A Chronic Condition
My daughter has Type 1 Diabetes. That’s the one where your pancreas fails completely for no apparent reason. It’s nothing to do with your diet or weight, it’s the one where you have to test your blood throughout the day, eat sugary snacks when your blood sugars drop, even if you don’t want them, at 3 o’clock in the morning, and inject yourself with insulin every time you eat. Poorly managed, it can cause a whole host of really horrible things to happen. Well managed, it means a strict regime of carb counting, injections, blood testing, hypo treatments and constant vigilance. It’s an absolute bastard of a disease for a child to live with. If I met it in the street, I’d punch its lights out.
But there are no such options with Type 1, you have to live alongside it, however much you hate it. We’ve lived with it for 5 years now, that’s approximately 11,000 times my daughter has had to stab herself in the finger to test her blood, and about 9,200 insulin injections. About a third of those have happened at school. When she was first diagnosed she was in year 4 at primary school, and a whole raft of training was launched at us and at her primary school staff. They had visiting nurses, new policies, training sessions, teaching materials, it was almost overwhelming, but they accepted the whole lot, without question and just got on with it.
As a parent, sitting frantically at the edge of a hospital bed as you’re told by a stranger that your child has a life-changing chronic medical condition, you make a vow, there and then, to protect your child and keep them close to you, so you can shield them from whatever dangers they will face. You learn everything there is to learn about the condition, your life is changed instantly, but you dump your old way of being in an instant and start packing whatever you might need for your family to set off on a slightly different course than the one you had planned. But pretty soon you realise that, however much you want to stay glued to their side, within a matter of days you’re going to have to hand them over to the care of virtual strangers.
Sending your newly-diagnosed child off to school on their first day back after diagnosis is utterly horrifying. However much training staff may have had, as a parent you can never quite believe that anyone other than you can care for your child properly. You’ll be forgiven for being the nightmare parent you swore you’d never be, for the half hourly phone calls, the over-protective written notes in lunchboxes and the triple checking of instructions before anything other than the simplest of school activities.
But, gradually, you learn to loosen the vice-like grip a little, and you start to accept that your child is still alive at 3.00pm every day, that nothing bad happened, and that the school will call you if they have any concerns. They’ll take your advice and they’ll support your child, they’ll work with you and they’ll be absolutely steadfast in their determination to ensure that your child has every possible opportunity to take part in every single activity they can provide. It still astonishes me, the extra effort the school willingly go to, to include her in everything, without question. The extra training sessions, the extra risk assessments, policies, first aiders, snacks, visits to the medical room, work set during hospital stays, the care and concern that school staff show to my daughter, and to me, every minute of every day.
At what cost?
And all of this for nothing – schools don’t get a penny of extra funding to care for children with medical conditions, for diabetics, epileptics, asthmatics – they just absorb it all; the cost of staffing and running a Medical Room, the cost of first aid courses, the cost of supply to cover staff attendance at those courses, the cost of the phone calls home, the policy writing and review, the admin which makes sure that all relevant staff are kept fully up to date with changes to care plans and regimes. The extra eye that all school staff place on those physically vulnerable children, when they battle through normal childhood illnesses made so much more complex by their underlying conditions. The impact of the nightmare of teenage years, anxiety, relationships, hormones, even the weather, on their compromised immune systems and fluctuating well-being.
I worry that soon, as every single part of school life is having to be scrutinized for efficiency and worth, some schools may have to start limiting the quantity and quality of care they are able to offer. Whilst no one will want to say it out loud, there will be schools who will have to consider those costs very carefully indeed, and where pastoral and support staff may have to be sacrificed, so might the school’s ability to provide the full wrap-around care that currently comes as standard. As staffing hours are cut, so might the chance for that member of staff to take that extra minute to check in with their vulnerable kids, maybe missing a sign or a clue that all wasn’t as well as it could be that day.
I’m lucky, I work at the school my daughter attends, so I’m always helicoptering around, and my daughter’s team couldn’t do more to help her. I hope every other child around the UK is just as well looked after. But I worry, truly, that unless school funding is adequately addressed, the cracks will start to show still further, to the point where children are put at risk.
In the meantime, I celebrate the education she receives, the care she gets and the opportunities she is given. She’s off to Germany in a few weeks time, on a school enrichment trip where she will have the time of her life. The risk assessment has happened, the staff who will be caring for her are trained and prepared. I can’t say I’m not worried about her, of course I am, but I can say I’m happy to hand over my most precious possession to them and not sneakily book an extra ticket in the hotel next door, just in case.
I salute those staff. It’s hard enough being a parent of one or two children and managing a serious medical condition on a trip away from home, but I can only imagine the commitment and dedication it takes to look after one in a bunch of 30, where none of them are your own. The additional responsibility of caring for a child with a chronic condition, on a trip abroad, with the possibility of overnight medication and the unknown factors of climate, food and language, is enormous. Even those Cath Kidston Supermums who can juggle cake baking, museum visits, a party of twelve 5 year olds and the simultaneous construction of a cheese-based replica of the Houses of Parliament would baulk at that one, but teachers are expected to take it all in their stride, and they do.
So thank you support staff and teachers everywhere, who do so much more than it says on the job description, so much more than it says on the First Aid tin.