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A collaborative approach to improving outcomes for children and young people with diabetes: What does the future hold?

Sheridan Waldron, Fiona Campbell

Over the past decade, UK guidelines and standards (Department of Health [DH], 2001; 2007; National Institute for Health and Clinical Excellence, 2004) have specifically focused on children and young people (CYP) with diabetes, resulting in many improvements in their care (Gosden et al, 2010). However, the most recent National Diabetes Paediatric Audit Report (NDPAR; NHS Information Centre, 2011) shows that more than 85% of CYP with diabetes do not achieve the HbA1c target of <58 mmol/mol (7.5%). In addition, the DH (2012) reports not only poor glycaemic control with national variations but also alarming variations in diabetic ketoacidosis admissions; identifying and tackling such variations should improve both the quality and efficiency of care. 

The Children and Young People’s Health Outcomes Forum was launched in January 2012 and will report to the Government with independent advice in June 2012. A suite of health outcome indicators and measures with recommendations for delivery will be developed for CYP with diabetes supported by the NHS and Public Health Outcomes Framework. The Forum will engage with CYP with diabetes, their families and key stakeholders to create positive change. 

In 2010, ten regional Paediatric Diabetes Networks (PDNs) were set up across England, supported by NHS Diabetes, to improve the quality of care for all CYP with diabetes. The PDNs have assisted individual centres to achieve the best practice tariff standards (NHS Diabetes, 2012) and improve participation in the NDPAR. Lead diabetes centres within each PDN could be responsible for clear clinical leadership, governance, accountability and responsibility for delivery of outcomes. PDNs will move forward to develop new models of care to meet the needs of CYP with diabetes and their families.

The SWEET Project UK (Waldron et al, 2011) identified enormous diversity and variability in training for healthcare professionals (HCPs) and education for CYP and their families. Accreditation and standardisation of education is a key factor to ensure we have highly skilled HCPs that can deliver individualised diabetes self-management education and support. Although established postgraduate training for multidisciplinary teams exists across the UK, there remains a pressing need to establish national mandatory training, based on a national curriculum and including key findings from empirical research. In parallel, accredited, age- and maturity-appropriate, family-centred programmes (DH, 2007; International Society for Paediatric and Adolescent Diabetes [ISPAD], 2009; SWEET Project, 2012) are required for CYP with diabetes and their families. National and international guidance for diabetes education (DH, 2007; ISPAD, 2009; SWEET Project, 2012) must be embedded within a new national strategy. 

The Health and Social Care Bill places the emphasis on outcome-based commissioning of healthcare services. Developing this new system of care for CYP with diabetes will ensure the quality of the clinical service and robustness of data needed to support remuneration for achieved outcomes. Benchmarking with other EU countries will be an essential part of the new system (SWEET Project, 2012). Clinician engagement is vital to transform the care of CYP with diabetes. Armed with the belief that these changes are necessary and with commitment and teamwork, we can deliver one of the best diabetes services for CYP in the world.

Over the past decade, UK guidelines and standards (Department of Health [DH], 2001; 2007; National Institute for Health and Clinical Excellence, 2004) have specifically focused on children and young people (CYP) with diabetes, resulting in many improvements in their care (Gosden et al, 2010). However, the most recent National Diabetes Paediatric Audit Report (NDPAR; NHS Information Centre, 2011) shows that more than 85% of CYP with diabetes do not achieve the HbA1c target of <58 mmol/mol (7.5%). In addition, the DH (2012) reports not only poor glycaemic control with national variations but also alarming variations in diabetic ketoacidosis admissions; identifying and tackling such variations should improve both the quality and efficiency of care. 

The Children and Young People’s Health Outcomes Forum was launched in January 2012 and will report to the Government with independent advice in June 2012. A suite of health outcome indicators and measures with recommendations for delivery will be developed for CYP with diabetes supported by the NHS and Public Health Outcomes Framework. The Forum will engage with CYP with diabetes, their families and key stakeholders to create positive change. 

In 2010, ten regional Paediatric Diabetes Networks (PDNs) were set up across England, supported by NHS Diabetes, to improve the quality of care for all CYP with diabetes. The PDNs have assisted individual centres to achieve the best practice tariff standards (NHS Diabetes, 2012) and improve participation in the NDPAR. Lead diabetes centres within each PDN could be responsible for clear clinical leadership, governance, accountability and responsibility for delivery of outcomes. PDNs will move forward to develop new models of care to meet the needs of CYP with diabetes and their families.

The SWEET Project UK (Waldron et al, 2011) identified enormous diversity and variability in training for healthcare professionals (HCPs) and education for CYP and their families. Accreditation and standardisation of education is a key factor to ensure we have highly skilled HCPs that can deliver individualised diabetes self-management education and support. Although established postgraduate training for multidisciplinary teams exists across the UK, there remains a pressing need to establish national mandatory training, based on a national curriculum and including key findings from empirical research. In parallel, accredited, age- and maturity-appropriate, family-centred programmes (DH, 2007; International Society for Paediatric and Adolescent Diabetes [ISPAD], 2009; SWEET Project, 2012) are required for CYP with diabetes and their families. National and international guidance for diabetes education (DH, 2007; ISPAD, 2009; SWEET Project, 2012) must be embedded within a new national strategy. 

The Health and Social Care Bill places the emphasis on outcome-based commissioning of healthcare services. Developing this new system of care for CYP with diabetes will ensure the quality of the clinical service and robustness of data needed to support remuneration for achieved outcomes. Benchmarking with other EU countries will be an essential part of the new system (SWEET Project, 2012). Clinician engagement is vital to transform the care of CYP with diabetes. Armed with the belief that these changes are necessary and with commitment and teamwork, we can deliver one of the best diabetes services for CYP in the world.

REFERENCES:

Department of Health (2001) National Service Framework for Diabetes. Available at: www.dh.gov.uk/assetRoot/04/05/89/38/04058938.pdf (accessed 01.05.12)
Department of Health (2007) Making Every Young Person with Diabetes Matter. Available at: http://tiny.cc/anzmdw (accessed 01.05.12)
Department of Health (2012) Atlas of Variation in Healthcare for Children and Young People. NHS Right Care. Available at http://www.rightcare.nhs.uk/atlas/ (accessed 01.05.12) 
Gosden C, Edge JA, Holt RI et al (2010) The fifth UK paediatric diabetes services survey. Arch Dis Child 95: 837–40 
International Society for Paediatric and Adolescent Diabetes (2009) Clinical Practice Consensus Guidelines 2009. Available at: http://www.ispad.org/FileCenter.html?CategoryID=5 (accessed 01.05.12)
National Institute for Health and Clinical Excellence (2004) Diagnosis and Management of Type 1 Diabetes in Children, Young People and Adults. Available at: http://www.nice.org.uk/CG15 (accessed 01.05.12)
NHS Diabetes (2012) Best Practice Tariff for Paediatric Diabetes. Available at: http://tiny.cc/f31mdw (accessed 01.05.12)
NHS Information Centre (2011) National Diabetes Paediatric Audit Report 2009–2010. Available at: www.ic.nhs.uk/diabetesaudits (accessed 01.05.12)
SWEET Project (2012) Better Control in Paediatric and Adolescent Diabetes: Working to Create Centres of Reference. Available at: http://sweet-project.eu (accessed 01.05.12)
Waldron S, Allgrove J, Swift PG (2011) Education and training in paediatric diabetes: the UK position. Pract Diab Int 28: 218–23a

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