To Think Ch4 loosing it is... Irresponsible?

[TraumaSaurus]

I've only watched one episode, and I had issues with some of that episode (specifically the use of the phrase "psuedoseizures" on live TV), however, the thing that is really irritating me is the phrase

"Suicide is a trend. A trend" in the opening scenes of the episodes. It's stated by a teenager, and whilst I get that's her opinion, it's a freaking dangerous one to be shared so publicly by Channel 4 in a program that is supposed to be educating the public about mental health in the UK.

5zeds

Yes. I am.

And it is 1 in 1000 death rate for epilepsy (please do also note, I said harm not just death in my post).

And for dissociative seizure?

Difficult to say as for a long time they were classified as epileptic seizures (for the statistics on death I gave above). However, dissociative disorders have an extremely high premature death rate, usually due to being the victim of violence, taking their own life, or a coexisting illness which they are more likely to suffer from due to have a dissociative disorder.

Epileptics usually get a warning (aura) before seizures, people with dissociative seizures do not, so are much more likely not to be able to get themselves into a safe position and call for help.

Yes, sorry I misread and completely agree that terminology can be extremely damaging and personally disagree with diagnostic labeling over trauma focused treatment but despite recommendations this term is still used. I also agree in my post that it is not taken seriously by many people, no matter how it appears eg. NEA, psychogenic, conversion etc. by medical and non-medical alike (a major part of the reason that a change is needed) but it is often used as short hand to convey the symptoms of a deeper problem. Just as a side note, most psychologists will always treat this seriously as will many psychiatrists and the very odd neuro. I really hope I did not sound dismissive of your post in this or my previous reply, I really do think this is an important issue and agree on the whole but I don't think they are irresponsible as it is still used. It is the DSM-V that needs changed and not Channel 4.

The only thing I could find from a quick search

The standardized mortality ratio (SMR) among patients with PNES was 2.6 times greater than among the general population. Patients with PNES between ages 30 and 39 had a ninefold higher risk of death, compared with the general population. The SMR of patients with epilepsy was 3.2. so while higher than the general population not in line with epilepsy, and that’s only accounting for deaths, not brain damage or injury. Comparison really not important unless you are going to claim

And actually - people are much more likely to suffer harm during a dissociative seizure than they are an epileptic seizure.

Nb auras are not the norm for most epileptics.

You are talking about mortality, and my post (as I pointed out previously) specifically said harm. And mortality stats don't really count as a lot of people with dissociative seizures are still classed as having epilepsy...

And auras are actually common in epileptics... unless every neurologist I've seen in the ten years since I was diagnosed with epilepsy is incorrect...

LokiLocks Thank you, and sorry for my grumpy reply! I probably shouldn't have started this thread but it is something really annoys me.

On a complete side note - Christopher's story is heart breaking and I cannot believe discharge is being planned when he's going through so much.

I work in this system and can't bear to watch the programme because I deal with real health care professionals every day who think that self harm is just a waste of everyone's time and that people fake symptoms for a bit more attention.

I don't think it's inappropriate to show these attitudes I wish they were more firmly called out though.

That’s so sad @doublebarrellednurse

Not at all, it is a good thread. You are right to feel so passionately about it and it is definitely something that needs to be discussed more. Nathan Filer in 'This Book Will Make You Think Differently About Mental Health' writes really well on this point and how diagnostic labels can impact on human lives. You have encouraged me to read more on seizure statistics as well!

doublebarrellednurse Thank you for all the hard work you do.

I would say dying is the ultimate “harm” but I would imagine brain damage would elicit the same sort of disparity in levels of “harm”. The point I was trying to make was that piggybacking people’s understanding of how serious a condition is by stressing it is worse than a more commonly understood condition is not ideal but understandable, however you do have to be sure if your facts.
Aura is fairly common but by no means experienced by the majority of epileptics.

by stressing it is worse than a more commonly understood condition

I have never said either condition is worse.

I have never said either condition is worse.

What did you mean by this post then?

And actually - people are much more likely to suffer harm during a dissociative seizure than they are an epileptic seizure.

Exactly that. People are more likely to suffer harm from a dissociative seizure than they are an epileptic seizure.

I give up

I have NEADs and I despise the term pseudo-seizures. It makes me feel so bloody stupid and embarrassed.

For some reason back in 2018 after a series of traumatic events in a very short space of time, my body gave up. I now can't deal with high levels of stress anymore as my body's way of coping seems to be by fitting. It's almost like my brain shuts down. I weirdly find the absent ones worse. It feels like my brain is burning and I physically can't speak or do anything, I just shut down. Luckily they only last about 30 seconds but it's highly embarrassing...

My understanding is that, whatever you want to call them, they are not seizures in the sense of abnormal electrical brain activity. However, I know they are very real and debilitating.
In the case of the programme, the young girl was very distressed and was having unusual attacks. She got the help and support she needed, including a diagnosis.

I too felt sorry for Christopher. It was quite clear he needed life long support.
Also self-harm is a trend. Kids and teenagers see others do it, see the scars or photos on social media, and it encourages them to self harm.
Suicide is also contagious which is why guidelines have been produced for media outlets on how to report on suicides without encouraging others to commit suicide.
That is not saying these things are unimportant, but simply recognising there is an element of social contagion and that this needs to be managed by places such as schools.

And using the term non epileptic attacks may be fine for medical professionals, but to me it simply means an attack that is not an epileptic one.

Christopher is seriously ill. Poor man! Schizophrenia is not curable.

My father had a seizure once from hypertension which, unbeknownst to him, had become unstable (some of his medication had been changed to a generic, which apparently metabolised in him differently, but as he is elderly and trusting, he just picked up the script and carried on swallowing away, not realising there was a change or querying it).

I wonder if they wrote it down somewhere as a 'psuedo seizure' as he had no epilepsy? He had a serious problem and was in hospital for a while trying to stabilise him. It's amazing to think this could have been categorised as a fake seizure, my mother thought he was having a bloody stroke.

I havent seen the show but I do work in mental health and the term 'pseudo seizures' is used frequently by all healthcare staff and is recognised as meaning a seizure or seizure-like symptoms that are not caused by epilepsy, especially if the cause is unknown. Admittedly some agency staff find it confusing but it is generally a widely used term. It isnt outdated, at least not where I work, nor with the ambulance teams, and is useful when we have been unable to diagnose what is causing a patient's seizures, normally due to their mental health, violence, or simply because they are new to services and there is no background information. I do agree that it can cause some confusion but it has its uses, especially as it is easier to convey and less likely to be missheard than non epileptic attack in a high stress situation or over the phone to the ambulance.

As an example, I cared for a young man who suffered from seizures frequently but was not epileptic. Sometimes he would have an aura, sometimes he wouldn't and the seizures themselves varied a lot in symptoms and duration. He was also known to fake a seizure occasionally but it was very difficult to tell the difference between him pretending to have a seizure and a genuine seizure so the term 'pseudo seizure' was useful - it stopped staff worrying about whether he was pretending or not, it meant staff and paramedics knew that it was non-epileptic and ensure that every seizure was treated swiftly and as it should have been. In my experience, the term 'pseudo seizure' was always treated very seriously. However, it does have its drawbacks as the general public and agency staff are less familiar with the term, and as a PP mentioned it can make the patient feel as if they are not being taken seriously.

As for self harm being described as trendy, I do agree that it shouldn't be portrayed on tv like that but I can see why the term would be used. We've had a few patients, particularly those who have been in children's mental health services, self harm because 'it's what everyone else does', often to get attention from staff. I've had patients boast about what they've done to themselves as if it's something to be proud of, and have also been told that they self harm because it means they get restrained and they enjoy restraint because it's the only time they feel safe with someone's arms around them. It devastating, especially as this particular patient was very young and never had visits from his mother and often said it was the only way he could have physical contact with anyone because as staff, it is inappropriate to hug.

No they wouldn’t write it down as pseudoseizures , you can have seizures from all manner of things affecting the brain including for instance diabetes, drug reactions, withdrawal, brain injury, fever, I think sometimes cardiac events etc . Sister had a generalised seizure aged 17 or 18 as a reaction to a medication . She’s not epileptic. Your dad’s experiences wouldn’t have been written as pseudo seizures at all - totally different .

NEAD (there are dozens of other names circulating online) is totally different from a seizure in that a seizure has a physical cause . NEAD - in my mums case - has no physical cause, it’s psychogenic and like an extreme disassociation from stress and anxiety, even if she’s not particularly anxious at that moment . She has some control over the attacks but not a lot .

But yes unfortunately whilst the term pseudo seizures is easy to recognise for HCPs who trained a fair while ago ... having worked in the nhs in that sort of field you do get a lot of bollocks eg ... ‘no, they’re fake seizures, just after attention really’ from nursing staff unfortunately . Functional neurological disorder (of which NEAD is a part) is a very real, and very distressing and disabling all round . Have even known individuals to end up with paralysis type symptoms and inability to walk, eat or talk . Without proper intervention and support can take over your whole life . It’s still largely unheard of in the general public and I’m actually amazed to see this thread on MN as realising others feel the same way as DM (who says she hates the terms psuedoseizures and the one that was given in the 70s/80s, hysterical seizures) . When I try to explain to HCPs now I usually say ‘they’re called non epileptic attacks - you might remember the term pseudoseizures’ .

Don’t know if changing the name has changed attitudes much to be honest as even though we generally called it FND at work there was still a nasty overtone at times with the assumption being if it was functional you must be pissing about . Sent home with a leaflet and sometimes a referral to psychology services .

Seemingly the majority of neurology referrals turn out to be similar so you’d think in this day and age there’d be more understanding .

Although happy to be told it’s different across the NHS and it was maybe the culture of where I worked at the time, it would fab if it’s properly managed and understood elsewhere .

For us, it was particularly helpful when we have patients whose presentation makes it very difficult to diagnose, especially if they are deep in psychosis or catatonic, or are too unwell to check for physical health issues that may contribute. It has also been useful when we have to call an ambulance as it saves time explaining symptoms and the paramedics seem to have a good understanding of its meaning. I think each hospital or trust has different things that work or dont work for them.