To think that the NHS should know that people with epilesy can drown in the bath

[everydayisabluesday]

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.

Once again, Fuck off LaGuardia

OP It is indeed awful. A very close friend went into Charing Cross Hospital many years ago. It was to do with his well documented epilepsy. Somebody thought it would be fine for him to go swimming alone. That was thirty odd years ago and I'm shocked that lessons still have not be learned.

I don't understand the biscuit LaGuardia.

My ex SIL ( a lovely lady) has epilepsy. On one occasion, she suddenly had a seizure when carrying shopping, fell and broke her jaw. My DB, who was also carrying shopping, was unable to react fast enough to put his bags down and catch her.

ExSil has showers these days, to avoid drowning. It is a preventable thing. and this report is so sad.

So so sad!

Some people just don't realise how serious epilepsy is!
My friends mum had epilepsy and when my friend was about 18mths her mum could sense she was about to take a seizure and at the time she had a coal fire so she tried to get up to put the fire guard up incase my friend went near it! She took a seizure as she stood up and fell face first into the fire!

You get some very ignorant people posting!!!

I lost a friend at 15 when she had a fit and drowned in the bath. She knew she was not supposed to be in there alone but she was rebelling against her illness and full of teenage bolshyness

Of course tgey can, my friend has gran mal seizures, and she gad one in the bath, good thing she lives with her parents and her mum was nearby

I think people don't realize how easy it is for anyone to drown even in a shallow bit of water like a bath.

I agree, this should not have happened. The thing I find confusing, is he was on 10min observations, but they dropped that to 15min for bath time.
Surely it should have increased if anything

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 :(

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.

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. 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 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?

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?

Yanbu.
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.

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.

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 .

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.

YANBU.

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.

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!

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!)

BIL's teenaged nephew drowned in the bath while having an epileptic seizure. Far too common an occurrence.

www.epilepsysociety.org.uk/alarms-and-safety-aids

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.

www.epilepsysociety.org.uk/alarms-and-safety-aids