Gargoyles, tarantulas, bloodied children: Research begins into mystery syndrome where people see visions of horror

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anxiety, blindness, charles bonnet syndrome, Depression, hallucinations, isolation, mental health issues, neuroscience, stress, treatment, visions, visually impaired

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Gargoyles, tarantulas, bloodied children: Research begins into mystery syndrome where people see visions of horror

Estimated one million visually impaired people in UK are thought to experience bizarre ultra-lifelike hallucinations – including spiders crawling from books and Victorian families appearing in crowds.

The first time Dr Amit Patel saw the girl in his home he was so astonished he fell down the stairs.

“She was so vivid,” he remembers today. “I could see the detail on her dress. There was blood smeared on her face.”

A month earlier, in November 2012, the former A&E medic had gone suddenly blind after catastrophic haemorrhaging in both eyes.

As he attempted to negotiate a world without sight, the girl – or rather a crystal-clear vision of one; white dress, black hair, bloodied and bruised – appeared without warning. And she has been doing so ever since.

“I can be working, walking down the street, with the kids, and she’ll suddenly be there,” the 40-year-old father-of-two says. “She once watched me change my daughter’s nappy. She’s always on trains.”

This is Charles Bonnet Syndrome – and an estimated 1 million partially sighted and blind people in the UK are believed to live with it.

They see – often on a near daily basis – intensely real, hyper-detailed visions. Sometimes these are benign: flowers sprouting, musical notes hanging in the air or rainbows forming.

But for many – for reasons which nobody understands – the scenes come tinged with horror. Tarantulas crawl out of books, gargoyles appear amid friends, zombies turn up in homes. In an online post, one UK sufferer, describes seeing a person crumble to dust in front of them. Dr Patel likens his visitor to the girl in The Ring. “Used to love that film,” he says today. Now, he’s less enamoured.

“Something I hear a lot is it’s like being inside a horror movie,” says Judith Potts, founder of Esme’s Umbrella, the UK’s only charity dedicated to the condition. “People know it’s not real but they can’t switch it off. There is no cure. They cannot escape.”

A major study being carried out by neuroscientists at the University of Oxford will this summer begin investigating what might cause CBS. In doing so, they hope to, firstly, destigmatise an illness which many are believed to suffer with silently for fear their sanity may be questioned, and, secondly, lay the groundwork for finding an eventual treatment.

Crucially, while it has long been established that the syndrome is to do with the eye’s interaction with the brain – as opposed to being a form of psychosis or dementia – the research will aim to establish what exactly is happening within that process.

“It is so important,” says Ms Potts. “This affects every part of people’s lives. If you wake up in a morning and see a tiger in your doorway that’s so real you can see the saliva on its teeth – that’s just one example of someone I spoke to recently – if you see that, it is so terrifying that, even though you know it’s not real, the anxiety puts huge stress on your life.

“Some people won’t go out as much because they don’t want to have these visions in public, or they become depressed. They have accidents. You can imagine it’s rather distracting suddenly being confronted by a Victorian family as you walk down the street.”

She herself founded Esme’s Umbrella in 2015 because her mother – the Esme in question – had suffered with the condition but found nowhere to turn: “A wonderful lucid woman who did the cryptic crossword everyday but who also happened to see gargoyles jumping around her kitchen,” notes Ms Potts.

Charles Bonnet Syndrome itself was first identified in 1760 by the Swiss naturalist and philosopher whose grandfather – a sane and cogent man – confided in his grandson that he had started seeing birds he knew could not possibly be there.

Yet, perhaps, because the condition appears to cause no apparent physical or mental deterioration, research has been sparse and wider knowledge of it remains hugely limited.

Despite estimates that half of all visually impaired people in the UK suffer – a figure put forward by the King’s College London neuroscientist Dr Dominic Ffytche – most have never heard of it until they are diagnosed. It was only four years ago, indeed, that the Royal College of Ophthalmologists started advising its doctors they should ask patients as a matter of routine if they experienced hallucinations in a bid to better understand the syndrome.

The fact the visions are so often characterised by something vaguely dreadful is, one expert told The Independent, “beyond the current limit” of scientific understanding.

Stress, isolation and anxiety may spark the visions, some believe. But even this is open to interpretation – because the visions probably increase stress and anxiety levels.

“The first time it happened I thought I was losing my mind,” says Arthur Anston, a 71-year-old retired sales director, as he describes an unknown person suddenly appearing as he travelled in a car with his wife.

“They started very modern-looking, then their appearance went back in time – Victorian, Roman – until I had a prehistoric man looking at me,” he adds.

So scared was he that his son-in-law immediately took him to hospital. “No one ever told me when I started losing my sight this might happen,” the grandfather-of-two from Manchester says. “I’d never heard of CBS. All I knew was I was seeing something that no one else was. It was disturbing.”

It is a word commonly used by many of those diagnosed with the condition.

For Nina Chesworth, the first time she saw visions was just days after suffering the trauma of losing her sight during a home accident in 2018. Kaleidoscopic rainbows and coloured patterns suddenly appeared as she lay in hospital, eventually progressing, over the next few weeks, into unicorns.

“I’m a graphic designer by training,” the 38-year-old mother-of-one says. “So, I was a bit like, ‘Well, this is interesting’. I would observe all these colours and patterns. I found them comforting in a way. I still do sometimes.”

At one point she saw Danger Mouse. “I loved Danger Mouse,” she says. “That was lovely.”

Then, however, came the zombies and snarling dogs.

“I was sat on the sofa at home the first time,” the mother-of-one from Manchester recalls. “I was too scared to move for hours. It’s not like you can shut your eyes and stop seeing it. It stays right there in front of you.”

Now she has got used to the strange mix of visitors she is less concerned – “sometimes I sit studying them” – but they have caused her accidents, led to plans being cancelled and can make the world feel overwhelming.

“As a blind person you rely on all your other senses but when the visions start, they can take over,” she says. “They are incapacitating, even when it’s not bad stuff you’re seeing.”

It is for this exact reason that Esme’s Unbrella and the Fight For Sight charity are now funding the new research.

Pertinently, with 4 million people in the UK set to have some form of visual impairment by 2050 – a number which would result in a possible 2 million people with CBS – experts say it is more crucial than ever to get a grip on the syndrome.

“So much more needs to be done to understand this,” says Sherine Krause, chief executive of Fight For Sight. “With a better understanding of the causes, we will be one step closer to developing a treatment and a cure.”

The study will see some 20 people – 10 with CBS and 10 without – have certain chemicals in their brains measured and monitored over a period of time.

“By looking at that, we can see if there may be an imbalance in chemistry in the visional system that may be a cause of these really weird visions,” says Holly Bridge, a professor of neuroscience leading the study. “If we can establish that, then it can become possible lead to treatment because you could look to develop ways of changing those chemical balances. In the very long term, it may well be that you could develop an appropriate drug to keep those chemical levels in proportion.”

Early results will come within 12 months and a fully published paper within 18 – but a treatment, of course, might not arrive for years.

All the same, back with Amit in London – flanked by trusty guide dog Kika – he longs for the day when the girl from The Ring is no longer a regular visitor. He would not, it is safe to say, miss her.

“I was thinking the other day,” he says, “she’s been in my life longer than my children. It would be nice now to be rid of her”.

How mental distress can cause physical pain

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anxiety, Depression, depressive symptoms, diagnosis, distress, emotional distress, emotions, gastrointestinal issues, mental health issues, nausea, numbness, palpitations, panic, panic attacks, physical aches, physical pain, physical symptoms, psychological symptoms, stomach pains, stress

How mental distress can cause physical pain

It took Gemma* years to realise why she vomiting three of four times a week. She wasn’t suffering from some mysterious stomach illness. Instead, it was her mental health deteriorating.

“I have generalised anxiety disorder and panic disorder. I actually had physical symptoms first, long before I even knew what panic attacks or anxiety were,” the 24-year-old student based in London tells The Independent. “I suffer particularly badly from gastrointestinal issues. I spent years throwing up three or four times a week, ending up in hospital, with no real discernible ‘physical’ cause. The cause was anxiety, expressed physically.”

Gemma believes that her condition went undiagnosed for so long because of how mental and physical conditions are too often treated as mutually exclusive, when they are in fact inextricably linked.

“I think people very much misunderstand the link between physical and mental health,” she goes on. “I was one of those people. I didn’t even realise they could be connected when I was a teenager. I thought I was relaxed. Anxiety was the last thing I thought I was suffering from. But I was ignoring a lot of stress and was poor at acknowledging my own emotions. That stress had to come out somewhere, and I almost feel like it was my body trying to get me to listen.”

Now, Gemma knows that anxiety can cause her severe stomach pains. Or that panic attacks are what most often fill her stomach with nausea, cause her arms and legs to go numb, and her heart to palpitate.

Similarly, Courtney*, a 25-year-old publicist based in London, says her depression causes her to feel lethargic and sluggish and her bones and joints stiff and achy.

“The bigger problem with physical symptoms is for the anxiety side of things. Outside of panic attacks, a bad flare up of anxiety gives me absolutely stunning headaches with blurred or double vision, which often makes it hard to work – especially at a computer screen,” she tellsThe Independent.

And as the stigma of suffering from mental illness is talked about more widely, these comparatively nuanced aspects of understanding health are what need to be tackled next, say experts.

“The idea that mental illness is ‘all in your head’ is not only outdated, but can make us blind to the physical symptoms that can be a sign of mental health problems,” Rethink Mental Illness spokeswoman Nia Charpentier tells The Independent.

“For example, if you have anxiety, you may experience a fast heart rate and sweating; or for someone living with Post Traumatic Stress Disorder, the flashbacks can cause aches and pains, or make you feel sick. Similarly, depression can affect your appetite, causing you to either lose or gain weight.

Eating disorders such as bulimia and anorexia are perhaps the most obvious ways that serious mental illness can affect a person’s physical health.

“In the case of eating disorders, these illnesses may well involve physical symptoms that can become increasingly obvious over time, depending on the specific illness. However, it’s very important to remember that these are mental illnesses at their root, and changes to behaviour and mood will probably be noticeable long before any physical signs,” a spokesperson for the eating disorder charity B-Eat stresses. “It’s vital that people are aware of these psychological symptoms as well as the physical ones, as the sooner someone enters treatment for an eating disorder, the better their chance of recovery.”

It is erasing this confusing that spurs the Mental Health Foundation on to campaign for health check to include mental health screenings.

“Men in their forties are routinely screened for their blood pressure and cholesterol levels, when they are more at risk of ending their life by suicide,” points out Dr Antonis Kousoulis at the Mental Health Foundation, adding: “It’s crucial that health screening cover the health of our minds as well as the health of our bodies.”

*Name has been changed

Exporting trauma: can the talking cure do more harm than good?

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civil war, community, coping strategies, counsellors, crisis, cultural insight, cultural practices, culturally sensitive, culture, Depression, Genocide, group therapy, interventions, mental health issues, NGOs, post traumatic stress disorder, psychological therapy, psychosocial, PTSD, rape, talking therapy, traditional, trauma, treatment, tsunami, well-being, western

Exporting trauma: can the talking cure do more harm than good?

A few years ago Andrew Solomon had to get into a wedding bed with a ram. An entire village, taking a day off from farming, danced around the unlikely couple to a pounding drumbeat, draping them both in cloth until Solomon began to think he was going to faint. At this point the ram was slaughtered along with two cockerels, and Solomon’s naked body was drenched in the animals’ blood, before being washed clean by the village women spitting water onto him.

Solomon had been taking part in a traditional Senegalese ceremony to exorcise depression as research for his book The Noonday Demon. “I discovered that depression exists universally, but the ways that it’s understood, treated, conceptualised or even experienced can vary a great deal from culture to culture,” he says now. He describes being the subject of the ceremony as “one of the most fascinating experiences of my life”.

When in Rwanda, interviewing women raising children born of rape for another book, Solomon mentioned his experience in Senegal to a Rwandan man who ran an organisation helping these women. The Rwandan told Solomon they had similar ceremonies in his country and that the disconnect between the western and traditional approaches to treating mental health had caused problems in the immediate aftermath of the genocide. “Westerners were optimistically hoping they could heal what had gone wrong,” says Solomon. “But people who hadn’t been through the genocide couldn’t understand how bad it was and their attempts to reframe everything were somewhere between offensive and ludicrous. The Rwandan felt that the aid workers were intrusive and re-traumatising people by dragging them back through their stories.”

As the Rwandan, paraphrased by Solomon, puts it: “Their practice did not involve being outside in the sun where you begin to feel better. There was no music or drumming to get your blood flowing again. There was no sense that everyone had taken the day off so that the entire community could come together to try to lift you up and bring you back to joy. Instead they would take people one at a time into these dingy little rooms and have them sit around for an hour or so and talk about bad things that had happened to them. We had to ask them to leave.”

The best way to improve mental health after a crisis is something NGOs working in Ebola-hit countries are currently considering. International Medical Corps (IMC) recently released a report assessing the psychological needs of communities affected by the disease. IMC’s mental health adviser Inka Weissbecker is aware that they must avoid previous mistakes by international NGOs. “Whenever there is a humanitarian crisis agencies flood in,” she says. “Though with good intentions, counsellors turn up from the UK [for example] and often create more problems … It’s a very foreign concept in many countries to sit down with a stranger and talk about your most intimate problems.”

During the recovery from Haiti’s earthquake five years ago mental health researcher Guerda Nicolas was even stronger in her message to American counsellors who wanted to ease the trauma of survivors. “Please stay away – unless you’ve really, really done the homework,” she said. “Psychological issues don’t transcend around the globe.”

The fact is that different cultures have different views of the mind, says Ethan Watters, the author of Crazy Like Us: The Globalization of the American Psyche. “In the west a soldier coming home might be troubled by their battlefield trauma. They think of the PTSD [post-traumatic stress disorder] as a sickness in their mind and they take time away from responsibilities to heal. That makes sense to us and it’s neither wrong nor right but conforms to our beliefs about PTSD. For a Sri Lankan, to take time away from their social group makes no sense because it is through their place in that group that they find their deepest sense of themselves.”

While researching his book Watters spoke to anthropologists who had in-depth knowledge of Sri Lanka’s culture and history. They said that western approaches after the tsunami had done real damage in the country where there were certain ways to talk about violence due to the long-running civil war. He says: “Into that very delicate balance came western trauma counsellors with this idea that the real way to heal was truth-telling, where you talked about the violence and emotionally relived it. That’s a western idea, it makes sense here, but it does not make sense in these villages. It had potential to spark cycles of revenge violence.”

International NGOs describe dealing with the mental health of a community after a disaster as the “psychosocial” response – meaning caring for individual and collective psychological wellbeing. The UN advertises dozens of jobs under this keyword and the American Red Cross says that since the 2004 Boxing Day tsunami there has been “increasing recognition of the need for psychosocial responses”. It also says – perhaps implicitly acknowledging that mistakes have been made in the past – “we are still in the process of identifying and documenting good practices”.

As awareness has grown that the western talking cure is not always the answer, global organisations have tried to find better ways to help. In 2007 WHO issued guidelines to advise humanitarians on their work to improve mental health and psychosocial wellbeing in emergencies. Coordination between the organisations working in the post-disaster zone as a key recommendation. Weissbecker says that this is crucial. “We reach out to organisations who might not know about the guidelines to coordinate,” she says. “It’s part of every agency’s job to watch out for other organisations doing this kind of work.”

The guidelines also stress learning local cultural practices. IMC now always start with an initial assessment that looks at the understanding and treatment of mental health that exists in that country before putting any programmes in place. “We usually don’t provide direct mental health services to the affected population because we feel that most of the time that’s not culturally appropriate and not sustainable,” says Weissbecker. In many communities, she has been impressed with indigenous coping strategies. “In Ethiopia people say depression is related to loss,” she says. “So the community takes up a collection and they all give them something. This is very positive.” IMC meets with traditional healers and builds up relationships with them.

Many argue that for some mental illnesses western expertise can be genuinely helpful. In Ethiopia Weissbecker’s team discovered a man with schizophrenia who had been tied up in a goat shed for seven years. “Once this family was connected to our services he started taking medication was unchained and participating in family life,” she says. “The father held up the chains to the community and said, ‘look I used these chains on my son and now he’s part of the family again’. People will throw stones because they are understandably frightened [of people with severe conditions].”

The Rwandan that Solomon met questioned whether talking therapy helped survivors of the Rwandan genocide. “His point of view was that a lot of what made sense in the west didn’t make any sense to him,” says Solomon. But Survivors Fund, a British NGO that works in Rwanda, has found that western-style group therapy sessions have really helped women who were raped. “It’s 20 years since then but many of the women our groups have never told their story before,” says Dr Jemma Hogwood who runs counselling programmes for the charity. “A lot of women say it’s a big relief to talk,” she says.

Hogwood has been working in Rwanda for four years but hasn’t heard of traditional ceremonies like the one described by Solomon. The group therapy sessions incorporate local practices such as praying before and after, as this is something the women wanted to do. Weissbecker adds that one-on-one therapy with expats can help people who have experienced extreme violence, rape or torture. “Some of them want to talk to foreigners because they don’t trust people in their communities,” she says. “So then it’s also important for them to have that one-on-one option.”

Some feel that aid should be focussed on food, medicines, shelter, and stay away from mental health. International relations academic Vanessa Pupavac has researched the effect of the war in former Yugoslavia, and has argued that “trauma is displacing hunger in western coverage of wars and disasters … Trauma counselling, or what is known as psychosocial intervention, has become an integral part of the humanitarian response in wars.” The problem with this, she believes, is that blanket-defining a whole population as traumatised becomes “a reinforcing factor that inhibits people from recovery”. Her recent work with Croatian veterans found that the PTSD label stops them from moving on with their lives and contributing to society.

“There are more Croatian veterans on post-traumatic stress disorder pensions now than there were ten years ago,” she tells me. “The international-PTSD-framing of people’s experiences has not only inhibited recovery but has also created social, economic and political problems for postwar Croatia.” She believes NGOs should stop psychosocial programmes altogether because they disrupt communities’ own coping strategies.

But this point of view is rejected by Weissbecker and her colleagues, who don’t accept “the romantic idea that without intervention everything will be fine”. The response to mental illness in many countries is often harmful, she says: “Psychotic patients are chained. Children with developmental disorders are at risk of abuse. Mothers with depression have a higher risk of malnourished children. People with anxiety are often given benzodiazepines which can be very addictive.” The solution, Weissbecker says, is to bring together global and local expertise.

The best experts to bridge the gap between international and local experience are those who might not have a health or psychology background, but have deep knowledge about cultural differences: anthropologists. Since the Ebola outbreak there is a growing recognition of this discipline’s role in emergencies. The American Anthropological Association has asked its members to become more involved in the west African countries hit by the disease. It argues that if anthropologists had been more involved from the start of the outbreak more people wouldn’t have caught the disease due to misunderstandings over traditional burials and conspiracy theories about westerners spreading the illness.

Médecins Sans Frontières (MSF) has employed anthropologists to inform their work for years but one of them, Beverley Stringer, says there’s been a “surge” in interest in what they can offer humanitarian work. “I was at a seminar at the Royal Anthropology Institute recently where they said ‘finally the humanitarian world is interested in our perspective’,” she says. “They’re quite excited about that.”

But Stringer warns that getting anthropologists to work for NGOs should not just be a case of parachuting in an expert; aid workers and volunteers on the ground need to recognise that their own experience gives them insight. “If mums aren’t coming to get their kids vaccinated you don’t need to be an anthropologist to work out why,” she says. “My work is to encourage curiosity and to equip teams with the skills to be able to understand.”

Whether it’s through working more with locals and anthropologists – or ideally both – there is recognition that cultural insight is essential for preventing aid workers from causing damage when they are trying to do good.

“I think enlisting the anthropologists in this process – people who truly know about how to go into other countries and be culturally sensitive – is very important,” says Watters.

“One anthropologist asked me to imagine the scenario reversed. Imagine that after 9/11 or Katrina these healers come from Mozambique to knock on the doors of family members of the deceased to say ‘we need to help you through this ritual to sever your relationship with the dead’. That would make no sense to us. But we seem to have no problem doing the reverse.”

You needn’t be wrong to be called delusional

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conspiracies, credibility, delusion, delusions, DSM, fixed beliefs, Martha Mitchell effect, mental health issues, paranoia, stigma

You needn’t be wrong to be called delusional

It’s not clear who forcibly sedated her in 1972. It’s not certain that she was admitted to a psychiatric ward in the following year. What’s definite though is that many people thought she was mad as she ranted about conspiracies in the White House during eccentric phone calls to the press. Questions about Martha Beall Mitchell’s sanity were encouraged by the Nixon administration, who consistently briefed against her and probably had her medicated against her will. But ultimately her claims were proven correct when the Watergate scandal broke.

Mitchell was the wife of the US attorney general and saw the planning and cover-up of the Watergate burglaries first-hand. In retrospect, her seemingly paranoid claims made sense and, in her honour, Harvard psychologist Brendan Maher named the Martha Mitchell effect after her to describe the situation where someone is incorrectly diagnosed as delusional but turns out to be right.

But, contrary to popular belief, the relationship between madness and truth is a complex one. They are made out to be strangers but often they are more like distant cousins.

This relationship has recently been acknowledged with the publication of the new version of the psychiatrists’ diagnostic manual (the DSM-5) where one of the most interesting but less noticed changes has been the redefinition of the delusion, a symptom that has long been considered the “basic characteristic of madness”.

Delusions, in the medical sense, are not simply a case of being mistaken, as the everyday use of the term suggests. They are profound and intensely held beliefs that seem barely swayed by evidence to the contrary – even to the point of believing in the bizarre. My heart has been replaced by steam. My thoughts are being stolen by satellites. The government communicates with me through birdsong.

But many delusions are not outlandishly eccentric, they are simply implausible. Consider the scenario where people believe that their neighbours are conspiring against them or that they are the subject of a film star’s secret affections. Occasionally, these beliefs turn out to be true, but this is not a reliable guide to whether someone is delusional or not. This was memorably illustrated by the psychiatrist Andrew Sims, who warned in his psychopathology textbook Symptoms in the Mind that spouses of people with delusions of infidelity may occasionally be driven to infidelity. This romantic betrayal does not suddenly cure their partner of their mental illness.

The general idea is that delusions represent a problem with how you believe – that is, a problem with forming and changing beliefs – not a problem with what you believe. In other words, simply believing something strange or unusual should not be considered a problem but having “stuck” beliefs that are completely impervious to reality suggests something is mentally awry.

On the ground, mental health professionals are often required to decide if someone’s thinking indicates a disturbance in their understanding of the world, and this is where the new DSM-5 definition of a delusion may usher in a quiet revolution in psychiatry. No longer are psychiatrists asked to decide whether the patient has “a false belief based on incorrect inference about external reality that is firmly sustained despite what almost everyone else believes and despite what constitutes incontrovertible and obvious proof or evidence to the contrary”. A wordy and unhelpful definition that has so many logical holes you could drive a herd of unicorns through it.

Instead, the new definition of delusions describes them as fixed beliefs that are unswayed by clear or reasonable contradictory evidence, which are held with great conviction and are likely to share the common themes of psychosis: paranoia, grandiosity, bodily changes and so on. The belief being false is no longer central and this step forward makes it less likely that uncomfortable claims can be dismissed as signs of madness.

And this is where the larger issue lies. As happened with Martha Mitchell, claims against authorities are often dismissed by suggesting that the person has mental health problems.

History is littered with such examples but sadly there are enough contemporary cases to illustrate the point. In a controversy currently rocking Germany, evidence of money-laundering at a big bank has become a huge scandal, not least because it was dismissed as delusional seven years ago when the accuser was diagnosed with mental illness.

Closer to home, when the NHS whistleblower Kay Sheldon reported failings in the Care Quality Commission, the first response was to suggest she had a mental health problem and to commission a psychiatric assessment.

I have no idea whether these people had mental health difficulties but it should have had little bearing on how seriously their concerns were taken. The fact that their claims could be dismissed by allusions to poor mental health is part of the unfortunate stigma that still surrounds the issue. But the stigma goes both ways, and assuming people do not have mental health difficulties because they are correct is the flip side of this.

In the years after Martha Mitchell had been dismissed as delusional, it emerged, contrary to her claims, that she was under the care of her own psychiatrists, drinking heavily and, at times, suicidal. Nixon, for his part, said Watergate would never have happened if it wasn’t for Martha. Both believed that mental illness would undermine her credibility. History, however, came down on the side of truth.

Don’t worry, be happy: overcoming worry may be key to mental health

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anxiety, beliefs, benefits, cbt, distraction, excessive worry, mental health issues, problem solving, worry

Don’t worry, be happy: overcoming worry may be key to mental health

Are you weary of “new year, new you” positive thinking exercises? Tired of trying to feel Tiggerish in the cold, dark, midwinter mornings? Why not try this quick experiment to redress the balance. All you have to do is imagine that something great has happened in your life: maybe you’ve run into an old friend; perhaps you’ve been promoted at work; or you’re about to head off on holiday. Now ask yourself what could go wrong. In what awful ways could it all fall apart? What disastrous chain of events might unfold? Don’t think solutions, think problems. Open the worry floodgates and allow yourself to be swept away.

As you’re likely to discover when you attempt this depressing little exercise, with a sufficiently negative outlook even the happiest moments in life can become a source of anxiety and stress. When we worry, we become preoccupied with an aspect of our lives, desperately trying to anticipate what might go wrong and what might happen if it does. Although we might believe worry is constructive, actually all it usually does is lower our mood. And when we start worrying it can be difficult to stop.

So worry can be an immensely powerful psychological mechanism, but might it also be a defining factor in the development of mental illness? Can studying it deepen our understanding of what mental illness is, how it comes about, and how it differs from psychological health?

As you’ll know if you read about the hoo-ha following publication of the latest edition of the Diagnostic and Statistical Manual of Mental Disorders, the number of officially recognised psychiatric disorders has mushroomed in recent years, and now stands at around three hundred. That giant total has attracted a lot of criticism – and with some justification – but in fact many of these conditions are pretty similar. It is better to think instead of three main groupings of disorders: internalising (most commonly, depression and anxiety); externalising (addiction, for instance, or anti-social behaviour problems); and psychosis (with its characteristic symptoms often bracketed under the label of schizophrenia). However, even these three broad groupings share many of their causes, which has led some researchers to speculate that underlying and unifying all mental illness may be a single cause: the so-called “p factor of psychopathology”.

At the social level, we know that poverty, isolation, and negative life events all elevate the risk of mental health problems. But when it comes to the psychological p factor, there is increasing evidence that it may be excessive worry. When worry gets out of hand, it now appears, a very wide range of mental health problems can follow in its wake.

This kind of “transdiagnostic” approach represents a major shift in the way we think about worry. Traditionally, problematic worrying has been demarcated as a specific condition: generalised anxiety disorder. And in that box it has remained. (The exception to this rule is depression, for which persistent worry about the past is a recognised symptom. But it’s not called worry: it’s called “rumination”. “Worry” is defined as anxious thinking about the future.)

Yet real life seems to show a lamentable lack of respect for systems of psychiatric classification. Rather than being a separate disorder, excessive worry has been shown to play a significant role in the development and persistence of paranoid thinking, post-traumatic stress disorder, alcohol and drug dependence and insomnia. It has also been linked to the incidence of eating disorders.

The idea that many psychological problems have excessive worry in common seems plausible. As most of us know from bitter experience, worry brings the most unlikely – and unpleasant – ideas to mind, keeps them there no matter how hard we try to shake them off, and convinces us that the events we dread really may happen.

If persistent worry is potentially so damaging to our mental health, what can be done to combat it? Interestingly, we tend to worry less as we grow older. People aged 65-85, for example, report fewer worries than those aged 16-29. But besides simply waiting for the years to pass, the evidence is strongest for an adapted form of cognitive behavioural therapy. This relatively brief, one-to-one treatment is based on a detailed model showing how problematic worry is caused, maintained and overcome. Patients are helped to notice when they’re worrying, to interrupt this habitual thinking style, and then try alternative ways of reacting to life’s problems.

So far this kind of CBT has mostly been used with people suffering from generalised anxiety disorder. A recent meta-analysis of 15 studies, for example, showed that CBT was far more effective than other therapies (or than a non-treatment control) at helping people recover from generalised anxiety disorder and stay well.

But it is now beginning to be piloted for other conditions – the Oxford Cognitive Approaches to Psychosis Group, for example, is testing its efficacy in severe paranoia.

How does CBT tackle worry? For one thing, it helps people to re-evaluate their beliefs about its benefits. Like many of us, individuals who are prone to excessive worry tend to assume that it helps them. They may believe, for instance, that worrying helps them to anticipate and solve problems; that it provides the motivation necessary to tackle those problems; or that it prepares them for the worst if a solution can’t be found. They may even feel that by worrying about an event they can prevent it occurring – despite realising that it’s pure superstition. Learning to challenge these kinds of beliefs can be a huge step forward.

CBT also teaches us to confine our worrying to a regular set period of 15 minutes or so each day. When worrying thoughts arise at other times, the trick is to save them for later and let them go. “Expressive writing” can be effective too: you describe your worries in as much detail as you can, focusing on what it feels like, and resisting the temptation to analyse what’s causing your thoughts. And don’t underestimate the power of distraction: work out when you’re most likely to worry and plan a pleasurable, absorbing activity you can do instead.

Many of CBT’s techniques for tackling worry are not rocket science: with the right guidance we can all put them into practice. By doing so we’re not merely sparing ourselves hours of futile fretting. If excessive worry is truly the p factor it seems to be, we’ll also be addressing one of the key determinants of our mental health.

Why should teachers talk about mental health with students and colleagues?

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anxiety, Bullying, career, colleagues, Depression, harassment, management, mental health issues, recovery, secret, stigma, stress, support, teachers

Why should teachers talk about mental health with students and colleagues?

Clare can now talk with calm reflection about the moment she decided to end her life. She remembers feeling as if she were living in a sort of twilight zone where nothing made sense: she was being shunned by colleagues and faced losing her job as a teacher.

Things had spiralled out of control after Clare was signed off work with stress-related depression. When invited back to school to talk about when she might return, managers tried to renegotiate her contract. Clare immediately sought legal advice. “I felt isolated, bullied and harassed.

“My managers were asking other staff members about me and I was becoming increasingly anxious by what was happening. Instead of supporting me and making reasonable adjustments to the fact that I was off with stress, the school’s response was completely punitive.”

Part of the problem is that mental illness in teaching is stigmatised, says Clare. “If you reveal that you are stressed, it is seen as a great weakness – that you are just not up to the job.”

Figures published by the Association of Teachers and Lecturers (ATL) this year showed that more than a third of school and college staff have noticed a rise in mental health issues among colleagues in the past two years. Despite this, 68% kept their problems a secret from their bosses.

In a recent Teacher Support Network survey, the majority of teachers (89%) blamed excessive workloads for their mental health problems, and 40% wouldn’t talk to anyone at work about mental illness because was seen as “a sign of weakness”.

People worry about being seen as not good enough, says Tim, a teacher who retired early due to stress and anxiety. “If you are suffering from work-related stress you are especially reluctant to seek the support of senior management for fear that your complaints could be seen as an indictment of their management.”

David Ambler, ATL district secretary in Birmingham, says mental health problems are also stigmatised because of worries about how this will make a school look. “To reduce the stigmatisation of mental illness requires more than simply a change of attitude among headteachers and senior management in school. It requires a change of attitude among the general public and parents to understand that teaching is a stressful job and sometimes teachers go under or need treatment.”

When Michael was signed off with stress-related depression, he found that some colleagues were understanding but others were not. Teachers worry about the impact of admitting to a mental health problem on their career, he says. The headteacher who employed Michael in his current post said that she was taking a huge risk and put him on a six-month trial period. “Employers are not as sure about mental illness as they would be about physical illness,” he says. “If I broke my leg, for example, and came back to work I don’t think I would be trialled in the same way.”

But this needn’t be the case if the stigma around the issue of mental illness is tackled and the right support is put in place. Rachel, who has experienced depression for years but hasn’t taken time off work, puts her ability to keep teaching without taking any extensive leave down to the support of her senior leadership team and colleagues.

“I am able to talk to all my senior management team and have good friends on the staff who also know and are supportive. My experience of mental health, if anything, has done the opposite of holding me back. But if I had not received the understanding and support I did then I would almost certainly have ended up off sick and probably left teaching.”

Nor is this just an issue of doing the right thing and supporting people experiencing mental health problems – it’s also essential to their recovery. Alison Stark, a senior teacher at a Dutch secondary school, who is off sick with work-related burnout, says there is a more open culture to mental health in the Netherlands.

“The first step is admitting that you have a problem. I talked about my problems with a friend and just being able to say out loud that I am struggling helped me accept things,” she says.

Her school has been patient and supportive – rather than worrying about what to say, colleagues have sent her cards, flowers and message of support. “It is important that schools have a supportive management who are understanding. Headteachers need to support management and create an atmosphere in which teachers can talk about it [mental illness].”

For Stark, the most supportive person has been her deputy head, who has sought solutions by asking her what she needs and what would aid her recovery. “They say, ‘do you want me to allow you home access to email or not? Should I block it and protect you?’”

An openness about mental illness could also help students by ensuring they have positive role models. Kelly, who just started in a girls’ school, is recovering from an eating disorder and used to self-harm. She says stress from teaching can cause a flare-up in food-control behaviours and she has visible scars on her arm. “I am what you could call a normal weight so it’s not obvious I struggled with bulimia, anorexia and excessive exercising,” she says.

Kelly wants to share her experiences to show her pupils that no one should let mental health problems define them, but she worries about the repercussions. “I worry that my school would not be supportive of my talking about my experiences as they would be concerned about the potential backlash from parents. If students mis-reported the story at home some parents may be concerned about my capacity to cope.”

• Most of the names in this article have been changed to protect the teachers who shared their stories.

The Tackling mental health stigma in schools series is funded by Time to Change. All content is editorially independent except for pieces labelled advertisement feature. Find out more here.

Australia’s detention regime sets out to make asylum seekers suffer, says chief immigration psychiatrist

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adolescents, asylum seekers, Australia, Children, detainees, detention, doctors, harm, mental health issues, policy, shame, suffering, suicidal, Torture

Australia’s detention regime sets out to make asylum seekers suffer, says chief immigration psychiatrist

The chief psychiatrist responsible for the care of asylum seekers in detention for the past three years has accused the immigration department of deliberately inflicting harm on vulnerable people, harm that cannot be remedied by medical care.

“We have here an environment that is inherently toxic,” Dr Peter Young told Guardian Australia. “It has characteristics which over time reliably cause harm to people’s mental health. We have very clear evidence that that’s the case.”

Young is the most senior figure ever to condemn the detention system from within. Until a month ago he was director of mental health for International Health and Medical Services (IHMS), the private contractor that provides medical care to detention centres on the Australian mainland, Christmas Island, Nauru and Manus Island.

Young has extensively briefed Guardian Australia about a system he says is deliberately harsh, breaks people’s health, costs a fortune, compromises the ethics of doctors and is intended to place asylum seekers under “strong coercive pressure” to abandon plans to live in Australia. “Suffering is the way that is achieved.”

He believes this process is akin to torture: “If we take the definition of torture to be the deliberate harming of people in order to coerce them into a desired outcome, I think it does fulfil that definition.”

Young strongly criticised the immigration department for:

• Delays that endanger health in bringing patients to Australia from Manus and Nauru: “It is seen as undesirable because it undermines the idea that people are never going to Australia and also because of the concern that if people arrive onshore then they may have access to legal counsel and other assistance.”

• Leaving people in detention who are acutely suicidal: “Trying to manage them in a non-therapeutic setting like that is just inherently futile. It’s not going to work.”

• Returning patients with less severe problems to detention despite medical advice that they cannot be expected “to fully respond to treatment in an environment that was making them sick”.

• Misusing patient information. “People disclose a lot of personal information which is then recorded in notes which are then available to non-medical people for other purposes.” Young says the dual role of IHMS staff treating detainees but reporting to the department raises fundamental ethical problems for doctors in the system.

• Displaying an obsession with secrecy: “Speaking out of turn is clamped down on whenever it occurs … they continue to maintain the fantasy that they can keep everything a secret.”

• Reluctance to gather and use mental health statistics that might “result in controversy or threaten the application of the policies of deterrence”.

• Directing doctors not to put in writing that detention has led to deterioration in their patients’ mental health. IHMS doctors ignored the direction. Young said they saw evidence all around them of detainees “sick because they are there and getting sicker while they remain there”.

The Manus camp particularly appalled Young. “When you go to Manus Island and you walk down what is called the ‘walk of shame’ between the compounds and you see the men there at the fences it’s an awful experience,” he says.

“You have to feel shame. You have to understand what that feeling is about in order to be able to be compassionate. By feeling the shame you stay on the right side of the line.”

Young told Guardian Australia IHMS figures had shown for some time that a third of adults and children in the detention system had what he called “a significant-level disorder”. If they were living in Australia, that would require the care of specialist medical health services. The figures only got worse as detainees stayed longer in detention: “After a year it approaches 50%.”

Last week, in alarming evidence to an Australian Human Rights Commission inquiry, Young said the immigration department had refused to accept IHMS statistics proving damage to children and adolescents held in prolonged detention. He told the inquiry: “The department reacted with alarm and asked us to withdraw the figures.”

In a belligerent appearance before the inquiry, the secretary of the immigration department, Martin Bowles, accused the president of the Human Rights Commission, Gillian Triggs, of making “highly emotive claims” about health problems in the detention system. He had not heard evidence of the problems provided by Young and other IHMS doctors earlier in the day.

His hand shook as he confronted Triggs. When his evidence produced laughter he demanded the room be silenced. He refused to answer some questions and retreated at times behind a wall of bureaucratic prose.

But Bowles did not deny a link between prolonged detention and mental illness. He called this a “well-established” issue and insisted his department was doing “everything it humanly can” to provide “appropriate medical care” to address the mental health problems of detainees.

Young told Guardian Australia that was impossible: “The problem is the system.”

Young is confident that in his time at IMHS the men and women working for him made better assessments of detainees’ health and delivered much better treatment than in the past.

“But you can’t mitigate the harm, because the system is designed to create a negative mental state. It’s designed to produce suffering. If you suffer, then it’s punishment. If you suffer, you’re more likely to agree to go back to where you came from. By reducing the suffering you’re reducing the functioning of the system and the system doesn’t want you to do that.

“Everybody knows that the harm is being caused and the system carries on. Everybody accepts that this is the policy and the policy cannot change. And everybody accepts that the only thing you can do is work within the parameters of the policy.”

The window of reasonableness closes
Young arrived in the system in 2011 at a crucial moment: the high court was about to knock back the Gillard government’s proposed “Malaysia solution” and, as the boats arrived in ever-increasing numbers, the detention system was bursting at the seams. So the government began processing detainees quickly and releasing large numbers into the community on bridging visas. “The problems that we were seeing from a mental health perspective decreased massively.”

Young has been a psychiatrist for nearly 20 years, most of that time working in public health. He joined IHMS believing the detention system was problematic but confident that good could be done from the inside. “I felt that given the experience I had I could work between the immigration department and IHMS and the detention health advisory group to bring about positive change.”

The year before Young’s arrival, the immigration department had been put on notice once again that prolonged detention harms mental health. Professor Kathy Eager of Wollongong University reached that conclusion in a study commissioned by the department itself.

“There is,” she wrote, “almost universal criticism of the policy of detaining asylum seekers, particularly in terms of the mental health implications.”

Her findings were backed by the department’s independent Detention Health Advisory Group (Dehag), the Australian College of Mental Health Nurses and the Australian Psychological Society. In 2011 the Royal Australian and New Zealand College of Psychiatrists declared: “Prolonged detention, particularly in isolated locations, with poor access to health and social services and uncertainty of asylum seeker claims, can have severe and detrimental effects.”

While detainees were being rapidly released, Young observed attitudes towards them improved throughout the system. They were not treated as prisoners.

Their mental health was generally good: “These people are actually quite robust and psychologically healthy individuals despite all the suffering that they have been through.”

But what Young calls “the window of reasonableness” stayed open for only six months. With boats arriving in unprecedented numbers and the opposition in full cry, the government reversed direction. Once again boat people were to be held for long periods. The camps on Manus and Nauru were reopened. Kevin Rudd announced that no new boat arrivals would end up living in Australia.

“You just can’t overstate how things changed so rapidly when the policy changed,” Young says. Once again the system treated them as prisoners. The impact on their mental health was as predicted: fine for a few months, then increased depression, anxiety and stress.

“Most people have a level of resilience which allows them to function fairly well for a few months, but after that time there is a steady deterioration … after six months the cumulative harms accelerate very rapidly.”

Asylum seekers self-harming is ‘seen as bad behaviour’.
Uncertainty does the worst damage, Young says. Then comes hopelessness. “They are constantly given a message that they are on a negative pathway, meaning their claim is not going to be accepted. This is despite what we know about the outcomes of processing in the long term, which is that greater than 80% of people are found to be genuine refugees.”

And they have so little autonomy. “Just the day-to-day daily lives that they experience living in the detention system means that they have very little control over what they do. It makes things particularly difficult for people who are there with their children as well. Their capacity to act as parents and to make decisions on behalf of their families is so restricted.”

Young sees immigration detention as inherently more harmful than prison. “In prison those with mental health problems generally improve. People are more well on their release than when they entered. What we see in detention is the opposite of that. Over the course of time in detention, they get sicker.

“We don’t have families in prisons. Secondly, when people go to prison they go through a recognised independent judicial process. It’s not arbitrary. This is an arbitrary process and people see it as being unfair and that is another factor.

“Also, when people are in prison they have a definitive sentence so they know there is an end point. This is not like that at all. This is indefinite.”

Each quarter IHMS presents the department with figures on the health of detainees. The data for July to September 2013 showed a third of those held in detention for more than a year were experiencing extremely severe depression; 42% were suffering extremely severe anxiety; and 42% were extremely stressed. The report notes these figures are consistent with internationally published research: “The pattern shows the negative mental health effects of immigration detention with a clear deterioration of mental health indices over time in detention.”

Abbott takes power
“People didn’t really take Rudd seriously,” Young recalls. “But everybody was saying when the Libs get in it’s really going to get tough. So there was a building up of expectation that things were going to get worse, which made it worse in itself.”

When the change came in late 2013, there was no radical shift in policy. “Everything just got harsher.”

Relations between the department and its independent health advisers were already rocky. Dehag had been set up in 2006 at a time of acute embarrassment after it was discovered that a schizophrenic Australian resident, Cornelia Rau, was being held in the detention.

She was thought to be German, was desperately ill and the immigration department refused to release her for treatment. She was finally identified naked in the yards of the Baxter detention centre.

Dehag had an independence the department came to regret. Its dozen members were nominated by peak medical authorities, including the Australian Medical Association, the Mental Health Council of Australia and the professional colleges for nursing, general practitioners and psychiatry. The experts were at the table but the department found itself dealing with people who could neither be corralled nor muzzled.

“It’s always been a very tense relationship,” says Louise Newman, director of the centre for developmental psychiatry and psychology at Monash University. Newman chaired the group for a time. “At every meeting until they disbanded us we would make a statement that we did not support mandatory detention or prolonged detention of any form, that it was damaging and that it created problems that we could not fix.”

Young, who sat in on the group’s meetings, confirmed the experts’ fundamental objection to detention: “That’s been the baseline position that they have always held and they have always presented.”

The group watched with concern as the Gillard government reversed its policy of swift release for asylum seekers. Newman sees the second round of detention as worse than the first because it came as the evidence of harm was even more firmly established. “They replicated the very conditions that they have admitted contribute to mental harm and deterioration,” she said.

“It’s seen as collateral damage. The department does what it can to reduce it but in the name of the greater good of border protection and deterrents it doesn’t really matter. We’re saving lives by sending people mad.”

The group drove change. “The department was very pleased to use things that we brought in, so any positive reforms that have gone on in the system in terms of screening people and healthcare and health standards were all done by Dehag.”

But Newman alleges the department later sabotaged medical screening of asylum seekers for signs of torture and trauma. “We argued that no one who had been tortured should be detained or particularly not in remote places. The departmental doctors decided the best way to get around that was not to do the screening, so they didn’t find out who was tortured. They stopped it on Christmas Island so people could be shipped away before it was even known if they were trauma survivors.”

Tension between Dehag and the department intensified after Bowles was appointed secretary of the department in 2012, Newman says. Bowles is not a doctor but for much of his career was a health administrator before joining the defence department. He is one of a group of former army and defence figures who now hold the most senior positions in the immigration department.

Bowles announced a review of Dehag, which he renamed the Immigration Health Advisory Group (Ihag). He failed in manoeuvres to change its membership but imposed a former military doctor, Paul Alexander, as its chairman. “It was meant to be a much more controlled group,” Newman says.

Bowles wanted the experts to withdraw from public debate. Young says: “They wanted the thing to be more watertight.” The experts were not accused of leaking. “But they expressed views in public which were relevant to the business before the committee.” They continued to do so. The most vocal was Newman.

The experts and the department continued to be at loggerheads over the standard of care for detainees. Newman says Dehag and Ihag always argued that detainees had to be looked after “regardless of visa status” while they were in Australian hands, and it was an ethical obligation on all medical practitioners working in the system to provide care to Australian standards.

But once Nauru and Manus reopened, the department began to demand treatment be pegged to the much lower standards of care on those islands. There would have to be exceptions – no inpatient mental healthcare is available on Manus or Nauru – but the department’s wish was to lower the general standard of care for detainees in those camps.

At what was to be the last meeting of Ihag in August 2013, the issue was debated at length. An impasse was reached, says Newman. “The department at a very high level from secretary down argues the Australian government is not obliged to provide our standard of care to these people.”

But experts insisted that standards must be maintained and that the department’s plan was an ethical minefield for doctors. “Clinicians who go along with it are absolutely compromised,” says Newman.

Ihag experts continued to work in the system, but they never met as a group after Abbott’s victory in the federal election of September 2013. A long pattern of suddenly cancelled meetings ended with no meetings called at all. In mid-December the experts received letters thanking them for their service. They were dismissed. Alexander was now to be the sole adviser on medical matters to the renamed Department of Immigration and Border Protection.

Scott Morrison, the new minister, issued a statement: “The large membership of the group made it increasingly challenging to provide balanced, consistent and timely advice in a fast-moving policy and operational environment.”

Young says: “That doesn’t wash at all. Ihag had consistently told the department things it didn’t want to hear and the department had pretty transparently sabotaged the operation of it for more than 12 months.”

The chiefs of peak medical bodies, including the AMA’s Dr Steve Hambleton, expressed shock at Ihag’s demise. Abbott condemned the generally negative reporting of the move as “a complete beatup by the ABC and some of the Fairfax papers”. The prime minister declared: “This was a committee which was not very effectual.”

The rising tide of data
Morrison had been in the job only a few months when he assured Australia that mental health problems among detainees were on the wane. In mid-December, Nine News reported: “Immigration minister Scott Morrison yesterday said diagnosed mental health problems among detainees in Australia had fallen from a peak of 12% in 2011 to the current rate of 3.4% as a result of greater resourcing.”

Young is scathing about Morrison’s figures. “That’s not a prevalence rate. It never has been. It’s a pale shadow of what the real prevalence rate is because of the way that data is derived.”

Young says Morrison was ignoring the figures revealed by regular screening and instead using a count of visits to GPs or psychiatrists where mental health problems were raised. “It doesn’t take into account people who may have a disorder who are not seeing either of those two categories of clinicians.”

Gathering better statistics was one of Young’s key ambitions in his time at IHMS. The department dragged its feet on his proposals to use new measures to screen mental health problems. “There seemed to be a fear that it would result in controversy or threaten the application of the policies of deterrence,” Young says.

But the chief psychiatrist finally got his way and the new measures were used for the first time in the first quarter of this year. Young presented these figures to the Royal College of Australian and New Zealand Psychiatrists in May. They confirmed the long-established pattern: about a third of all those in detention had clinically significant problems – and the longer the detention, the worse the problems.

Half those who had been detained for 19 months or more were extremely or severely depressed; 40% were extremely or severely stressed; and 40% were extremely or severely anxious. The worst scores were gathered on Manus and Nauru. But the figures show a common pattern across the whole detention system.

In a PowerPoint presentation provided to Guardian Australia by the college, Young concludes: “All show linear deterioration in mental health status over time in detention.”

Young’s staff were also collecting figures on the impact of detention on children. “Changing to instruments more appropriate for children has been something the department has dragged their feet on for quite a long time.”

Young shocked the Human Rights Commission inquiry last week by alleging the department refused to accept these Honosca (Health of the Nation Outcome Scales for Children and Adolescents) figures.

He told Guardian Australia: “This is not the only instance where data which has been seen as controversial or just difficult to understand has been buried.”

But Triggs requested the figures be given to her inquiry. They show across the mainland detention system a large number of children showing emotional distress or related symptoms. Young considered the figures a sign of serious problems that needed urgent consideration and action. Some of these children are those that IHMS doctors reported as showing issues of self-harm, regression, aggression, bed-wetting and despair.

The Health of the Nation Outcome Scales for Children and Adolescents figures
When Bowles was questioned at the inquiry, he did not deny his department issued instructions to IHMS to withdraw the figures but was at pains to suggest to the commission that they remained under consideration by the department. He said: “I have no doubt that most of this sort of reporting is mainstream.”

Giving evidence to Triggs’s inquiry was Young’s last assignment for IHMS. As his three years with the commercial providers drew to a close, he decided to make a professional and public assessment of the detention system once he was free to do so.

“As a medical practitioner your duty is always to your patients and the people you look after,” he says. “To them you have a broader moral and ethical responsibility. In this case you see harm being done and as the primary duty of a doctor is to do no harm, your duty is to speak out against that harm – to say that harm should not be done.”

Bondi fitness scheme turns the tide on treating mental illness

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medication, mental health issues, physical health, weight gain

Bondi fitness scheme turns the tide on treating mental illness

A groundbreaking “lifestyle medicine programme” developed on the surfers’ paradise of Bondi Beach in Australia will be used by the NHS to improve the scandalously neglected physical health of people with serious mental illness.

There are more than 300,000 people in England diagnosed with conditions such as schizophrenia, bipolar disorder and psychosis. But their antipsychotic medication, while reducing disturbing symptoms such as hearing voices and experiencing hallucinations, also causes rapid weight gain within two months of starting a course, precipitating diabetes and heart and circulatory diseases. Weight gain is often why some patients who stop taking their medication relapse and have to be sectioned and return to hospital.

In addition, many people with mental illness are heavy smokers, have chaotic lifestyles, take little exercise and have poor diets and it is hardly surprising that they die, on average, 15 to 20 years earlier than the general population. Gaps between those responsible for mental healthcare and physical wellbeing were revealed in the 2012 National Audit of Schizophrenia, a survey of 5,000 NHS patients with a diagnosis of schizophrenia. It found that only 29% received an adequate assessment of risk factors for cardio-metabolic disease (body mass index, smoking, blood pressure, blood glucose and cholesterol).

About five years ago, health workers in the Bondi Beach suburb of Sydney who were treating young people experiencing their first episode of serious mental illness, started to raise concerns about their patients’ rapid weight gain.

Professor Katherine Samaras, a diabetes and obesity specialist at the University of New South Wales, and one of the architects of the Bondi programme, told the Guardian that despite international expectations of a sunny climate and beach culture Bondi, Sydney (and Australia in general), shares first-world problems of inactivity and overeating calorie-rich foods. Antipsychotic medications also increase feelings of hunger and encourage inactivity, she says, thereby creating a potentially lethal mix.

As a result Keeping the Body in Mind, a multidisciplinary programme was devised, providing patients with vital life skills: what to eat, where to buy it, how to cook it, and how to exercise.

Each patient gets 12 weekly individual sessions with a dietitian and exercise physiologist, weekly group education sessions and access to a gym.

The “show how to cook/exercise/eat/shop” part of the programme was so popular, it was integrated with seeing the psychiatrist and mental health workers, which boosted attendance and engagement, says Samaras. “We have compiled a cookbook of recipes, to which the young people contributed to as well, with their favourite recipes.”

Pilot research presented at the international congress of endocrinology in Chicago earlier this month compared 16 young people who took part in the lifestyle intervention programme with a control group who received the usual care. Over the course of 12 weeks, the lifestyle intervention group gained an average of 1.2 kg, compared with 7.3 kg in the control group. Now the programme is undergoing a formal cost effectiveness analysis.

“Our programme was relatively cheap and of course this early investment in health offsets the cost of treating heart disease and diabetes,” says Samaras.

Some 60 young people aged 15-25 come through the Bondi model. It now forms part of the National Institute for Health and Care Excellence (Nice) guidelines on the care of young people with serious mental illness. And it is being piloted by the NHS in Worcester under the guise of Shape – the Supporting Health and Promoting Exercise – programme for young people with psychosis with a view to it being rolled out across the NHS.

The Bondi model dovetails with the introduction from April this year of physical health “MOTs” for seriously ill inpatients in every NHS mental health trust in England.

Dr Geraldine Strathdee, NHS England’s national director for mental health, describes the MOTs as the world’s largest ever initiative to improve the physical health of people with mental illness and a “clinical quality game changer”.

As part of the MOTs, trusts will be paid to ask patients about smoking status and diet, and monitor weight, blood pressure, glucose and cholesterol levels.

Mental health nurses, psychiatrists, health care assistants and psychologists will carry out the MOTs. This marks a sea change in the way psychiatric patients are treated. It is hoped this will prevent them from falling through the gaps in services historically divided under physical or mental health banners.

Back in Bondi Julio De Le Torre was 21 when he was diagnosed with bipolar disorder in 2012. He says the Keeping the Body In Mind programme helped him shed some 20kg he gained as a result of medications, enabling him to finish his degree and pursue a career in engineering. He is back on the surf and says: “I feel like a normal person now”.

Schizophrenia: the most misunderstood mental illness?

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diagnosis, discrimination, fear, help, media, mental health issues, paranoia, psychosis, recovery, schizophrenia, shame, silence, stereotypes, stigma

Schizophrenia: the most misunderstood mental illness?

Let’s face it, when most people think about schizophrenia, those thoughts don’t tend to be overly positive. That’s not just a hunch. When my charity, Rethink Mental Illness, Googled the phrase ‘schizophrenics should…’ when researching a potential campaign, we were so distressed by the results, we decided to drop the idea completely. I won’t go into details, but what we found confirmed our worst suspicions.

Schizophrenia affects over 220,000 people in England and is possibly the most stigmatised and misunderstood of all mental illnesses. While mental health stigma is decreasing overall, thanks in large part to the Time to Change anti stigma campaign which we run with Mind, people with schizophrenia are still feared and demonised.

Over 60 per cent of people with mental health problems say the stigma and discrimination they face is so bad, that it’s worse than the symptoms of the illness itself. Stigma ruins lives. It means people end up suffering alone, afraid to tell friends, family and colleagues about what they’re going through. This silence encourages feelings of shame and can ultimately deter people from getting help.

Someone who knows first hand how damaging this stigma can be is 33 year-old Erica Camus*, who was sacked from her job as a university lecturer, after her bosses found out about her schizophrenia diagnosis, which she’d kept hidden from them.

Erica was completely stunned. “It was an awful feeling. The dean said that if I’d been open about my illness at the start, I’d have still got the job. But I don’t believe him. To me, it was blatant discrimination.”

She says that since then, she’s become even more cautious about being open. “I’ve discussed it with lots of people who’re in a similar position, but I still don’t know what the best way is. My strategy now is to avoid telling people unless it’s comes up, although it can be very hard to keep under wraps.”

Dr Joseph Hayes, Clinical fellow in Psychiatry at UCL says negative perceptions of schizophrenia can have a direct impact on patients. “Some people definitely do internalise the shame associated with it. For someone already suffering from paranoia, to feel that people around you perceive you as strange or dangerous can compound things.

“I think part of the problem is that most people who have never experienced psychosis, find it hard to imagine what it’s like. Most of us can relate to depression and anxiety, but a lot of us struggle to empathise with people affected by schizophrenia.”

Another problem is that when schizophrenia is mentioned in the media or portrayed on screen, it’s almost always linked to violence. We see press headlines about ‘schizo’ murderers and fictional characters in film or on TV are often no better. Too often, characters with mental illness are the sinister baddies waiting in the shadows, they’re the ones you’re supposed to be frightened of, not empathise with. This is particularly worrying in light of research by Time to Change, which found that people develop their understanding of mental illness from films, more than any other type of media.

These skewed representations of mental illness have created a false association between schizophrenia and violence in the public imagination. In reality, violence is not a symptom of the illness and those affected are much more likely to be the victim of a crime than the perpetrator.

We never hear from the silent majority, who are quietly getting on with their lives and pose no threat to anyone. We also never hear about people who are able to manage their symptoms and live normal and happy lives.

That’s why working on the Finding Mike campaign, in which mental health campaigner Jonny Benjamin set up a nationwide search to find the stranger who talked him out of taking his own life on Waterloo bridge, was such an incredible experience. Jonny, who has schizophrenia, wanted to thank the man who had saved him and tell him how much his life had changed for the better since that day.

The search captured the public imagination in a way we never could have predicted. Soon #Findmike was trending all over the world and Jonny was making headlines. For me, the best thing about it was seeing a media story about someone with schizophrenia that wasn’t linked to violence and contained a message of hope and recovery. Jonny is living proof that things can get better, no matter how bleak they may seem. This is all too rare.

As the campaign grew bigger by the day, I accompanied Jonny on an endless trail of media interviews. What I found most fascinating about this process was how so many of the journalists and presenters we met, were visibly shocked that this young, handsome, articulate and all-round lovely man in front of them, could possibly have schizophrenia.

Several told Jonny that he ‘didn’t look like a schizophrenic’. One admitted that his mental image of someone with schizophrenia was ‘a man running about with an axe’. It was especially worrying to hear this from journalists, the very people who help shape public understanding of mental illness.

Many of the journalists also suggested that through the campaign, Jonny has become a kind of ‘poster boy’ for schizophrenia and in a way, I think he has.

Jonny has mixed feelings about the label. “I hope that by going public with my story, I’ve got the message out there that it is possible to live with schizophrenia and manage it. It’s not easy, it’s an ongoing battle, but it is possible. But I’m aware that I’m one of the lucky ones. I’ve been given access to the tools I need like CBT, but that’s not most people’s experience. Because of our underfunded mental health system, most people don’t get that kind of support. I can’t possibly represent everyone affected, but I hope I’ve challenged some stereotypes.”

As Jonny rightly says, one person cannot possibly represent such a diverse group of people. Schizophrenia is a very broad diagnosis and each individual experience of the illness is unique. Some people will have one or two episodes and go on make a full recovery, while others will live with the illness for the rest of their lives. Some people are able to work and be independent and others will need a lot of support. Some people reject the diagnosis altogether.

What we really need is a much more varied and nuanced depiction of mental illness in the media that reflects the true diversity of people’s experiences.

What I hope Jonny has managed to do is start a new conversation about schizophrenia. I hope he has made people think twice about their preconceptions of ‘schizophrenics’. And most importantly, I hope he has helped pave the way for many more ‘poster boys’ and girls to have their voices heard too.

For more information, visit Rethink Mental Illness

*Name has been changed

 

A third of first-time mothers suffer depressive symptoms, research finds

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baby, Children, Depression, depressive symptoms, diagnosis, early years, first-time mothers, four years postpartum, GPs, health professionals, health visitors, irritable, low mood, maternal health, mental health issues, midwives, mothers, new mothers, parents, Postnatal Depression, postpartum, pregnancy, risk, signs, tearful, training, worrying

A third of first-time mothers suffer depressive symptoms, research finds

One in three first-time mothers suffers symptoms of depression linked to their baby’s birth while pregnant and/or during the first four years of the child’s life, according to research.

And more women are depressed when their child turns four than at any time before that, according to the study, which challenges the notion that mothers’ birth-related mental struggles usually happen at or after the baby’s arrival.

The findings have led to calls for all women giving birth in the UK to have their mental health monitored until their child turns five to ensure that more of those experiencing difficulties are identified.

The results are based on research in Australia, but experts believe that about the same number of women in the UK experience bouts of mental ill-health associated with becoming a mother.

In all 1,507 women from six hospitals in Melbourne, Australia, told researchers from the Murdoch children’s research institute and royal children’s hospital in Parkville, Victoria, about their experience of episodes of poor mental health at regular intervals until their child turned four.

The authors found that almost one in three first-time mothers reported “depressive symptoms on at least one occasion from early pregnancy to four years postpartum [and that] the prevalence of depressive symptoms was highest at four years postpartum”. The women’s depressive symptoms are often short-lived episodes and do not mean that the women were diagnosed with postnatal depression. Studies in both the UK and internationally have estimated that between 10% and 15% of new mothers suffer from that clinical condition.

The researchers also found that four years after the child’s birth 14.5% display depressive symptoms, of whom 40% had not previously reported feeling very low. At that time, women with only one child were much more likely (22.9%) than those with two or more offspring (11.3%) to be depressed.

Dr Jim Bolton, a member of the Royal College of Psychiatrists and a consultant psychiatrist at a London hospital, said that one in three women giving birth in the UK were likely to become depressed at some point during those first four years. “If a similar study was done here, I wouldn’t be surprised if the results were similar. Usually the sorts of mothers who are at greater risk of depression are younger mothers who feel they can’t cope and mothers living in situations of adversity or deprivation or partner violence,” he said.

“These findings are about depressive symptoms, which can be very short-lived, not a formal diagnosis of illness or postnatal depression. This study isn’t saying that one in three women gets that,” stressed Bolton, who treats mental health problems in pregnancy and after birth among new mothers in his hospital’s women’s health unit.

The authors recommend that the UK overhauls its monitoring of maternal mental health, which focuses on pregnancy and the early years after birth, because more than half the women who experience depression after becoming a parent are not identified by GPs, midwives or health visitors.

More women could have postnatal depression than the usual estimate of 10%-15% partly because women may mistake the signs of it – which include being more irritable than usual or unusually tearful, inability to enjoy being a parent or worrying unduly about the baby’s health – as being things undergone by all new mothers.

Health professionals do not always spot it or ask the right questions to identify it, though are far more aware of it than ever, Bolton added.

One leading psychiatrist said that the one in three women who had depressive symptoms was between two and five times higher than the estimated number of people in the general population who would experience serious low mood in their lifetime, but was higher than the number of women who experienced the most severe forms of depression. Between 5%-10% of people generally suffer major/serious depression during their lifetime.The study, published in BJOG: An international journal of obstetrics and gynaecology, is the first to follow a sizeable number of new mothers for as long as four years after birth. Elizabeth Duff, senior policy adviser at the parenting charity the NCT, said: “This study has included mothers for four years after birth, so suggests that perinatal mental health needs to be monitored for a longer period. Given the devastating effects of postnatal depression, health professionals should give equal consideration to the mental and physical health of parents with young children.”

A Department of Health spokeswoman said it welcomed any new research that would lead to women receiving better help with maternal depression.

“We want to do everything we can to make sure women and families get as much support as possible throughout pregnancy and beyond. That’s why, earlier this month, we announced that expert training in mental health will be rolled out for doctors and midwives to identify and help women who are at risk of depression or other mental health issues,” she said.

Numbers of midwives and health visitors have been growing under the coalition, while specialist mental health doctors and midwives will help improve earlier diagnosis of such problems, she added. However, the Royal College of Midwives said that even more midwives were needed to ensure mothers received the best possible care of their psychological welfare.