Jennifer tells us the story of her mother who received ECT. She was a very resilient person, kept a job and looked after the children. Three bereavements during her life -- her husband, her sister, and later on, her son -- made her brain finally break down and she developed a severe depression in her old age. The final bereavement occurred during lockdown. They were one of the first families to experience trying to grieve and bury a loved one, whilst not being allowed to be together. Her mother’s depression worsened, and she became psychotic, believing that she will become financially destitute and also grossly obese. After four months in hospital, there was no improvement and she continued to decline. After the initial shock of hearing the suggestion about ECT, Jennifer researched the topic and the family agreed on the treatment. After eight sessions, her mother improved. This was not the end, as after a year, towards the anniversary of her son’s death, the depression came back. More treatments, including cold water therapy in Scottish lochs, but made no difference to her, and ECT was prescribed again. This time it took twelve sessions for it to work, but she is still well at the time of writing.

Tania starts her story with the dramatic description of her being prepared for ECT while pregnant. She has made an advance decision to have this treatment if she gets unwell during the pregnancy or after giving birth. Such a decision is also known as a Ulysses Pact. She wanted to get pregnant and knew that there was a strong risk of relapse of her bipolar disorder, which would make the pregnancy very risky. The story continues with the description of her life which was affected by episodes of illness that responded to ECT, and subsequent relapses. Over the last few years Tania has been on maintenance ECT and has had more than 200 sessions altogether. This did not prevent her from progressing into a very successful academic career. At one point she was at the Institute of Psychiatry in London, jointly leading a large research project on mental health advance directives, making her uniquely qualified to write on this topic.

For all intents and purposes, life was good for Karen: happily married and settled with three children and a nice life. A series of events -- including bereavement; a large, organised fraud involving threats, police involvement and a court case; and the sudden severe ill health of her husband -- sent her down a deep hole. Major depression and anxiety opened boxes that were closed many years ago containing trauma that was never disclosed and everything collapsed. PTSD added to the deep despair and there were numerous episodes of self-harm and suicide attempts. Six years of repeated admissions (mostly involuntary) followed, being treated with medications and four courses of ECT. ECT was instrumental in Karen being well enough to be able to engage with the therapy she needed for long-term recovery. The story is narrated with original diary extracts and poems written at the time of her suffering. Karen now works with the ECT Accreditation scheme, reviewing ECT clinics around the country, and has spoken extensively about her experiences to journalists and at conferences, trying to reduce the stigma that surrounds the treatment. She is also employed in the clinic where she received treatment as a peer support worker

The story is told through the experience of the patient, Paul, as well as through his partner and carer during that time, Sally. Their accounts feature next to each other, to provide a contrast for the different experiences of the patient and his wife. Following the decision to take early retirement from a high-powered job in business, Paul suffered a severe mental breakdown, which gradually led him into a world of fear, paranoia, catastrophic thinking and a desire to take his own life. For his own safety he was sectioned and spent four months in a psychiatric hospital. After various antidepressants and antipsychotics had no effect, Paul was persuaded to undergo ECT and, after only six sessions of treatment, had what his partner describes as ‘a complete and miraculous cure’. Four years after the event he is still fit and well and has had no relapses. This story explores the thoughts and feelings of someone who is suffering with acute anxiety/depression, as well as presenting the fears and desperation experienced by his partner.

CJ experienced mental health problems and trauma during childhood and adolescence. This was treated effectively with psychotherapy. He remembers being exuberant and outgoing. Then, at the age of twenty-one, he developed a severe depressive episode, feeling numb and emotionless, unable to taste anything. Due to the previous history, a diagnosis of personality disorder was suggested, resulting in a delay in starting ECT whilst an inpatient. Relapses followed, the first one in Brazil, where he was quickly offered ECT. Back in the UK, CJ found pervasive barriers to getting treated with ECT, especially maintenance ECT, which he asked for several times, having seen the effect of the acute courses. He had to first try various drug treatments. There was also hesitancy in receiving psychotherapy because it was felt that ECT may affect his ability to engage in therapy. CJ feels that the community team had been inadequately resourced, equipped and educated about ECT to properly support him as an outpatient. CJ finishes the story with a description of his ‘life on maintenance’, which did not stop him from starting studies on a degree and working part-time as a research assistant.

Depression and psychosis came out of the blue for Berlinda, who found herself in A&E after trying to kill herself with various means. She is lucky to be alive, probably due to the excellent reflexes of a driver whose car should have driven into her. Admission to hospital was proving impossible due to lack of beds. Recollections from the hospital stay are patchy and are supplemented by the accounts of friends and relatives. More self-inflicted injuries followed, and the situation was getting out of control. When ECT was mentioned after a long time, Berlinda was sceptical of it as she thought that nothing would help her. And then everybody noticed an almost immediate relief of her symptoms. Berlinda has remained completely well since and started taking part in inspections of ECT clinics for the ECT Accreditation Service.

Jan starts her story with a dramatic description of a complicated pregnancy and birth that is followed by stress, breastfeeding problems and insomnia, and gradually develops into postnatal psychosis and a suicide attempt. She uses detailed day-to-day memories of the events. She is admitted to a psychiatric intensive care unit. Despite asking to have ECT, this treatment is not given to her. Eventually a combination of medications and the care from the country’s leading Mother and Baby Day Unit lead to a full recovery. Jan remains well for sixteen years despite giving birth to twin daughters in the interim. Seventeen years later, and seemingly out of the blue, Jan experienced a sudden and dramatic psychotic depression. The second half of this story follows Jan through her six months as a hospital inpatient and two suicide attempts. One night she escapes, crashes her car on the motorway and wanders without shoes on the hard shoulder. Eventually, a course of twelve sessions of ECT brings a quick recovery, which felt to Jan like a miracle. The chapters end with a description of a happy holiday with her children.

At a fairly early age Lucy was admitted to a psychiatric hospital and then spent years in low-security psychiatric units. After an episode of neuroleptic malignant syndrome, she became physically unwell and stopped eating. When her life appeared to be danger, ECT was suggested. Lucy refused to have it and the first sessions were given under restraint. After eight sessions ECT hadn’t worked, and the team stopped it. A second course was started later, this time with Lucy’s agreement, and it worked. She gradually improved, had psychological treatment, engaged in rehabilitation and eventually was discharged home. She continued with maintenance ECT as an outpatient. She got married and started work as an Expert by Experience for the local hospital.

Sue was living a charmed life: financially secure, a stable marriage, a holiday home, and lots of holidays made possible as a result of early retirement. In March 2020 she and her husband became locked down in different countries for several months. Sue contracted Covid, and symptoms of long Covid followed. Symptoms of depression developed, and Sue started carefully planning how to end her life. Then she became psychotic, believing that she would become destitute and homeless, that she had infected the country’s Child Protection system with computer viruses and that her husband would cheat her out of her money. Three hospital admissions and a lot of medication later, she was still suicidal. At that point her psychiatrist suggested ECT. Sue’s first reaction was horror. She had always thought of ECT as throwing the furniture of a doll’s house in the air and hoping it lands in the right places in the right rooms – an unlikely outcome. She decided to go ahead and ‘getting all the furniture in the right place’ has given her life back. Her husband finishes the story with recollections of Sue’s psychotic ideas and his inability to do anything about them.

This is about how the group came together and how the stories developed through discussions, as welll as the feelings that people experienced during writing.

Introduction to ECT

Liz remembers experiencing episodes of depression since an early age but completed her university degree and worked as a medical doctor for many years. The story starts with the description of a psychotic episode that she experienced for the duration of one summer. Diaries kept from that time were used for the story, giving the episode detail, helped by a poem also written at the time. The depression gradually got worse over the years, despite trying more than twenty different antidepressants and mood stabilisers, regular exercises and prolonged courses of psychotherapy, causing an early retirement and eventually hospital admissions. Finally, ECT was recommended, and it worked despite the very long and resistant type of depression. The improvement was incomplete, though; it required maintenance treatment and caused marked memory problems, which are also described in detail.

Ruth starts with details from her childhood, when she tended to be a perfectionist and had obsessions around contamination. Ruth suffered with episodes of depression herself, but they were short lived and didn’t require treatment. Her severe depression started while on a long travel in two continents. She developed delusions of guilt and was receiving messages, resulting in an admission to a hospital in Canada, and then permitted to fly back home under sedation. Several years later, after severe social stressors, she relapsed and remained depressed for several years. She was again psychotic, believing that she had ‘killed the world’ and eventually became almost mute. Her sister, aware that their grandfather had received ECT, researched the topic and felt that it should be tried, especially after listening to a talk by Dr Sherwin Nuland, who had ECT himself. It was him who used the phrase ‘rising like a phoenix’, which was chosen as the title of this chapter. Ruth had twenty-three sessions before she felt better. She describes in detail her memory problems. She has since followed Sherwin Nuland’s lead by talking about her ECT experience publicly.