World Diabetes Day: How Type 1 affects children

Today marks World Diabetes Day and we are delighted to have a guest article by Fiona Faure from The Children With Diabetes Advocacy Group. Both of  Fiona's children have type 1 diabetes. Her daughter was diagnosed at the age of 2 and is now 15 years old while Fiona's son was diagnosed at the age of 12 and is now 18.


Type 1 Diabetes

On the 14th of November, buildings across the UK will once again be lit up blue to mark World Diabetes Day.


Currently there are approximately 26,500 children across the UK living with this chronic, life threatening condition for which there is no prevention or cure.  It is an auto-immune disease in which the insulin producing cells of the pancreas are destroyed.  Effective management of this condition is required to reduce the risk of developing long term complications such as blindness, kidney failure and nerve damage.

Diabetes is legally considered a disability, but often overlooked because it is a “hidden” disability e.g. not visually obvious.  These children are insulin dependent and treat their condition by way of injections or an insulin pump.  A child with Type 1 diabetes is required to balance their diet, insulin and exercise 24 hours a day to prevent hyperglycaemia (high blood glucose levels) and hypoglycaemia (low blood glucose levels).

A child with hyperclycaemia may experience symptoms such as drowsiness, have a frequent urge to urinate, extreme thirst, a dry mouth, blurred vision or frequently wet their bed.  A child with hypoglycaemia may experience symptoms such as trembling, dizziness, blurred vision, mood changes, extreme tiredness and paleness, headaches, hunger or sweating.  These can be experienced by a child with diabetes on a regular basis.

All children with Type 1 diabetes should have an Individual Health Care Plan in school to effectively manage the child’s medical condition.  At present there are only a very small percentage of children with Type 1 that have statements in school.  These are mostly children that have a MEDICAL condition as well as a special EDUCATIONAL need.   So, for the vast majority of children with Type 1 diabetes in school, they are not given any help in school although some have accessed support through the School Action or School Action Plus funding.

Originally, the situation was that under the new draft SEN Code of Practice and the new draft Children and Families Bill both of which are expected to come into effect in September 2014, children with type 1 diabetes with NO SEN (Special Educational Needs) were not protected under this legislation but under other legislation such as the Equality Act 2010.

However, there have been some recent welcome developments.  The House of Lords has agreed an amendment to the Children and Families Bill that will put a statutory duty on schools, the health department and the local authorities to work with parents in supporting children with long-term medical conditions at school, such as children with Type 1 diabetes and NO SEN.

This support will include staff training, drawing up of individual Health Care Plans for each child that would include information relating to the management of the condition.  So for a child with type 1 diabetes this would include information relating to blood glucose monitoring, diet, insulin therapy, exercise and physical activity.  It would also include information on diabetic emergencies, school trips, general sickness etc.  This support will apply to children and young people between the age of 0 and 25, so will cover the early years settings, schools, colleges as well as higher education institutions.

I do not expect we will receive full details as to how this will be achieved for sometime, but it is a relief to know that this problem is finally being addressed after many years of campaigning for support for children with diabetes in schools through charities such as Diabetes UK and JDRF (Juvenile Diabetes Research Foundation) and through support groups such as the UK Children with Diabetes Advocacy Group.

You can read more school stories on our website.

I would encourage anyone with a child with a medical condition reading this article to get involved with their local councils in agreeing their “local offer” which will ultimately be the care provided locally for your children or young adults whether they have a statement (soon to be an Educational Health Care Plan) or not.

Fiona Faure 2013
Fiona Faure

As a working mother of two children with type 1 diabetes, I have had a personal interest in this subject for many years.  In 2001, my daughter, Kirsty, was diagnosed with type 1 diabetes at the age of two.  At the time she was at nursery school and her treatment was two injections a day, one in the morning and one in the evening.  Several years later at the age of seven, she progressed onto multiple daily injections and she injected herself at lunch times since there was no help at school and no family support.  By 2007 at the age of nine she had progressed onto an insulin pump to better manage her diabetes.

That same year, my son Daniel, was also diagnosed with Type 1 diabetes whilst at secondary school.  He was put onto multiple daily injections immediately.  Daniel has recently completed a diploma through college and has just started at university but even at the age of 18 is still finding it difficult to control his diabetes.


I am excited that the future looks more positive for our children and young adults with disabilities and in particular those children with disabilities but no SEN who were previously denied support.  I would like to thank Special Needs Jungle authors for allowing me an opportunity to raise awareness of Type 1 diabetes.  Few people realise that Type 1 diabetes is a different medical condition to Type 2 diabetes.
The new eofe school doc final 2013 is due to be launched at an event on 26th November to which any headteachers or governors or SENCOS in the East of England are welcome to attend

Fiona Faure







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