Imagine knowing that next month you will have to give yourself 150 injections. That whenever a friend suggests an ice cream or a swim before lunch, you will have to weigh up whether you need a blood test. That if your bag is stolen and the shops are shut, you might pass out in the street.
This is the reality for children with diabetes, says David Evans, research fellow in Exeter university's department of child health: "The medical model of diabetes makes youngsters feel they are carrying a colossal burden of responsibility, and some of the time they don't want it. They want to lose themselves in the occasion and get carried away, like most adolescents do. It's hard for them to recognise that diabetes is a social condition, with a medical name. It's going to be around for the rest of their lives, it's not going to change, and it's down to them to manage it."
A GROWING COMPLAINT
Diabetes is on the increase worldwide, at varying rates in different countries. In England and Wales, 17 children per 100,000 are diabetic; in Scotland the figure is 25 per 100,000. In Japan, three children per 100,000 have diabetes. No one knows precisely what causes either the condition or its changing prevalence: scientists assume a mix of genetics and environment.
These figures are for Type 1 diabetes, which is irreversible. It can be managed, but not cured. Type 2, customarily only seen in overweight middle-age, has recently been diagnosed in very obese children but is still extremely rare and generally treatable by diet. Teachers are most unlikely to see a child with Type 2 diabetes; this article deals only with Type 1.
To understand diabetes, you have to understand the pancreas. When it is working normally, its cells produce a hormone called insulin. Insulin regulates the quantity of sugar (glucose) in our blood. When we eat, our blood sugar level rises, so the pancreas releases extra insulin to break the sugar down and convert it into energy. When we exercise, our blood sugar is depleted. We then need less insulin, so the pancreas cuts back insulin production.
This system keeps going day and night, continually stabilising our blood sugar levels and preventing us from passing out because we have too little blood sugar, or from developing dangerously high blood acids because we have too much.
What happens in the bodies of people with diabetes, is the system fails to work. The pancreas produces little or no insulin. Blood sugar levels fluctuate wildly, producing symptoms such as constant thirst, frequent trips to the toilet, tiredness, weight loss and blurred vision. Children may also have headaches, stomach aches and unpredictable behaviour. Unless their bodies get some insulin somehow, they will become very ill.
A NEW INSULIN REGIME
For many years, diabetics managed their insulin shortage by a combination of minimising sugar intake (the "diabetic diet") and twice-daily insulin injections. Compared with the human body's sophisticated, 24-hours a day insulin adjustments, this was a sledgehammer approach. Its effectiveness was limited - a survey by the charity Diabetes UK last year found 85 per cent of diabetic children regularly had unhealthy blood sugar levels - and although it kept diabetics alive, it failed to prevent frequent low-sugar crises (hypoglaecemia, known as hypos) and long-term physical damage.
Blindness, kidney failure, foot ulceration and amputation, and heart disease, are consequences of unstable blood sugar levels, with child diabetics at proportionately greater risk during their lives of all of them, because their bodies have to cope with the condition for longer.
So over the last two years, a new regime for diabetic children has spread across Britain. It replaces the old, rough and ready "no sugartwo injections" system, with detailed monitoring of the body's sugar levels.
Today, as soon as they are old enough, diabetic children will use charts to calculate their carbohydrate intake and check their glucose levels with a blood test. When they exercise, they may test glucose levels before and afterwards. And once they know their glucose level, they will inject themselves with an appropriate amount of insulin.
That new regime has brought them fewer crises and much better long-term health prospects. It has also brought them a lot more fingerprick blood tests and insulin injections. Five daily injections and seven or eight blood tests are common among diabetic children compared with the two daily tests they had 18 months ago.
It has meant a big adjustment for these children, says Tracy Slater, eastern regional manager for Diabetes UK and member of a government working party on improving provision for diabetic children. And it has come as a shock to schools: "In the old days children would have a morning and an afternoon injection at home. Under the new multi-injection regime, they need fingerprick blood glucose tests and injections in school hours.
Schools are anxious about this. They worry about coming into contact with blood. They worry about giving injections, about supervising them. They worry about reading the testing machine to make sure the child has calculated the correct dosage. Some schools are saying they can't take liability, and they can't do any of it."
FEAR OF LIABILITY
Schools have always had to make adjustments for diabetic children, such as allowing them to eat when their bodies need extra blood sugar, and dealing with emergencies when their sugar levels fall too low. But since the multi-injection regime began in an era where school nurses are spread thinly, parental calls to Diabetes UK's helpline have put relationships with their child's school as one of their biggest concerns.
The issues are different for children of different ages. Although the use of epi-pen-style needles means children as young as seven or eight can manage their own injections, they still need supervision doing so, says specialist diabetes nurse Kirsten Jones of the Royal Devon and Exeter hospital. Younger than that, they will need an adult to inject them. An adult will also need to check the blood glucose reading, and that the child has dialled up the right insulin dosage.
In secondary schools, where almost all children self-inject, issues focus on where insulin and needles are stored, and on supervision. Older children are more likely to skip injections, and more likely in a large school to get away with it; says Kirsten Jones; good practice means they know a member of staff will check with them every day.
Staff may fear that any or all of this exposes them to legal action if something goes wrong. Yet the issue of legal liability is clear. No member of staff can be forced to take responsibility for carrying out or supervising medical procedures. But if a member of staff, whether the head, a teacher or teaching assistant is prepared to take responsibility, then provided they have carried out agreed procedures and received approved and regularly updated training, they are covered by local authority insurance and cannot be held liable for accidents.
TRAINING AND PLANS
What that means in practice, says Kirsten Jones, is staff need training from a diabetes nurse. She goes into school every time a child is newly diagnosed, to talk to staff and children and, with the child's parents, to draw up a care plan. (All primary care trusts have specialist diabetic nurses to do this job.) This will include information about diabetes, about potential difficulties, about the child's individual needs, emergency procedures, and injecting training: "I show them how to use the equipment, I give them gloves and sharps bins, and make sure they are taught about needlestick injury procedures, though in fact these shouldn't happen because most children will be doing their own fingerpricks and injecting."
Anxiety about needles in schools is widespread, she adds, with many secondary schools refusing to let pupils keep their injecting equipment with them, so they risk being unable to access them quickly and have to miss lunchtime activities while they cross school sites to inject. However, confident, trained staff can use their knowledge to some advantage:
"Children sometimes lay it on and say they don't feel well when they're coming to maths, and they might be hypo. If teachers pick that up, they can ask for a blood glucose monitor in school and suggest to the child they do some blood tests around that time. It's reassuring for the child and the teacher".
Ironically, the new multi-injection regime should reduce schools' anxiety about what used to be most feared in diabetes: the sudden emergency hypo.
This is where the child's blood sugar falls so low that they become dizzy or confused, or even have convulsions and pass out. Children generally can tell when their blood sugars are low, and need to be encouraged to listen and respond to signals from their body that they need to take additional sugar, in liquid or tablet form, followed by food.
School routines and rules may sit uncomfortably with this. A diabetic child cannot, for example, be included in a lunchtime detention without physical risk. They cannot be forbidden to eat in class. They may need to eat before or after PE sessions. (Sending the child whose blood sugar is already dangerously low along to an office to get a snack is not considered good practice, since they may pass out on the way.) They may need to be at the head of the lunch queue. They may need glucose drinks andor tablets, and food (a banana or cereal bar) during exams.
With flexibility and forethought, these potentially awkward situations can be easily dealt with, says Kirsten Jones: "The child should have as normal a day as possible in school. They need supplies in the classroom in primary schools, in an emergency box labelled with their name. All staff need to know where it is. It should contain dextrose tablets, sugar drinks, glucogel (a gel to be applied inside the mouth if the child is unconscious), biscuits or cereal bars. It needs to be checked regularly and parents called to top it up. In secondary schools the child can carry an emergency box, with a spare one in the office and spare insulin in a fridge in case a bag goes missing.
Children's discretion can become inhibiting, says David Evans, one of a group of Exeter university researchers running a pioneering study of adolescent diabetics on behalf of Diabetes UK. Schools need to recognise, whenever a child's diabetes seems a burden, that it is more of a burden to the child. After the shock of diagnosis comes the recognition that their lives will never be normal, that they can never take the risks other teens and adults take for granted: "It's very hard. They fear losing face if they think of themselves as diabetic. Parties, for example, are a major struggle. They feel ashamed; that nobody quite understands what it's like for them; that they always have to remain vigilant, or face the consequences."
* All staff, including lunchtime supervisers and coach drivers, need basic information on diabetes, on individual diabetic children, on where emergency supplies are kept and on what to do if a child has a hypo.
* Diabetes UK publishes a leaflet Children with diabetes at school: what all staff need to know, on its website together with proformas for individual children's symptoms and treatment.
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* Roche Pharmaceuticals is expected to publish a laminated flip chart on hypo symptoms and treatments this autumn; for details email: Kirsten.Jones@rdehc-tr.swest.nhs.uk