I was going to do some work today. I’m on leave till Jan 5th but have a chunklet of work to catch up with. This is something I didn’t really have before. Not because I’m great but because I just did my work. More of an obedience type thing really. These days I have a hell of lot of other stuff to engage/deal with. On top of ‘work’. Another consequence. Another thing on the pile of ‘now life is like this’.
But I didn’t get round to working. I stayed in bed for ages, got up and just didn’t want to. Christmas was a pretty agonising experience. And I felt knackered. This evening I caught up with some reading. Recent disability related articles. This was a bit of a treat really. Some right old tasty morsels. Though a lot of returning to the distinction between medical/social models of disability. [Medical model: disability is an individual, tragic thing to be cured, social model: it’s to do with the organisation/structure of society rather than an individual problem].
I got to thinking about the Verita investigation into LB’s death. This (excellent) report was kind of something and then, in many ways, nothing. It clearly stated that LB’s death was preventable [howl] and carefully laid out the reasons why. But nothing has actually happened as an outcome. And the micro details remain largely unremarked upon.
Ironically, having spent most of my postgraduate learning immersed in disability studies, what happened to LB, and what is detailed in this report, kind of turns the medical/social distinction upside down. The health professionals involved collectively denied that LB was having seizures. Despite his diagnosis of epilepsy and me stating that he was having increasing seizure activity. They kicked out the individual impairment argument.
Why? Why would you do that?
- They were simply crap?
- They couldn’t give a shit?
- They were arrogant enough to make pronouncements based on, er, fuck all?
I don’t know (though I suspect it could have been a combination of the three).
I fail to understand how anyone with (any) medical training, would argue that someone with a history of epilepsy (hard won but ‘granted’ eventually) was not experiencing seizures. Why would you? For what reason? For what outcome?
All of the above which you identify and perhaps, as is my experience with some people who have worked with my son, they simply are not mindful and don’t see the clinical evidence. That can be because they don’t have or take the time to see the person. I don’t know really but I do know your message is strong and powerful and you need to make sure that the world hears it.
I think probably all three of those reasons as well. Plus a couple of other common assumptions: (1) mothers never know what they are talking about, and always exaggerate (2) maybe epilepsy has been de-stigmatised to the point that it has been forgotten that it can be lethal or maybe (3) If you don;t have the staff, the expertise, the will or the gumption to provide proper care and the consequences of failing are easily dealt with…why strive for better?
Sara Martin was diagnosed with Lennox Gastaut epilepsywhen he was two, 36 years ago. Absolutely clear no doubts. As soon as one becomes involved in social care it might as well have been diagnosed as the dreaded sprog. No one had the least idea what I was talking about. I hold all Martin’s medical reports, handed them over to the Court of Protection, and absolutely nothig happened. Epilepsy has the most dismal PR imagineable. Anyone with epilepsy should have written protocols for all their types of seizures with them at all times, and LB should never have been admitted to the Unit without all this being checked. SUDEP sudden death in epilepsy do a good job, but the word just doesnt get out. I expect you know all this anyway. Also there is a dearth of epeliptologists inthe UK, I have tried and tried to find one who will do a capacity assessment based on Martin’s diagnosis, and failed. Also epilepsy does not come under the MHA although it seems to come under the MCA. All three of your points apply
Although people with learning difficulties have been managed by medics for the past 70 years or so, they have had poor medical treatment most of the time. The University of Bristol CIPOLD Report affirms that the neglect and ignorance shown is sometimes lethal. Death rates in the old institutions were very high, epidemics frequent, and despite being ‘nursed’ healthcare was often lacking. Why? The best people don’t go near learning disabilities, unless they are motivated by things other than career ambition. They do surgery or cardiology, they can make people better, whereas people with learning disabilities will never recover from their learning disabilities. Medical professionals like people they can cure. I do wonder also whether the social model has in some respects done people a disservice in underplaying the value of medical assistance. In he classic social model medics are the enemy, to be avoided at all costs. Instead there is a thread which says we want people uncontaminated by training in disability because they will oppress us, we want Personal assistants whom we train ourselves. So there has not been anything g like enough exposure to disability in medical curricula. And the arguments of vocal physically disabled people do not necessarily consider the needs of others who Re less capable intellectually. Just a few end of year musings.
Keep up he good work, this blog is fantastic,
My son died of SUDEP. He had undiagnosed epilepsy. Undiagnosed because only we – his parents – had ever witnessed a fit, (a full-blown tonic clonic). Our reports to the paediatrician that there were signs he was having occasional nighttime seizures were ignored because no-one saw them. Unless a ‘professional’ witnesses a fit, there is no epilepsy diagnosis it seems and therefore no medication and I think this laissez-faire approach is backed up by NICE guidelines. A parent’s opinion is not good enough for the professionals. A sleeping EEG was regarded as ‘inconclusive’, yet at his inquest, the same EEG was reported as ‘abnormal’. An assumption perhaps that it is normal for a person with LD’s to have an abnormal EEG and for it to provoke no further action?
Epilepsy and aspiration are the two biggest killers of people with LD. Epilepsy kills more people than Asthma and AIDS put together, yet has a much lower profile than both.
Jools This is so awful I dont know what to say. Surely Epilepsy Action should be out there shouting loudand clear all the risks
That is so awful, Jools. I’m sorry. It is ridiculous how difficult it is to get a diagnosis of epilepsy. Connor had so many seizures before he was diagnosed and then he was never referred to the first seizure clinic like other patients would be. He was just given some medication from the 1950s. It is all so blinking wrong.
If mothers and good care givers can’t get any one to listen when a child or young person is banging their head on the floor, having absences, or full on tonic clonic episodes surely the organizations out should be educating everyone. As we have said before there is enough money being spent education has to be the answer to avoid more familiesthis hurt and loss.
Was just thinking about this and about how part of them knew he had epilepsy – the move downstairs, ordering of the monitor- and part of them didn’t. It’s as if they were doing their jobs without thought or conscious effort. The people who should have been responsible didn’t see Connor as a whole, and, as so often in the NHS, his care was fragmented into unconnected pieces. At some stage also, someone must have skimmed his records and falsely summarised the wrong things about his epilepsy.
I still struggle to understand why parents are so often disbelieved. I don’t know where this lack of respect for their expertise has come from.
I don’t know why they ignored the signs that Connor was having seizures. Did they think that because he had a learning disability that he must be faking them? Why would they think that?
Am hoping that you start to feel stronger soon. It is good though that you have taken a little time to just retreat for a while. Lizx