Models of disability and ‘real’ epilepsy

Having some serious ‘what’s the point of a lot of academic research (my own right up there with a few others) thoughts at the mo, particularly given the wealth of research around learning disability provision. We sort of know so much in many ways and yet so little has changed for learning disabled people in the UK. Yes, there are pockets of good and brilliant stuff (anecdotally, largely where some cracking person or group of people have got together to just do something.) But overall, it’s pretty crap or worse.

Yesterday, this was tweeted by Chris Hatton…


Whoa. Really? Really???

Half a £billion a year? For being warehoused, out of sight, on the edge of towns. Restrained, subject to abuse or other acts of violence and neglected.  Half a billion???

The Winterbourne Concordat (sigh) aimed to get people pretty much out of these hell holes by June 1st. The outrage generated by the original Panorama expose of abuse has clearly lost any welly. People have moved on, learning disability really ain’t sexy and no one with any influence is prepared to do anything. (I’m losing count of the people who mention how well we’ve done to get the publicity/momentum we have on #107days… It’s like trying to crawl out of a 30 metre deep mud pit with some cocktail sticks and a cotton reel).

Today Rich and I had a ten minute revisiting what happened to LB (various versions of this happen several or more times a day… typically underpinned by despair, disbelief, rage, intense sadness and inevitably tears). Today we focused on the consultants involved who, in their wisdom, decided to ignore, pretend or insist that LB didn’t have ‘real’ epilepsy and wasn’t having increasing seizure activity.

(This reminds me of a conversation with someone who said (after LB’s death) that she worked with children with epilepsy who had “proper seizures”.) Eh? LB was ‘medically’, ‘officially’, and about as blinking properly as you can be, diagnosed with epilepsy. (Eventually). Numerous people, us, his teachers, paramedics and A&E staff witnessed him having seizures. I’ve never seen anyone having a seizure before and I saw him having various types of seizure include tonic clonic which really is in your face seizure activity. He had epilepsy.

His sensitivity to changing medication was also known and recorded. The consultants at the unit were told that he was having increasing seizure activity, by people who knew him better than anyone. And yet they sat in a meeting two weeks before he drowned in the bath and decided he wasn’t.

In a unit costing around £3500 a week.

In some ways the cost is completely irrelevant. We’re talking about the life of a young dude who had only just nudged into ‘adulthood’. But at the same time, the enormous cost of these places contrasted to what’s actually delivered speaks volumes about the ambivalence and (maybe fear?) attached to people like LB. The cost of keeping em penned away from the rest of us is paid. Seemingly indefinitely. Seemingly without question. Even when the extent of the atrocities that happen in these spaces are known about.

And any aspect of their lives, including clear, pretty straightforward medical issues can be ignored. The ‘learning disability’ trumps all.

The disability (studies) movement in the UK has been caught in circular discussions/debates/disagreements and revisiting distinctions between social and medical models of disability for years now. Pretty tedious and dusty really. But what’s astonishing, and illuminating, is that the medical profession denied LB the right to be epileptic. They denied him his medical label.

They denied him his right to be epileptic. Because they couldn’t see beyond his ‘difference’. And this, ultimately, denied him his right to life.

Anyone got a copy of the Hippocratic Oath handy?


7 thoughts on “Models of disability and ‘real’ epilepsy

  1. I am trying to answer you but I cant. Its too awful. Martin has Lennox Gastaut epilepsy, and I cant even publish what happened regarding this in the Court of Protection. I can write (I hope) complete and total abyssmal ignorance bigotry discrimination about epilepsy. I had to fight for months just to get an EEG done to go before the Court, and when it finally reached the Judge it was ignored

  2. Oh my fucking God. My client’s health deteriorated suddenly with no warning and she began to experience obvious seizures, but I was repeatedly told by the (general medical) that ward that it was ‘behavioural.’ Bullshit, they wouldn’t listen to me or her fam….until she had a fit that wouldn’t stop and needed CPR. Then she was moved wards and then they started on the ‘behavioural’ strategy for not referring to neuro/EEG etc. She’s now in a fabbo care home and the LD nurses eventually sorted out the idiots in the hospital. Totally embarrassing.

  3. In my life as a social worker I had to arrange some respite-care for a woman with dementia and epilepsy. She had fluctuating capacity but wanted to go to a nursing home permanently in Wales (out of our area) that she and her daughter had been to visit and really liked. While waiting for a vacancy she didn’t want to go home hence a temporary “placement” elsewhere.

    In terms of the epilepsy I consulted with her, her daughter and her GP to write an epilepsy-specific care-plan for the respite-home to follow and made specific and repeated reference to it in all my conversations with the home.

    When I went to visit her for a review she told me that she had had a seizure that morning at breakfast and had been “ignored” by the home staff. I brought this up with the manager who told me “oh that woman makes stuff up all the time, you know she’s got dementia don’t you?” And then made the “cuckoo” sign by her head. I reported this and amongst other incidents there was an investigation and various changes in staffing. Awful. And too common.

  4. Anyone with epilepsy should have an epilepsy care plan (or “passport”) which they have on them at all times (or better still a chip in a bracelet). This must cover all types of seizures, medication, emergency medication allergies etc. The person with epilepsy should also have on them at least three days medication, and emergency meds. The average A and E is not competent to dealwith epilepsy emergencies. Archie Boy your client was lucky that it got sorted out.

    • My son has been taking epilepsy medication for 25 years. He is 42. He was 17 when he had his first tonic clonic during his stay in hospital after a hip operation. He was always a really happy caring man, that was before they introduced lamotrigine into his drug therapy. I strongly believe it was that drug that started his depressive moods. I said as much to his epilepsy nurse who said ‘ but he (my son) was angry and aggressive to you in hospital’ Yes he was but he was on his back for nearly 3 months with a pole between his legs and I do not suppose anybody else would be singing ‘the sun has got his hat on’ if they were in his position. I hate these drugs. Tegretol and Lamotrigine are also used in the treatment of bi-polar. They are mood enhancers.. Tegretol is also an enzyme inducer, it lessens the potency of lamotrigine when taking them together. Therefore anyone (psychiatrist) should be aware that when you remove Tegretol from the drug regime you will be raising the toxicity of Lamotrigine. However even though I made my son;s psychistrist aware of this, (he did’t like being told this by me, an underling) he chose to ignore me. Three weeks after his last tegretol tablet, my son started having the most awful hallucinations and nightmares and my husband and I were really scared and absolutely terrfied for him and us. We felt utterly helpless. I was sure he was toxic with Lamotrigine because he no longer had Tegretol ‘watering it down’. Pyschiatrist disagrees. Psychiatrist has never met this situation before. Psychiatrist refuses to ask for guidance from manufactuers. It was only after the pyschiatrist took down Lamotrigine by 100mg and put Tegretol back did he stop having the nightmares. Even so he is not the same son anymore. He has developed pyschosis and talks to himself and looks around and stops and ‘freezes’ when he does anything like walking or eating or playing his tapes. He lies on the sofa most of the day (something he never did before). We have to watch him all the time because he is in danger of falling over when he suddenly freezes. He fell and broke his nose, and now we will not let him out of our sight. We thought we had it hard in 2010 when my son refused the alternatives offered by my LA after they shut down his day centre, but al least he could play a part in the family household. Not now he has changed so much. I hate these drugs and I hate the way pyschiatrists talk down to the carers and their loved ones.

  5. Pingback: Day 86: Communication and being human #107days | #107days

  6. Pingback: Those blinking ‘models of disability’ again | mydaftlife

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