From insanity to imbecility”. Irwin 1948

The debate surrounding ECT always gets side tracked into patients like me saying that ECT damaged them and others saying that it helped. This distracts from the real debate…. Does ECT meet the rigours of medical science required by all other treatment?

I am attempting to bring to an end the controversy that has surrounded ECT since its first use almost 80 years ago. Controversy is driven by lack of research. There is an institutional cover up by psychiatrists all over the world who have doctored research and hence misinformed their patients. This is a serious accusation to make but I hope that in this short time I can begin to show you some of these issues surrounding ECT. I have further evidence.

The psychiatrists have had 80 years to do research and is has had 13 since the release of NICE (national institute for Clinical Excellence)guidelines in 2003 to which made a recommendation that research be done to prove its safety and effectiveness. They have failed to do this. Neither has NICE held them accountable.

There is no place in 2016 for a treatment that is given based on the opinions and beliefs of doctors and on seriously flawed research evidence. A treatment should only be given if it has proved its worth in numerous good quality, reproducible research. The Royal College of Psychiatrists standards fall well below those that other specialties demand. Yesterday in Midlands today Lindsay Doyle the reporter quoted Worcester hospital as saying that Worcester ECT unit calls itself a “centre of excellence”. This means nothing without knowing what these standards are. It is misleading the public.

They have kept the amount of brain damage that ECT does under the radar because of their don’t look don’t see policies. By its own admission the Royal College of Psychiatrists says that anywhere between 10 and 50% of patients get brain damage following ECT. Any type of brain injury from ECT is a serious side effect. These should be reported using the yellow card reporting system. If the yellow card reporting system does not have thousands of reports of brain injury it means that the psychiatrists are failing to report them. By not reporting brain damage ECT is allowed to carry on; if reported I am confident that ECT would have been stopped.

I am asking for an independent review to produce a meaning full risk benefit assessment of ECT; without this patients cannot be given informed consent.

I was a hospital doctor until 2003 when I developed a severe depression. Having failed drug therapy, I was voluntarily admitted to hospital where I was given 2 courses of ECT totalling 20 shocks from 2004 to 2005. I was consented that the only side effects were those of short term memory loss, headache and risks of general anaesthetic.

By the end of the course I was clumsy and couldn’t walk in a straight line. I kept falling over and walking into door frames. My memory was so bad that I didn’t know if I had always bumped into door frames! My speech was slurred and I had severe word finding problems, and my hands shook. I could not do my 2 times tables or my children’s primary school homework. I could not use money; I had to ask shop keepers to take what they needed. It took me 5 years to be able to read again and to use a computer.

Prior to this I had been a hospital doctor capable of running a neonatal intensive care unit.

I can never work again and I still struggle on daily basis. I fought for 2 years to be seen by a brain specialist. My consultant kept attributing these symptoms to my depression and tablets. This in itself is appalling, my doctor giving ECT should know the signs of brain damage. I see myself as the lucky ECT survivor because I had enough medical knowledge to know that this was brain damage. I pushed for a referral and was eventually seen by a neuropsychologist at Worcester Hospital who diagnosed brain damage secondary to ECT. I have links with numerous global ECT victims, they have not had their brain damage recognised and cannot move on with their lives. I feel that because I am a doctor and because I have not had depression for 7 years I am a good voice for these people.

This is a quote from a patient in America “this is a very real depression I'm now experiencing as a result of having my children's memories robbed, my career stolen and life experiences deleted. They did not ask for consent to do this. One of the side effects of shock that they don't tell you before you "consent", is the worsening of the original depression due to the "adverse" effects of treatment. Who wouldn't be depressed after having a meaningful life deleted? Our lives had meaning.”

Yesterday Worcester Hospital was quoted by Midlands today as saying that it had been accredited with excellence by ECTAS (The Royal College of Psychiatrists) and is one of the leading providers in the UK. Excellence compared to what standard? The Oxford Dictionary definition of a centre of excellence is “a place where the highest standards are maintained: the hospital is a centre of excellence in research and the teaching of doctors". I believe that the Royal College Standards fall below that in many ways. Firstly that ECT machines are untested and secondly they are using a treatment that NICE in 2003 stated that there was not enough research on it. I do not believe that any other medical specialty would use a treatment with a lack of evidence and testing and one that causes so much brain damage. The machine is deemed by the FDA (federal drugs agency) as having the potential to produce damage …..and it has not been proven that the benfits outweigh the harm.

As I will demonstrate the Royal College does not practice medicine to the standards that other medical specialities in the UK are expected to reach. Today every medical treatment has to undergo rigorous testing and the results must be repeatable. ECT does not pass those tests and so by Worcester claiming that they are classed as excellent is a deception to the public.

As The Royal College ECT information sheet states ECT remains controversial. Controversy only continues because they cannot provide research evidence to defend their practises and prove their critics wrong. Their practices are based on opinion and personal views. This should not happen in 2016. Nobody is holding them accountability.

The controversy will continue until patients like myself get our cases heard and are given an apology. Psychiatrists dismiss us as “emotional” and left wing fascists, these are a few of the labels that we have been given.

In 2000 The Guardian ran an article about Pat Butterworth who had the names of 600 brain damaged patients. She was trying to sue her psychiatrist. Nothing came of this. Since when has this country ignored so many patients damaged by medical treatment? Only when they are mental health patients. Patients with brain damage do not have the ability to make complaints for years after their treatment and generally when they do they are dismissed. The trauma of battling is just too distressing and time consuming especially when you are living with a disabling bran injury.

Unlike the Royal College I am acting appropriately I am trying to get the government to hold the psychiatrists accountable for their actions and ensure patient safety.

I have evidence that over the years ECT research has been doctored to make ECT look safer and more effective than it actually is. However I will give you 3 examples that easily demonstrate the lack of science behind ECT. This evidence is in the public domain.

1. ECT was first practised in 1938. Because of its age the machine has never had to undergo the rigorous testing that is expected of all other treatments in this day and age. However in the early days of ECT the doctors using said that it worked by causing brain damage. This has been “forgotten” by psychiatrists giving ECT today. However the opponents of ECT quite rightly say that ECT causes brain injury every time it is given. ECT causes a closed brain injury. Post-mortems on animals and humans early on in the history of ECT demonstrated small bleeds in their brains. ECT machines in America are placed in class 3 – "risk of permanent damage, and no evidence to prove that the benefits outweigh the risks"

2. In 2003 NICE (National Institute of Clinical Excellence) produced the first ever national guidelines for ECT. Psychiatrists are always quick so say that NICE agreed the use of ECT. However they seem to have failed to remember that importantly NICE said that the research regarding ECT was inadequate to ensure the effectiveness of ECT and its safety. It recommended that more research was needed. The only people who can do this are the psychiatrists giving ECT. It has not been done.

3. The Royal College of Psychiatrists have an information leaflet. It is a very flawed document in that it is biased toward getting patients to have ECT and it clearly demonstrates that there is inadequate research into the safety and effectiveness of ECT. This lack of evidence means that no patient can be given a meaningful valid consent. Often ways of describing effects or side effects are described by words and no numbers are given. It is left to imagination of the patients.

At the beginning they quote that ECT is safe and effective.

Effectiveness has to take into account how many people are helped by how much and for how long. The leaflet says that anywhere between 30 and 80% of people found it helpful. The range is huge and shows that there is a lack of good evidence. Turning it the other way anywhere between 20% and 70% said it was not helpful. They quote that ECT provides short term relief but no time is given. It says that sham trials show that ECT is better than sham(placebo) ECT. These were on schizophrenic patients not depressive patients. It fails to quote 3 sham trials on DEPRESSED patients which showed that there was no difference in those patients that had ECT and those that had sham ECT. i.e. it did nothing. Many trials show that the effect lasts a few weeks and most of the benefits are lost by 3 to 4 months and by 6 months there is no advantage. If they had the evidence to prove that the effects of ECT were long term they would state it. Not stating it shows that there is not enough research on the subject.

What constitutes a safe procedure? In its first paragraph it states that ECT is safe; much later on they quote that anywhere between 10 and 50% of patients get brain damaged. This is not my definition of safe!

Going on this information supplied by the college if ECT units do not diagnose 10 to 50% of their ECT patients with brain damage then the doctors aren’t looking for it. They are practicing a “don’t look don’t see policy.” Absence of evidence is not evidence of absence. According to my psychiatrist I did not have brain damage….. it was diagnosed 2 years later by a neuropsychologist. If she couldn’t see that I had severe brain damage that is worrying.

If we use the statistics supplied by the college in their information leaflet to calculate the possible outcomes of ECT then:

The best case scenario if 100 patients are treated, 80 people get short term remission and feel it helps and 10 get permanent brain damage.

Looking at the worst case scenario if 100 people are treated 30 people find it helpful in the short term and 50 get permanent brain damage.

Looking at the unquoted sham studies if 100 people get ECT there is no benefit and anywhere between 10 and 50 people have long term brain damage.

I believe that this evidence demonstrates that ECT has not been tested enough to ensure that it is safe and effective; neither is there enough information to allow valid consent to be given. The possible outcomes vary enormously.

Without information meaningful informed consent is impossible.

What we know with absolutely certainty is that it can cause serious life changing side effects.

To be classed as an excellent unit when the standards set by the Royal College are so low is no great achievement.

We are silenced by the institutional cover up by the college of psychiatrists. They are not held accountable by any one. Until this situation is exposed people like me will continues to be churned out by the ECT units that claim “excellence”.

In all other medical practice this level of side effects would be seen as unacceptable. All doctors should report serious side effects via the yellow card reporting system. That means that common and serious side effects are monitored and the governing body intervene if there are excessive reports of side effects. Psychiatrists don’t do this, so they stay under the radar and ECT continues.

They appear to be allowed to operate outside the high standards of evidence based medicine that other specialities would never get away with.

This is the truth behind ECT an untested machine with no solid evidence. If someone hit me and gave me this level of injury it would be seen as a serious assault. The doctors hide behind their white coats and call it treatment.

Psychiatrists are still discussing the way to give ECT, what dose for how long, what wave form to use. They don’t know how it works. They just tinker with the machines to do what feels right. People demand that animal testing be stopped I ask that human testing of ECT machines be reassessed.

How much longer can this go on? Every time someone has electrodes attached to their head it is another chance that someone’s life is being electrocuted away. It is probably happening right now.

Psychiatrists are too obsessed with the unproven benefits of ECT and not the risk. In Medicine the basic concept is do no harm. If patients are depressed because of life…. they will feel worse after ECT when they can’t work and have a chronic disability.. worrying how the next bill will be paid.

Jeremy Hunt, David Cameron, NICE, the GMC or the Health Ombudsman must set up an independent review body. The psychiatrists have had 80 years and not been able to prove that ECT is an effective safe treatment, they have not lived up to the task. They quote their opinions not figures.

The review must:

· Establish an independent enquiry.

· Ensure that every patient suffering brain injury should be reported via the yellow card reporting system.

· Review patient’s notes to look for those who have undiagnosed brain injury.

· If the hospitals have failed in their duty of care to a patient this has to be admitted.

· Set up a support group and website for ECT patients.

· Ensure that patients get the support from a brain injury specialist

· Review all the available evidence on ECT. This should be started from scratch as many literature reviews have “doctored “the evidence and these incorrect conclusions get propagated as time goes on.

· More research be done.

· A risk /benefit analysis should be done

· Following this ECT is either regulated by an independent body or ECT is banned

· All psychiatrists and nurses should learn how to recognise brain damage, not just how to pass electricity through a person’s brain.

· If it continues then an accurate information sheet should be produced with meaningful statistics.

· A consent form that ensures a valid consent is produced.

· Any patient undergoing ECT should be assessed by a neuropsychologist before and during the treatment and for a minimum of 6 months after ECT.

· The Royal Psychiatrist’s should be investigated over its biased information sheet and failure to do the research that NICE asked for.

· The College should be investigated for not submitting yellow report cards.

· ECT survivors, like any other victims of mal practice in medicine should be compensated if they have been “misconsented”. consent in medicine is seen as a basic human right.

I am not asking for a ban of ECT but to get an inquiry launched as to why such an invasive therapy has evaded the strict rules of testing required buy all other treatments; that the Royal College of psychiatrists be held accountable for ensuring that, as requested by NICE in 2003, more research regarding safety and effectiveness be done.

I challenge the Royal College of psychiatrists to produce for scrutiny their evidence that shows ECT is “safe and effective”; also I challenge them to agree to do more research into ECT.

I am going to write to the GMC and report my psychiatrist for neglect and abuse. I am going to write to NICE and the Health ombudsman to raise my concerns.

I have a meeting with the hospital management on the 10th of March.

The hospital have quoted that I was treated according to NICE guidelines. I wasn’t, that is the basis of my complaint in 2010 which was rejected and my new complaint. It will be interesting to know how they will wriggle out of this one.

I believe that there is enough evidence and enough of a change in the complaints culture now to uncover this institutional malpractice which is hidden behind the title of respectability, The Royal College of Psychiatrists.

I hope this helps to explain my concerns about ECT.

Thanks for reading it. I hope you can help highlight my campaign.

by Dr Sue Cunliffe