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

[Newtonred]

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.

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.

Acute setting staff are still expected to give a high standard of care! Please speak to pals.

@sharpsobjects if you really worked in the medical field you'd know that the term 'pseudo-seizures' is no longer acceptable and hasn't been for a long time. NES is far more complex than "just" a 'mental health problem'. Would you tell someone with CFS or phantom limb pain that it's all in their head and they should "cope better"?

OP, please complain to PALS, you were disgracefully treated. I'm sorry this happened to you

That is horrendously shocking, the way you were treated and what the Dr said to your DH afterwards. Please please make a huge stink about this, no one should feel too scared to go to A&E for treatment.

Honestly, if a person physically touches you in a non-therapeutic way that causes you pain, isn't that assault? I think I might view it as such and proceed along those lines.

“@sharpssobjects* I just need motivation to break the cycle? Oh thanks I will get onto that straight away and tell my phycologist and specialist that I am sorry for wasting their time as it’s nothing to do with the abuse I suffered as a child but it is in fact a motivation problem.
Do you also tell people with depression to just pull themselves together and people with fibromyalgia the pain is all in their head

Are you getting any support with your mental health?

When someone is unconscious pressing on the finger or a sternal rub is how you assess pain response/conscious level and is a way of making sure you aren't having a tonic clonic/grand mal seizure. Supra orbital pressure is another type of painful stimulus although it's not used as much.

Applying pressure to the supraorbital ridge is a totally legitimate means of checking a patients response to painful stimuli. I tend to favour the trapezium squeeze though as it’s much less likely to cause damage, and easier to grab. Clinicians are really do have to be quite firm and rapid in applying these tests though as we need to know rapidly if your level of consciousness is reduced and therefore your airway at risk. If there is a legitimate belief that this might be the case then really politeness and feelings might go out of the window, since brain damage or death might be imminent.

If you’d not responded when you did, you might have found the next thing that happened was a reasonably sharp big rubber tube being inserted into your nostril or a big plastic thing being put down your throat to secure an airway.

Link below from GOSH about assessing response to pain;

media.gosh.nhs.uk/documents/Appendix_2_Neurological_Observations_types_of_painful_stimuli.pdf

I will add that the nurse and doctor were unkind and foolish in the things they said to you, that is the only grounds you’d really have for complaint, everything else seems to be an entirely legitimate assessment of a possibly unconscious/possibly fitting patient.

Whilst i get that drs need to know if you're having an epileptic seizure vs non-epileptic...

Is the idea that involuntary, sub-concious behaviour can be rewarded and thus reinforced by 'people making a fuss' REALLY a thing within modern medicine?

Because if so.. wow. That is shockingly poor.

OP I hope you can get your ankle fixed, and refer to your OH as your carer if you need to attend hospital, as that is what he is when you need to go to hospital.

@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.

Oh my God! What a hideous experience! So that Doctor's ignorant, arrogant incompetence led to you continuing to walk on a broken ankle? Complain!! Today!! Hope you feel better soon. X