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 robots are helping children with autism

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autism, body movements, chest monitor, Children, classroom, communication, early diagnosis, emotion, facial expressions, family, feedback, interaction, modes, motions, non-threatening, non-verbal communication, reactions, research, robot, social interaction, social skills, teacher, therapist, treatment, withdrawal

How robots are helping children with autism

Anthony Arceri is seven and has autism. His clothes are covered in sensors, and he is standing in front of Zeno, a smiling, 2ft-tall robot. “What is your favourite food?” Zeno asks Anthony. “Chocolate milk and french fries.” “I love chocolate milk,” Zeno replies. The robot raises its arm, and Anthony copies. Zeno rubs his stomach, and so does Anthony.

It looks like fun – and for Anthony, it is. But researchers believe the interaction between Anthony and the robot also holds the key to early diagnosis and treatment of autism. Zeno is the result of a collaboration between Dr Dan Popa at the University of Texas at Arlington, Hanson RoboKind, Dallas Autism Treatment Centre, Texas Instruments and National Instruments – and is the brainchild of Hanson Robot owner and former Disney imagineer David Hanson.

Diagnosis of child autism has traditionally taken place through social interaction and speech exercises. This means that, until a child can speak, diagnosis is either a lengthy process, or can’t happen. But Zeno can interact with children through nonverbal communication such as body movements and facial expressions, speeding up diagnosis and perhaps even enabling it to be carried out before a child can talk.

Zeno isn’t just used for diagnosis. Children with autism can sometimes find social interaction threatening – making them withdraw, even from family members. Robots such as Zeno have features that look slightly human, but are obviously not human. This makes communication, with all its complex and frightening subtleties and nuances, less complicated and more comfortable for the child.

Anthony’s mother, Pamela Rainville, found out about Zeno from the Dallas Autism Treatment Centre, and thought the project might benefit Anthony. “It’s always good for him to be put in different situations, things outside his normal routine. Anytime he can be around other people, it’s a good learning and growing experience for him.”

So far, Anthony has had two therapy sessions with Zeno. Rainville believes he got more out of the second meeting than the first, and she expects he will get even more out of subsequent interactions with the robot. “This second time, Anthony fist-bumped Zeno, which was great. It shows he was a little more relaxed.”

Popa believes that Zeno is a good motivator for children as he is engaging and non-threatening: the children listen to the robot. “The idea is for the robot to instruct kids, give them some useful social skills and at the same time observe their reactions and calculate their reaction times. That calculation could form some kind of an autism scale.”

He says there are three ways in which therapists can use Zeno. “The first mode is called a scripted mode of interaction, where you pre-programme a certain sequence of motions. For the second mode, we have added a control system so we can have an operator or therapist control the robot by tele-operations. In this mode, it mirrors the motions of the instructor.”

In the third mode, the child can take control of the robot. “This can be unsafe as the child can do things – such as slap himself – that the robot will copy and possibly break. So we tend to use this third mode as entertainment only.”

Zeno now has a brother, Milo, as well as an international family. Zeno came first, and is used in research and classroom settings. Milo was created specifically to work directly with children. According to Richard Margolin, director of engineering at Hanson RoboKind and part of the team who developed both robots, some children with autism who had never spoken directly to an adult teacher spoke to Milo.

Milo looks very similar to Zeno. His expressive face is an important feature, because a characteristic of autism is the inability to read and connect with the emotions of others. Children are asked to identify the emotion shown by Milo from multiple choices on an iPad. Milo’s eyes are cameras, recording feedback. The child wears a chest monitor that records changes in heart rate and therefore emotion. A typical lesson would involve Milo and a child interacting one-to-one; the child responding to the robot with an iPad, and a therapist or teacher present to help if needed and record difficulties and progress.

One of Zeno and Milo’s international relatives is Kaspar, designed in the UK by the University of Hertfordshire’s Adaptive Systems Research Group. The size of a small child, unlike Zeno and Milo, Kaspar has a neutral expression so that children can interpret him how they wish. Research is under way to see how Kaspar’s use could support children with other developmental conditions, such as Down’s syndrome or attention deficit hyperactivity disorder, known as ADHD.

Another distant cousin is Nao, who was created in 2006 by Aldebaran Robotics and is being developed as a “house robot”. Along the way, Nao has been used as an educational tool, and the University of Birmingham’s Autism Centre for Education and Research worked with Aldebaran Robotics on a version of Nao to help children with autism. But like Kaspar, Nao has an expressionless face.

What seems to be unique about Zeno and Milo is the way that their expressiveness defies long-held robotic conventions. Designed to be the first advanced social robots in the world, they could eventually have an impact far beyond the diagnosis and treatment of autism. RoboKind envisages a broader role for its robots in educating young children. In the words of his creators, Zeno represents the future of robotics and could be “a wonderful addition to every household”.

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.”

When intensive care is just too intense

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critical care, delusions, Depression, discomfort, disorientated, distress, drugs, early intervention, fears, flashbacks, hallucinations, intensive care, intrusive memories, nightmares, psychological difficulties, stress, techniques, threat, treatment

When intensive care is just too intense

I still remember the first patient I saw in intensive care. A naked man, covered by a white sheet, was plugged into banks of machines through cables that radiated from his body. His face was covered by a breathing mask, his blood connected to bags of fluids. Muted and voluntarily immobile, so as not to break the fragile web that kept him alive, his eyes tracked me as I entered the cubicle. Intensive care can be a disconcerting place.

As a treatment, it is remarkably successful. Perhaps the greatest tribute to the people who work in critical care is this simple fact: most people leave intensive care alive – despite being dangerously close to death when they arrive. Through a combination of dedication, decision-making and technology, critical care staff ensure that most people pull through. This is the result of years of careful research that has focused clinical practice on restoring the body’s functioning as quickly and efficiently as possible.

But recently there has been a dawning realisation that the impact of intensive care extends beyond the survival of the body. Dorothy Wade is based at University College Hospital in London and is one of the country’s few intensive care psychologists. She led a recent study which found that more than half of patients assessed at follow-up had marked psychological difficulties. “We learned that patients were suffering from serious depression or having frightening flashbacks and nightmares to their time in intensive care,” says Wade. “This badly affected their quality of life and also held back their physical recovery from their illness.”

In another study, recently submitted for publication, Wade interviewed patients about the hallucinations and delusions they experienced while in intensive care. One patient reported seeing puffins jumping out of the curtains firing blood from guns, another began to believe that the nurses were being paid to kill patients and zombify them. The descriptions seem faintly amusing at a distance, but both were terrifying at the time and led to distressing intrusive memories long after the patients had realised their experiences were illusory.

Many patients don’t mention these experiences while in hospital, either through fear of sounding mad, or through an inability to speak – often because of medical breathing aids, or because of fears generated by the delusions themselves. After all, who would you talk to in a zombie factory?

These experiences can be caused by the effect of serious illness on the brain, but painkilling and sedating drugs play a part and are now used only where there is no alternative. Stress also adds to the mix but is often caused inadvertently by the way intensive care wards are organised. “If you think about the sort of things used for torture,” says Hugh Montgomery, a professor of intensive care medicine at UCL, “you will experience most of them in intensive care. As a patient, you are often naked and exposed, you hear alarming noises at random times, your sleep-wake cycle is disrupted by being woken up for medical procedures through the night, you will be given drugs that could disorient you, and you will be regularly exposed to discomfort and feelings of threat.”

This has led to a recent push to reorient treatment toward reducing patient stress, and long-term psychological problems, without sacrificing life-saving efficiency. Take this simple example: a study led by consultant critical care nurse John Welch at UCL found that the pitch or tone of alarms on intensive care equipment has no relation to how urgent the situation is. Many frightening-sounding alarms are just reminders – this bag needs refilling in the next hour; don’t forget to change the filter – and are often left until more important tasks are finished. But, to the uninitiated, it might sound as if death is imminent and no one is responding.

Some stress is simply an unavoidable part of necessary medical procedures. Breathing tubes inserted through the mouth or surgically implanted through the neck are notoriously uncomfortable. And, despite the survival rates, people die in intensive care. A daunting experience if you’re a patient in the same ward.

Helping patients with their intense emotional reactions, whether they arise from hallucination, misunderstanding or medical intervention, normally happens on an ad hoc basis and for many clinicians it is a relatively new situation that hasn’t been incorporated into standard training. In many intensive care units, the approach was to sedate patients for the whole of their admission. As this practice declined, for the first time, clinicians were faced with distressed, possibly hallucinating, awake patients.

Wade is currently working with clinicians to take a more systematic approach to detecting and reducing psychological distress. “There have always been experienced or just naturally empathetic nurses and doctors in intensive care,” she says. “We’re trying to build on that natural care and compassion by teaching nurses and doctors more about the causes and nature of psychological distress… and training them with simple psychological techniques that could help to reduce immediate and long-term distress.”

For his part, Montgomery is less convinced about early intervention. He feels intensive care needs to be reorganised to reduce stress but psychological problems are best dealt with in follow-up clinics.

The best time for treatment is the subject of an ongoing debate, but for the first time studies have been funded that will answer these questions. Intensive care is being rethought and may become, at least psychologically, less intense.

At last, a promising alternative to antipsychotics for schizophrenia

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antipsychotic drugs, causes, cognitive treatment, delusion, dropout rates, hallucinations, medication, psychosis, schizophrenia, side-effects, treatment

At last, a promising alternative to antipsychotics for schizophrenia

Imagine that, after feeling unwell for a while, you visit your GP. “Ah,” says the doctor decisively, “what you need is medication X. It’s often pretty effective, though there can be side-effects. You may gain weight. Or feel drowsy. And you may develop tremors reminiscent of Parkinson’s disease.” Warily, you glance at the prescription on the doctor’s desk, but she hasn’t finished. “Some patients find that sex becomes a problem. Diabetes and heart problems are a risk. And in the long term the drug may actually shrink your brain … ”

This scenario may sound far-fetched, but it is precisely what faces people diagnosed with schizophrenia. Since the 1950s, the illness has generally been treated using antipsychotic drugs – which, as with so many medications, were discovered by chance. A French surgeon investigating treatments for surgical shock found that one of the drugs he tried – the antihistamine chlorpromazine – produced powerful psychological effects. This prompted the psychiatrist Pierre Deniker to give the drug to some of his most troubled patients. Their symptoms improved dramatically, and a major breakthrough in the treatment of psychosis seemed to have arrived.

Many other antipsychotic drugs have followed in chlorpromazine’s wake and today these medications comprise 10% of total NHS psychiatric prescriptions. They are costly items: the NHS spends more on these medications than it does for any other psychiatric drug, including antidepressants. Globally, around $14.5bn is estimated to be spent on antipsychotics each year.

Since the 1950s the strategy of all too many NHS mental health teams has been a simple one. Assuming that psychosis is primarily a biological brain problem, clinicians prescribe an antipsychotic medication and everyone does their level best to get the patient to take it, often for long periods. There can be little doubt that these drugs make a positive difference, reducing delusions and hallucinations and making relapse less likely – provided, that is, the patient takes their medication.

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Unfortunately, dropout rates are high. This is partly because individuals sometimes don’t accept that they are ill. But a major reason is the side-effects. These vary from drug to drug, but they’re common and for many people are worse than the symptoms they are designed to treat.

In addition, antipsychotics don’t work for everyone. It is estimated that six months after first being prescribed them, as many as 50% of patients are either taking the drugs haphazardly or not at all.

The conventional treatment for this most severe of psychiatric illnesses, then, is expensive, frequently unpleasant, and not always effective even for those who carry on taking the drugs. But it is what we have relied upon – which helps to explain why the results of a clinical trial, recently published in The Lancet, have generated so much interest and debate.

A team led by Professor Anthony Morrison at the University of Manchester randomly assigned a group of patients, all of whom had opted not to take antipsychotics, to treatment as usual (involving a range of non-pharmaceutical care) or to treatment as usual plus a course of cognitive therapy (CT). Drop-out rates for the cognitive therapy were low, while its efficacy in reducing the symptoms of psychosis was comparable to what medication can achieve.

So what exactly is CT for schizophrenia? At its core is the idea that the patient should be encouraged to talk about their experiences – just as they would for every other psychological condition. Psychosis isn’t viewed as a biological illness that one either has or does not have. Instead, just like every other mental disorder, psychotic experiences are seen as the severest instances of thoughts and feelings – notably delusions and hallucinations – that many of us experience from time to time.

Working together, the patient and therapist develop a model of what’s causing the experiences, and why they’re recurring. These factors will vary from person to person, so what is produced is a bespoke account of the individual’s experience, which is then used to guide treatment. For example, a person so worried by paranoid fears that they won’t set foot outside might be helped to trace the roots of their anxiety to past experiences; to gradually test out their fearful thoughts; and to learn to manage their anxiety while getting on with the activities they enjoy. An individual troubled by hearing voices will be helped to understand what’s triggering these voices, and to develop a more confident, empowering relationship with them.

These are early days. Nevertheless, most of the meta-analyses of CT’s efficacy for psychosis, when added to standard treatment, have indicated definite (albeit modest) benefits for patients, with the latest showing that CT is better than other psychological treatments for reducing delusions and hallucinations. The latest guidelines from the UK’s National Institute for Health and Care Excellence (Nice) recommend it for those at risk of psychosis and, when combined with medication, for people with an ongoing problem.

But not everyone is convinced, and although the research published in The Lancet is encouraging, it was small scale. CT for psychosis is still evolving, and we think that evolution should prioritise three key areas.

First, we must focus on understanding and treating individual psychotic experiences. As we’ve reported in a previous post, there is increasing reason to doubt the usefulness of the diagnosis “schizophrenia”. The term has been used as a catch-all for an assortment of unusual thoughts and feelings that often have no intrinsic connections, and aren’t qualitatively different from those experienced by the general population. Each psychotic experience may therefore require a tailored treatment.

Second, we must build on the recent transformation in understanding the causes of psychotic experiences, taking one factor at a time (insomnia, say, or worry), developing an intervention to change it, and then observing the effects of that intervention on an individual’s difficulties.

And finally, we must listen to what patients want from their treatment – for example, by focusing on improving levels of wellbeing, which tend to be very low among people with schizophrenia.

What about costs compared with drug treatment? A course of CBT is typically just over £1,000, but if it leads to a reduction in the amount of time patients spend in hospital and their use of other services, or a return to work, then it easily pays for itself.

The Nice guidance on psychosis and schizophrenia, updated this year, is unequivocal:

“The systematic review of economic evidence showed that provision of CBT to people with schizophrenia in the UK improved clinical outcomes at no additional cost. This finding was supported by economic modelling undertaken for this guideline, which suggested that provision of CBT might result in net cost savings to the NHS, associated with a reduction in future hospitalisation rates.”

If the real promise of cognitive therapy can be fulfilled, we may at last have a genuinely effective, relatively cheap, and side-effect-free alternative to antipsychotics for those patients who don’t wish to take them. Watch this space.

Daniel and Jason Freeman are the authors of Paranoia: the 21st Century Fear. Daniel is a professor of clinical psychology and a Medical Research Council Senior Clinical Fellow at the University of Oxford, and a Fellow of University College, Oxford. Twitter: @ProfDFreeman. Jason is a psychology writer. Twitter: @JasonFreeman100

Dispelling the nightmares of post-traumatic stress disorder

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avoidance, behaviour, cbt, distress, Ehlers and Clark, flashback, hyperarousal, interpretations, low mood, Memory, negative thoughts, nightmares, post traumatic stress disorder, psychological effects, psychotherapy, PTSD, reliving, reminders, symptoms, threat, trauma, trauma memories, traumatic event, treatment, triggers

Dispelling the nightmares of post-traumatic stress disorder

On Wednesday morning we woke to the news that a passenger ferry had sunk off the coast of South Korea, with at least four people confirmed dead and 280 unaccounted for. Meanwhile, though the search has continued for the missing Malaysia Airlines plane, relatives’ hopes of a safe landing have long since been extinguished.

Human tragedies like these are the stuff of daily news, but we rarely hear about the long-term psychological effects on survivors and the bereaved, who may experience the symptoms of post-traumatic stress disorder for years after their experience.

Although most people have heard of PTSD, few will have a clear idea of what it entails. The American Psychiatric Association’s Diagnostic and Statistical Manual (DSM) defines a traumatic event as one in which a person “experienced, witnessed, or was confronted with an event or events that involved actual or threatened death or serious injury, or a threat to the physical integrity of self or others”. PTSD is marked by four types of responses to the trauma. First, patients repeatedly relive the event, either in the form of nightmares or flashbacks. Second, they seek to avoid any reminder of the traumatic event. Third, they feel constantly on edge. Fourth, they are plagued with negative thoughts and low mood.

According to one estimate, almost 8% of people will develop PTSD during their lifetime. Clearly trauma (and PTSD) can strike anyone, but the risks of developing the condition are not equally distributed. Rates are higher in socially disadvantaged areas, for instance. Women may be twice as likely to develop PTSD as men. This is partly because women are at greater risk of the kinds of trauma that commonly produce PTSD (rape, for example). Nevertheless – and for unknown reasons – when exposed to the same type of trauma, women are more susceptible to PTSD than men.

What causes it? In one sense, the answer is obvious: a specific trauma. Yet this is only part of the story, because not everyone who is raped or badly beaten up develops PTSD. Of the contemporary psychological attempts to answer that question, the most influential is the one formulated by the clinical psychologists Anke Ehlers and David Clark at the University of Oxford.

They argue that PTSD develops when the person believes they are still seriously threatened by the trauma they have experienced. Why should someone assume they are still endangered by an event that happened months or even years previously? Ehlers and Clark identify two factors.

First is a negative interpretation of the trauma and the normal feelings that follow, for example believing that “nowhere is safe”, “I attract disaster”, or “I can’t cope with stress”. These interpretations can make the person feel in danger physically (the world seems unsafe), or psychologically (their self-confidence and sense of well-being feel irreparably damaged).

Second are problems with the memory of the trauma. Partly because of the way the person experiences the event, the memory somehow fails to acquire a properly developed context and meaning. As a result, it constantly intrudes. Ehlers and Clark liken the traumatic memory to “a cupboard in which many things have been thrown in quickly and in a disorganised fashion, so it is impossible to fully close the door and things fall out at unpredictable times”.

These factors change the way people behave. They may avoid situations that might spark a memory of the trauma, and will sometimes try to deaden their feelings with drink or drugs. Yet these strategies tend to entrench and exacerbate the problem.

PTSD can be treated with antidepressants or various kinds of psychotherapy, including prolonged exposure therapy and eye movement desensitisation and reprocessing. However, a recent meta-analysis of 112 studies conducted over the past 30 years found that cognitive behavioural therapy (CBT) was the single most successful type of treatment.

CBT typically comprises three main strands. First, it evaluates the individual’s excessively negative thoughts about the trauma and its aftermath – for example by helping them understand that they are not to blame or that their feelings are normal and natural. Second, the treatment works on the person’s memory of the trauma: the individual might be asked to write a detailed account of the event; relive it in their imagination; revisit the site of the trauma; or be shown how to cope with the kind of objects or situations that trigger the traumatic memory.

The final strand involves tackling the kind of behaviours that tend to fuel PTSD, for example by demonstrating that attempting to suppress a thought is futile (if you doubt it, try right now not to think of a white bear) or that avoiding a situation only strengthens one’s fear.

A course of CBT for PTSD normally involves meeting with a therapist once or twice a week over several months. Given how debilitating the problem can be, that can seem like a very long time to wait to get one’s life back on track. However, pioneering research published in last month’s issue of The American Journal of Psychiatry suggests that there may be an alternative. Instead of months, it may be possible to tackle the symptoms of PTSD in just seven days.

Anke Ehlers at the University of Oxford and her colleagues randomly assigned 121 patients with PTSD (about 60% female, 40% male) either to a seven-day course of intensive CBT; weekly sessions of CBT for three months; a type of psychotherapy known as emotion-focused supportive counselling; or to a 14-week waiting list. Participants in the first three groups all received the same amount of therapy (18 hours).

The results were striking. The intensive CBT proved almost as successful as the standard three-month course, with respective recovery rates from PTSD of 73% and 77%, and the intensive version produced its effects more quickly. For the supportive counselling group, recovery was 43% (another finding that undermines the idea that all types of psychotherapy are equally effective). Among the waiting list group, just 7% had recovered. Both courses of CBT also led to large reductions in levels of anxiety and depression.

Most importantly, the benefits lasted: 40 weeks after entering the study, about two-thirds of the CBT patients were still free from the symptoms of PTSD. The therapy isn’t easy – it confronts highly distressing events and feelings, after all – but it works.

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Explaining tokophobia, the phobia of pregnancy and childbirth

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anxiety, birth, childbirth, distress, fear, hyperarousal, labour, media, negative birth experience, panic, positive birth experience, post-birth PTSD, pregnancy, PTSD, social media, symptoms, tokophobia, trauma, treatment

Explaining tokophobia, the phobia of pregnancy and childbirth

For expectant mothers, it’s very normal to approach birth with a feeling of trepidation, particularly for the first baby. From the moment a pregnancy is announced, the average pregnant woman is inundated with horror stories of pain and long labours by supposed well-meaning friends, and it can be hard to focus on a positive birth experience when you don’t know what to expect.

But for some women, the fear of childbirth goes beyond trepidation into full-blown anxiety, panic and fear. Known as tokophobia, this phobia of childbirth affects somewhere between 3-8 per cent of pregnant women.

Symptoms include worries specifically about the pregnancy and birth, a fear of harm or death related to the birth, poor sleep, and a sense of hyper-arousal (rapid heartbeat and breathing, difficulty winding down). The fear of childbirth is a common non-medical reason for requesting a caesarean section, and women with this fear have a much higher rate of both caesarean delivery and use of epidural anaesthesia.

There is no clear path to developing fear of childbirth, but there are some risk factors that we know about. A history of anxiety or depression is one risk factor, as is a history of childhood abuse, be it sexual, physical or emotional abuse.

Some studies have also identified patterns with age, suggesting younger mums are more vulnerable, as are those with less education, and mums without a strong social network.

However, a recent study found that one of the biggest influences women reported on their fear of childbirth was the media. Hospital-based reality television programs and medical dramas often feature storylines with dramatic emergency situations during childbirth and this may be all women know of giving birth prior to the event.

We also know that around 95 per cent of pregnant European women report searching for pregnancy and birth information online, and social media and blogs hold the potential for the circulation of misinformation that may heighten fears rather than allay them.

There is another group of women who may find pregnancy and childbirth frightening due to related fears. One of the most common phobias in adults is blood/injury phobia, often including a fear of injections. Pregnancy and childbirth is hence very confronting for these women, who may faint or experience extreme distress at even routine blood tests throughout their pregnancy.

Researchers have found that for first time mothers, a positive birth experience can often relieve the fear of childbirth so that it is no longer an issue for future pregnancies. However, whether or not women start with a fear of childbirth, a negative birth experience can make them up to five times more likely to develop tokophobia for future pregnancies.

A negative experience of birth may be due to complications, feeling out of control, dissatisfaction with care providers, or just not having the birth that was expected. Between 2-6 per cent of women report post-traumatic stress syndrome (PTSD) following a difficult birth experience. PTSD is the disorder once known as ‘shell shock’ for its affliction of soldiers following war, and is characterised by nightmares and re-experiencing of the birth trauma, avoidance of all reminders of the birth, and hyper-arousal. Without treatment, PTSD can limit family size and cause problems in women’s relationships with their partner and their child.

While we may not hear much about tokophobia and post-birth PTSD, their prevalence suggests we do need to look out for women who may be suffering both before and after birth. In addition to the distress at the time, stress and anxiety during pregnancy are linked to a higher rate of preterm birth and later behavioural problems in children.

The good news is that like all anxiety disorders, the fear of childbirth and PTSD can be addressed and treatments are available. One of the most vital elements of treatment is education on birth, whether through the obstetric care provider, midwives, or antenatal classes. Knowing what to expect and having an agreed plan with your care provider can assist to overcome some of the irrational fears.

Linked to this, a supportive and trusting relationship with the care providers who will manage the birth is essential. This is not always possible as some obstetric settings do not allow for repeated contact with the same provider, but a relationship of trust will be more likely to create a positive birth experience.

When problems do occur in pregnancy and birth, a post-birth debriefing can be useful and may help prevent the development of PTSD symptoms. Understanding what went wrong and why things happened the way they did can help with processing the events and accompanying trauma.

As with other anxiety disorders, relaxation, light exercise and slow breathing can help to calm the body and relieve the hyper-arousal that comes with the fear of childbirth. A psychologist can assist with other anxiety management techniques that can help to minimise fears.

For those who find the idea of pregnancy and birth overwhelming, it is important to know that help is available and such symptoms can be successfully treated. The first step is confiding your fears so that those around you can start to support you through what could be a wonderful journey.

Special report: Intersex women speak out to protect the next generation

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adults, androgen insensitivity syndrome (AIS), atypical genitalia, Children, chromosomes, disorder of sex development (DSD), gender, hypospadias, Identity, internal sex organs, intersex, operations, support, surgery, treatment, Young adults

Special report: Intersex women speak out to protect the next generation

It has taken Holly Greenberry, Sarah Graham, Dawn Vago and Elizabeth Jo Roberts years to go public with their stories. Born into a world that insists on dividing people into two sexes, they did not always know how they fitted in. They were born to typical families in typical areas of Britain, but none of them developed into typical male or females. They are intersex.

An estimated one in 2,000 babies is born with an intersex condition or a (controversially named) disorder of sex development (DSD), which means that they are born with a reproductive or sexual anatomy that does not fit the typical definitions of female or male. This can include atypical genitalia, chromosomes or internal sex organs.

The women argue that their very existence has been “eradicated” by British society. Generations of children have been operated upon to “normalise” their genitals or sexual anatomy, while official documentation, from birth certificates to passports, requires a male or female box to be ticked.  They argue it’s one of the last “human rights taboos” in the western world.

The women have a type of androgen insensitivity syndrome (AIS), which means they have XY chromosomes, but are partially or completely insensitive to testosterone – they are all infertile.

The group has come together to launch a campaign, calling for the Government to urgently review the way intersex people are treated. Following on from Germany’s decision to allow newborn babies to be registered as neither male nor female, their recommendations include the option to leave the sex on British birth certificates blank, measures to protect babies or young people from irreversible and non-consensual treatment and surgery, better emotional support and increased education.

“We are at a tipping point,” said Greenberry, co-founder of Intersex UK. “Most intelligent human beings would be completely surprised and utterly dismayed at the civil inequality and human rights abuses that healthy intersex children and young adults are facing.”

She added: “We need to sit around the table with the Government because we have lived through it. We are positive role models, and professional and intelligent women, who want to represent the needs of children so that the problems we experienced aren’t replicated.”

In the 1960s, it became the norm to operate on children with atypical sexual anatomy at a young age. Doctors assigned the child’s gender and operated to reinforce it. Although attitudes started to change around the turn of the millennium, and clinicians say they have moved to a more “multi-disciplinary” approach, there is still no record of the number of operations carried out, according to Professor Sarah Creighton, consultant gynaecologist at University College London Hospitals.

This year, the UN Special Rapporteur on Torture condemned non- consensual surgery on children to “fix their sex”, saying it could cause “permanent, irreversible infertility and severe mental suffering”.

XXXora, a 33-year-old intersex artist from London, who supports the women’s campaign, refused an operation. She was born with ambiguous sex organs and raised as a boy, but describes herself as “super-feminised from the beginning”. She said: “I never had surgery or hormones. We talked about it, but then I wouldn’t be me. I don’t want to morph into a blue or pink box; I want to stay in my silver box.”

But the campaign is not all about surgery. Certain intersex people, such as Greenberry, are struggling to correct the sex marked on their birth certificates, which makes it impossible to marry and more difficult to adopt children.

Lord Wilf Stevenson, opposition whip and former special adviser to Gordon Brown – who has a more common DSD called hypospadias – supports the campaign and has raised concerns with ministers. “The issue is that the current law has been overtaken by medical technology,” he said.

There is also a need to provide long-term emotional support for intersex people. Ellie Magritte (not her real name), the mother of a girl with AIS and a member of the support group DSD Families, said adults “need and deserve much greater investment in adult DSD care, focusing not on gender, genitals and genetics, but on health, wellbeing and happiness”. She said not all people with a DSD define themselves as intersex, but added: “The main challenges for families and kids is the social context in which we live with these conditions.”

Pia Clinton-Tarestad, head of specialised commissioning at NHS England, said that the NHS is “working to assess the services we commission for intersex people”, and that it understood that “issues surrounding the timing of, and consent to surgery, are controversial”. She added that best practice involves “co-operation and agreement” between child, parents and a multidisciplinary clinical team.

Holly Greenbury

When Holly Greenberry was born, almost four decades ago, doctors spotted a degree of sexual ambiguity. She has XY chromosomes, but also partial androgen insensitivity syndrome, leaving her partly insensitive to testosterone. She was assigned a male sex on her birth certificate, but she did not develop secondary male characteristics during puberty. She knew her gender was female and underwent treatment and surgery throughout her teens. Now, the businesswoman, from south-west England, is in the process of adopting a child. Because she is unable to change her name or sex on her birth certificate, adoption is harder and marriage impossible.

“I’ve never been completely male nor completely female in my genetics. I didn’t masculinise the way a male was expected to, and my body feminised in certain areas. I didn’t have the words to express myself; I didn’t know how I fitted in. It left me feeling really isolated and, while I tried to identify as male, I couldn’t do it. It was like having a series of repetitive panic attacks. Surgery was horrifically damaging and led to huge number of follow-up surgeries. It all could have been prevented if there had been more medical understanding and if there had been less haste in trying to guess which label best fitted. I should have been allowed to be an ambiguous teenager with the freedom to express my natural gender.”

Dawn Vago

Thirty-three years ago, when Dawn Vago was born, she looked like a typical baby girl. But when she was a young child, doctors told her parents that she had testes which would have to be removed. The married singer and programme director from Warrington, Cheshire, is genetically XY and has complete androgen insensitivity syndrome, which means she is totally insensitive to testosterone. She has been on oestrogen replacement therapy since she was 11.

“The doctors told my parents there was no one else in the UK with this condition. I felt alienated from all of my classmates. I always identified very much as female, but had issues accepting myself. When I first read my file and saw my diagnosis, my world completely exploded. I found a support group and all of a sudden, felt like I wasn’t alone. The moment of joy turned into anger. I was in my early twenties and had spent my whole life and childhood feeling alienated. I realised that it doesn’t have to be this way.

“The doctors told my parents that they should push me into a career and make me become a busy woman, so maybe I wouldn’t have time to settle down and have a family. They said I would find it very difficult to find a partner. Two and half years ago, when I walked down the aisle to my incredibly handsome husband, deep inside I was sticking a middle finger up to the entire medical establishment. I am very proud of who I am and I love my body, but I hate the journey that I’ve been on.”

Elizabeth Jo Roberts

Elizabeth Jo, a 29-year-old freelance journalist from Edinburgh, was brought up as a girl. At three years old, when doctors discovered undescended testes, they removed them without her parents’ consent. She was told at the age of 10 that she was infertile and, in her mid-teens, that she had androgen insensitivity syndrome, having been born with XY chromosomes. She met other people with intersex conditions for the first time only a few weeks ago.

“My parents told me I couldn’t have children at 10 years old. I took it pretty badly. It’s like when you’re winded and all the air is sucked out of you. It destroyed my adolescence. I got bullied quite a lot. When I was 10 or 11, I was first given oestrogen pills, but I used to forget to take them, so I never really developed significantly.

“I struggled with identity issues throughout my adolescence and even in my twenties. I’ve left it late on in life to meet others like myself. It has been one of the best things I’ve done; emotionally cathartic. I suffered quite heavily from depression. I want to help others to not feel the same way. They don’t have to feel bad about themselves. Social change takes years to happen, but we should be living in a society where people don’t feel bad about their identity because they have chromosomes that are variations on the norm. They should have freedom to express themselves.”

Sarah Graham

Sarah, 44, did not find out the truth about her diagnosis until her early twenties.  The counsellor from Surrey has complete androgen insensitivity syndrome. She presented at birth as a baby girl and was raised as one, but she has XY chromosomes and was born with internal testes, instead of ovaries. When doctors removed them, at the age of eight, they told her they were removing her ovaries to protect her from cancer and  imminent death.

“They should have told my parents the truth about my diagnosis. The lies were enormously damaging to me and affected my life. They put me on oestrogen replacement therapy when I was 12 years old but, if they had left my body intact, I would have produced hormones naturally. Every six months, I was prodded and poked by an army of medical students.

“Once I saw my diagnosis, I felt like a total freak, like I didn’t belong, and was offered no support. I felt like the only person in the world with the condition and that no one would love me. I went into a massive period of self-hatred and self-destruction, which fuelled a drug and alcohol addiction. Children need to be able grow up intersex if they want and parents shouldn’t be so pressured to make a decision. We must be given the space to exist.”

Students stay silent about mental health problems, survey shows

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anxiety, counselling, help, mental health issues, self-harm, stress, students, support, treatment, university

Students stay silent about mental health problems, survey shows

Universities should do more to encourage students with mental health problems to seek help, a leading charity has warned.

More than a quarter (26%) of students who say they experience mental health problems do not get treatment and only one in 10 use counselling services provided by their university, according to a National Union of Students (NUS) study.

Of the students surveyed by the union, one in five say they experienced mental health problems while at university. This is in line with national statistics estimating that in any one year 23% of British adults experience a mental disorder.

Those who do experience mental health problems cite coursework deadlines (65%) and exams (54%) as triggers of distress. Financial difficulties (47%), pressures about “fitting in” (27%) and homesickness (22%) also contribute to mental ill health.

Stress is one of the most common symptoms of distress (80%), with many students also reporting a lack of energy or motivation (70%), anxiety (55%) and insomnia (50%). Some 38% experience panic, while 14% consider self-harm and 13% report suicidal thoughts.

NUS researchers admit that their survey was self-selecting and may exaggerate the prevalence of mental health problems among students. But Hannah Paterson, NUS Disabled Students’ Officer, says the “primary concern” is that very few of the students experiencing distress speak about their problem.

Of those who do experience mental health problems, 64% do not use any formal services for advice and support.

Students are more likely to tell their friends and family about feelings of anxiety, than they are to approach a doctor, academic or university counsellor.

Paul Farmer, chief executive of Mind, says this may be because of the stigma attached to mental illnesses. He adds that universities should do more to reach out to students.

“Higher education institutions need to ensure not just that services are in place to support mental wellbeing, but that they proactively create a culture of openness where students feel able to talk about their mental health and are aware of the support that’s available.

“Opening up to friends and family can help those feeling stressed or anxious, but anyone experiencing suicidal thoughts or consistently feeling down may have an enduring mental health problem, so it’s best they visit their GP. Nobody should suffer alone.”

Poppy Jaman, chief executive of Mental Health First Aid England says the NUS’ findings are unsurprising: “The student community is considered high risk for mental ill health, with exams, intense studying and living away from home for the first time all contributing factors.

“Where symptoms of poor mental health are spotted early and appropriate support and treatment is put in place the subsequent rate of recovery is significantly improved. Much more needs to be done within educational settings to improve the prevention and intervention of mental ill health.”

What health professionals should know about eating disorders

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consequences, contact, counsellors, diagnosis, early intervention, Eating Disorders, family, friends, GPs, health professionals, health service, help, myths, nurses, psychiatrists, psychologists, recovery, sensitivity, social workers, support, symptoms, treatment, weight, young people

What health professionals should know about eating disorders

Over the course of two years, I have met with 40 young women and men who have shared on film honest details about their experiences of eating disorders. Their hope is that sharing their stories will help other people who are similarly affected to feel less alone and encourage them to seek help.

The research shows that common myths about the illness have prevented many young people from getting the treatment and support they needed, from family, friends and even the health service.

During the course of their eating disorder, young people came into contact with many different types of health professionals including GPs, nurses, counsellors, psychologists, psychiatrists, dieticians, social workers and other support workers.

There are some things that health professionals should know when dealing with a young person living with and recovering from an eating disorder.

Anyone can have an eating disorder

Anyone can become ill with an eating disorder. Eating disorders affect people of all ages, backgrounds, sexualities, both men and women. You can’t tell if a person has an eating disorder by just looking at them.

First point of contact is often critical

This first contact with services was often a huge step for a young person. People often found it very difficult to talk about what was going on, trying to hide their problems and it could take months, even years, to seek help. The way they were treated at this point could have a lasting, positive or negative, impact.

Young people hoped that the health professionals would realise just how hard asking for help was and to help nurture and support their confidence to stay in contact with services.

Early intervention is key

Young people often felt that people struggled to recognise the psychological symptoms of eating disorders as well as the range of different eating disorders.

If those who haven’t yet developed a full-blown eating disorder could be recognised, they can also be helped earlier. This is critical, as the longer eating disorders are left undiagnosed and untreated, the more serious and harder to treat they can become.

Effective, early intervention could be achieved when health practitioners were knowledgeable, well trained, sensitive and proactive.

Eating disorders are about emotions and behaviours, not just about weight

A common myth that many of the young people had come across was the thought that people with eating disorders were always very underweight. This idea had made it harder for some to get treatment and support or even to be taken seriously by their doctor.

In some cases, young people felt that the only way for them to be taken seriously and be able to access eating disorder services was to lose more weight. This could have serious consequences; the more weight they lost, the harder it was for them to be able to seek or accept help.

See the whole person, not just the eating disorder

Once in contact with health services, above all else, young people wanted not just to be seen “as an eating disorder” but to be treated as a whole person. It was important that they felt treated as individuals and for health professionals to realise that everyone responded differently.

A good health professional also tried to engage young people on other things than just the eating disorder, hobbies or interests.

Respect the young person

Feeling respected, listened to and being given the space to explain things from their perspective was important for young people during treatment and recovery.

Professionals should take their time and find out what was going on for that particular person, not act on assumptions. Health professionals shouldn’t patronise or dismiss issues that were important to the person in front of them.

This research, funded by Comic Relief, has now been published on online at Youthhealthtalk.org.

Ulla Räisänen is a senior researcher with the health experiences research group at University of Oxford, and was responsible for conducting the study published on Youthhealthtalk.org