‘My daughter filled notebooks with beautiful poetry. The scent of her perfume still clings to the pages.’ It’s all we have left

By Mark S. Smith

The loss of a child is the oldest and deepest sorrow known to our species. Yet a worse hell is reserved for those who know their loss could – and should – have been prevented.

This then is the story that led to the formation of Scotland’s newest mental health charity – the Joshi Project – an effort to prevent, or at least reduce, such tragedies in the future.

News of the death of my beautiful and gifted daughter was delivered by two plain clothes police officers on a windless, humid morning in January 2020, in southern Florida. Her name was Joshi, and she was just 24.

The pain of writing about her in the past tense is impossible to fathom. Yet I know it must be done – for her sake, for those who suffer as she did, and for us who are left behind.

It took days to arrange, but somehow my wife and I found the strength to return her to Scotland for burial. We had already been planning to depart the United States – Joshi, too – and we simply could not leave her behind.

A few years earlier, I had resigned from my position as Deputy Business Editor at The Herald, and relocated my family to the US from Stirlingshire in the hope of finding better psychiatric treatment for Joshi.

Her tragic, final moments came after a lifetime of struggle against deep depressions, high anxiety and punishing OCD rituals. Along the way, she was repeatedly failed and abandoned by mental health professionals – both in Scotland and the US – who did not provide the care and support she sought and desperately needed to live.

The Joshi Project aims to change a system that is incapable of helping those who need help the most.

***

Joshi was a lover of Shakespeare and a writer of notebooks filled with heart-wrenchingly sad and beautiful poetry. She left behind a small mountain of them. The scent of her perfume still clings to the pages.

In her happy moments, she was kind, loving, loyal and funny. She was as smart and creative as they come – and she was surrounded by the love of everyone whose life she touched – but it wasn’t enough.

The police officers who came to our house that morning were not without a sympathy that had been honed to a fine art – the result of training or the bitter experience of discovering yet another young life robbed of 50 or 60 years.

To them, it was a senseless, accidental, though still self-inflicted death amid a surging epidemic, in which American drug peddlers lace fentanyl, a cheap, synthetic opiate, into everything from low-grade marijuana and street Xanax to heroin, all for greater profits. Today, Scotland faces a similar crisis with street Valium and diazepam, much of which is now laced with cheap and lethal doses of the drug, etizolam.

They had no intention of conducting a full investigation. Excuses ranged from Covid-19 restrictions to the impossible size of the drug epidemic.

Yet Joshi’s story is a reminder that mental illness cuts across all social and intellectual strata. The tragedies of accomplished people, such as Robin Williams, Kate Spade and the Scottish singer-songwriter Scott Hutchison – assure us that even a life of accolades is no protection against mental illness. Indeed, we are all vulnerable.

Scotland’s high rate of suicides, drug deaths and homelessness are not caused by existential crises alone. They are also the result of our inadequate system of mental health treatment. Those who do not recognise this are simply not looking.

Joshi’s death, in fact, was a murder, perpetrated by the drug dealer who sold her a fentanyl-laced concoction that killed her. But the responsibility does not end there.

***

I have a clear and haunting memory of sitting with Joshi and my wife in a room with the head of psychiatry and other therapists at Livilands Resource Centre, Forth Valley’s mental health treatment facility in Stirling.

The head psychiatrist – a man whose name I no longer recall – literally threw his arms in the air and said: ‘We have nothing else in our armoury for her.’

Perhaps I will forever be haunted by the finality of those words, along with the sense of my own powerlessness and inability to help my daughter.

Joshi was around 14 or 15 at the time. The meeting was called because, after something like two years of monthly and bi-monthly therapy sessions, as well as ever-increasing dosages of antidepressants, no progress had been made.

Despite her obvious high intelligence and outstanding academic performances in what were then her standard grade examinations, Joshi’s daily life continued to be plagued by bouts of severe anxiety, insomnia, obsessive-compulsive rituals and at times violent temper tantrums. She was also self-harming, inflicting knife gashes on her upper thighs and talking increasingly often about suicide. She called her depression a “black cloud”.

It became clear the assembled therapists were exasperated with her unresponsiveness to treatment efforts. The multiple therapists and psychiatrists Joshi had seen at Livilands had been focused entirely on the administration of antidepressants and cognitive behaviour therapy (CBT), a talking therapy that aims to distract sufferers from their disturbing thoughts and feelings. None of it helped. In fact, CBT served only to teach her distraction at any cost, which, I believe, helped drive her into the world of self-medication.

Now there was an unmistakable sense that they were circling the wagons. How dare we question their medical authority? Any suggestion of a possible different approach was shot down as either “dangerous” or “unproven”.

There should have been much in their armoury – more flexibility, compassion and commitment, as well as a willingness to accept that their methods are not appropriate to everyone – but there wasn’t.

A simple Google search reveals that while these therapies provide some relief for some people, they also fall well short for many others. One recent study from the Institute for Quality and Efficiency in Health Care, in Cologne, Germany, published in 2020, suggests that more than 50% of people who take antidepressants never get relief.

CBT has also been shown to be ineffective for many people – my daughter among them – despite its near-universal acceptance by psychotherapists over the past two decades.

I know that Joshi felt abandoned, and so did her mother and I. We were marooned.

Two weeks after that meeting, Joshi sunk into another dark bout of depression. She was still cutting herself, crying for hours and throwing desperate, often violent tantrums. When my wife called Livilands, our only resource, the main therapist Joshi had been seeing refused to come to the phone. A receptionist told us our daughter was no longer in the system.

When asked for comment earlier this week from NHS Forth Valley, its impersonal statement noted: “We would like to apologise to any parent who feels their child did not get the mental health care and support they required. Many changes have been made to improve local and national mental health services for children and young people over the last few years.

“These include the introduction of new community-based mental health services and counselling services in local schools to make it quicker and easier for children and young people to access support at an early stage.”

Refusing to give up hope, I took Joshi to a private psychiatrist who had been recommended by a local GP, but he had the same antidepressants and CBT to offer.

As they had at Livilands, he also spoke about how these treatments would redress the “chemical imbalance in her brain”. But Joshi had heard this many times before, and asked the psychiatrist plainly: “How do you know what the right chemical balance is for me?”

In fact, the biological and pharmacological model that dominates modern psychiatry is far from a full picture of what occurs in the mind. The brain’s neural pathways are extremely complex and, in truth, poorly understood. Moreover, they are often over-simplified as a matter of balancing the neurotransmitters, dopamine and serotonin.

The doctor appeared stumped by Joshi’s question. With a sigh, she turned to me and said: “Dad, can we just go?”

We had no idea how to help our daughter. Neither did we have any idea of the mortal danger that lay ahead, and neither did Joshi. Soon, she began to self-medicate, and sneak out during the night in an effort to distract her mind from the demons that plagued it.

I still wonder if those therapists and psychiatrists with nothing left in their “armoury” truly understand the chasm that exists between their arrogance and the suffering individual across from them, one filled to the brim with pain.

***

In the aftermath of Joshi’s passing, when the physical and mental paralysis of loss slowly gave way to anger and frustration, I became desperate to know if anything could have been done to save our daughter.

I refused to accept that Joshi’s fate was a lost cause. For years, I laboured with every atom of my will to make her better, and I could not stop now.

With the cold eye of a former newspaper reporter, I began by looking at the raw facts and figures of mental health systems around the world.

To my horror, I discovered that Scotland and the US – the two countries where Joshi sought and received mental health treatment – are a long way from being the best places to suffer any form of mental illness.

The US, for all its wealth, technological innovation and medical advances, is in fact among the cruellest, most ineffective places in the world to be mentally ill. Scotland, meanwhile, lags significantly behind most of its European neighbours.

In both the UK and US, a medical model predominates in psychiatry. Symptoms, such as anxiety, depression and psychosis, are often regarded as biological problems – the result of faulty brain chemistry. Thus, treatments are almost entirely focused around the dispensing of medication and various traditional talking therapies.

However, multiple studies now show that trauma and dysfunctional human interactions, often during childhood, lie at the root of many psychiatric conditions. Joshi did not suffer traumatic abuse, but she did have an extremely difficult birth. It is known that early exposure to trauma can have far-reaching consequences.

Official statistics reveal that around two Scots each day die by suicide. At the same time, increasing numbers of Scots suffer – and die – from drug and alcohol addiction issues.

In 2019, more than 1,200 people in Scotland died of drug misuse alone. This is the worst rate in Europe, and more than three times the rate of England and Wales.

Meanwhile, the comorbidity of mental illness and substance abuse, which too often leads to the widespread phenomenon of “self-medicating”, is well documented – but it is notably absent from any concerted effort to tackle these disturbing casualty numbers.

My wife and I thought we were getting the best support available for Joshi. It wasn’t true.

Too late, I found a number of fully functioning mental health systems that achieved consistently impressive outcomes. These included Finland’s Open Dialogue methods, Luxembourg’s Positive Education programme and Germany’s easy therapy access and financial support for patients with mental illness.

Then I discovered Trieste, a north-eastern Italian city that is probably the best place in the world to have a mental illness.

***

Trieste’s mental health department serves a population roughly the same size as that of NHS Greater Glasgow and Clyde health board – around 1.2 million people. It is also the site of a near-50-year-old psychiatry revolution, now designated as a “centre of excellence for mental health recovery” by the World Health Organization.

In the early 1970s, the late Italian psychiatrist and reformer Franco Basaglia began closing the Trieste mental asylum. His radical idea, influenced by Maxwell Jones, the head physician at the former psychiatric facility at Dingleton, in the Borders, was that recovery from mental illness is impossible when people are deprived of human rights and dignity.

In place of the asylum, Basaglia established a network of walk-in community mental health hubs, from which he advanced his therapeutic principles of freedom and individualised recovery models, and then interlinked them with community services.

His system evolved into a unique model of community psychiatry, incorporating employment, housing, job training, the arts, recreation and more. At the heart of the Trieste model is the idea that individuals must be given the right to negotiate and, in essence, become the driving force of their own recovery.

The more I learned about the Trieste model, the more I realised this was precisely what could have saved Joshi and, by extension, the thousands of Scots who suffer as she did. It rejects the notion that mental health problems can be fixed with a few therapy sessions and a bottle of antidepressants. Rather, it is a system of long-term, holistic support that could have guided Joshi to recovery, helping her find inspiration, hope and her place in the world.

To the surprise and annoyance of traditionalists and critics, Trieste’s paradigm consistently delivers better recovery outcomes than any other form of mental health treatment in the world. It also provides the promise of what can be accomplished in Scotland.

Over the past 20 years, suicide rates in Trieste have halved – an astonishing accomplishment by any standard. Drug addiction, hospitalisation, re-admission and homelessness rates have all plummeted. At the same time, the percentage of people helped into work, housing, and other social-inclusion pathways have increased dramatically.

In my correspondence with Dr Roberto Mezzina, a former director of mental health services in Trieste who is now the chairman of the International Mental Health Collaborating Network, and advises on establishing the Trieste model around the world, I learned its principles and many practical aspects were being applied within at least six NHS trusts across England and Wales, as well as in numerous other countries.

I also learned that a previous effort was made around 15 years ago to set up a Trieste-style experiment in Scotland, but it fell apart, largely because of the opposition of mental health professionals within the NHS to deviate from the current pharmacology and talking-therapy approach – much of which still complemented by institutions.

However, Dr Mezzina regards this model as “totally insufficient”.

“There is no unique way,” Dr Mezzina added. “It’s important to remember the mind is not the brain. This is why the biological and pharmacological model of mental health recovery so often fails.

“The mind is influenced by many inner and outer factors – psychological, cognitive, behavioural, religious and spiritual, political and sociological, etc – all of it mediated by personal meaning that differs from one person to another.

“In Trieste, we put in place a whole range of opportunities – but the final, actual roadmap is decided by individuals. We help catalyse positive social interactions and experiences, support individual identity and a positive sense of self-efficacy, but we can only accompany them on their journey.

“The important thing is to develop an attitude that supports individuals within their own world, on their path toward a better life. This is what we see works best.”

The Joshi Project has a complete proposal for the NHS on how the Trieste model can work in Scotland. All they need to do is implement it – and that is where the challenge now lies.

It’s too late for my daughter, but not too late for Scotland.

 

How the Joshi Project works

 

The aim of the Joshi Project is to establish a more compassionate and flexible system of mental health treatment in Scotland.

Initially, this will involve helping set up an NHS staffed and funded Trieste-style walk-in community mental health centre (CMHC) in Glasgow as a pilot scheme – firstly to begin providing immediate treatment for the city’s under-served mentally ill, and secondly to prove that this is a system that works.

Similar programmes are currently being set up at a number of NHS trusts in England and Wales, as well as elsewhere in the world, where such proof has already been established.

Why not here? Ultimately, the Joshi Project aims to help establish community mental health centres across Scotland.

These CMHCs are at the heart of the Trieste model. They provide single-point access in an informal but safe space, where individuals are treated with compassion and dignity, and given advice, treatment and counselling.

CMHCs are also the central point from which community services, recreation, education, employment and the arts are linked with the needs of the individual. A person’s needs – not their disorder or diagnosis – are at the centre of each recovery plan.

The Joshi Project aims not only to be a focal point in the movement for change, but also a central point for bringing the wider community into the treatment model.

Funds raised by the Joshi Project will help fund the NHS’s establishment of CMHCs, contribute toward the Trieste-style training of therapists and other staff, and help pay for many of the costs involved in connecting individuals with community and recreational activities.

For more information, to sign the petition or donate to the Joshi Project, please visit https://joshiproject.org.