Pasta, cheese and epilepsy

I found out this week from an unusually humane ‘official’ source that the Sloven staff disciplinary actions for a chunk of staff were very thorough and a range of actions were taken. Disciplinary actions for another ‘type’ of staff were deemed unnecessary. These staff had done what they could reasonably be expected to do and this had been agreed by an external bod.

‘Mmm.’ I said. ‘Good to hear it was a thorough process, but odd about the latter decision given we referred a member (of favoured staff) and this has been the subject of serious investigation since last spring.’

Nothing like an equal playing field.

The more I read or get told about what happened to LB, the more I despair. Sloven Towers seems to have anti candour armour with Deny, Deceive and Delay stitched throughout. The 3Ds. Allowing no space for remorse, sadness or open reflections about what happened. Reading the various reports/records/FOI documents, there was no epilepsy. No seizure activity.

This is core CIPOLD fodder really. LB was ‘learning disabled’ so his right to any other diagnosis was compromised from the off. He had to wait the best part of two years to get an epilepsy diagnosis (despite two ambulance trips to A&E and various other reported seizures involving paramedics). While the earlier absence type seizures were puzzling the tonic clonic numbers that followed left no doubt.  A tonic clonic seizure is, as anyone who has seen someone experiencing one, clearly an epileptic seizure. A harrowing experience.

LB’s eventual diagnosis was pretty low key. Some 1950s medication prescribed by an A&E doc, an appointed neurologist, but no invitation to attend ‘First Fit’ clinic at the John Radcliffe Hospital. A handwritten note querying this is scrawled on hospital records but notes are notes. Not action. Maybe he’d had too many ‘first fits’ to qualify for entry to that particular club. Or maybe the learning disability label meant such an invitation was inconceivable. Who knows. It didn’t happen.

Soon after LB died someone from Young Epilepsy contacted me about speaking at some school related event about epilepsy. During the telephone conversation, when it became apparent that LB had been at a special school, the invitation was rescinded and the call ended. Wow. I thought. Sitting at work, receiver in hand. Denied epilepsy legitimacy in death as well as life. Wow.

The canyon that separates ‘official’, publicly funded, engagement with what happened and our experience remains immense. One of Tom’s school mates said to him this week that coming round to our house now is kind of like having pasta without cheese.

I so know what he means.

Imagining Sloven or Oxfordshire County Council (and probably other) peeps reading this, I can hear them bleating “There’s no such thing as cheese or pasta. He’s talking rubbish,” without missing a beat.

Because LB didn’t matter.

old pics (1)

7 thoughts on “Pasta, cheese and epilepsy

  1. I was reading your blog. You were warning them about epilepsy, and they ignored you. (Been there, done that, feared for you and Connor) You were right and they were criminally, negligently, wrong. And they are STILL trying to pretend that you are the problem?

    Please don;t let them. Ever. I know it must be dreadful, draining, unbelievable. But they usually get away with it so easily.

  2. Sara Martin has had Lennox Gastaut syndrome epilepsy since the age of 2. I have all his medical notes. Never queried until we go to the Court of Protection 2006.Then an absolutely crazy diagnosis of autism so they could section him in a high security unit. Then learning disability (which is part of LennoxGastaut) Mr Justice Charles states that his problems are more complex than just epilepsy, and tries his damndest to get his sectioned again. Martin went voluntarilly into the Ridgway unit, but without his emergency pack, which contains all the protocols for convulsive status and non convulsive status. Since then 2007 there are NO PROTOCOLS IN PLACE

  3. Thought about you lots on Saturday when Christian’s happy relaxation in his bath of deep bubbles was interrupted by a tonic clonic seizure..It has happened before and odds are, will again …but we have plans/ strategies and all that.

    Am writing really ,to agree that there is deep discrimination out there when Learning Disability and Epilepsy are on the table for discussion and advice.I have experienced it , you have experienced, others are undoubtedly feeling and seeing it.

  4. Not just epilepsy other conditions and/ or illnesses get swept under the carpet. For 3 years I’ve been asking for support for Lu’s anxieties/ tantrums/ meltdowns. FINALLY got a referral to CYPS (mental health team) – and explained how I worry about the physical effects of such stress and rage – we’re always told how bad it is for us. Psychologist shrugged seemed more interested in the impact it has on us not Lu!

  5. How the hell could he not matter.
    Bloody handsome and gorgeous like that.
    He was something else and real people can feel and see that.

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