Type One Diabetes: Making it fair for my Warrior

Type One Diabetes: Making it fair for my Warrior

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.

Type One Diabetes

Blood testing for sugar levels and Ketones

 

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19 Comments

  1. January 6, 2014 / 12:17 pm

    Oh this is awful Jane. You hear about postcode lotteries all the time, but only when you read something like this – so close to home – that you realise how truly awful and upsetting it is! 🙁
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  2. January 6, 2014 / 12:27 pm

    I completely agree with you. It’s shocking and absolutely wrong that your post code can decide over life and death. Clearly, it should be the same rights for everyone and as you say these readers and pumps don’t only save lives, but also money that the NHS could spend on providing them to those that need it.
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  3. January 6, 2014 / 12:53 pm

    The thing that makes me so sad and angry, is that everytime I read a blog post by a mother who has a child with health issues of some kind or another, they are always having to fight battles to get the best care and treatment for their children, and this is on top of the additional hard work they already do in order to be brilliant parents to their child and meet their needs. You must barely have the energy for battle with the broken sleep, and yet you are still here on the frontline drawing attention to an important issue for all parents and sufferers of Type One diabetes.
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  4. January 6, 2014 / 8:59 pm

    Oh what a nightmare. As the daughter of a diabetic, I had no idea of this problem. My dad had the normal blood testing machine, I can imagine its something you can never get used to using on your own child. It makes my wince, every time I see my Dad use it. I hope you get help, I really do.
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  5. January 6, 2014 / 9:20 pm

    Oh Jane – I honestly had no idea just how varied support was across the country. It’s ridiculous that things like this aren’t consistent and that PCTs don’t seem to consider the possible long term cost to the NHS vs the short term one of paying for kit like this.
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  6. January 6, 2014 / 9:45 pm

    It infuriates me that there is this discrepancy of care across the country and I agree that the NHS is programmed to treat problems rather than tackle the problems before they arise. Your daughter is so lucky to have you as her mum, you are a warrior too.
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  7. January 6, 2014 / 10:03 pm

    The DLA has a lot to answer for, inconstistency in care is not fair for families already dealing with the stress and pressures of illness – because if one person in a family is ill the whole family will at some point suffer to some degree 🙁
    Makes me really cross :/
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  8. January 7, 2014 / 10:52 am

    what meter measures blood glucose without pricking the finger? I wasn’t aware there were any approved and on the market?!

    • northernmum
      January 7, 2014 / 5:01 pm

      Hi, You can get cgm’s they don’t completely eradicate finger testing but they so limit it as it is atattched to the skin as a sensor.

  9. January 7, 2014 / 1:44 pm

    I couldn’t agree with you more! I think it is wrong that a postcode can detect what help people get and it makes me so angry. Especially when something is so important. However, and if I am wrong please forgive me but I would love to know someone who is dealing with these problems opinion. I also don’t agree that someone who is battling diabetes should get all prescription costs covered regardless of what the prescription is for. Anything related to the diabetes – hell yes, but other stuff? I have family member battling life long illnesses paying through the arm for meds related to their life threatening illness. I think it needs to be a level playing field for all!
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  10. January 7, 2014 / 9:35 pm

    Bloody hell that’s awful, I had no idea! Jane, you rock. And Molly is indeed a warrior xx
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  11. January 7, 2014 / 9:52 pm

    it is mental that this postcode lottery is allowed to exist. absolutely frightening x
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  12. January 8, 2014 / 9:34 am

    As an adult with T1, I also suffer from the postcode lottery. But I am starting to realise that we should be looking not just to the NHS to sort out the inequalities but also to the pharmaceutical companies who continue to charge the NHS such high prices for things such as the test strips you mention. I discovered each test strip costs the NHS about 30p whereas the Indian health department have funded research to develop their own for equivalent of 4p. Just think about how many pumps could be bought with the money saved on this.

  13. January 9, 2014 / 5:48 am

    I wish I had crossed your website when I was browsing the web to try to figure out why my 14 yr old boy began bedwetting (3x in 3 weeks), feeling extremely fatigue and then ended up with thrush to top it off .
    The thrush was the final call that ended in me deciding to take him to the Urgent care facility. Unfortunately, all they did was sent us home with an antibiotic to treat the thrush. I questioned the doctor after finding on the internet that thrush in a teenager is very odd. The doctor said most likely it was brought on my infection.

    The scare came when our son woke up that same night with difficulty breathing and dizziness! Off we went at 3 a.m. to the ER at the local hospital…within 5 minutes he was seen by the triage nurse. His body temperature was 95* & the oxygen sensor was not reading on his finger. He was rushed to a room and within a matter of minutes I was told he was DKA and that he had to be transferred to another hospital and admitted to PICU because he now has Type 1 DIABETES! Little did I know that he was critically sick!

    Our son had every symptom of a Type 1 Diabetic. It is so hard not to feel guilt in recognizing this sooner since he had ALL of the symptoms. I knew in my heart that something was wrong but couldn’t put my finger on it!

    What appalls me the most about his story is that the urgent care center that we took him to early that day did not put all of his symptoms together and ask more questions or run tests/lab work. All it would have taken was a simple finger prick.
    DKA hit us blindsided recently posted..Type One Diabetes: Making it fair for my WarriorMy Profile

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