It’s been 3 years since we began our fight to get help with kiddo’s sleep disorder. It actually got off to a pretty smooth start when at our first ever paediatrician appointment we were offered melatonin. This so called wonder drug by many was seen as the answer and at first we were in awe of the fact that I no longer had to spend a minimum of 3 hours coaxing kiddo to sleep. Once we started the melatonin he was asleep within 20 minutes (sometimes 20 seconds if we timed it right) and he would sleep through the night. It was life changing, until it stopped anyway.
As kiddo grew up his brain began to develop and change so rapidly it seemed the world couldn’t keep up. We went from having the answer to being completely helpless, and essentially being held hostage by his lack of sleep pretty much overnight. So as you would expect we went back to the paediatrician to ask for help. It wasn’t the lack of knowledge around sleep problems that shocked me at first (although it does now), it was the complete indifference and almost unwillingness to understand our problem. The front line staff just didn’t seem to care. Lack of sleep was not regarded as a problem that was important enough for them to deal with.
Through nothing but a twist of fate we were referred to a learning disability nurse. We had no idea that they specialise in sleep support and the person who referred us hadn’t even used lack of sleep as a reason for us to access their service. And so began the marathon of sleep diaries, day time diaries, new initiatives and advice surrounding sleep. Which led to absolutely nothing. Now I don’t begrudge the nurses this time, in fact it was essential. It was proof that our child was suffering from a disorder over which we, or medication for that matter, had little control. And so we returned to the paediatrician. Met with the same indifference yet again, we took matters into our own hands and visited a private service who evaluated kiddo for any breathing based sleep disorders. Once again, he was found to be clear of any problems.
At this point we were at least 18 months in to surviving off an average of 4 hours sleep a night. Now I’m sure some people are thinking, “well that’s all I get and I’m fine, what’s your problem?”. Well my problem is two things actually. Number one, you need a damn site more than four hours sleep. Look this up immediately before you give yourself a potentially terminal health problem and number 2, i’m guessing you’re not spending your day chasing around after a hyperactive, impulsive child with no safety awareness whatsoever. Moving on.
Whilst we were accessing the private clinic we were given a name. A name!!! Someone who could potentially help us. But there was a problem, he only accepted NHS patients. I was confused and down right angry at this point because why on earth had we not been referred before? Why was our lack of sleep not worthy of an NHS referral to the big smoke?? (We live in the shire a four hour trek away, but quite frankly I would have travelled to Mars at this point). So yet again I approached our paediatrician. “The GP has to do it”, was the response I got. Of course this was complete rubbish and simply left me fighting for another 3 months and liaising between GPs, the London hospital and the local paediatrician. At the end of my tether I made one of the best decisions I have ever made, and requested a transfer to a new paediatrician. And we started again. Almost immediately the referral was made (apparently by the old one but by this point I was too tired to care).
And so off we went to London. It was here we met a man who for the first time in our whole journey actually appreciated what lack of sleep was doing to us. The medical professionals hadn’t cared, social services weren’t interested because our child had no overnight medical needs and people were happily passing us around like a newborn baby who wouldn’t stop screaming.
But why has it taken so long to be taken seriously? Why is lack of sleep not considered a chronic health issue? Since all this began I have been diagnosed with chronic fatigue syndrome, fibromyalgia, several infections I haven’t been able to fight off without my GP prescribing me considerably higher doses than normal and im now at considerably higher risk of heart disease, stroke and cancer. So what is it?
In my personal opinion, the following has contributed:
1. I’m a mum. Kids don’t sleep right? That’s the expectation. You’ll survive. Well if I do survive this I’ll be setting up awareness campaigns about how a human being can’t survive the new born phase for over 5 years with no break whatsoever.
2. Sleep is for the weak, apparently. Actually, sleep is for the strong. Next.
3. We live in a reactive society where budget cuts mean that no one will help you until you’re at the point of no return. When I get cancer I’ll be given treatment. I’ve been referred to clinics for my new (and totally avoidable) health problems. In fact the government will have spent considerably more on me now than if they had given our services enough money to take me seriously three years ago. Reactive policies are ineffective, more expensive and risking people’s lives. It’s time our government gave this serious consideration.
4. We are all tired apparently. Everyone complains every day that they are tired. We have thousands of cosmetic products available that can stop you looking “tired”. Our society accepts tiredness as the norm. We are all officially idiots.
5. The education of our front line medical services on the consequences of sleep deprivation and how to help and support people is poor. Now this I know is being tackled by the London Evelina hospital and thank god is all I can say because without forward thinking individuals like themselves, our country would be heading for a certain pandemic of sleep deprivation diseases and illness.
So there we go. If you’ve been fighting for years to get help and haven’t made it passed the first hurdle, it isn’t you. You’re not going mad (well you probably are a little from sleep deprivation). Our society just hasn’t caught up with the severity of such a common problem for parent carers, which in the end Prime Minister, will simply cost you billions.
Thanks for reading,