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Too many children and young people with diabetes not getting the care they need
The National Paediatric Audit report by the Royal College of Paediatrics and Child Health, March 2015, has shown that in England and Wales only 16.1% of young people aged 12 years and older are receiving the 7 annual checks that every child with diabetes should have. This is a slight improvement from the last audit but still very worrying.
The report states that not having the 7 health checks leaves many children and their families missing out on the chance to prevent health problems and this combined with a lack of diabetes education is contributing to too many children showing early signs of serious long-term complications.
- Over 25% of children with Type 1 diabetes aged 12 and over have blood pressure above their target.
- Over 7% have early signs of kidney damage.
- Over 14% are already experiencing problems with their eyes, blurred or partial loss of vision which is particularly alarming.
The report points out that there are considerable variations according to area in completion of the 7 care processes, treatment targets and complications and these are primarily the responsibility of paediatric diabetes unites.
Current standards for care, which are due to be updated in 2015, are published by NICE in CG15, ‘Type 1 diabetes: Diagnosis and management of Type 1 diabetes in children, young people and adults’.
The 7 key checks for children over 12 years should receive are:
- HbA1c – NICE says that levels less than 58mmol/mol indicates good glycaemic control and levels over 80mmol/mol is defined as poor control.
- Height and weight
- Blood pressure
- Urinary albumin
- Eye screening
- Foot examination.
Thyroid and coeliac disease screening
In addition to the above, it is important that children and young people with Type 1 diabetes are screened for thyroid disease and coeliac disease. These are both autoimmune conditions and as Type 1 diabetes is also an autoimmune condition, the risk of developing such diseases is increased.
The report recommends that paediatric diabetes units should ensure that children and young people with diabetes are screened for thyroid and coeliac diseases. At present, this is being achieved in only about half f the children and young people.
NICE also recommends psychological assessment of children and young people with diabetes by multidisciplinary teams to try to avoid the possible development of depression, eating disorders or the taking of drugs. Expert psychological reviews take place in less than half of children and young people with diabetes and again the report recommends that paediatric diabetes units ensure that there is annual screening to identify those who need expert psychological assessment.
Structured education programmes
NICE recommends age-appropriate structured education programmes for the on-going management of children and young people with diabetes but currently there is no nationally agreed programme, despite the many examples of good practice in England and Wales.
The 2013/14 audit shows that only 45.2% are receiving some form of structured education annually but this varies from 11.1% in the South West to 62.0% in the North West. Further investigation into these figures is required but it is clear that there is a great need for better access to structured education for children and young people with Type 1 diabetes.
So what are parent supposed to do?
IDDT’s advice is to make a list of what care children and young people with Type 1 are supposed to receive at least annually – the 7 key checks, thyroid and celiac disease screening, psychological assessment and structured education and keep a diary of when these are provided.
If they are not offered or provided, then in the best interests of the health and wellbeing of your child, ask for them and keep asking until they are provided. If we look back in history, it is only through patient / parent demand that syringes and needles became free on the NHS and the same happened with blood glucose testing strips. Yes, times have changed, but the right to good care has not, so don’t stop asking for the care and treatment that your child or young persons needs and deserves.