Education: Children with Diabetes

Lord Kennedy of Southwark Excerpts

Tuesday 1st February 2011 Grand Committee

To ask Her Majesty’s Government what steps they are taking to ensure that all children with diabetes are able to benefit from an education at school.

[Lord Kennedy of Southwark]

First, I declare that I have type 2 diabetes, having been diagnosed with the condition nearly two years ago. I am a member of the charity Diabetes UK and actively support its work.

I thank the Minister, the noble Lord, Lord Hill, for being here to respond to this debate. I am sure he has a busy diary and his attendance is very much appreciated. I am delighted that my noble friend Lady Young of Old Scone is also taking part. She is the chief executive of Diabetes UK, and I think it is fair to say that we are all looking forward to her informed contribution to this debate. I also look forward to the maiden speech of the noble Lord, Lord Lexden.

Too many children with type 1 diabetes get a raw deal at school. Many of our children are excluded from school trips or social events; they are excluded from PE lessons; they are prevented from eating the snacks they need when they need them; they are denied access to their medicines when they need them because they are “safely locked away”; and they experience bullying. Many young children are also left to inject insulin themselves, leading to increased fear and anxiety for their parents. It is therefore not just the children with diabetes who get a raw deal; their parents do too.

As well as the worry that parents feel for their children, many are forced to give up work because schools refuse support if a child is unaccompanied by a parent. Diabetes UK continually hears from parents who are unable to work because they have to go into school to administer medicine. Diabetes UK also continually hears from parents who have to fight for basic support from a school and they do not always get it. Some children have even been forced to move schools. They have heart-breaking stories, and there is an emotional and financial strain on families.

At this point, I congratulate Diabetes UK, which has established an advocacy service offering vital help for families struggling with these issues. Diabetes UK deals with around 100 enquiries a month. I also commend the charity for its long-running efforts to improve the lives of all children with diabetes at school.

Noble Lords may ask: why does this issue matter when only a small number of children live with type l diabetes? However, it is not a small number. More than half of our schools have children with diabetes. In recent times, childhood obesity and poor food choices leading to type 2 diabetes have been the focus of attention. While these issues should not be ignored, only 1,400 children in the UK have that form of diabetes. However, 20,000 children under the age of 15 have type 1 diabetes. Its incidence is increasing, particularly in the under-fives, where the number affected has increased fivefold over the past two decades. Two thousand children are diagnosed with type 1 diabetes every year.

Children with diabetes have as much right as any other children to a decent quality of education and school experience, yet their school experience varies greatly from no school support and very patchy support to good, child-centred provision. Many of our schools are failing to help children with diabetes to participate fully in learning and school life. Worse still, a lack of education among pupils, parents and teachers leads to bullying and children struggling to fit in. That increases their anxiety about being “different”—a feeling which could affect their confidence level in school and throughout life.

David, a boy from a school in Northamptonshire who was diagnosed with type 1 diabetes when he was three, got upset when a girl told him that she was not allowed to play with him in case she caught his diabetes. Another boy used to call him “Diabetes Boy”. He remembers how he was not invited to play at his friends' houses, as their parents were scared that they could not deal properly with his diabetes if they needed to.

Children with type 1 diabetes are at risk of heart disease, blindness, amputations and kidney failure, so proper control of their condition is imperative. It is vital to keep their blood sugar regulated, avoiding fluctuations. Regular blood-sugar tests and injections, sometimes up to four or five times a day, are necessary to avoid life-threatening complications. These tests and injections have to take place during school. It is not a choice; it is a necessity. Insulin, via injection or pump, sometimes several times a day, is vital for life. At a school in Warwickshire, Jane, a young girl, was diagnosed with type 1 diabetes at the age of 11. She was told not to inject herself in public as it was “disgusting”, but these injections have to take place during the school day.

Too many schools are uncomfortable about dealing with children with diabetes. Another school was not treating a six year-old’s “hypos” when they occurred, nor telling the child’s parents. It also refused to do the blood glucose monitoring test because staff felt too squeamish.

Many schools lack knowledge and have a fear of liability. In one school, although it had a nurse to assist children with diabetes, children were excluded when the nurse was on leave or absent, and pupils were made to wait outside the school gates until the nurse arrived each morning. There are some reports of schools expecting parents to ignore clinical advice and change a child’s testing and injection regime to suit the schools’ scheduling. Surely this should be the other way round.

Five year-olds banned from school sports days; schools refusing to hold supplies of insulin or blood-testing kits; worse still, schools refusing to have children with diabetes in their classes; a nurse refusing treatment to a toddler—the list of shocking accounts goes on. Some schools believe that administering medicine is not their responsibility. A Diabetes UK survey showed that, although more than half of schools were aware that they had pupils with diabetes, 70 per cent required either that such children injected themselves or that their parents came in to do it. Only 16 per cent allowed staff to test and give medicines to pupils.

That is why more than 80 per cent of five to 11 year-old children with diabetes are failing to achieve good control of their condition. This is the worst level in Europe. It means increased health problems for our children and worsening health as they enter adulthood. It is a preventable strain on the resources of the NHS and a preventable level of suffering.

We should have policies and procedures that protect our children, not put their health at risk. Too many children struggle to keep their diabetes under control. Schools need to be part of the solution, not the cause of the problem. They have a vital part to play in supporting the daily management of diabetes in children.

There are some great schools which support children with diabetes very well. The right attitude and leadership at a school can make a huge difference. Their good practice needs to become standard practice in all schools. All children with diabetes should be known to the school, with individual care plans prepared with the child, parent, doctor and teacher. Good practice involves a positive school attitude, a child-centred approach and a high level of training for the staff. The aim in every school, or at least every school with a child with diabetes, should be to train all teachers and support staff. Government need to be proactive and strengthen existing legislation so that children with diabetes or any health condition are recognised as a vulnerable group and their well-being is properly supported.

The plight faced by children with diabetes at school exemplifies fundamental failings in public policy, bringing health and education together at a national and local level. Effective partnerships need to be built, and schools need to be required to provide staff training so that teachers have the confidence to support children with diabetes properly and ensure that the guidance is followed. Inspection is the key to ensuring the proper implementation of policies and procedures. We need to establish standards in schools for the support of children with specific health conditions and place a duty on Ofsted to monitor whether that is provided.

Do the Government know the number of children in our schools with long-term conditions and the numbers for each condition? It is only with accurate information that the Government can know the amount and type of support needed to plan accordingly. As Ed Balls, Labour’s former Secretary of State for Children, Schools and Families, said, we want this to be the best place for children to grow up. That is why Every Child Matters. Every child needs the chance to fulfil their full potential.

In conclusion, I ask the Minister to agree to meet the delegation from Diabetes UK and myself to explore what can be done to improve the situation. I do not believe that this involves huge costs; rather, it involves a willingness and a desire to see the situation improved. As Daniel at age five said: “I like school, but school doesn’t like me”.