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Original poster

To not want to go back to A and E after bad experience (epilepsy)

35 replies

Newtonred · 19/03/2022 23:40

Long time lurker first time poster.
I have epileptic and none epileptic seizures, they both present differently. The epileptics ones are grand mal and the none epileptic ones I just look like I have fallen asleep and a shake a little. During this time I can hear what is going on and feel it I am in pain but I can’t respond till it is over. It’s very scary.

Whenever I go to hospital and my details are out into he computer it flashes up on the computer what happens to me. Up to now I always have had someone with me but rules are only the patient allowed in.

Got taken to A and E today by my husband, I had tripped and hurt my ankle and it was swollen. When I got to the hospital I asked if my husband could stay as quite often after a seizure I am confused, upset and even have memory problems so it good to have someone with me who knows me. I was told no

Whilst in a cubical I started to have a none epileptic seizure. I was on the bed as had just been examined. I heard two people come in the room that turned out to be a nurse and a doctor. The doctor kept yelling a me to walk up and the nurse said “it looks like she is faking”
I then feel this pain in my chest like am being pressed down on very hard and hear “press harder and she will have to come out of it”.

The pain got worse and then I feel a pain in my eye like a finger being stuck in it. I then feel an intense pain in my finger.

I then begin to come out of it and I think I started to stay “stop stop stop”. I then hear a voice say “that it just leave her”. I am then left on my own. I am not sure how long it took me to come round properly.

Once I am able to after not sure how long I ring my husband crying my eyes out. My husband rings a and e and demands to know what has happened.

They put the doctor on the phone who said your wife was faking a seizure so I pressed down on her ribs, flicked her eyelids and pressed her nail bed to get her to come out of it and she did. My husband went ballistic and told him did he even know the difference between none epileptic and epileptic seizures and he snorted and said “oh yes those psdo seizures”. My husband said he was coming to get me and put the phone down.

My husband then rings me back so I hobble out of the cubical through the waiting room and outside to wait, lucky we only live a few minutes away. I am still crying my eyes out, I passed lots of staff of the way out but no one asked me what was wrong.

When my husband came he wanted to go in and make a complaint but I was so upset I just wanted him to take me home. So now I am at home, my ankle is killing me and is really swollen and warm to the touch but I just can’t go back.

I have emailed the epilepsy nurse and I am going to get in touch with my specialist after the weekend. My husband said I need my ankle seeing to but I am not going back to hospital on my own. It’s not the first time I have had a bid experience with hospital staff and seizures.

My husband wants to ring A and E and demand that he is allowed to come with me but I just want to take some painkillers and go to bed, see if I can through the weekend and see the GP on Monday. My husband I need it xrayed but I am terrified of going back. My bloody chest is still sore.

OP posts:
Theghostofchristmasarse · 19/03/2022 23:46

Oh my god I'm so sorry, that is fucking awful. I had grand mal seizures for a while, I can totally relate to being able to hear but not speak, I had some horrible things happen to me whilst having a seizure but they were random passers by, not bloody doctors! It's disgusting and you definitely have to take it further. It's does sound like you need to get seen though, just let him call them and at least get advice about your ankle? Then yes, complain on Monday, they shouldn't get away with that.

raspberryjamchicken · 19/03/2022 23:48

Sorry to hear about your bad experience. I would put in a complaint through PALS but I think at the very least you need to call 111 about your ankle. Or go back in the morning if it is still bad rather than wait until Monday. You would probably be unlikely to see the same staff.

AnotherNC22 · 19/03/2022 23:51

Im so sorry you had such a horrid experience Flowers

Def agree with other posters about making a complaint through PALS. That doctor must not be allowed to treat patients that way again.

Is there another hospital you could go to get your foot checked out in the meantime? Maybe a slightly longer journey? But then you wouldnt see the same doctor.

Hope you start to feel better soon.

Original poster
Newtonred · 19/03/2022 23:51

I am just terrified. It’s not the first time I have been treated badly due to seizures. I once had to have an operation cancelled but I had a seizure before it and was made to feel terrible. I we given an internal when I was in labour during a seizure as they apparently had to know right this second how dilated I was. (Again I had no one with me as I was labouring overnight on the pre natel ward.

OP posts:
FluentlyExasperatedMadam · 20/03/2022 00:02

I have epilepsy and refuse to go to the hospital after seizures as the treatment is poor. I once woke up with 3rd degree burns from the iron during a seizure and took myself to the chemist and gp for treatment as I knew I'd feel safer there in comparison to my local hospital.
I'm sorry this has happened to you xx

Woolandwonder · 20/03/2022 00:18

Am so sorry. There is so much misinformation about non epileptic seizures. When you speak to your Epilepsy nurse see if she has any suggestions, sounds like a&e need some training and information. She could add some notes to your medical record around how you need to be looked after when having a NES. Regardless the cause of your seizure you have the right to be treated with respect and kindness at all times. I hope you have a restful evening, and that today doesn't effect your seizures too badly.
My sister has epilepsy and NES. I took her to an EEG and she had a NES during it (although was very difficult for us to tell the difference at the time, I find it easier now) The staff were really good with us.

Xmassprout · 20/03/2022 00:23

I am so sorry, i can't even begin to imagine how horrid that must have been. Please do complain if you feel you're able to, the way they treated you is absolutely disgraceful.

Do you have any local minor injuries units? They often have x Ray departments

Original poster
Newtonred · 20/03/2022 18:32

I have been to urgent care after speaking to 111 and they let my husband come with me.
It is broken so I am going to be in plaster for a while.

OP posts:
BakedTattie · 20/03/2022 18:41

My god that is utterly horrendous. You poor thing, you must have been terrified, and in pain!

Absolutely complain. That is appalling the way you were treated.

ChiswickFlo · 20/03/2022 18:46

@Newtonred

I have been to urgent care after speaking to 111 and they let my husband come with me. It is broken so I am going to be in plaster for a while.
Please post on the hospital fb page, (I've found thats gets their attention!) contact the ceo (their contact details will be on the website) and copy in your mp

I'm utterly livid on your behalf

SweetPeaGirl · 20/03/2022 18:52

This is horrific. Please know that you do not have to make a complaint straight away for it to count. Take some time to recover, then when you are able consider getting in touch with PALS. You can usually email.

This is such terrible treatment and that doctor and nurse should face disciplinary action.

sharpsobjects · 20/03/2022 18:55

Putting epilepsy in your title is a bit misleading because your issue is with pseudo-seizures/non epileptic seizures, which are a mental health issue rather than epilepsy, even if you also have epilepsy.

A&e is completely overwhelmed at the moment and staff don't have capacity to deal with things that aren't life or limb threatening. And the guidance for pseudo/seizures is that causing a fuss/drama around the person reinforces them in times of stress.

It sounds like it was dealt with in a clumsy fashion, but they had to decide whether you were in immediate danger or not, and the only way to distinguish the two is to try to wake you up.

I hope you are getting some mental health support to manage your non epileptic seizures.

Samsalone · 20/03/2022 19:00

@sharpsobjects

Putting epilepsy in your title is a bit misleading because your issue is with pseudo-seizures/non epileptic seizures, which are a mental health issue rather than epilepsy, even if you also have epilepsy.

A&e is completely overwhelmed at the moment and staff don't have capacity to deal with things that aren't life or limb threatening. And the guidance for pseudo/seizures is that causing a fuss/drama around the person reinforces them in times of stress.

It sounds like it was dealt with in a clumsy fashion, but they had to decide whether you were in immediate danger or not, and the only way to distinguish the two is to try to wake you up.

I hope you are getting some mental health support to manage your non epileptic seizures.

Your wording is also clumsy. NES have a multitude of causes; trauma, neurological, psychological. They are also very common in patients with epilepsy. They aren’t simply someone wanting to cause a fuss or drama!
sharpsobjects · 20/03/2022 19:02

I didn't say the person is causing a fuss/drama, but staff doing that reinforces the behaviour. It is subconsciously motivated and not the same as faking. However, staff do not have the time to manage this in the acute setting, and leaving her to come round after they had established she wasn't in danger wad completely appropriate, much as she desired a caring response.

RosalieDene · 20/03/2022 19:05

@sharpsobjects - you seem to be implying that non-epileptic seizures are something a person can control. The fact is that this was actually limb threatening as you put it because the way the doctors treated OP prevented her from being able to access healthcare for a broken foot.

And I'd have thought that OP is having as much mental healthcare as the NHS will provide which is probably nothing.

sharpsobjects · 20/03/2022 19:07

She chose to leave a&e, they didn't kick her out. And they can be "controlled" as such by emotional regulation and coping strategies, it just takes motivation to break the cycle. Unfortunately many people get stuck in a cycle of unhealthy ways of getting their needs met.

gamerchick · 20/03/2022 19:08

Ring PALs, that is utterly outrageous.

I hear you though. When I woke up with chest pains one night which scared the crap out of me. I realised in bed that I would rather die than to to our local A&E. Awful awful place, treated like utter shit.

Scianel · 20/03/2022 19:09

@sharpsobjects did you miss the part where OP was in A&E for a broken ankle?

Sapphireskies · 20/03/2022 19:13

I'm so sorry. Please report this it's about disgusting. No one should be treated like that.

RosalieDene · 20/03/2022 19:13

I think I would have left too in her situation. Even if she was faking - which she wasn't - causing her pain and talking about her as if she isn't there is terrible bedside manner, and doesn't exactly inspire confidence in their ability as doctors.

You also seem to be under the impression that this is something that can be controlled if you just work hard enough, and thankfully the medical profession doesn't agree with you.

Scianel · 20/03/2022 19:15

Dissociative seizures happen unconsciously, which means that the person has no control over them and they are not put on. This is the most common type of NES

for @sharpsobjects

PingPages · 20/03/2022 19:21

@sharpsobjects

She chose to leave a&e, they didn't kick her out. And they can be "controlled" as such by emotional regulation and coping strategies, it just takes motivation to break the cycle. Unfortunately many people get stuck in a cycle of unhealthy ways of getting their needs met.
Really bloody hope you’re not in any kind of caring or medical profession.
KeepingAnOpenMind · 20/03/2022 19:21

NHS. Envy of the world.

whatdodos · 20/03/2022 19:23

@sharpsobjects

Putting epilepsy in your title is a bit misleading because your issue is with pseudo-seizures/non epileptic seizures, which are a mental health issue rather than epilepsy, even if you also have epilepsy.

A&e is completely overwhelmed at the moment and staff don't have capacity to deal with things that aren't life or limb threatening. And the guidance for pseudo/seizures is that causing a fuss/drama around the person reinforces them in times of stress.

It sounds like it was dealt with in a clumsy fashion, but they had to decide whether you were in immediate danger or not, and the only way to distinguish the two is to try to wake you up.

I hope you are getting some mental health support to manage your non epileptic seizures.

It's not misleading at all because she does also have epilepsy. If the OP was having an epileptic seizure and they treated her that way it would completely unprofessional and wrong and doctors aren't always able to tell that easily. It would have been kinder and easier for them to either just watch from a distance and keep an eye or if there was time talk to the OP and give some reassurance. They then would have been able to assess and treat her ankle. Epileptic or not the way she was treated during the seizure is not going to make anyone feel good and want to stay. Being busy is not an excuse
Lemonlady22 · 20/03/2022 19:23

@FluentlyExasperatedMadam

I have epilepsy and refuse to go to the hospital after seizures as the treatment is poor. I once woke up with 3rd degree burns from the iron during a seizure and took myself to the chemist and gp for treatment as I knew I'd feel safer there in comparison to my local hospital. I'm sorry this has happened to you xx
If you had a 3rd degree burn you would need a skin graft
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