Diabetes - children and young people
There are about 26,500 children and young people with type 1 diabetes in the UK and about 500 with type 2 diabetes, and there are a further 2,000 children and young people in the UK with diabetes whose diagnosis is not known - these and other statistics can be found in the Diabetes UK publication Diabetes in the UK 2012: key statistics on diabetes.
The diagnosis of diabetes in a child or young person also affects the child’s parents, teachers, friends and other carers. It is vital that children and young people, and their families, receive support that meets their needs from diagnosis to transfer to adult services including support in school settings. Also important is that the transfer to adult services is well managed.
This page brings together selected resources to support the care of children and young people with diabetes.
You may also want to refer to information about national standards and guidance across the UK.
These resources were last accessed on 31 October 2012. Some of them are in PDF format – see how to access PDF files.
The list begins with resources that are relevant to both children and young people. This is followed by those specific to children and then those specific to young people.
Resources relevant to both children and young people
British Society for Paediatric Endocrinology and Diabetes (2009) BSPED recommended DKA guidelines 2009 (PDF 232KB)
These guidelines were originally produced by a working group of the British Society of Paediatric Endocrinology and Diabetes. They have been modified in the light of guidelines produced by the International Society for Pediatric and Adolescent Diabetes (2000), the ESPE/LWPES consensus statement on diabetic ketoacidosis in children and adolescents (Archives of Disease in Childhood, 2004, 89 pages 188 to 194), and guidelines produced by the International Society for Pediatric and Adolescent Diabetes.
Department of Health NSF: Clinical care of children and young people with diabetes
This section from the national service framework provides an overview of the special needs of children and young people with diabetes.
Department of Health (2010) Diabetes type 1 in childhood. National Service Framework for children, young people and maternity services
The NSF for Children, Young People and Maternity Services has been published alongside supporting material, which includes a series of exemplar patient journeys. While it is not the role of the NSF or the exemplars to provide detailed clinical discussion on individual childhood conditions, exemplars illustrate some of the key themes in the NSF. This exemplar describes a care pathway for a child with Type 1 diabetes.
Department of Health (2007) Making every young person with diabetes matter
This report sets out current problems, provides guidance and makes recommendations in a number of areas including commissioning, organisation of care, provision of services and workforce.
Diabetes UK (2013) The type 1 essentials for children and young people. "Only six per cent of children and young people, whose checks are being recorded, are getting all of the recommended diabetes care, services and support they are entitled to". As a result over 85 per cent of children and young people over the age of 12 have blood glucose levels higher than the recommended targets. This guide has been designed to help make clearer to parents what good care looks like and inform them what they can do if their child isn't getting the appropriate care.
Diabetes UK (2012) Do you know the 4 Ts of type 1 diabetes
Diabetes UK discovered through a survey that nine out of 10 parents are unaware of type 1 diabetes symptoms. As many as one in four children and young people (one in three for children under five years old) are diagnosed with type 1 diabetes when they are in diabetic ketoacidosis (DKA) which is a life-threatening condition. Diabetes UK have launched this campaign to raise awareness of the 4 Ts - Toilet, Thirsty, Tired, Thinner.
Diabetes UK Care recommendations (2010) type 2 diabetes in children and young people
Diabetes UK recommends that for children and young people with type 2 diabetes, the guidance published by the International Society for Pediatric and Adolescents with Diabetes (ISPAD) should be followed for diagnosis and treatment. See: ISPAD (2009) Type 2 diabetes in children and adolescents (PDF 571KB).
Juvenile Diabetes Research Foundation
JDRF is a leading charitable funder and advocate of type 1 (juvenile) diabetes research worldwide. JDRF's mission is to find a cure for diabetes and its complications through the support of research.
Medical Conditions at School
This website provides information to help schools and school healthcare professionals support all pupils with medical conditions.
NHS Diabetes: Areas of care: Children and young people
This section of the NHS Diabetes website is aimed at commissioners and providers of diabetes care. It brings together guidance, policy, commissioning guides, links to care pathways and examples of how services can be improved for children and young diabetes.
NHS Diabetes (2012) Best Practice Tariff for Paediatric Diabetes
In England, NHS Diabetes and the Paediatric Diabetes Networks have worked with the Department of Health to draw up a set of standards that aim to ensure the delivery of high quality paediatric services to every child and young person under 19 with diabetes. These are delivered as out-patient services. The standards are being applied as from April 2012. A paediatric diabetes tariff will offer an enhanced payment to centres that meet the criteria set by these minimum standards of care. A section of the NHS Diabetes website explains the system including FAQs and also information for parents, children and young people.
NICE (2004): Type 1 diabetes: diagnosis and management of type 1 diabetes in children, young people and adults
This clinical guideline makes recommendations about the diagnosis of type 1 diabetes in children and young people and about the care that should be available for them. It also covers the transition to adult care.
NICE pathways: Diabetes overview
NICE Pathways is an online tool for health and social care professionals that brings together all related NICE guidance and associated products in a set of interactive topic-based diagrams. In this pathway for diabetes there is a section on Managing type 1 diabetes in children and young people.
Royal College of Paediatrics and Child Health: National Diabetes Survey – Growing up with diabetes
This project was commissioned by NHS Diabetes and its aim was to find out the number of children and young people under the age of 18 who have diabetes in England. The project report Growing up with diabetes: children and young people with diabetes in England was published in 2009 and is available to download from this page.
Royal College of Nursing (2006) Specialist nursing services for children and young people with diabetes (PDF 1.39MB)
This publication summarises nurses' roles in caring for children and young people with diabetes. Guidance is also given on caseloads and nurse/patient ratios, as well as standards for service development and review.
Royal College of Nursing (2009) Supporting children and young people with diabetes: guidance for nurses in schools and early years settings (PDF 743.0KB)
The RCN is aware of inequality in the care provision for children and young people in schools and early years settings. This document outlines the principles that health care professionals and education staff should apply to ensure the needs of children and young people with diabetes are met.
Royal College of Nursing (2011) Children and young people with diabetes: RCN guidance for newly appointed nurse specialists (PDF 1.1MB)
Specialist nurses have a significant impact on good diabetic control and overall management. As many specialist nurses work in isolation this guidance has been developed to sign post key resources and sources of support to those new to a specialist role key. The guidance also highlights issues that need to be considered by the individual as well as their employing organisation.
Specific to children
Children with Diabetes: the online community for kids, families and adults with diabetes. Juvenile Diabetes Research Foundation
The aim of this online community is to promote understanding of the care and treatment of diabetes, especially in children.
Cochrane Library Database of Systematic Reviews
Routine hospital admission versus out-patient or home care in children at diagnosis of type 1 diabetes mellitus
In many places, children newly diagnosed with type 1 diabetes mellitus are admitted to hospital for metabolic stabilisation and training, even if they are not acutely ill. This review assesses the effects of routine hospital admission compared to out-patient or home-based management in children newly diagnosed with type 1 diabetes mellitus.
Specialist home-based nursing services for children with acute and chronic illnesses
Specialist paediatric home-based nursing services have been proposed as a cost-effective means of reducing trauma resulting from hospital admissions, while enhancing primary care and reducing length of hospital stay. This review evaluates specialist home-based nursing services for children with acute and chronic illnesses.
For further information about Cochrane reviews see How to use the Cochrane Library.
Diabetes Scotland
Diabetes Scotland, which focuses on the care of children with type 1 diabetes acts as a portal to the websites of several Scottish centres which care for children with diabetes.
Diabetes UK (2008) Making all children matter: support for children with diabetes in schools
This report looks at the current provision of support for children with diabetes in schools in England. The report makes a series of recommendations around legislation, guidance and training and data collection to give a greater focus to the needs of children at school with long-term conditions. It also includes examples of good practice and collaborative approaches to providing support.
Specific to young people
Diabetes UK: Making connections - a toolkit for young people (PDF 4.6MB)
The toolkit offers advice to young people on understanding their diabetes and how to get the best from diabetes teams. It brings together information and lifestyle advice which includes: leaving home; studying; starting work; travelling; families; friends and relationships; food; driving.
Diabetes UK: My Life
Stories, advice, cartoons and competitions specifically for young people with diabetes.
Journal of Medical Internet Research (JMIR): Improving diabetes care for young people with type 1 diabetes through visual learning on mobile phones: mixed-methods study
“Participants reported an increased understanding of applied knowledge which seem to positively affect diabetes self-care. Visual impressions seem well adapted to the maturation of the adolescent brain, facilitating the link between theoretical knowledge and executive functions". Use of short message service (SMS) gave the participants a feeling of increased access and security.”
NHS Diabetes: Diabetes transition - Assessment of current best practice and development of a future work programme to improve transition processes for young people (PDF 1.2MB)
This report summarises the work by a number of small groups looking at transition in diabetes care and includes examples of good practice as well as a set of principles that can be used to deliver improvement in transition services.
Royal College of Nursing (2008) Lost in transition: moving young people between child and adult health services (PDF 125.7KB)
This document presents, with reference to other publications on this topic, the principles of good practice in arranging transitions of children with disabilities, chronic diseases or significant mental health problems from child to adult services. Five key activities are highlighted as essential to this good practice.
See other specific contexts and populations.