diagnosis of diabetes, 2022/23

Source: All graphs National Paediatric Diabetes Audit (NPDA)

Figure 8: DKA emergency admissions for children and young people with an existing diagnosis of diabetes, 2022/23

Transition and young adult care

Diabetes outcomes are seen to particularly decline at the age when children and young adults with diabetes are transitioning to adult care. This is where the highest rates of diabetic ketoacidosis (DKA) admissions and repeat DKA admissions are observed. In addition, DKA emergency admissions with an existing diagnosis of diabetes, has a clear social gradient which gets steeper with age, as shown on the graphs (see figures 9 and 10).

A GIRFT report into diabetes care found that transition and young adult services are often unavailable or under-resourced. This may result in young people becoming disengaged, leading to avoidable harms. The GIRFT report found that if clear transition pathways were implemented there would be a reduction in DKA admissions in 18–25-year-olds.

Analysis of data on young people at transition age shows that median HbA1c, and the proportion of people achieving HbA1c treatment targets, deteriorates steadily between the ages of 15 and 20 years old. In addition, completion of most annual NICE recommended care processes decreases between the ages of 17 and 20 years and then plateaus.

Key considerations for systems to support improving care for those transitioning from paediatric to adult care are included within area of focus 3.

Figure 9: Diabetic ketoacidosis emergency admissions in patients with a new diagnosis of diabetes (2022/23)

Figure 10: Diabetic ketoacidosis emergency admissions in patients with an existing diagnosis of diabetes (2022/23)

Source: CYP transformation DKA dashboard

Relevant to Area of focus 3: improve treatment and care for people transitioning from paediatric to adult services.

Inequalities

HbA1c levels have been higher in Black children compared to White children since 2005/06, and data between 2013/14 and 2022/23 shows persistently higher HbA1c levels in those living in more socio-economically deprived areas. For example, NPDA data in 2021/22 showed that median HbA1c for black children and young people was 70.7 mmol/mol, compared to 63.4mmol/mol in white children and young people. For children and young people in the most deprived 20%, HbA1c was 67.6mmol/mol compared to 60.1mmol/mol for those in the least deprived 20% (see figure 11).

Figure 11: Inequalities: Mean HbA1c for children and young people Type 1 diabetes in England and Wales

Source: NPDA Annual report 2021-22, Care processes and outcomes, Appendix 1 – full audit analysis

A key factor in improving glycaemic management, and reducing DKA emergency admissions, is diabetes treatment technology such as continuous glucose monitoring devices and insulin pumps. These are recognised by NICE to be cost- effective (see the resource impact report for CGM), help achieve target HbA1c levels, reduce the risk of long-term complications and associated care-costs, and improve the quality of life of those living with diabetes. Recent data shows that children and young people who were using a hybrid closed-loop system had a significantly lower mean HbA1c compared to those using insulin injections (see figure 12).

Figure 12: Mean HbA1c for children and young people with type 1 diabetes using different combinations of treatment regimen and glucose monitoring 2022/23

Source: NPDA Annual report 2021/22

Despite an overall increase in uptake of treatment technology, national audit data shows clear health inequalities by ethnicity and socioeconomic deprivation. Usage is lowest in children and young people from socially deprived areas and those from ethnic minority backgrounds. For example, in 2022/23, only 38.8% of children and young people in the most deprived quintile used insulin pumps, compared to 50.7% of children and young people in the least deprived quintile. Only 36.2% of Black children were on continuous glucose monitors, compared to 50.2% of White children. ICSs can access relevant data from the NPDA. Key considerations for ICSs to support more equitable access to treatment technology is in area of focus 1.

Figure 13: Percentage of children and young people with type 1 diabetes using CGM by ethnic group, 2019/20 to 2022/23

Ethnic Group

Figure 14: Percentage of children and young people with type 1 diabetes using CGM by deprivation quintile, 2019/20 to 2022/23

Deprivation quintile

Source: NPDA Annual report 2022-23, Report on care processes and outcomes

Relevant to Area of focus 1: address diabetes health inequalities in children and young adults

Type 2 inequalities

Early-onset Type 2 diabetes (defined as diagnosis under the age of 40 years-old) is an often preventable and more aggressive condition when compared to older-onset Type 2 diabetes. It is associated with more rapid disease progression, early development of complications and a significant reduction in life expectancy (Sattar et al, 2019; Kaptoge et al, 2023).

Whilst the majority of people with early-onset Type 2 diabetes are White, there are higher proportions from ethnic minorities in the young onset cohort compared with the older onset cohort. 93.5% children and young people with Type 2 diabetes were classified as overweight or obese based on their BMI, compared with 41.7% of children and young people with Type 1 diabetes (NPDA 2022/23). For young people aged 15-24 years with a learning disability, a recent LeDeR deep dive report indicates the rate of Type 2 diabetes is approximately 16 times higher than for their peers without a learning disability (Baksh et al, 2023).

Despite the more rapid progression of diabetes complications in those with early-onset Type 2 diabetes, the completion of NICE recommended care processes remains low compared to completion rates in older adults. The latest Young People with Type 2 Diabetes report showed that only 26.7% of children and young people with Type 2 diabetes aged 0-25 received all care processes, compared with 51.6% of those aged 60-79.

In addition, when co-morbidities and complications are identified, treatment rates are low. For example, 42.3% of children and young people with Type 2 diabetes had high blood pressure, however only 5.9% were offered anti-hypertensive therapy. A quarter of children and young people with type 2 diabetes had albuminuria, an early marker of kidney disease, however only 3.4% received treatment (NPDA spotlight).

Relevant to area of focus 4: improve treatment and care for children and young adults with Type 2 diabetes.

Pregnancy and diabetes

Around 1 in 7 women who give birth in the UK each year either have diabetes before they get pregnant, or develop gestational diabetes during their pregnancy (IDF Atlas 2021). While most will go on to have healthy babies, diabetes in pregnancy is associated with pre-term delivery, birth weight extremes, increased rates of congenital anomaly, stillbirth, and neonatal death (Murphy et al (2021)).

Women with pre-existing diabetes have considerably more adverse pregnancy outcomes than those women who do not have diabetes in pregnancy. This is related to a lack of support to prepare for pregnancy, namely in achieving the HbA1c treatment target of 48 mmol/mol or lower, low rates of prescribing folic acid during pregnancy which helps reduce the risk of birth defects such as spina bifida and missed opportunities to access safe, effective contraception for women who may be sexually active but not planning a pregnancy, which is particularly important given 45% of pregnancies are unplanned.

Latest National Diabetes in Pregnancy (NPID) Audit data show that only 36% of women with early-onset type 2 diabetes achieved the NICE recommended early pregnancy target HbA1c of <48mmol/mol and experienced increasing rates of serious adverse pregnancy outcomes compared to previous years (2022 6.6%, 2021 4.9%, 2020 and previous years 5.5%) (see figure 14).

Figure 15: Maternity and birth outcomes: pregnancies in diabetes compared to England overall, 2021 and 2022

Notes about the data: The latest NPID audit data covers the time period from 01/01/2021 to 31/12/2022.

The England figures for neonatal deaths and still births are taken from the Child and infant mortality statistics in England and Wales, 2021. Congenital anomaly data is taken from the National Congenital Anomaly and Rare Disease Registration Service (NCARDRS) Congenital Anomaly Official Statistics Report, 2020. Preterm delivery is taken from the OHID child and maternal health profile, 2019-21.

Source: NPID Audit 2021 and 2022.

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Enablers

Funding

The planning and funding of diabetes treatment and care for children and young adults is the responsibility of ICBs. NHS England is responsible for determining allocations of financial resources to ICBs. Total annual budgets given to ICBs cover the majority of NHS spending, including the costs of delivering diabetes care. In addition to this core allocation, several financial incentives exist.

Paediatric best practice tariff

Best practice tariffs (BPTs) were first introduced in 2010/11. They are designed to incentivise high quality, cost-effective care with the overall aim of reducing unwarranted variation in clinical quality and to spread best practice.

BPTs cover services that have high volumes of activity, significant variation in practice, or significant impact on patient outcomes. BPTs support areas of care where there is a strong evidence base and clinical consensus on best practice.

The paediatric diabetes BPT is an annual payment per patient for a year of care. It aims to support clinical services to deliver consistent, high-quality care to children and young people with diabetes, aged 0-19 years.

The level of funding that hospital trusts can achieve through the BPT reflects the estimated funding that services will require to meet the BPT specification, with a particular focus on the cost of the workforce and training.

To qualify for the BPT payment, providers must demonstrate that they meet all the specified criteria, found in the BPT guidance documents.

Content within this toolkit is aligned to the BPT criteria. The implementation of the BPT criteria is expected to reduce overall care-costs through incentivising consistent quality diabetes care.

BPT covers:

• outpatient care from the date of discharge from hospital after the initial diagnosis until the patient is transferred to adult services up to the age of 19
• inpatient care for any admissions related primarily to diabetes, after the initial diagnosis, up to the age of 19

BPT does not cover:

• cost of insulin pumps and associated consumables
• cost of CGM systems when used continuously for therapeutic purposes
• routine prescriptions for insulin, blood glucose testing (including flash glucose scanning/FreeStyle Libre) and ketone monitoring issued in primary care

BPT payment scheme 2023-25

The way the Paediatric diabetes best practice tariff works changed in 2023/24 (see figure 15). The following steps set out how the BPT should now work locally, as set out in national guidance (NHS England » 2023-25 NHS Payment Scheme annex C).

1. ICB and hospital trust agree a fixed payment for the year to fund the delivery of paediatric diabetes care. This fixed element should be based on an assessment of expected paediatric diabetes patient numbers and whether the provider is likely to deliver best practice criteria, as set out nationally.
2. Finance teams within hospital trusts confirm to paediatric diabetes service leads that the paediatric diabetes BPT payment has been received by the trust. The department receives the funding to support the availability of the necessary workforce and training to achieve the nationally set criteria.
3. ICB and hospital trusts review achievement of the BPT criteria at the end of the financial year based on evidence supplied by the trust. Where best practice was not achieved, this should be discussed and a plan put in place, or funding adjustments made, in the next financial year/planning process. No in-year payment adjustments should be made.

Figure 16: Best practice tariff flow chart diagram

*For example, if the ICB does not intend to pass on the full best practice tariff (BPT) quantum for the projected number patients.  

System leadership

High quality diabetes treatment and care is clinically effective, safe and provides a positive patient experience, with benefits including improved health outcomes and reduced healthcare activity and costs in the long-term.  The role of the ICS is to provide oversight and support to providers, creating the right conditions for high quality care, using all the levers at its disposal. This includes effective planning, leadership, partnership working, and quality governance.

Planning and governance

Children and young adults’ diabetes should be reflected in system strategic plans. This should span the full pathway – from prevention of Type 2 diabetes to improving diagnosis and treatment for children and young adults living with all types of diabetes in primary, community, and secondary care services.

Commissioning, service planning and improvement initiatives can be enabled by a population health management approach – using local prevalence and outcomes data, which takes appropriate account of health inequalities (see area of focus 1 and area of focus 4).

Designated clinical and managerial leads at ICS level

Having designated clinical and managerial leadership in the ICS will enable effective engagement with services and support improved communication, closer working and sharing of good practice between paediatric, young adult and adult teams, as well as between primary, community and secondary care. Having specific individuals whose role it is to regularly review data across the pathway of care to identify improvement opportunities will support the delivery of high-quality care.

Key considerations

Key considerations for system leadership include to:

• engage with lived experience partners and their families/carers
• review data regularly (see appendix 2) and use it to inform review meetings, service planning and commissioning, seeking context from service leads
• develop local networks and join regional networks
• support services to Make every contact count (MECC)
• ICS to participate in the forthcoming CYA Diabetes GIRFT programme
• collaborate with ICP partners on cross cutting issues that require a partnership approach such as lifestyle and healthy weight support for children and families, contraception and sexual health services, youth worker support, the provision of individual healthcare plans and family support
• report to ICS governance groups on key quality metrics and improvement initiatives
• apply the paediatric diabetes best practice tariff and use other financial and contractual levers (see enablers section on funding)
• log quality risks in ICS quality risk registers and present risks to System Quality Groups where appropriate
• consider Diabetes UK leadership programme

Data

National diabetes data for children and young adults comes from 2 main sources – the National paediatric diabetes audit and the National diabetes audit.

National paediatric diabetes audit (NPDA)

All paediatric diabetes units (PDUs) submit data about people with all forms of diabetes under the care of a consultant paediatrician up to the age of 24, although most paediatric services do not continue to care for people beyond 18 years of age. This includes data on HbA1c levels, health checks, patient education, psychological well-being, and assessment of diabetes related complications including acute hospital admissions. The NPDA publishes an annual annual report and has an online tool to help make the data more interactive and accessible at PDU, network and at former CCG level. 

National diabetes audit (NDA)

The NDA integrates data from both primary and secondary care settings. The NDA Core Audit annual and quarterly dashboards include data on care process delivery, treatment target attainment and structured education. The data is available at ICS, PCN and GP practice level. The Adolescent and young adults audit includes data for those age 15-25 with Type 1 diabetes. The data is available at region and ICS level, with the dashboard refreshed annually. The Young type 2 diabetes audit, includes data for those up to age 40 with Type 2 diabetes. Data is available at region, ICS and PCN level and can be accessed via the Young people with type 2 diabetes dashboard and will be updated annually.

Further information on these datasets and other national reports is available at appendix 1. Details of all available metrics and where to find data is available at appendix 2.

Some ICSs already collate local data through business intelligence functions and have ICS level dashboards which may draw from national and/or local data. This will continue to advance as new initiatives such as the Federated data platform come online. Systems should regularly consider refreshing data sources and data presentation.

Key considerations

Key considerations for data include to:

• read national audit and quality improvement reports to understand key themes and trends (see appendix 1)
• review key diabetes metrics and consider how the services in your ICS compare to regional and national averages (see appendix 2)
• look for disparities in care and outcomes that may lead to or reflect health inequalities in socio-economically deprived groups with protected characteristics
• check that local services are regularly uploading data into the NPDA data capture system and the NDA specialist services data collection, with consideration given to the ability of teams to collect accurate data
• encourage local services to regularly review audit and other service level data and key diabetes metrics to inform plans to address unwarranted variation
• ask services to inform the ICS if they receive an outlier status letter from the NPDA and work with them to understand how any quality issues will be rectified
• support the inclusion of diabetes metrics (national and / or local data) in ICS population health dashboards

Workforce

The prevalence of Type 1 and Type 2 diabetes in children and young people is increasing. The NPDA annual report recommends that multidisciplinary diabetes team staffing increase proportionately to reflect this. As part of the RCPCH National Diabetes Quality Programme (NDQP), 132 peer reviews were conducted across participating services between 2018 to early 2023. From these peer reviews the most common recommendations were for increases in MDT staffing including dietetic, medical, psychological, paediatric diabetes specialist nurse, and administrative provision. The NDQP also looked at serious concerns raised within services and found that services that had MDT clinic appointments and MDT training had smaller numbers of serious concerns identified. See Impact report 2023 from the National Diabetes Quality programme.

The Best practice tariff (BPT) for paediatric diabetes stipulates that patients should be offered a minimum of 4 clinic appointments a year, with a recommendation of 30 minutes per appointment, with a MDT. Sufficient staffing is required to deliver this and to support the provision of high-quality care. As well as this, the BPT criteria includes the requirement that patients must be offered at least one additional appointment per year with a paediatric dietitian with training in diabetes.

The NHS Long Term Workforce Plan includes reforms around working and training differently, enabling innovative ways of working with multidisciplinary teams so staff can spend more time with patients.

Key considerations

Key considerations for workforce include to:

• align paediatric diabetes Best Practice Tariff payments to the latest data on patient numbers
• work with service leads to review patient numbers and staffing ratios regularly and identify any gaps in multi- disciplinary teams
• ensure there is appropriate administrative and IT support for data recording and audit participation
• review the local workforce to ensure there is an appropriate level of staffing to support delivery of high-quality care to children and young people with diabetes
• review the capability and competencies of MDTs to ensure that professionals are being supported to develop key skills
• encourage services to support staff to attend regular training on the use of new diabetes-related technologies and treatments (such as insulin pumps, CGM and hybrid closed loop systems)
• support services to participate in regional/ national networks for peer support and quality improvement (refer to the system leadership enabler section)

Areas of focus

Area of focus 1: addressing diabetes health inequalities

The Health and Care Act 2022 identifies a range of ICB obligations in relation to health inequalities. This includes a duty on an ICB that it: “must, in the exercise of its functions, have regard to the need to (a) reduce inequalities between persons with respect to their ability to access health services, and (b) reduce inequalities between patients with respect to the outcomes achieved for them by the provision of health services”.

NHS England has a legal duty to annually assess the performance of each ICB in each financial year. The NHS Oversight Framework provides the basis for this assessment. Reducing health inequalities is part of this, aligning to the priorities set out in operational planning guidance and the legislative changes.

NHS England has developed the ‘Core20PLUS5’ approach to inform action to reduce healthcare inequalities at both national and system level. The approach defines a target population – the ‘20% most deprived (CORE20)’ – and identifies ‘5’ focus clinical areas (PLUS5) requiring accelerated improvement. Within CORE20PLUS5 for Children and Young People, diabetes has been identified as one of the 5 key clinical areas.

The 2 key objectives for the Core20PLUS5 approach in diabetes are to:

1. Increase access to real time continuous glucose monitors and insulin pumps across the most deprived quintiles and from minority ethnicity backgrounds.
2. Increase the proportion of those with Type 2 diabetes receiving all recommended care checks.

For more information see the CORE20PLUS5 infographic for Children and Young People. 

Area of focus 2: reduce variation in treatment, care, and outcomes across systems

Area of focus 3: improve treatment and care for those transitioning from paediatric to adult services

Area of focus 4: improve treatment and care for children and young adults with Type 2 diabetes

Appendices

Appendix 1: data collections

National Diabetes Audit (NDA)

The NDA is one of the largest clinical audits in the world and integrates data from both primary and secondary sources. It is a mandatory NHS collection, funded by NHS England and NHS Wales. General practices and specialist services have their data extracted via the General Practice Extraction Service (GPES), whilst secondary care and structured education providers submit their data manually via the Clinical Audit Platform.

The NDA provides a comprehensive view of diabetes care in England and Wales. It measures the effectiveness of diabetes healthcare against NICE Clinical Guidelines (NG17) and NICE Quality Standards (QS208 and QS209) with the aim to answering the following questions:

1. Is everyone with diabetes diagnosed and recorded on a practice diabetes register?
2. What percentage of people registered with diabetes received the 9 National Institute of Health and Care Excellence (NICE) key processes of diabetes care?
3. What percentage of people registered with diabetes achieved NICE defined treatment targets for glucose management, blood pressure and blood cholesterol?
4. What percentage of people registered with diabetes are offered and attend a structured education course?
5. For people with registered diabetes what are the rates of acute and long-term complications (disease outcomes)?

The audit collects data on all ages from primary care, but does not collect data from paediatric specialist units, which is delivered separately via the National Paediatric Diabetes Audit.

Commissioners can use the interactive National Diabetes Audit dashboards to drill down into the data relating to the provision of care and services for people with diabetes in their area.

The key audit products for children and young adults’ diabetes care are:

• the NDA Core Audit dashboards – Annual and quarterly dashboards with data on care process delivery, treatment target attainment and structured education. The data is available at ICS, PCN and GP practice level
• the Adolescent and Young Adults Audit (AYA), includes data for those age 15-25 with Type 1 diabetes and can help identify any areas of improvement for the provision of care and services during transition from paediatric to adult based clinical The data is available at region and ICS level and the dashboard is refreshed annually
• the Young Type 2 Diabetes Audit, includes data for those up to age 40 with Type 2 Data is available at region, ICS and PCN level and the dashboard will be updated annually

National Paediatric Diabetes Audit (NPDA)

The purpose of the NPDA, is to provide information that leads to an improved quality of care for those children and young people living with diabetes.

The National Paediatric Diabetes Audit is funded by NHS England and NHS Wales, commissioned by the Healthcare Quality Improvement Partnership (HQIP), and managed by the Royal College of Paediatrics and Child Health. It started from 2003 and is currently commissioned until 2025.

Paediatric Diabetes Units (PDUs) across England and Wales submit data about the care received by children and young people using their services. The effectiveness of that care is measured against NICE guidelines and includes HbA1c targets, health checks, patient education, psychological well-being, and assessment of diabetes related complications including acute hospital admissions, all of which are vital to monitoring and improving the long-term health and well-being of children and young people with diabetes.

The audit’s aims are to:

• monitor the incidence and prevalence of diabetes amongst children and young people receiving care from a PDU in England and Wales.
• establish whether recommended health checks are being received by children and young people with diabetes.
• enable benchmarking of performance against standards of care specified by the National Institute for Health and Care Excellence (NICE) guidance at PDU, regional, CCG (England), Health Board (Wales) and national
• determine the prevalence and incidence of diabetes-related complications amongst children and young people with diabetes.

The latest audit report (2022/23) included all 171 PDUs in England and Wales and captured information on 31,615 children and young people with all forms of diabetes up to the age of 24 years under the care of a consultant paediatrician.        

The NPDA has an online reporting tool to help make the NPDA data more interactive and accessible at PDU, regional network, ICS, and previous clinical commissioning group (CCG) level. NPDA Online (rcpch.ac.uk).

The NPDA also collects Patient/Parent Reported Experience Measures (PREMs) data from paediatric diabetes units and produces local and national reports.

Quality and Outcomes Framework (QOF)

Information on system performance against the QOF indicators can be found at QOF 2021-22 | NHS Digital.

Quality Improvement Programmes

A quality programme for children and young people’s diabetes ran between 2018- 2023 and was delivered by RCPCH at PDU level. The impact report from this programme provides a source of data and learning. National Diabetes Quality Programme – Impact report 2023 | RCPCH

The NDA QI collaborative is a National programme provided as part of the National Diabetes Audit contract. Relevant reports with key learning are listed below:

• Transition QIC report
• Type 1 and Type 2 diabetes CIC

Getting It Right First Time (GIRFT)

GIRFT is a national programme designed to improve medical care within the NHS by reducing unwarranted variation.

The adult GIRFT diabetes workstream published a national report in 2020, that focused on improving services for people with type 1 diabetes and improving inpatient care and foot care for everyone living with diabetes.

The national report has recommendations which are relevant to children and young people around transition from paediatric to adult services, specialist support for young adults on insulin pumps and around psychological support needs to manage their condition.

National CYA GIRFT programme

To provide a national mechanism for identifying and supporting systems and units to address variation, a dedicated CYA Diabetes GIRFT programme is being established.

The programme will use a core set of metrics to be developed at unit, system, and region level, to inform the GIRFT visits and to build an understanding of how variation presents between PDUs and ICSs. It will undertake a series of system level ‘gateway reviews’ to explore the causes of unwarranted variation and identify opportunities for addressing them.

The programme will cover care and outcomes for those with diabetes up to the age of 25 and run for 2 years initially. The focused visits will be at system level supporting the engagement of both paediatric and adult services, as well as supporting involvement of commissioners and key local decision makers to best influence change and improvement. This will also allow for assessment of transition care, and variation in outcomes associated with the move from paediatric to adult care.

Visits will be undertaken at system level (ICS) initially, with the opportunity for additional follow up visits at PDU level in subsequent years where the need is identified. It is expected that engagement with this programme will serve as a mechanism for Trusts to evidence their compliance with the BPT. Data and analysis developed as part of this programme will be embedded in the Model Health System database as a mechanism for units and systems to further assess and benchmark their position nationally in relation to key metrics and measures.

Appendix 2: data resources

The data for the key children and young adult diabetes metrics comes from different sources and reflects the different setting in which care is delivered. It includes routine primary care data, national survey d

Prevalence data

How many children and young adults are living with diabetes (type 1 or type 2) within your area?

How many children and young people are there with Type 1 diabetes by age band, sex, ethnicity, and deprivation?

Care process completion

How does your rate of care process completion (for all and individual health checks), compare to other ICSs within the region and nationally?

HbA1c (mean and achievement of NICE treatment target)

How does the mean HbA1c of children and young adults with diabetes your system compared to other ICSs within the region and nationally?

How does the proportion achieving the HbA1c Treatment Target (58mmol/mol) in your system compared to other ICSs within the region and nationally?

Usage of diabetes treatment technology

Is usage of diabetes technology equitable between the most and least deprived groups and by those from ethnic minorities in your area?

DKA Admissions

What are the rates of DKA at diagnosis? And DKA in established patients?

Rates of diabetes complications

What proportion of children and young adults are achieving the NICE recommended treatment targets in your area?

Patient and family experience

What do children and young people and their families think of local paediatric diabetes services?

Pregnancy preparedness

How well prepared for pregnancy are women with diabetes living in your region?

How does the quality of antenatal care, and pregnancy outcomes compare between local provider trusts and your region?

Excess weight and obesity

What percentage of children in your area are overweight or obese?

Appendix 3: QOF indicators relevant to young adult diabetes care

Appendix 4: care processes

Key health checks

Health checks (care processes) for children and young people with diabetes are essential for early recognition of complications. There are different health checks depending on which type of diabetes has been diagnosed and dependent on age (see figure 17).

The graph below (see figure 18) shows the percentage of children and young people who completed a full year of care recorded as receiving individual health checks between 2004/5 and 2021/22. This data is from the NPDA 2021/22 care processes and outcomes annual report.

Comparisons of completion rates prior to 2015/16 should be reviewed with caution as they included both Type 1 and Type 2 diabetes.

However, given that most children and young people reported to the audit have Type 1 diabetes, the improvements in completion rates are likely to reflect real improvements in health check completion and/or completeness of data submitted to the NPDA.

The below graph (see figure 18) shows that the decline in health check completion rates recorded in the 2020/21 audit has largely reversed, although each rate remains below its pre-pandemic peak.

Figure 17: Recommended care processes for children and young people with diabetes

Figure 18: Percentage of children and young people who completed a full year of care recorded as receiving individual health checks between 2004/5 and 2021/22.

Appendix 5: different types of technology

Continuous glucose monitors

A continuous glucose monitor, or CGM, is a small wearable device that measures glucose levels in real-time. It uses a sensor to continuously send information to a handset or compatible mobile phone so that patients can see what their current levels are and whether they’re heading up or down. Patients can also set alarms to signal if their glucose levels are going too high or too low and see their glucose trends over time.

Patients attach a CGM directly onto their skin, usually on the upper arm or stomach. A short wire from a sensor goes under the skin and senses how much glucose there is in the fluid between the blood vessels and cells (interstitial fluid). A transmitter then beams this information to a receiver, which might be a handset, a compatible mobile phone or compatible insulin pump.

With real time CGM patients can see glucose readings at any time. Some CGMs are intermittently scanned, commonly called ‘flash’ glucose monitors, and allow patients to scan a sensor attached to their body to get their latest glucose readings.

Sensors are changed every 7 – 14 days depending on the brand. Patients should always have a blood glucose meter and test strips as a back-up.

Insulin pumps

Insulin pumps are electronic devices that release pre-programmed amounts of rapid acting insulin regularly through the day and night. This acts like basal or background insulin. Patient can change the delivery of insulin according to any activity they do, the carbohydrate or fat content of food consumed or to bring down high glucose levels. 

Patients wear the pump all the time.

There are 2 types of insulin pump:

1. A ‘tethered’ pump uses a fine tube to connect the pump to the cannula; the pump is worn in a pocket or clipped to a belt.
2. A patch pump or micro pump has no tubing or a very short tube, and the pump is usually stuck on to the skin. Patients will still need to carry pen and cartridge insulin as a back-up, so they can do insulin injections if needed.  

Hybrid closed loop systems

A hybrid closed loop system (HCL) is where a continuous glucose monitor (rtCGM) and an insulin pump ‘talk to each other’ through a computer program (algorithm). Some of a patient’s insulin doses are adjusted automatically in response to their glucose levels, as glucose is monitored all the time by the rtCGM. Patients’ will still need to tell the system when they eat.

HCL systems can help prevent or minimise hyper and hypo situations. The algorithm will stop insulin delivery if it thinks a patient is going below target. This is usually set between 5.5 and 6.1mmol/l. Patient will still need to carry pen and cartridge insulin as a back-up, so they can do insulin injections if needed.  HCL systems are only recommended if they are procured at a cost-effective price agreed by the companies and NHS England.

Appendix 6: newly diagnosed patients: first year of care pathway

At diagnosis. Patient centred sessions

1. Explanation of diabetes and treatment*
2. Practical skills*
3. Food, CHO awareness and diabetes*
4. Glucose targets, Insulin, Food and physical activity*
5. Hypo management*
6. Promote positive and consistent messages regarding diet and body image
7. Diabetes at home and school
8. Diabetes during illness/DKA
9. Preparing for home (consider advance technology as per national guidance)

 * = Essential prior to discharge/at diagnosis Diabetes team to map the above on current education package and knowledge assessment check list using verbal, written and video resources. Family to be provided with emergency contacts (out of hours etc)

Within the first week (Diabetes team)

• family provided with any relevant diabetes resources
• ensure expectations are given to recording blood glucose, insulin and food data (diary or electronic)
• check biographical details
• check family email address
• set up download account, link to any relevant apps and bolus advisor apps
• set up to relevant education apps (e.g Digibete, DeApp)
• signpost to emotional resources (JDRF, MindMate, DUK, Digibete)
• give details regarding next appointments
• allocation of named nurse or key worker
• psychology contact – phone, leaflet, meet and greet if possible
• school care plan completion, training of school staff and contact made with school – ensure completion before returning to education (as per local guidance)
• education on glucagon and training (if not completed at diagnosis)

Within first 2-6 weeks

Follow the core clinic components plus:

• MDT clinic review
• dietetic review
• meet diabetes team psychologist
• level 3 CHO Counting (if not already achieved)
• Set up to relevant education apps (e.g Digibete, DeApp)
• review of screening blood results taken at diagnosis
• explanation of routine diabetes care/ annual review/ retinal screening/ HbA1c/ clinic targets/ time in range/ understanding of DKA/ discussion around complications of diabetes
• information on DLA
• pre-emptive discussion around remission phase and changing insulin requirements

At 3 months: OPA (HbA1c)

Follow the core clinic components plus:

• how to assess and optimise time in range (if applicable)
• advanced education of diabetes management
• discuss HbA1c targets
• discuss the impact of diabetes on the relationship with food and activity

At 6 and 9 months: OPA (HbA1C)

Follow the core clinic components plus:

• explore data review and support/ encourage changes based on self-analysis (if possible)
• patient centred/led discussion
• introduce Goals of Diabetes (or equivalent) and annual review
• review education, knowledge and understanding
• pre-emptive discussion around remission phase and changing insulin requirements

At 12 months: OPA (HbA1C)

Follow the core clinic components plus:

• explore data review and support
• encourage CYP/ families to identify 2 relevant educational refreshers e..g CHO counting, hypo management
• discuss and complete annual care processes – follow up with a discussion around complications of diabetes
• review education on sick day rules and ketone testing
• dietetic review
• promote positive and consistent messages

Underpinning the newly diagnosed first year of care pathway are the ongoing care elements shown below

On-going support between MDT clinics

Examples include:

• telephone contacts by named nurse and dietitian
• joint CDSN/Dietitian review
• electronic or written data review – blood glucose, insulin and food data
• introduction to data review and support – Set expectations of regular self-review of downloading
• follow up with school (as required)
• school menus – consideration of CHO counting at school (as per local guidelines)
• follow up with healthy eating, CHO counting, fat and protein and glycaemic index
• exercise and physical activity
• check emotional wellbeing
• support for travel/staying away from home
• information on relevant peer support groups

Core clinic components

1. Celebrate successful behaviours!
2. MDT clinic review
3. Data review including HbA1c targets, time in range
4. Discuss data review and support accordingly (including dietetic review)
5. Check ability to share data remotely
6. Consider advanced technology as per national guidance
7. Check wellbeing and identify any changes – emotional support resources
8. Promote positive and consistent messages regarding diet and body image – use available resources
9. Promote healthy lifestyle including food and activity

Diabetes care, aims and objectives

• HbA1c ≤ 48mmol/mol (by 6 months and maintained)
• average 14 day glucose < 8mmol/l (sensor data)
• standard Deviation < 3.0 (sensor data)
• time in range (4-10mmol/L), (based on 70% sensor usage)
• ensure patient centred/led care
• work in partnership with the CYP and their family
• to discuss at each clinic and consider options to facilitate target achievement:
• technology use incl. pump therapy, FGS/CGM, Hybrid closed Loop
• education required (developmental/ age appropriate)
• promote regular data review by CYP/families
• extra appointments/referrals (for example, social care, psychology)
• injection and infusion sites
• early help referral

Celebrate successful behaviours! (Not specifically achieving targets)

References and useful links

NHS England

• NHS Long Term Plan 2019
• Paediatric diabetes best practice tariff
• Diabetes Transition Service Specification (2016)

NICE

All NICE products on diabetes

• NG17: Type 1 diabetes in adults: diagnosis and management
• NG18: Diabetes (type 1 and type 2) in children and young people: diagnosis and management
• NG28: Type 2 diabetes in adults: management
• NG43: Transition from children to adults’ services for young people using health or social care services
• TA943: Hybrid closed loop systems for managing blood glucose levels in type 1 diabetes
• QS167: Promoting health and preventing premature mortality in black, Asian, and other minority ethnic groups
• QS208: Type 1 diabetes in adults
• QS209: Type 2 diabetes in adults

Useful links

• Diabetes UK
• JDRF: Improving lives. Curing Type 1 diabetes
• NHS Futures: The National Diabetes Programme. Children and Young Adults with Diabetes
• NHSFutures – National RightCare: https://future.nhs.uk/NationalRightCare/grouphome
• NHS England: Model Hospital

Enablers

Funding

System leadership

Data

Workforce

Area of focus 1: addressing diabetes health inequalities

Equitable services

Equitable access to technology

Risk factors associated with Type 2 diabetes

Area of focus 2: reduce variation in treatment, care, and outcomes across systems

Quality oversight

Timely and accurate diagnoses

Structured education and peer support

First year of care

Preventing hospital admissions

Retinopathy

Dental care

Treatment technology

Mental health and well-being

Area of focus 3: improve treatment and care for those transitioning from paediatric to adult services

Preparation for transfer and transition

Integration of paediatric and young adult services

Young adult care

Contraception and pregnancy planning

Area of focus 4: improve treatment and care for children and young adults with Type 2 diabetes

Prevalence 

Healthy lifestyle support

T2DAY: Type 2 diabetes in the young