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We need to talk about severe #mentalillness, and how to better fund its treatment, writes Manuela Saragosa

Manuela Saragos

When my partner Steve was sectioned under the #mentalhealth act in 2012, our #children found it easy to explain why their father was being kept in hospital. “Daddy’s brain isn’t working properly,” our seven-year-old son said. “The doctors are fixing it,” our five-year-old daughter added. It was their way of rationalising the irrational. Their father’s erratic phone calls from the ward, his sometimes incoherent ramblings, his emotional and physical absence in the preceding months. He was usually such a loving, hands-on father. Not long after, Steve took his own life. He was 38. It’s been eight years and writing those words — “he took his own life” — still fills me with horror. Horror and grief, guilt, despair, anger, regret. There are days when I feel them all simultaneously. But also shame. We talk far more openly than we used to about #mentalhealth, but we don’t talk as freely or sympathetically about severe #mentalillness. Just try mentioning psychosis or #schizophrenia in casual conversation. Steve died on an exceptionally cold and icy Thursday night in February 2013, one of those nights when your breath hangs ghost-like in the air. Ward staff had allowed him to go out for a walk that evening. He’d been in an NHS hospital for more than four months after halving his medication overnight without consulting his #doctor, causing a severe relapse. The meds were to treat schizoaffective disorder, a combination of #schizophrenia and #bipolar, the worst of both terrible worlds. In Steve’s case, his illness manifested as persistent delusions, mania and #depression. “It’s just in your mind,” I would tell him, uselessly, after an episode, once the volume had turned down on the recurring, persecutory thoughts that tormented him. “My mind is all I have,” he would rightly reply. ‘Daddy isn’t coming back,’ I said. ‘He didn’t want to live any more and he made himself die.’ There are no parenting handbooks for this It’s possible Steve had hallucinations too. I will never know. The #stigma weighed on him, and he did his best to hide the worst of his illness. Even when the volume was turned up, he would continue to soldier on into work — in the years when he could still work — returning home at the end of the day with his shoulders bunched up near his ears, his eyes flitting left and right, unable to speak. Then he would escape into the garden, pacing furiously and chain-smoking. In her memoir of living with #schizophrenia, The Centre Cannot Hold, Professor Elyn Saks writes that an episode feels like a dissolving of the mind, “like a sand castle with all the sand sliding away in the receding surf”. Steve would try to hold it together, like when you have the flu and try to push through the day, “sweating, shaking, nodding politely to colleagues while barely controlling the nausea”, as Saks writes, “and then, once you’re home, you collapse”. The flu analogy, of course, only goes so far. You can shake off the flu but the #WorldHealthOrganization says that in 60 per cent of cases, #schizophrenia is a prolonged illness. Statistics also suggest that, singularly among illnesses, people with #schizophrenia fare better in the developing world, where the rates of remission are higher. It’s not clear why; the WHO speculates there’s more support from extended family networks and tolerance of people who are sick. © Charlotte Ager But so much of what we know about #mentalillness is based on guesswork and supposition. Consider, for example, that medication to treat psychosis was stumbled on by accident. Chlorpromazine, the first antipsychotic, was developed in 1950 by the French pharmaceutical company Rhône-Poulenc but was not originally planned to be a #psychiatric drug at all. It was developed as an antihistamine and just happened to induce calmness without sedation, leading to its #psychiatric use. Generations of similar drugs have followed, but they are not a cure so much as a sticking plaster, with variable results. As the #mentalhealth #nurse turned author Nathan Filer notes in his book about #schizophrenia, The Heartland, for some people, taking these drugs is not really a choice between psychosis and wellness but rather a choice “between psychosis and a twilight state”. ‘It’s just in your mind,’ I would tell him, uselessly, after an episode. ‘My mind is all I have,’ he would rightly reply In Steve’s case, antipsychotics slowed down his racing thoughts, but they also made him lethargic. He put on weight. The drugs didn’t stop breakthrough episodes but they did help keep him in work. For a while he would dutifully drive himself down to the GP surgery every month for his shot of antipsychotics. As the needle went in, he would chat amiably with the nurse about the weather or where to go on holiday next. “He seems so normal!” one medical officer exclaimed to me. Not long after, Steve switched to an oral alternative. Which is how we got to the last six months of his life, when it became clear that his reality increasingly bore no resemblance to that of other people’s, that he was drifting ever further away from us. I’d told Steve I could not live with him any more unless he kept to his medication. It did not feel safe for me or our #children. It could also be frightening and disorientating; sometimes it was hard to tell where Steve ended and his illness started. Terrified people do terrifying things. They accuse you of being in cahoots with the pharmaceuticals industry. They hide your phone and lock you in the house. But Steve could not — would not — accept that he might have to be on medication and in treatment for the rest of his life. We’d been through a long list of #psychiatrists and psychotherapists, both private and NHS. In private treatment, he was able to choose his medics. He had a voice in his treatment. Once the private insurance ran out, we were back on the NHS, and choice became an unattainable luxury. The picture is even more grim today than it was then. There are now 1.6 million people on NHS #mentalhealth waiting lists in England, according to the charity Mind. NHS Providers and #mentalhealthservices estimate a further eight million people in England need access to #mentalhealthservices but are deemed not “unwell enough” to be seen, meaning they do not meet clinical thresholds. That eight million includes people suffering from severe #mentalillness such as psychosis. Referrals shot up during the #pandemic but there has been no matching increase in investment in #mentalhealthservices. Meanwhile, the Royal College of #Psychiatrists recently noted that one-tenth of consultant #psychiatrist posts (568 out of 5,317) are unfilled. And if you do get allocated to a #psychiatrist or psychotherapist, you have to hope to God they’re a good match; numerous studies have shown that the single most predictive-of-outcome factor in psychotherapy is the therapeutic alliance, the quality of the relationship between therapist and #patient. I was at work when I received the call telling me they’d found Steve’s body. It was a Friday morning and the rest of the day is a series of snapshots. Collapsing in the studio. Sitting stunned on the train home. Then I am at my sister’s house, calling the coroner’s office. An answerphone message tells me everyone there has left for the weekend. There’s a call to the #police too, an overworked family liaison officer at the other end of the line. “Are you religious?” he asks me, impatient to deal with other, apparently more pressing matters. “Because if you are, it might help you to find a church and light a candle.” About 6,000 people take their own lives every year in England, Scotland and Wales, compared with fewer than 2,000 who die in traffic accidents. #Suicide is the leading cause of death among men under the age of 50 and young people in the UK. The reasons are complex and multilayered but it is striking that #men who are less well-off and live in the most deprived areas are up to 10 times more likely to die by #suicide than better-off #men from the most affluent areas. For every death by #suicide in the UK, it’s estimated that 135 people are exposed, affected or bereaved. People who, like me, in turn require NHS therapy or counselling to weather the shock. Yet there was no mention of spending on #suicideprevention in the UK government’s latest Budget. © Charlotte Ager I told the children early on Saturday morning. “Daddy isn’t coming back,” I said as we lay curled into each other in bed. “He didn’t want to live any more and he made himself die.” My son turned his back to me. My daughter cried silent tears into my neck. There are no parenting handbooks for this. That was Saturday. On Monday, the children went back to #school and two weeks later I was back at work. Routine became the scaffolding that propped up our lives as shock gave way to grief and, eventually, anger. So much anger. The kids inevitably fed off my emotions. My son hated it when I cried. My daughter became quietly anxious, chewing her nails to the quick. She sleepwalked and had nightmares. “I can’t remember what Daddy sounds like,” she said a year or so after Steve died. Late one night, I found her sitting in the dark on the stairs. “Mummy,” she sobbed, “I dreamt you’d died too.” I also had vivid dreams. In them, I was always chasing Steve and he was always turning a corner just before I could reach him. In those rare dreams when I did catch up with him, I’d end up shouting, apoplectic with rage: “Why did you stop taking the meds? Why did you do this to us?” My grief was a guilt-laced monster, angry and sad and afraid all at once. There are now 1.6 million people on NHS #mentalhealth waiting lists, according to the charity Mind I got a gym membership and took up boxing. It felt good to kick and punch the heavy bag. The louder, the more furious, the better. This went on for months and I ended up injuring my foot and hip. You can’t stay angry indefinitely; it hurts and it’s exhausting. One September, around Steve’s birthday, my son said he didn’t want to make the usual trip to lay flowers at his father’s grave. He was older now, almost a teenager, questioning. He wanted, instead, to see where his father had died. I hesitated. The last time I’d been there was in the weeks and months after Steve’s suicide, when the branches had been grey and bare. The dog walker who’d found him had left a small wooden cross on the frozen ground. But this time it was a warm, late summer’s afternoon and everything was lush and overgrown. Clambering through bushes and dodging stinging nettles, we emerged into the opening. I braced myself. “You’re not going to cry, are you?” my son said, his voice steeped in dread. We stood in silence for a while, listening to the rustle of leaves in the breeze, taking in the empty space, bursting with absence. And then the sun made an appearance through the canopy overhead. Fingers of light filtered through the green and caught the gold tones in my son’s hair. We moved quietly then, further into that opening, anxious not to disturb its fragile peace, and felt the warm, soft ground beneath our feet, scattered with fallen leaves.

#JamesDonaldson notes:

Welcome to the “next chapter” of my life… being a voice and an advocate for #mentalhealthawarenessandsuicideprevention, especially pertaining to our younger generation of students and student-athletes.

Getting men to speak up and reach out for help and assistance is one of my passions. Us men need to not suffer in silence or drown our sorrows in alcohol, hang out at bars and strip joints, or get involved with drug use.

Having gone through a recent bout of #depression and #suicidalthoughts myself, I realize now, that I can make a huge difference in the lives of so many by sharing my story, and by sharing various resources I come across as I work in this space.  #http://bit.ly/JamesMentalHealthArticle

 

Manuela Saragosa is an executive producer for FT Audio If you are struggling to cope or have been affected by anything in this story, please contact the Samaritans in the UK at 116 123 or jo@samaritans.org. In the US, the #NationalSuicidePreventionLifeline is 1-800-273-8255. More information at mind.org.uk, samaritans.org and save.org

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