Help for victims of ketamine given as... - Restless Legs Syn...

Restless Legs Syndrome

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Help for victims of ketamine given as a post-op drug..?

Tharg profile image
14 Replies

Ketamine is routinely given as a drug to aid people in recovery after surgical operations. Most people, it seems, suffer no bad effects. Others, my wife among them, suffer terrible hallucinations and debilitating after-effects. She recently had to have two major emergency surgical op's and was given the drug after both of them. The effect is best described as similar to a dangerously "bad trip" on, say, LSD. She has been diagnosed with severe PTSD as a result of the drug and is currently receiving counselling to cope.

It is difficult, not to say impossible, to find any organisation or forum or indeed and people who really understand just how traumatic this experience can be. People think, "Oh, just a couple of bad dreams. Pull yourself together." In reality, she is still suffering the horrors (nearly a year since the ketamine was administered).

So, does anyone know of a help-organisation which deals with ketamine trauma as a result of post-operative use? Even a forum would be of some help. I have to stress that organisations dealing with the "leisure" use of the drug are no use whatsoever. Any help greatly appreciated.

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Tharg
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14 Replies
Madlegs1 profile image
Madlegs1

Sorry for your situation.An unsettling experience. For both of you.

I hope you get some support, somewhere.

All the best.

Joolsg profile image
Joolsg

nyketamine.com/dr-glen-z-br... could try writing to Dr Glen Brooks in NY. He runs a ketamine clinic where I believe they use micro doses of ketamine for depression. He has helped one of the RLS forum members by prescribing Buprenorphine and I think he'll answer your query and might be able to guide you along the right path to find help.

I'm sorry to hear of your wife's suffering and hope you find a solution.

Joolsg profile image
Joolsg

I also found this link. It seems that the risk of hallucinations is well known and in the USA they use IV diazepam or similar to prevent this happening. The surgeons and anaesthetic team who administered ketamine will therefore be fully aware of the risk of post operative hallucinations and should have warned you of the risk AND considered the use of IV diazepam or similar to counteract this.I suggest you write a detailed complaint detailing what has happened and asking why your wife was not warned. Also ask whether diazepam or similar was used.

You may also consider legal action as you will have to seek private psychiatric help ( NHS waiting lists are too long).

researchgate.net/publicatio...

Tharg profile image
Tharg in reply to Joolsg

Thanks, Jools and Madlegs. Help greatly appreciated. Will investigate your links and suggestions. FWIW, it is known that ketamine is given to "alleviate" post-operative dementia. A fairly common condition. However, there are also very strong warnings that its use must be very closely monitored because it can have an opposite effect. Not only worsening post-op dementia but making it a permanent, irreversible condition. This was completely ignored in my wife's case. Despite being in chronic, hallucinating terror, she was completely ignored by the ward staffFurther, an attending doctor said that no more ketamine should be given because of her dangerous reaction. This, too, was completely ignored and the nurses continued to give the stuff.

I hear what you say about taking an action against the hospital. But I know for sure that the patient record of timings and drug amounts given will have "been unfortunately misplaced". And previously unseen records will suddenly come to light to confirm that the staff, particularly the ward nurses, acted with due diligence. They would, of course, never act with life-threatening and criminal incompetence.

On one occasion I was so concerned I actually dialled 999. The staff at the 999-centre phoned the ward and were told that my wife was under constant, one-to-one care. At the same time my wife was on the phone to me, left alone by the staff and crying in terror. She only got attention when she started ripping out all the drip-feeds. But how could I possibly prove that? If you've ever had any issue with NHS incompetence, you will know how ranks are closed and records changed so that it all becomes YOUR fault.

Sorry for rant. Thanks again, all.

Butterflysun1 profile image
Butterflysun1 in reply to Tharg

That all sounds absolutely awful & that’s not a strong enough word.Where was this can I ask?

Complaints are often successful and I would not let your concerns put you off trying. I used to work for the nhs & honestly that sort of behaviour & occurrence would appall all who ever worked with me. I have never seen the like.

Records cannot be doctored as the changes are obvious.

Also remember you are a witness.

It can’t be allowed to go unchallenged.

There are specialist medical negligence lawyers. They will advise you. I doubt they expect to be paid by private individuals as they know how to win such genuine causes and their fees are then payed by the hospital / medical defence organisations.

Drs are obliged to pay for medical defence - it isn’t voluntary. In hospitals there are central systems for this.

I would try to ‘search’ for medical negligence lawyers, contact them & ask how to proceed. I don’t think they have to be local & will travel to different regions.

Butterflysun1 profile image
Butterflysun1 in reply to Tharg

Further to what I’ve just written I’ve just googled medical negligence lawyers. There are some very large organisations. They work on a no win no fee basis & offer a free initial consultation to find out the situation & advise what to do next

Tharg profile image
Tharg in reply to Butterflysun1

Thanks, Butterflysun. I hear all that you are saying and agree that something should be done. All this happened at Worthing hospital in Sussex. We know from experience that, while established written documents are very hard to change, "new" documents can come into existence to falsify the NHS record. And staff will lie en masse to cover their backsides.We'll seriously consider going to specialist lawyers, much as we distrust legals. Basic problem is that my wife has been through so much grief and trauma because of ketamine, and continues to suffer from it, that adding a whole new barrow-load of horrors in taking legal action might be too much. All she wants to do is recover from the horrors. What's more, I'll bet there is a time-limit on claims and we've passed it.

Butterflysun1 profile image
Butterflysun1 in reply to Tharg

I was thinking what you have written while I was writing and thinking that your poor wife will just want to be feeling better and escape the horrors of it all. And therefore what some others have written about sources of help will be far more immediately helpful.I also recognise how awful it would be to add to her trauma.

I also know though that it should not have happened & some of these matters are due to institutional faults/attitudes & there may be others who have suffered the same.

Most nhs workers do not want to be causing more suffering & most would also be appalled. I wouldn’t be closing ranks for sure.

I also think, albeit that they earn a lot, that these lawyers genuinely wish to help. I would definitely go only with a no win no fee firm & a specialist.

I understand the time limit to start is 3 years from the event - am no expert, just what I’ve read this morning.

I know 1 or 2 personally actually - one has probably now retired & the other is a young girl just starting out. Both are really kind & decent people.

Often folk in your position don’t so much want to sue for themselves, apart from those who need funding for subsequent care, but so that there is an investigation and the situation does not recur.

I know from experience how hard it is to be perfect & not make errors & I lived in fear of causing anyone inadvertent harm, especially when busy & stressed but your wife’s situation sounds to have been more institutional / organisational. It could even be because they were short staffed & stressed & you might be thanked for highlighting this. Sometimes even when short staffed or stressed normally really caring folk lose their ability to observe or empathise & become robotic.

I send you both my warmest wishes

Jelbea profile image
Jelbea

Sorry to hear about your wife. This is so distressing for her and for you. I see Joolsg has replied to you and I was actually going to suggest the same thing. Dr. Glen Brooks has helped others from this site and I hope you can also get the help your wife needs

Tharg profile image
Tharg in reply to Jelbea

Thanks, Jelbea. Your thoughts and advice really do help. Will try to contact Brooks.

Spurdog1 profile image
Spurdog1

More and more Ketamine is used. But Ketamine is also the drug used for date rape.

This is no joke, and in sympathy. Our cat had the snip and has never been the same. Hallucinations, yep, most definitely.

Tharg profile image
Tharg in reply to Spurdog1

Cheers, Spurdog. Very true that this bloody poison is getting used more and more. Even though research, mainly in the USA, warns of the dangers. Seems like the NHS is totally ignoring the science.

SueJohnson profile image
SueJohnson

At least in the US you can request the hospital records and they are required to give them. If you haven't contacted them to complain then they might not change the records or produce new ones, as they might if the records were requested by a lawyer.

Tharg profile image
Tharg in reply to SueJohnson

Jools, SueJ, Butterfly and everyone else. Thank you all so really very much for your help. We are just coping with the here 'n' now at the moment. Last night, completely coincidental to my posts, was the first anniversary of the really bad attack in hospital. Madam was up for three hours from 2am. Four valiums and a couple of large brandies finally stopped her crying and turned off the "replay" switch which makes her go through the whole thing over and over again.

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