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A deafening silence - children and young people with diabetes feel they are being ignored

Thousands of children and teenagers with diabetes in the UK are left disenfranchised and at risk of developing serious health complications, because they feel healthcare professionals and schools don’t always listen to their needs and help them control their diabetes. This is the finding of a report by Diabetes UK.

We are now calling for improved provision of and access to educational and psychological support for children and young people with diabetes.

The report's findings

Last year 61 per cent of children and young people with diabetes aged up to 17 years said that they rarely felt able to talk about their needs or only able to talk about them “some of the time” when trying to discuss their diabetes care goals with their healthcare team.

For example, many children and young people wanted to have better access to advice on food choices and to psychological support but last year only 16 per cent of children and young people always had access to a dietitian and only 0.5 per cent to a psychologist.

The Diabetes UK’s Survey of people with diabetes and access to healthcare services 2009 report also shows that 56 per cent of children and young people wanted to see better communication between their diabetes care team and schools so that they could receive the necessary joined-up support to manage their diabetes better.

Diabetes UK calls for individual care plans

Diabetes UK calls for all young people and children with diabetes to have a care plan developed in collaboration with their school and their healthcare team: at the moment 46 per cent of children and young people do not have a plan in place.

Managing diabetes often more complex for younger people

The management of diabetes in children and young people can be more complex compared with adults. Adolescence is a notoriously difficult time to achieve good diabetes control as hormonal changes can affect blood glucose levels. Having poor diabetes control makes children and young people more at risk of developing the serious complications of diabetes in the future, including stroke, heart disease, amputation, kidney disease and blindness.

Children need help and to be heard

“Coping with a condition like diabetes as a child or a young person is a great challenge and many struggle with their diabetes management," said Douglas Smallwood, Chief Executive of Diabetes UK.

"We must provide children and young people with diabetes with all the necessary help and support so they can manage their condition effectively and avoid developing the serious complications of diabetes in the future."

Helping children to take control of their diabetes

"The majority of diabetes management is self-care, so it is crucial that children and young people feel that they are being listened to and can take control of their condition. If they feel their views are not taken into account, we run the risk that they will become disenfranchised and become less likely to attend their healthcare appointments as adults.”

Dr Deborah Christie, Consultant Clinical Psychologist at University College London Hospital (UCLH) said “We must understand that managing diabetes within a full and active life is challenging for children, young people and families. This is why it is vital to offer them the type of support and advice they need. Psychological support for instance is an area where more provision is urgently needed.”

In the UK there are 25,000 children and young people under the age of 25 with Type 1 diabetes and it is estimated that as many as 1,400 children may have Type 2 diabetes.

Innovative ways of working with children and young people

There are already projects being developed in the UK to find imaginative ways of addressing the specific needs of young people. One such project was put in place by Leeds Metropolitan University. Their ‘Getting Sorted’ project is a self-care programme created by young people for young people to provide young people with a forum for discussing their diabetes, especially the psychological and social aspects of the condition.

‘Getting Sorted’ is a sequence of workshops that captures the key issues raised by 100 young people living with diabetes, through talking groups, and gives them an opportunity to share their stories about what it is like to live with the condition. The project team receives input from 12-17 year olds with diabetes and asthma so that a self care model can be delivered that has been designed ‘by young people for young people’.

Young people will be much more likely to engage in a self care model that recognises, respects and values young people. The ‘Getting Sorted’ workshops are delivered by trained young facilitators who themselves have diabetes. The university works with nine Primary Care Trusts in the Yorkshire and Humber Region who have commissioned us to run the workshops alongside clinic. More information about the project can be found on the right.   

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