We went to London this morning, to change the contract phone Tom got for his birthday two weeks ago. (Don’t ask, but Three mobile did not come out well in this episode and Rich nearly got arrested). We did a back street traipse to the Apple store in Regent Street, to avoid Oxford Street. Way too many memories in Oxford Street. But memories are everywhere. Dripping from everywhere.

In the entrance to the shop, was a large picture from Up. LB had the first seizure we recognised as a seizure during Up. He became hugely distressed about the mild peril to grandad, Russell and Dug and behaved so oddly we started to think about epilepsy. Back in the day.


After that, we got a referral to neurology, but were discharged by the neurologist who said he needed to control his anxiety (more star chart type advice). Yes, the writing on the wall – of catastrophically poor care – was apparent even then. A set of tonic clonic seizures involving the (lovely, lovely, as always, paramedics) a short while later led to a re-referral. The fact he had, in the interim, grown too old for children’s services, meant the referral was bounced back from the hospital and the GP had to re-refer him to adult neurology. Delay was also an integral part of catastrophic care (as was the persistent lack of listening to us as LB’s parents). But there was no concern, no reflection about the delay in diagnosis (and potential risk of this delay to LB). We just had to suck it up.

The diagnosis of epilepsy arrived in the end. I mean I ain’t no medic but having witnessed him having a tonic clonic seizure in our living room with the backdrop of the paperwork detailing the previous seizures, I could have diagnosed him myself with complete certainty. But process are processes. And, with the NHS, the wheels of bureaucracy turn pretty slowly when you’re negotiating the healthcare of learning disabled people.

The medication prescribed at that point controlled LB’s epilepsy for over a year until new drugs were introduced to try and contain/control/reduce his increasing mental ill health in December 2012. And the seizures re-started.

I walked behind Rich, Tom and Owen after the phone was replaced. Reflecting on the enormity of the loss of one of of our cubs. The one who arguably needed the most protection. But then the rage kicked in again, as I thought about how we’d kept him safe for 18 years. How we slept in his room the night after he’d had his seizure at the end of December, last year. The thought of leaving him alone that night was too awful. Rich and Tom piled in too.  A sleepless, uncomfortable, stressful night. In the morning, after bed shifting and movements, it was LB and I. He’d slept brilliantly.

Sadness on sadness. With a rage topping.


3 thoughts on “Up

  1. Bastards…… that good….. they are more than that………… “go get them”

    Sara – you will never let go of his hand……. xx


  2. I hesitate whether to write this or not. Is it a good or a bad thing, I’m not even sure.
    The fact is I empathise so much with your initial struggle to get LB the neurological care he needed and deserved. I had great problems myself but do not have a learning disability, albeit I do have a physical disability.

    In my case when in my early twenties I was given an “urgent” referral via my GP. This was 3 months away. During this time I was rushed to hospital no less than 9 times by blue light ambulance. Yet I did not see a neurologist once because I “already have an urgent appointment”.
    So I was sent home with no regard for my safety, my friends and family taking it in turns to be with me 24/7, only to be rushed back to hospital a few days later, my life in danger on more than one occasion.
    Once I finally did see the neurologist and started treatment, the seizures became manageable within a few weeks. Those 3 months of danger and misery were completely unnecessary.

    I questioned the treatment I received and was told it was a nationwide problem due to a lack of neurologists and underfunding. It is therefore likely the troubles we both encountered are endemic to the system rather than particular to our being physically or learning disabled.

    This does not make it ok. It does not necessarily make those early mistakes and lack of care (in every sense of the word) forgivable. I hope though that it may make it feel less personal. Whether that helps you or not I’m not sure. I’m writing this in the hope that it might.

    As to what happened later I simply have no words to express my disgust and anger. I can’t begin to imagine how you feel. I wish you and your family strength and courage.
    With best wishes xx

  3. Pingback: More than one life. | Who By Fire

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