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Best Practice Tariff for Paediatric Diabetes (diabetes in children and young people aged 18 and under) - information for parents, children and young people
There are around 25,000 children and young people aged under 19 in England and Wales. There is never a good time to develop diabetes but as any young person with diabetes or member of their family will agree, managing diabetes during childhood and adolescence is particularly difficult. Compared with other countries in Europe, the outcomes in the UK are not good and whereas other countries such as Germany have shown marked improvements over the past 10 to 20 years, our outcomes remain largely unchanged.
In 2009, with the support of NHS Diabetes, doctors and nurses involved in the care of children with diabetes and passionate about trying to make things better got together in networks across England. The aim of these networks was to look at how paediatric diabetes services were provided and to find ways of improving things. One thing that rapidly became clear was that there were huge differences in how services were staffed, delivered and supported across the country and it was felt that this was something that had to change; the same standard of care and access to services should apply no matter where you live.
NHS Diabetes and the Paediatric Diabetes Networks have been working with the Department of Health to ensure high quality paediatric diabetes services are provided to every child and young person with diabetes throughout the whole of England. By talking to people from every unit providing paediatric diabetes care in England, as well as commissioners (who are responsible for buying that care) and business managers (who have to make sure the service can afford to provide that care), a set of standards have been drawn up and will be applied from April 2012.
These standards are as follows:
- Every child or young person with diabetes will be cared for by a specialist team of health care professionals (consisting of a doctor, a nurse and a dietitian as a minimum) who have specific training in paediatric diabetes.
- The doctor must be a consultant or speciality doctor with training as detailed by the British Society for Paediatric Endocrinology and Diabetes, the nurse must be a paediatric nurse with training in childrens diabetes as detailed by the Royal College of Nursing and the dietitian must be a paediatric dietitian with experience and/or training in diabetes. If the doctor is a Specialist Registrar who wants to specialise in paediatric diabetes, they must be supervised by the consultant or speciality doctor.
- When a new diagnosis of diabetes is made in a child or young person, this must be discussed with a member of the specialist team within 24 hours of the diagnosis. The child or young person and their family must be seen by a senior member of the specialist team on the next working day.
- The diabetes team should offer a structured education programme at diagnosis and with updates as needed, aimed at the age and understanding of the young person and their family.
- Every child or young person with diabetes must be offered at least 4 clinic appointments a year with the doctor and specialist team.
- The HbA1C must be checked at every clinic visit and the result available in clinic for the appointment. It is recommended that this is checked at least 4 times a year.
- Every child or young person with diabetes should be offered an appointment with the dietitian at least once a year.
- At least 8 additional contacts per year (phone calls, e-mails, school visits etc) by members of the team are recommended.
- Every child or young person with diabetes must have an annual review done as detailed in the NICE guidelines on managing diabetes in children and young people (blood tests every year, plus blood pressure check and screening for eye and kidney problems from age 12).
- The team should check that the child or young person with diabetes is coping psychologically at least once a year and they should have access to psychology services as needed.
- The team should provide 24 access to advice on emergency management of diabetes for the family and other health professionals
- It is also expected that the team will take part in the National Paediatric Diabetes Audit, attend their local Paediatric Diabetes Network meetings regularly and have a clear policy for transition to adult services.
- Each team must have a clear policy which should cover what they do to try to help children and young people with high HbA1Cs improve their control and what they will do if a child or young person keeps not coming or is not brought to clinic, among other things.
If paediatric diabetes teams can show that they meet these standards, they must receive the set tariff (a funding increase) from their commissioners*. If they do not meet the standards at the moment, the local service have a year to make sure that they can do (e.g. by employing more people, linking in with other services etc.).
It is hoped that by making sure that everyone who looks after children and young people with diabetes is fully trained in how to do this and that every team has the right amount of staff to provide that care, every child and young person with diabetes will get the same high standard of care, no matter where they live in England. In the longer term, we would hope that we will see better outcomes with lower overall HbA1C levels, fewer admissions to hospital and fewer young adults getting the complications of diabetes such as blindness, kidney failure etc.
* The Department of Health have clearly stated that if trusts meet the 13 care standards, they must receive the set tariff from their commissioners.