There are around 26,500 children and young people with Type 1 diabetes in the UK.
All children and young people with Type 1 diabetes and their families deserve access to the best possible care, to be involved in decisions that affect them, and to live a life free of discrimination and diabetes complications. The commitment to ensuring children and young people receive high quality, joined up care is evident in the policy initiatives and guidance available in the UK nations. The need to improve care delivery and outcomes is also a priority across the EU, a policy document defining standards and centres of reference was delivered to the EU in April 2011 (www.sweet-project.eu).
However, from the current national audit data and in a survey completed by Diabetes UK members:
- 84 per cent of children with diabetes in England and Wales with an HbA1c recorded did not achieve recommended blood glucose targets
- only 6 per cent were recorded to have received all the key care processes outlined in NICE guidance 7 in the 2010/11 audit period. In Scotland ‘glycaemic control remains unsatisfactory in children and adolescents with a high percentage of subjects falling outside the targets described in accepted guidelines’.
- 20 per cent of young people feel they rarely, if at all, discuss their goals for diabetes care at their clinic appointments
- 87 per cent of young people never see a psychologist
- Only 26 per cent have attended a course to help them learn about managing their diabetes
- Around 38 per cent were unaware of the adult diabetes staff prior to transfer
- 29 per cent want improved access to insulin pump therapy
- In only 29 per cent of cases do school staff help with insulin injections, with 66 per cent of help coming from parents and a further 3 per cent from relatives
- 27 per cent of young people would like to see improvements in the diabetes knowledge of general hospital staff
The clinical, social, and financial benefits of investing in services for children and young people with diabetes are clear. In the long term equipping young people with the care, education and support they need to achieve wellbeing and to self-manage can help reduce their risk of developing life-threatening diabetes related complications, through improved diabetes control.
This is of particular concern when we consider that Type 1 diabetes in children under five years across Europe will double by 2020 if present trends continue, with numbers of children older than five also increasing substantially. In the short term improved management can help enhance satisfaction with services, reduce hospital admissions for acute illness or complications, and improve academic performance and attendance at school.
Download the full position statement on High Quality Care for Children and Young People with Type 1 Diabetes in the UK (PDF, 260KB)