Sad story

Hi @NP0094,

Welcome to the SANE Forums – thanks so much for your post!

There certainly are a lot of people who feel the way you do about ECT, and unfortunately it seems that memory complaints are quite a common side effect of the treatment. One of my friends underwent ECT a year or so ago after she became quite unwell and she described the experience as quite traumatic, really regrets it, and never wants to do it again. While I completely appreciate how she feels, the thing I often think is that, before the ECT her life was coming apart because of her illness. She wasn’t able to continue her work, her relationship ended because of numerous hospitalisations, she wasn’t able to live independently anymore, she would often go missing, and we were all really worried about her. Although the experience of ECT was really traumatic for her, it’s been 12-18 months since the treatment now and she has a good job, a new relationship and is doing really well. ECT really helped her, and as difficult and unfortunate as the side effects were, it has had a really positive effect on her life. So while I agree there are some downsides, there seem to also be a lot of benefits. Of course, I can’t speak for what the experience of having ECT is like and certainly don't claim to; maybe if I actually went through it myself I would feel as though I never want to do it again, I can’t really say, but those were just my thoughts on my experiences of witnessing someone’s life both positively and negatively affected by ECT. I’d be really interested to hear what your experience was like?

Like yourself, I’m pretty sure my friend will try to avoid ECT again at all costs, and thankfully there are many provisions within current mental health legislation that make sure people can retain as much control over their treatment as possible. You might have read into this already, but you might want to check out the Mental Health Act Handbook online and have a look through the sections on ECT and Advance Statements. There is also an interesting discussion of ECT here you might want to have a read of. Some of our users, @kenny66 and @8Powerful have both found ECT helpful and offer some really interesting perspectives on their experiences.

Thanks so much for posting and we look forward to hearing from you!

All the best,

supernova

Hi @NP0094,

Do you know what the name of the programme was?

Im also dismayed at the paternalistic attitudes still in place in Psychiatry and there are many abuses of power without any repurcussions for those that misuse it.

All persons should have the right to choose their treatments providing that they retain decision making abilities,however, in reality, often their wishes are overrided as the treating physician believes its in their patients "best intererest" and will order the ECT (or other treatment) against the patients wishes.

So the notion of assessment for decision making capacities is a bit farcical because if at any point a Psychiatrist declares that that patient does not have the capacity for decision making,then they are believed.The Psychiatrist does not have to have any evidence that the patient lacks decision making abilities-its simply a case of Psychiatrists word trumps patients word.

There are no standardised measures in place to consistently assess whether patients do have or do lack decision making ability.

Instead,it is left to the opinion of the Psychiatrist and that is alot of power to hold.

Supernova pointed you to the Mental Health Act.To be honest,mental health rights are usually a theory,an ideal-in practicality they dont exist.

Think of how many times you have seen reported in the news,or in a newspaper that a Psychiatrist has received repurcussions for abusing their power (eg:forcing a treatment on a non consenting patient who retained decision making capacities,treating a patient without dignity or in a disrespectful manner etc)?

Most likely never,and the HCCC (NSW) also does not discipline them when these things happen.

So obviously,without repurcussions,there are no patient rights in Psychiatry.

Some people on this forum like to paint a "rose coloured glasses" mentality that patients somehow have more rights now then they did in the past.I dont see this as being the case-at least not in NSW.

Advance statements are not legally binding in NSW and are simply disregarded by most Psychiatrists.

So perhaps it varies state to state or ,alternatively,perhaps some peple are living in an "optimistic bubble".

Mental Health should be about patients well being and what often is not addressed is that the way our current Mental Health System is being delivered is sometimes having detrimental effects on some patients mental health and is either exacerbating current conditions or causing new ones.

Patients can have long lasting effects to their self esteem,trust issues,self worth issues,depression and PTSD if they feel they were treated without dignity,wishes were not listened to,or treaments were forced upon them and even more so if they feel their complaints were not sufficiently addressed or their trauma feelings reagarding their mistreatement were being dismissed.

Supernova mentioned that her friend benefitted from ECT even though she didn't like getting it & wouldn't choose to have it.

It needs to be mentioned that correlation does not imply causation.

IOW,that fact that her friends life appeared better at the same timing of her ECT completion does not necessarily mean that the ECT caused it.

There could have been other factors such as a medication change or start or completion,the friend could have decided to do more activities to appear less externally depressed and therefor avoid another forced treatment,or another factor.

Personally im not against ECT (particularly voluntary) and do believe it can help some people.

What concerns me though,is this overreliance/thought in Psychiatry that ECT is the last resort tool when nothing else works and that it will work in treatment resistant cases.Scientific studies that shown this just isn't true.

ECTshould not be involuntarily administered to everyone that is treatment resistance,it should not be taken lighly as it causes other brain dysfunctions (memory loss) which interfer with carrying out everyday life activities.

Personally,id like to see TMS become a treatment choice for patients rather than ECT.

TMS over ECT

Dear Supernova, Ivana and others

Thank you for your replies. The progam I watched was the 7.30 report on chanel 2. What was even more alarming than the 40 yr old patient not agreeing to ECT treatment was his father who had power of attorney also refusing consent on behalf of his son. I will read with interest the links you sent Supernona thank you.

I understand you would be please with the outcome of your friends treatment and link that to the positives that have flowed. My own family would think that my treaments would be for the best. Over 25yrs I have had five hospitalisations for ECT, for the first four I was ambivilant. The last extended one (2013) I had treatment for a year (hospiatised for three months & out patient for the rest) and it has left me not the person I was. My memory capacity has been irrevicably altered which has significantly damaged my work. I don't think ECT played much of a part in my recovery. I just think the psychatrist didn't know what else to do. I have had times when I have expereinces the "light bulb" effect - where ECT has flicked the switch but its only happened twice - not worth the lottery.

I am very gratful to you both for your respective insights.

Hi @NP0094,

Do you think that once you had the ECT once,that then doctors ordered ECT on your subsequent stays "a bit too readily" due to it being on your record that you already had it before?

What concerns me isn't ECT itself,its rather that some doctors often disregard whether the patient themselves believes it worked for them or not.

They put more value on their own observations of the patient and/or sometimes the families opinion of whether they believed it helped the patient rather than what the patient is stating and i consider this a patronising and paternalistic mindset in medicine.

A doctor or nurses observations of a patients progress are not fully reliable as they don't see them functioning in everyday to day life,plus patients might put on a external smile or be cheery (without not feel that way internally) and doctors will take that to be progress.

Families observation of progress after ECT can often be unreliable too because they can tend to have "confirmation bias".

The patient is the one who is living the Depression(or whatever) in their lives so their own perceptions should matter most.

A patient should also be told of the potential long term effects of ECT and be allowed to weigh up whether they want to go ahead or not however often this isn't the case as you know.

I don't know how you coud avoid this happening to you again as in many Psychiatric wards patients are disempowered and Psychiatrists are hugely empowered.Same goes for the legal system.

Perhpas you could contact the Official Visitor programme if you ever find yourself in this situation and tell them your situation and feelings and see if they can help?

http://www.ovmh.nsw.gov.au/about-us/who-are-the-official-visitors.html

I am glad you posted again to further the discussion. It is good to be able to watch other people's stories and expereinces. It gives us better information and perspective to reflect on our own.

I can only share my 2nd hand experiences about it. 2 years ago we had discussions about ECT in our family. I was extremely worried and very concerned when my son's psychiatrist said she was considering it for my son on his first admission to the mhu. My mind and internal feelings went ballistic though I was able to "act" calmly. It did not happen .. They encouraged me to spend a lot of time in the closed ward with my son and said that I always managed to help my son, which was good for me, but still a terrifying experience watchng him suffer so much.

My mother did have one session of ECT in the 60s, whilst I was in an orphanage. I spoke to her on the phone about it, while my son was in hospital.

It was the first real and calm conversation that my mother had about the subject. She assured me that it was ok for my son to have the treatment and that she felt it jolted her out of her depression. But as my mother was so defensive about everything all my life and in the end betrayed me seriously .. I took that with a grain of salt. And figured she was looking back on it from 50 years memory and did not want to deal with the things that had happened that "caused" my son and I to become so isolated and for him to be in the mhu in the first place. She never visited him there but was busy flying to visit other rellies. She died last christmas.

In the end the hospital team did not force the issue of ECT and released him into my care. he is doing ok and we are walking along steadily ... though delicately.

I tell this story as it shows some of the generational concerns and issues.

I am sorry that it seems relatives seem to "prefer" the consequences of ECT as it makes client more docile. I certainly did not want that for my son ... He is young and I want him to access his full potential .. and am currently concerned about the anti-psychotics ... another story. I was surprised mother kep up the idea that it would be a good thing for him.

The psych at the hospital did all the "reassuring" things saying how it was much improved etc. But also mentioned it to try to get through my exhusband's over confident attitude ... to shock him into realising that my son was going through a serious experience.

You have had more ECT than most as I understand it. It takes courage to raise these issues and you did it very sensitively. Thank you. I am sorry you are dealing with the negative effects. I am sorry that there isnt more "patience" on the part of mental health professionals in dealing with people's psychological situations that they want a quick fix that has serious long term effects.

Please keep posting on the forum. As you know ...advocacy is important.