These are the findings of a survey out today, on World Diabetes Day.
School staff are often not given the training they need to help children with diabetes manage their condition on a daily basis or in an emergency, which is putting these youngsters' health in danger.
In addition, 70% of schools said that where children with diabetes are unable to inject themselves with insulin, parents have to come in and do it for them.
Although some policies covering children and medications are already in place and successful, the survey (of LEAs and schools in England) showed that many of them are often not detailed enough, not up to date and do not address the issues of concern.
The coalition is concerned that some children with diabetes are missing out on a full education by being excluded from sports, school trips and extra curricular activities. Reasons for exclusion include school staff's fears over a lack of training to care for pupils with the condition and worries about liability.
"This research confirms what too many parents have been telling us - that children with diabetes get a raw deal at school," said Douglas Smallwood, Chief Executive of Diabetes UK.
"Every aspect of school life is important, whether it's access to the support needed to manage a child's diabetes and protect their long-term health, or crucial social elements like sports and trips.
"The sooner LEAs, school staff and healthcare professionals implement a joined-up approach to helping schoolchildren live with the condition, the sooner these young people can enjoy their childhood like others their age."
Most of the children affected by these issues have type 1 diabetes, for which the peak age of diagnosis is 10-14 years old.
Do families worry about the support their children get at school? Please leave your name, location and comments in the feedback box below. (Terms and conditions apply)
"Yes definitely. My daughter has suffered hypoglycaemia since she was 18 months old. Last week her school refused to do her monitoring, after an accident, when a staff member pricked their finger, which means that at the moment she can't attend school until the matter is resolved. After doing some research, I have found that some 70% of schools do not provide adequate care for diabetics. I'm at a loss now as to what we can do next. At the start, the school accommodated her needs; now they have pushed so much that my daughter accommodates them. Her snack time and blood glucose monitoring has been adjusted to suit them, and since the changes, my daughter has had two fits. Previously she had not had a fit for over a year. Her blood glucose is no longer in control. Does it stem from poor education about diabeties, and the risks of bloodborne diseases, personal liability or money? - Diana Cameron, Hereford
"We worry constantly, my 4 year-old daughter was diagnosed in July, and started school this September. Her own body still produces some insulin, and to get better control she needs three insulin injections a day. Me and my husband both work, and I have to work through my dinner break each day, so that I can go to the school to give our daughter her insulin injection. Since being diagnosed she has had over 100 hypos and we are constantly checking her blood glucose levels through the night. We are so tired, a little help during the day would make our life a lot easier. We thought a district nurse would be able to administer her injection at school. I am now thinking of giving up work, which will make us struggle financially, but we have to put the needs of our daughter first. It just seems that in this day and age there does not seem to be enough support out there for working parents" - Name and address supplied
"I have grave concerns about the whole issue. I have an 8 year- old diabetic patient who is on four insulin injections a day and is injected by her 10 year-old brother as her mother works and cannot get to the school. I also have a 14 year-old patient excluded from school for two weeks because they refused to let him take in his needles and syringes as they were seen to be dangerous items that could be used as a weapon. There are lots of issues surrounding children with diabetes, and they already have the stigma of being different due to their diabetes. The education system needs shaking up to support these children with life-threatening conditions" - Carol, Practice nurse, Cwmbran
"I developed diabetes requiring insulin injections a few years ago. as as a fit, active normal weight adult aged 30 years. However, in 1992, I led a group on a BSES expedition to South Greenland, which included a young man aged 17 or 18 with diabetes (and also a deaf girl aged 19). He had been dealing with his own injections since he was diagnosed at the age of 14, and
did not require any help from anyone else" - Name and address supplied
"My daughter recently started high school and I have had to be very persistent to get the school to understand her needs. I'm not sure whether they have fully taken them on board even now. Having lots of different teachers in one day who don't even know who my daughter is, and her being shy and scared of the new discipline regime of a new school has caused her to be hypo and untreated until the end of a lesson or hide under a desk to take glucose tablets. She has gone to the toilets to do injections because facilities have not been provided or are found to be locked at lunchtimes. In an exam she was told to leave her bag at the back of a huge exam hall with 200 pupils in it, so she had no access to glucose tablets and spent the entire exam panicking in case she had a hypo. All of these issues could have been resolved if the school had listened to me and read her care plan" - Name and adress supplied
"My six-year-old daughter has diabetes, and is on an insulin pump. Although her school understands and acknowledges her needs, we have to come in or privately arrange for someone we have trained to come in to do her insulin pump boluses twice during the school day. When there are class outings, one of us must come along. Although I feel that the school and the local authority could have come through better for us on this issue, the fundamental obstruction we face is that the nursing staff at our diabetes clinic have advised the school that training by a medical professional is necessary to help her with her testing and boluses, and secondly, the diabetes clinic will not provide any such training for the insulin pump" - Rachel Kadel-Garcia, West Sussex
"Yes, I was a nurse and had to give up my job to give my 17 month-old baby injections at mealtimes, the nursery were not able to" - Name and address supplied
"Very much and all the time. I have two children at junior school with type 1 diabetes. The school do their best to manage the diabetes and the daily challenges it raises, with some teachers very actively involved or others unable to grasp the basics. The problem is having to 'ask' for this instead of being able to expect it. No parents know what they can reasonably call the duty of care owed to their children, despite them being in the school's care for a major part of the day. This life threatening disease, which causes variations in blood sugars, which affects mood, ability to concentrate, and even basic bodily functions, is not listed as one of the disabilities, which affects a child's educational ability. Hence so many LEAs manage never need to have a child with diabetes on a statement of extra need. My youngest son started in reception with diabetes. I had many volunteers to help him, but couldn't help the school secure funding for this careful, methodical care as it was deemed not suitable for extra funding by assigning a statement of care, which would follow him through his school life, by the LEA. I felt for my school as much as for my son. They did what I asked but got no recognition for it from any one in authority" - Jacqueline Double, Kent
"Absolutely, with a doubt" - Fiona, Essex
"It is hard to imagine the idea of a child being denied a lifesaving
medication because adults won't take on the responsibility of helping them, yet it happens every day to children across the UK. Why is this happening? Why do we tolerate this sort of discrimination against children because of their medical status? We believe that there should be legislation ensuring that children with chronic conditions, which include diabetes, are provided with proper care at school. There is also some evidence that some diabetes clinics are worried about changing a child's insulin regimen to a more suitable one when a twice- a- day insulin regimen is failing, because of the problems of finding someone to administer insulin injections in school. If this is the case, it means that a child's diabetes treatment is being dictated by the needs of the school and not the clinical needs of the child. When parents approach the LEA to apply for extra support, they are often told that the schools should meet these needs and the cost of employing someone to help with the management of the diabetes. Indeed there has recently been a case of an employee of an LEA being rude and aggressive when a parent tried to apply for extra funding. This caused distress. To appeal against a decision made by the LEA one has to go to a SENDIST tribunal - Name and address supplied
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