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.