A recent report from the Children and Young People’s Health Outcomes Forum (CYPHOF) has shown that children and young people in the UK still have poorer health outcomes than their peers in northern and western European countries and there is also considerable variation in health outcomes around the UK (Lewis and Lenehan, 2014).
Children and young people (CYP) are too often an afterthought in national and local efforts to improve integrated care. It is imperative that CYP receive care and treatment as part of a life-course approach and receive patient-centred care in age-appropriate settings, where transitions and transfers are planned and supported, and where data is shared appropriately. This requires integrated teams, integrated working, and integrated/joint commissioning; we should be clear that when we talk about integration, we mean integration around the needs of the child and family and not integration between layers within the system. (Lewis and Lenehan, 2014). It is extremely important that, although we work within a specialist field, we do not become detached from the current issues in caring for CYP.
It is no surprise to those of us working in paediatric diabetes care that there continues to be variation in diabetes health outcomes around the UK. In 2001, the Hvidore Study Group reported its results from a 3-year study in 18 paediatric diabetes centres from 12 European Union member states, plus Switzerland and Norway. It revealed significant outcome differences among these centres. The study also showed that factors such as attitudes of treatment teams, self-management behaviours, education and patient satisfaction have an important impact on health outcomes (Danne et al, 2001).
Twenty years on, the National Paediatric Diabetes Audit report for 2011–2012 has demonstrated a significant improvement in the number of CYP with diabetes achieving an HbA1c of <58mmol/mol (7.5%) But I caution you not to celebrate too early; we are still significantly poorer than our European colleagues, especially in Germany. In 2010, only 10% of CYP with diabetes in Germany had an HbA1c >80 mmol/mol (9.5%), compared with over 40% in the UK. The National Diabetes Peer Review programme established in England, and under negotiation in Wales, will act as a quality assurance tool to ensure nationally agreed standards are met allowing us to challenge care that is below these standards (NHS England, 2014).
On 30 April 2014, George Howarth, MP, led a debate in the House of Commons on behalf of children with type 1 diabetes in the UK (Howarth, 2014). In this 90-minute debate he discussed the variations in care and specific issues, such as access to insulin pumps, structured education and psychology services. Interestingly, adherence to treatment and the weight-loss benefits that can be had from diabulimia were also discussed with the health outcomes currently for our young people.
In this month’s section, insulin manipulation is explored by Roulla Fanik. We need to urgently identify these at-risk individuals by asking the right questions and helping them access the specialist services they need. The treatment regimen for insulin-dependent diabetes is complex and demands constant attention, problem-solving, and self-discipline. A child diagnosed with type 1 diabetes aged five faces 19000 injections by the time they are 18 years. CYP with diabetes and their families, therefore, require age-appropriate and comprehensive diabetes education at diagnosis, as well as ongoing access to a competent multidisciplinary diabetes team (SWEET, 2009).
In the other article in the section, Rebekah Beer and colleagues describe the challenges in designing a new structured diabetes education programme, called WICKED, aimed at young people aged 16–24 years.