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To think that the NHS should know that people with epilesy can drown in the bath(34 Posts)
Connor Sparrowhawk was just 18 when he drowned in the bath in a Southern Heath NHS Unit. They knew he had epilepsy, and they failed to monitor him.
The Report has unsurprising found his death was preventable. This simply should not have happened.
Stanley yes DD got blue badge as she gets HR mobility on DLA due to her epilepsy and other associated issues.
Does your DD get HR mobility in their DLA? If not then some councils will give blue badge if epilepsy causes issues with walking which it would as unless seizures controlled u never know when one is going to happen.
The epilepsy nurse just doesn't have a clue and when DD got the badge I felt like sending a little thank you for her kind help (NOT!)
Sorry to hear that Hemlock, sad tragic loss of a life.
I'm actually a nurse too so obviously I know to be careful with patients who have epilepsy, if it's not well controlled they have cotsides and an observation bed, also we have showers in our ward not baths anyway. Also I make sure they get meds strictly on time, not something I always bother with for myself but I know I should.
To be fair I'm a lot more careful with my patients than I ever am with myself. When you have epilepsy you can get blasé about it like with many conditions and I probably am a bit too laid back. But with patients I treat them like I would want my family treated.
Hmm, I have epilepsy and I go in the bath, don't really think about it tbh. My epilepsy is fairly (not 100%) well controlled.
My sister doesn't like me going swimming alone when I'm on holiday with her but I don't like being restricted really; I can understand her worrying because the flickering sunlight causes fits.
I lost a friend of mine in the same way when he was in his early 20's, a known epileptic who had a fit and drowned in the bath whilst in hospital.
That's so, so sad. My friend's mum had epilepsy and drowned in her bath when my friend was 15. Such a tragedy and common sense that this poor boy should have been cared for/monitored better.
Sparkles you have just reminded me!
We obviously spent a lot of time in hospital when DD had cancer. she started having siezures about a month into her treatment.
So the next time we were admitted I asked for some bed sides
After a bit of faffing about this nurse came back with one.
She asked what side I wanted it on and looked surprised when I said BOTH
Spartak of course you are not all uncaring bastards! I have a great deal of regard for nurses and doctors. Unfortunately it is your less than with it/rude/uncaring colleagues who tend to stick in the mind.
10 years on I can still remember the ones who were horrible to me or DD. Every inch of them.
I once had a seizure in the bath when I was about 15. My mum had come by to knock & check but got no reply. The thing that bothered me most about it as a 15 year old was the fact her boyfriend got me out and I hated him. .
My sister was epileptic and Dad took the lock off the bathroom door just to make sure. She would have her bath alone (teenagers don't want people watching them) but our bathroom was downstairs in a tiny house and we could call regularly from the kitchen or living room to check she was ok. If we hadn't got an answer at least we could have gone straight into the bathroom without worrying about breaking down doors.
Funnily enough there is no lock on the bathroom door of the house we are currently renting (which is a blessing really as ds would lock himself in) and it was ages before I even noticed, whereas other people think it is unusual.
I know very little about epilepsy but I know a friends grandson has a sensor on his bed that alerts the mother. I think it's common sense that if someone has uncontrollable epilepsy they need to be supervised.
BIL's teenaged nephew drowned in the bath while having an epileptic seizure. Far too common an occurrence.
Can you get a blue badge? sorry to interrupt, my DD has epilepsy and we were told unlikely to get one as she is not disabled all of the time (only when having a seizure!)
Again another tragic and unnecessary death. Unfortunately it does not surprise me.
Our experience when entering hospital (on regular basis) and telling them that DD has severe LD and sensory issues in addition to epilepsy is the offer of a cot which is not even safe! If DD stood up she could literally fall over the side as she is a tall 4 1/2 year old.
She self harms and is trying to be independent but they don't want to do anything to accommodate her as we are usually told they are busy/ no spare rooms etc You have to beg them to watch her for 2 secs while u make food to eat as she cant be left alone for a second because of the seizures and LD.
They just don't get it!
People in general just don't get how serious epilepsy is and how many people die from seizures or a risk in just carrying on with their daily lives.
Weirdthing we have also never been told anything about safety from any Dr's or our DD's epilepsy nurse. DD has severe LD aswell but its like they just don't have the time (or I feel cant be bothered) as its a community issue. In the community the OT's don't care and its a vicious cycle.
I never knew about the calcium or epilepsy pillows either, will have to look into this! Thanks for that info.
Our DD's epilepsy nurse is useless, she even told us we would not get blue badge!
I once had an acquaintance with epilepsy, and she told me how many people of the friends she'd made in her local epilepsy group had drowned. It was so, so high.
Weirdthing - I work in the NHS as part of a community rehab team. I have directed people to the charity Epilepsy Action in the past who have been able to recommend where to go for specialist products such as night monitors. There's a section on sleep on their website. I'm on my phone so I can't link to it.
We're not all unhelpful bastards I promise.
DD developed epilepsy because of the chemo she was on.
Never ever ever left her in the bath after that. Even though the medication bought her seizures under control fairly quickly.
I knew nothing about epilepsy.It was common sense not to leave her fgs.
Oh and I hope that some of the people on here who were making jokes about seizures on that other epilepsy thread a few days ago bother to read this and think about what life is like for epilepy sufferers and their family .
That story is very upsetting. I read a similar story about a year ago about a teenage girl having ONE seizure and therefore was not dianosed with epilepsy. She had a second seizure in the bath with the door locked. By the time her mum and brother had broken the door down she had died. Such a waste of a life and all because of NHS protocol ie that one seizure does not equal epilepsy so therefore I am sure they didn't bother giving her any safety warnings.
My DS has nocturnal epilepsy. We were never given any safety warnings. I found out about seizure pillows and paid £80 for two. Subsequently I found that you can get them free from a charity. I also asked about night monitors for my son and was told that the NHS has not 'got any research' on them so cannot help/recommend any. I suspect it is because they don't want to fund them and if a few people die in the night, well hey ho, that's an affordable loss.
They are unhelpful bastards and basically as soon as they have dished up the prescription they are off to the next patient and god help you if you haven't got the wisdom to research everything for yourself. eg I found out that if you are on anti-seizure meds (older ones) for a long time then you need to take extra calcium otherwise your bones are ruined. Also that taking an extra vitamin B supplement really helps with the side effects of Keppra.
Our lass, severely brain damaged, poor balance, and epileptic, can’t be left alone in either a bath or shower, she’s just not safe, but solicitors fighting to lower compensation for acquired brain damage were adamant she could be and produced their own experts to claim it was safe to.
Now many years post-accident, and post an enormous debilitating fight that a commercial vehicle colliding with her head and destroying her life totally somehow didn’t count, if she had some prior difficulties, it’s clear there will be some compensation, (aprx 25% of any award) and suddenly there’s a big interest in taking it of her and getting her into a unit pronto.
(No one’s given a flying about how she or anyone coped for all the years fighting the system, trying to nurse and help her, and waiting to prove she’s like this for life.)
An assessment was done, and all provision recommended is entirely as LD. Head injury needs and understanding, and pre-existing problems including epilepsy, even when it's pointed out, just aren’t part of their idea of 'LD provision', because the person's supposed to fit the ‘services we provide’ box, not other way round. And that's when there's money in it for them.
It all sucks.
So, so, sorry for Connor’s pointless preventable loss of his life, and his families utter devastation.
candy - can you expand on why you are not surprised. My son is 14 and will need lifelong adult care - how on earth do we as parents find good provision?
It's just awful. I was reading his mum's blog before he died because he had learning disabilities (as does my son). I remember the shock I felt when I read her blog post about him dying.
It's awful and it should not have happened. And god know why LaGuardia would want to biscuit this. Are they are well known troll?
Yanbu. A bath is a pretty obvious risk. Just like climbing a ladder or driving a car. If you have uncontrolled epilepsy then conmen sense dictates that you should avoid certain hazardous things.
It's very, very sad.
I once came across a scenario where an 11 year old girl was found dead in the bath at home due to having had an epileptic seizure and drowning. When her parents were asked why she was allowed to take unsupervised baths they said that nobody had ever told them about the risks.... Surely it's obvious? Preventable deaths like this are tragic in any circumstances.
I've had epilepsy for 14 years, I have tonic clonic seizures, and I always bathe on my own. Yes, sometimes there are people in the house but that isn't necessarily a safety net as even if I were to have a seizure they wouldn't know unless we were using baby monitors and could hear splashing noises etc. I don't bathe out of rebellion (I'm far too old for that stage) but because I don't want to live my life on 'what ifs'. I don't consider myself to be a risk in the bath as I always have warnings prior to my seizures occurring so could get out the bath if necessary. I know there's a chance that on one occasion this warning may not appear but I weighed up that risk and decided that it wasn't enough of a likelihood to stop me having baths.
The hospital should have made it clear to his parents that unless the patient agreed to continued supervision during a bath (i.e someone sitting in the room with him) then he wouldn't be allowed one. Or at least have been honest with them that they just didn't have the staff capacity to enable supervised baths. Performing 15 minute checks is a ridiculous and pointless concept as this case clearly shows.
His poor parents and what a waste of a life.
YANBU. Tragically sad but having worked in a day centre for people with LDs, I'm not surprised.
Ignore LaGuardia, she's our resident bomb dropping one liner.
The full Report is shocking. There was so little consideration given to his needs.
His Mum has been blogging for many years, and it records all the issues at the unit before he died. Then the struggle to get a proper inquiry into his death.
It has made me cry more than once
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