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

Children and teenagers with diabetes in Wales are at risk of serious health complications because they feel healthcare professionals and schools don't listen to their needs, a Diabetes UK report reveals today¹.

Young people living with the condition in Wales often feel disenfranchised and believe that healthcare professionals and schools don't help them to control their diabetes.

Diabetes UK Cymru is now calling for improved provision of and access to educational and psychological support for children and young people with diabetes.

More than 1,300 children and young people have Type 1 diabetes in Wales and 25 more children have Type 2 diabetes.

According to the report, last year 61 per cent of children and young people with diabetes aged up to 17 said they rarely felt able to talk about their needs or only able to talk about them "some of the time" when discussing their diabetes care goals with their healthcare team¹.

Many children and young people wanted to have better access to advice on food choices and to psychological support.

However, last year only 16 per cent of children and young people always had access to a dietician and only 0.5 per cent had access to a psychologist¹.

Diabetes UK's Survey of people with diabetes and access to healthcare services 2009 report also showed that 56 per cent of children and young people wanted to see better communication between their diabetes care team and schools in order to receive the joined-up support needed to manage their diabetes more successfully¹.

Diabetes UK Cymru is calling 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 place¹.

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.

Dai Williams, National Director of Diabetes UK Cymru, said: "Coping with a condition like diabetes as a child or a young person is a great challenge and many struggle with their diabetes management.

"We have many schools and healthcare professionals doing excellent work for children and young people with diabetes, but we need this work to be done across Wales for all children with the condition.

"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.

"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."