‘I didn’t recognise myself anymore’ 

In the weeks after her first course of electroconvulsive therapy, Dr Sue Cunliffe found she could no longer walk through a door without bashing into the door frame.

‘Everything you learnt and knew is no longer there. Your brain just lets you down all the time.’

Walking through doors wasn’t the only thing Cunliffe suddenly found challenging. Then a paediatrician who had been in the process of qualifying as a consultant, Cunliffe found she could no longer recognise people’s faces. She struggled to help her kids with their times tables. All her medical training was gone.

“I remember standing in the kitchen thinking, should I be able to walk through a door without walking into a door frame, or have I always walked into door frames?” says Cunliffe, looking back on a period that would change her life forever.

ECT was first popularised in the 1930s as a treatment for depression. During a session, electrodes are attached to the head and a shock of 70-450 volts is administered to deliver a seizure-like fit.

Performed under general anaesthetic, the NHS website says ECT is sometimes recommended for severe depression if all other treatment options have failed, or when the situation is thought to be life threatening.

The theory is that by sending an electric current to the brain, triggering a seizure, you can “reset” the brain’s existing electrical current, relieving the symptoms of some mental health problems. Although ECT has been used for more than eight decades and many patients have claimed the treatment has changed their lives for the better, the National Institute for Clinical Excellence (NICE) website says exactly how ECT works is still not fully understood.

Cunliffe was referred for ECT in 2005 amid difficulties in her marriage. Then in her late thirties, she had been warned the treatment may cause headaches and short-term memory loss, but what she experienced was far from the so-called common side-effects she’d been told to expect.

“My memory for past events was gone,” she says. “My memory for what I needed to do in the next minutes, or what I’d just done, was gone.

“I’d been left so damaged that I didn’t know how to count money out. I couldn’t read. It took me five years to be able to read again. And that started off with having to read kids’ books. I had lost quite a lot of my vocabulary.

“Speaking [became] a problem because my speech was slurred. But not only that – I wouldn’t be able to remember words. So I would have to try and describe [something] and then often by the end of the sentence, I’d forgotten what I was trying to say.”

When Cunliffe returned to her psychiatrist to describe her symptoms, she was diagnosed with depression and referred for another cycle of ECT.

This time the dosage of electricity Cunliffe received was increased, but after a total of 21 sessions Cunliffe’s memory had not returned and she was left with life-changing effects.

Cunliffe could no longer work, struggled to perform day-to-day tasks and often fell over due to poor co-ordination. She was convinced the ECT was responsible for her sudden memory loss and inability to function, but what followed was two years of denial by the medics who treated her.

“I lived two years of absolute humiliation,” says Cunliffe. “I was saying ‘you’ve done something to my head’, [but] me and my family were being told there was nothing wrong with me. It was in my head, or it was my tablets. [According to the psychiatrists] it had nothing to do with ECT.

“And this is what a lot of ECT victims find, because you then get labelled with other diagnoses and your family are told you are just mad. You don’t get support, you don’t get listened to. You can’t make sense of your world.

“It’s like you’ve lived with this person for 38 years and suddenly, everything that you learnt and knew is no longer there. And your brain just lets you down all the time.

“It’s humiliating to walk into a shop and tip your money out and say: ‘Just take how much money you need, because I don’t know how much to give you.’”

Eventually Cunliffe was referred to a neuropsychologist who diagnosed brain damage as a result of ECT.

After months of counselling Cunliffe was eventually able to come off medication, and although she has never been able to return to work she has carved out a new role as a campaigner, fighting for other ECT patients who have sustained life-changing injuries as a result of their treatment.

Andy Luff was given ECT in 2015. Since then he has had to relearn to brush his teeth, make a bed, run a bath, use a washing machine and wash his hands. At one time he was unable to recognise his own parents.

Once an avid reader and keen writer of poetry and short stories, Luff owns more than 700 books he is now unable to read.

“I have constant memory loss,” says Luff, who previously worked as a care home manager. “Immediately after the treatment I woke up and said who is Andy? I didn’t even recognise myself anymore.

“I can’t read or retain information. For four and a half years I didn’t get out of bed. It’s only recently that I remembered that I am able to go out and buy things. I’d forgotten I could even do that.”

Both Cunliffe and Luff are sharing their stories as part of a campaign for an independent review into ECT. Made up of mental health professionals, researchers, ECT recipients and carers, the group is calling for an inquiry into the practice of ECT along the lines of the recent Cumberlege report into pelvic meshes, which found lives had been ruined because officials failed to hear the concerns of women – too often dismissing worries and complaints as “women’s problems” and exposing failures in the health system.

A recent report by clinical psychologist Professor John Reed, published in Psychology Today in March, cites “major flaws” in the administration and regulation of ECT. He says: “ECT has such a high risk of brain damage that it should be very carefully monitored and regulated. This is clearly not happening. Patient safety is being disregarded.”

As part of the report, Freedom of Information Act (FOI) requests were sent to 56 NHS trusts. Thirty-seven (66 percent) provided data. The information provided, which related to treatment carried out in 2019, showed around 2,500 people are still being given ECT annually in England, compared with about 50,000 in the 1970s. In a third of cases ECT is given without consent.

The research also found a 47-fold difference between the trusts with the highest and lowest usage rates per capita. Thus, the report states, “the probability of getting ECT seems to be a postcode lottery based on the personal opinions of one or two local psychiatrists”.

The audit found Greater Manchester Mental Health NHS Trust (GMMH) had the fourth highest rate of administering the treatment in the UK. It insists its use of the treatment is within NICE guidelines.

Leeds and York Partnership NHS Foundation Trust and the South West Yorkshire Partnership NHS Foundation Trust had a slightly higher number of ECT cases per head of population than the national average.

The disparity between how and where ECT treatment is administered is an area author and clinical psychologist Craig Newnes has been researching for decades.

In his book A Critical A-Z of Electroshock, Newnes examines how psychiatry, allied with psychology, experiments on patients in the name of helping and healing. Newnes writes that both professions have a “boys with toys” approach in using technologies to try to change people.

Newnes says earlier in his career it was much easier to obtain figures on localised ECT treatments without the need for FOI requests but health authorities are no longer obliged to keep the data.

“One of the reasons they stopped keeping them is that they reveal the amazing difference between places in terms of the amount of the number of treatments that are given,” he says. “So for example, one of the things I showed many years ago when you could get the figures was in Suffolk. Suffolk at that point was split into two different trusts. One of the trusts did no electroshock at all. And the other one did five or six treatments a week.

“In Edinburgh there is one hospital that does 11 times the amount of electric shock that anyone else does.

“I think the reason they’re a bit loath to give the figures anymore is that it kind of shows that electric shock isn’t some scientific procedure. It is something that certain psychiatrists prefer.”

Professor Reed’s research found women are twice as likely as men to receive the treatment, and the majority of patients (58 percent) are over 60. This is despite women and older people being particularly prone to memory loss following ECT.

The chapter W in Newnes’s book is dedicated to women. He says: “Depression often reveals itself as tiredness. And what people frequently do is go to their GP and their GP will say take these antidepressants. They will help you sleep.

“If you look at the multiple roles of women in society, they are pretty much exhausted a lot of the time – far more than men I suspect. And so one part of the problem is that women are more likely to be inscribed with depression. They’re more likely to be given antidepressants, they’re more likely to be given electroshock.

“I also talk in the book about a much more simple thing, which is that we live in a patriarchal society. We live in a society where certainly psychiatry is dominated – it’s dominated by men, but one’s point is it is dominated by male ideas. And you could argue that men simply don’t like women. And if you’ve got a little old lady in front of you who simply refuses to get better, then why not electroshock her?”

For Cunliffe, the use of ECT and treatment of mental health patients is at a tipping point. She wants acknowledgement for the injuries
she sustained, and she wants better support for those whose lives have been turned upside down.

“We just want equality, and I don’t care whether [ECT has] helped people,” she says. “It’s about time that the harmed people’s stories were listened to and we got rehabilitation and support.”

Photo: former writer Luff was bed-ridden for four years. He lost his ability to read and forgot his name

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Royal College of Psychiatrists statement on ECT

In the UK ECT will usually be suggested if your condition:

• is life-threatening and you need a rapid improvement to save your life;
• is either causing you immense suffering or is likely to get worse, so that a rapid improvement is needed;
• has not responded to other treatments, such as medication and psychological therapy;
• has responded well to ECT in the past.

Research shows that it causes the release of certain brain chemicals. These seem to stimulate the growth of some areas in the brain that tend to shrink with depression. ECT also appears to change how parts of the brain that are involved in emotions interact with each other.

As with many medical treatments, we need more research to help us better understand how it works but most people who have ECT see an improvement in their symptoms.