It was last August when we took Molly into hospital for the second time in nine months. Right in the middle of the summer holidays, right in the middle of the night.
She was high, not in a marijuana way, she has Type One Diabetes and she had been running inexplicably high blood sugar readings for the last week or so, and we were hating it.
You see high blood sugars in a diabetic over a sustained period of time cause all kinds of complications in later life. Search Google and you will see all kinds of horrific images of people with diabetes missing a limb or with grotesque foot infections or tooth decay.
As parents, we do our part, whilst Molly is only small we assume the role of her pancreas whilst teaching her how to care for herself, and try to keep those numbers down to ensure her future looks healthy and as long as anyone without Type One.
Forgive the science lesson, but to explain further, high blood sugars can cause something called Ketones. These nasty little bastards poison Type One Diabetics. I see Type One kids as warriors, and ketones are the opposing force on the battle field. When ketones appear and develop they can cause coma and death.
As I said, nasty little bastards.
So back in August, when Molly was running high sugar levels and no matter how much extra insulin we injected into her, we couldn’t get her numbers down and so we tested for ketones. She went to the loo, I placed a slim strip in her urine as she peed, causing much hilarity on her side as she soaked my hand with wee, then, I watched to see if it changed colour to indicate if she had ketones present.
At 2am, that August night, the strip turned a ferocious purple, screaming at me that she had lots of ketones – the maximum the strip would show, and apologies for my language, but it scared the shit out of me.
We went to A&E (thanks taxpayers), and they took her blood sugar reading, it was an angry 22. (Normal is 4-8). Then they produced a second hand held machine and with the same drop of blood protruding from her finger they took a ketone reading.
It was 0.6. – not to be ignored, but nothing like the life threatening purple I had seen at home on the urine stick.
Confused I asked the nurse to explain, and she told me urine sticks were not necessarily the best way to measure ketones, like all things diabetic, accuracy is found in the blood.
It would seem my trip to A&E was not needed (sorry taxpayers) and we went home. The next day, my outstanding nursing team gave me a blood ketone meter. We threw the urine sticks away.
Why am I telling you this?
I want to share a few of the fears of what it is like to parent a diabetic child. It is a complex, unpreditable condition which needs to be controlled in order for the child to remain in good health. High blood sugar can cause comas, low blood sugar can cause seizures and in extreme circumstances strokes. Both can be potentially fatal. But medical science is a fantastic thing and there are machines which can protect Molly, and all warriors like her, and make the path of parenting easier.
But medical science costs money, and access to these machines is based on funding, and funding is allocated based on where you live.
It is a postcode lottery.
I know diabetic mums fighting to get a ketone meter, because their Primary Care Trust hasn’t got funding yet. Ketone meters can save lives of type one diabetics, trips to A&E far exceed the cost of one, but yet parents are fighting. In my local area, I have easy access, in fact I have two meters – how can this be fair?
Insulin pumps are not offered as an alternative to injections, instead they have to be applied for, argued for, and assessed for. Our pump changed our life, this may not be the same for all, but how unfair is it to not even have the choice of having one.
I know children who have meters that read their blood sugar levels without pricking a finger. Molly’s fingers are battered and bruised from her 8-10 blood tests a day. Some postcodes have access to meters with alarms that cry out in the night when blood sugars start racing dangerously high or falling dangerously low. We don’t have access to that in my postcode, so I set my alarm for 12am, 2am and sometimes 4am. Because as I said, diabetes can be fatal, and I am not taking that chance.
It is unfair, that your postcode should determine your access to better care. Parents should be able to focus their time on caring for their kids, not fighting to get the tools they need to manage this condition.
Type 1 Diabetes affects 400,000 people in the UK, it is not caused by eating too much sugar. It is caused by a malfunction of the immune system which then forces the body to destroy cells which produce insulin in the pancreas. In 2012, The Guardian reported that 80% of NHS diabetes spending goes on treating complications such as blindness, strokes, amputation and heart disease. We are treating the outcome, rather than trying to prevent these horrors in the first place.
But, at this moment in time, kids with Type 1 are getting care and access to new technology based on where they live . The Postcode Lottery is alive and well, in different parts of the UK parents are fighting for access to additional test strips (to monitor their children’s bloods). Some kids with Type One are given Disability Living Allowance, others are refused. Not to sound like a petulant child, but it is so unfair.
I want the best care for Molly, diabetes will only ever be something that serves to make her stronger. Like all parents, I will fight for my child. And it seems, fighting for equal care and access to technology to treat an incurable, crafty, and potentially fatal condition is a rod all parents of Type One Warriors need to carry.
It simply isn’t good enough.