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

Tags

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

It was said:

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”.

Miscarriage misconceptions boost feelings of guilt and shame, study says

Tags

causes, guilt, isolation, loss, miscarriage, misconceptions, pregnancy, shame, stigma

Miscarriage misconceptions boost feelings of guilt and shame, study says

Feelings of guilt and shame in women who experience miscarriages are exacerbated by misconceptions over the causes, a US study suggests.

An online survey of 1,084 people, which formed the basis for research published in the Obstetrics & Gynecology journal on Monday, found that almost half of those who had a miscarriage felt guilty. Two in five said they felt like they had done something wrong, and the same number reported feeling alone.

A significant number of the respondents were under misapprehensions as to what caused the loss of the pregnancy. Three-quarters believed that a stressful event could bring about a miscarriage, 64% thought that lifting a heavy object could be a cause, and a fifth that previous use of oral contraceptives could induce pregnancy loss.

Coupled with the fact that 57% of those who had suffered a miscarriage said they were not given a cause for the loss, the researchers, from the Albert Einstein College of Medicine at Yeshiva University and Montefiore Medical Center, both in New York, believe such misapprehensions could contribute to the the negative feelings experienced.

Dr Zev Williams, the director of the programme for early and recurrent pregnancy loss, said: “The results of our survey indicate widespread misconceptions about the prevalence and causes of miscarriage. Because miscarriage is very common but rarely discussed, many women and couples feel very isolated and alone after suffering a miscarriage. We need to better educate people about miscarriage, which could help reduce the shame and stigma associated with it.”

The respondents, who were self-selecting, filled in a 33-question survey, which was open for three days in 2013, to assess perceptions of miscarriage, with 10 of the questions specifically directed at men or women reporting a history of miscarriage.

Of those who took part 15% said they or their partner had suffered a miscarriage, but the majority of respondents (55%) believed that miscarriages are uncommon (defined as less than 6% of all pregnancies). The truth is that miscarriages end one in four pregnancies and are by far the most common pregnancy complication, the paper says.

A fifth of people incorrectly believed that lifestyle choices during pregnancy, such as smoking or using drugs or alcohol, were the single most common cause of miscarriage, more common than genetic or medical causes. In reality, 60% of miscarriages are caused by a genetic problem.

The importance of hearing from others who have gone through the same experience was highlighted by a significant minority of those who had suffered a loss in pregnancy. Almost half said they felt less alone when friends disclosed their own miscarriage and 28% stated that celebrities’ disclosure of miscarriage had eased their feelings of isolation.

The authors concluded: “Patients who have experienced miscarriage may benefit from further counselling by healthcare providers, identification of the cause, and revelations from friends and celebrities. Healthcare providers have an important role in assessing and educating all pregnant patients about known prenatal risk factors, diminishing concerns about unsubstantiated but prevalent myths and, among those who experience a miscarriage, acknowledging and dissuading feelings of guilt and shame.”

The majority (55%) of respondents were women and all were aged 18-49. The sociodemographic distribution across gender, age, religion and geographic location and household income was consistent with 2010 national census statistics but race and ethnicity were not.

Body dysmorphic disorder: charity video reveals the image anxieties that can push people to the edge

Tags

anxiety, appearance, BDD, body dysmorphic disorder, cbt, Depression, diagnosis, distress, isolation, medication, misdiagnosis, physical appearance, professionals, suicide

Body dysmorphic disorder: charity video reveals the image anxieties that can push people to the edge

It is a treatable condition suffered by at least 2% of the population, both male and female, that devastates the lives of those who have it and can lead to prolonged depression and even suicide. Now a fledgling charity, the Body Dysmorphic Disorder Foundation, hopes to raise awareness of the obsessive anxiety condition that leaves people convinced there is something flawed or “ugly” about their looks.

The foundation’s first conference, on 30 May in London, is aimed at health professionals, body dysmorphic disorder (BDD) sufferers and their carers, and is being promoted by a two-minute film, You Are Not Alone, directed by Steve Caplin, which tackles one of the greatest issues surrounding BDD: the idea that the person with it is isolated and cannot fit in.

“One of the biggest problems is that this is an under-researched disorder which is not fully understood by either professionals or laymen,” says clinical psychologist Dr Annemarie O’Connor, director of themindworks, a London-based psychology practice, who will be running a workshop at the conference. “This is not simply a case of feeling low or having to change your clothes a couple of times before you go out. It’s an obsessive anxiety disorder which can lead to huge levels of distress.”

That distress in turn can lead to prolonged bouts of depression and often suicide. “There’s such a high level of hopelessness and a real conviction among sufferers that they are ugly to look at or flawed,” explains O’Connor.

“Many sufferers turn to cosmetic intervention, but when that doesn’t change how they feel or how they see themselves. They become utterly convinced that a better way doesn’t exist, and this makes suicide a real feature of the disorder.”

Robert Pattinson, who was catapulted to fame after getting the role of vampire Edward Cullen in the Twilight films, told Australia’s Sunday Style magazine that he suffers from anxiety and BDD issues, which can become crippling before a red-carpet event.

“I get a ton of anxiety, right up until the second I get out of the car to the event, when suddenly it completely dissipates,” said Pattinson. “But up until that moment I’m a nutcase. Body dysmorphia, overall tremendous anxiety. I suppose it’s because of these tremendous insecurities that I never found a way to become egotistical. I don’t have a six-pack and I hate going to the gym. I’ve been like that my whole life. I never want to take my shirt off.”

Scarlett Bagwell’s 19-year-old daughter, Alannah, first began exhibiting signs of BDD at the age of 14. “I noticed that she had lost a lot of weight fast and at first I thought it was anorexia, but then other things began to happen – she would refuse to come out with us, didn’t want to leave her room … I still thought it might be teenage angst, but then one day she dropped out of school, despite having always loved it.

“There was so much turmoil in her head – she couldn’t get on the bus, I’d drive her to school but she wouldn’t go in. She really wanted to, but she couldn’t physically get out of the car. She’s a beautiful girl, but she was convinced there was so much wrong with her – she’d insist that her nose was too big and deformed, that she had tiny, piggy eyes and funny hair.”

As Alannah’s condition worsened, including bouts of self-harm and suicide attempts, so her family struggled to get a diagnosis. “I had to fight the system to get the proper treatment for her,” says her mother. “Just getting a diagnosis was so hard and meanwhile Alannah went from being very independent to being a baby again. At times I even had to force her to wash and I would wash her hair for her. Everything was a struggle. I felt I was failing my daughter.”

The hard-won key to her recovery was a combination of cognitive behavioural therapy (CBT) specifically tailored for BDD sufferers and anti-depression medication.

Alannah is now sitting her A/S exams at a local college and intends to go to university. Her mother hopes that the establishment of a regular conference will lead to further understanding, help and support for those with BDD. “I think that because everybody has slight issues with their appearance – they don’t like their hair, or they think a particular dress makes them look bad – they can’t understand the struggle that actual body dysmorphics go through,” she says. “It stops you functioning. People with body dysmorphia are very isolated; they often can’t bring themselves to go out, no matter how much they want to, they don’t want to be seen.

“We were lucky that Alannah has had help and the support of her family, but I wonder how many people struggle without that support because they are diagnosed later, undiagnosed or misdiagnosed,” she said.

Self-harm is not just attention-seeking: it’s time to talk openly about the issue

Tags

attention-seeking, Bullying, causes, emotional distress, emotional pain, emotions, isolation, obsessions, pain, physical pain, professional help, relief, secret, self-harm, stress, teenagers, young people

Self-harm is not just attention-seeking: it’s time to talk openly about the issue

Three years ago, with her parents and sisters out for dinner, then-13-year-old Lucy found herself alone in her family’s Lincolnshire home. Dressed in her pink Tinker Bell pyjamas, she began to make herself a cup of tea. Then she spotted an object on the kitchen counter that immediately diverted her attention. “Shall I do it?” Lucy asked herself. “Will it stop the pain?”

For Lucy, now 17, that evening marked the start of a two-and-a-half year struggle with self-harm. Two weeks before, she had been brutally attacked and raped (which she now describes as “the incident”). At the time, anxious they wouldn’t believe her, Lucy never fully revealed to anyone what had happened. In her mind, she tried to repress the rape. She began shutting herself in her bedroom. She told her parents she was feeling unwell. Physical pain, she decided, was the only way to purge her pent-up emotional pain.

“When you keep all your problems in, it feels like you’re screaming inside,” Lucy says. “But when you cut or burn yourself, the pain is more physical. You feel like you’re releasing that scream. After a few months, self-harming became part of my daily routine.”

Eventually, both at school or at home, Lucy was self-harming four times a day. She wore black jeans, black tops and even black gloves to conceal her scars. “I pushed everyone everyone away” Lucy says. “I stopped caring about school. My grades suffered. Self-harm became a real obsession. It took over my life.”

Today, having made a huge effort to stop, Lucy has not self-harmed for more than six months. But self-harm is still on the rise among the UK’s young population. Data published last year by a collaborate study from England Health Behaviour in School Aged Children (HBSC) revealed that up to one in five 15-year-olds across the country self-harm. During the past decade, according to the same study, there has been a three-fold increase in the total number of UK teenagers self-harming.

What drives young people to self-harm? Therapist Jenna Mutlick, who has a personal experience of it, says it is usually some form of “self-punishment”. People believe they have done something wrong – even when they haven’t – and then feel they deserve the pain. “I know a few people who self-harm because they are bullied and eventually come to believe that they then deserve to be bullied,” she says. “When you self-harm, it is so hard to escape from the [mental] space that you are in.”

“It’s a very heterogeneous group of people who self-harm, and there are a variety of reasons why people might start,” says Professor Glyn Lewis, head of psychiatry at University College London. “Clearly, there are people who self-harm because they want to take their own lives, but there are also people who want to self-harm because they are in difficult situations or want to relieve stress.

“As a long-term strategy, of course, self-harm is not very effective,” he adds, “but people do report that they get some form of relief from upsetting thoughts or emotions. Some forms of self-harm are obviously very dangerous, but there’s a continuum. Some people may only scratch themselves very superficially, for example, which won’t do any long-lasting damage.”

The causes of self-harm are likely to be complex, even if the person harming does not see the issues in that way. Kieran, from Glasgow, began self-harming after five years of “constant” physical and verbal bullying at school. His parents split up when he was seven, though he says it was the bullying – which still torments him today – that incited his self-harming. “The bullying made me feel really unbalanced,” says Kieran, now 23. “I started to self-harm when I was aged 11, and it kind of just snowballed from there. I stopped eating. I isolated myself from a lot of my friends and family. I kept it a secret for almost a decade.”

Like Lucy, Kieran says that self-harming became a secret obsession. The bullying made him feel “physically and mentally numb”. Self-harm, by contrast, made Kieran feel more alive, and he would regularly self-harm in his bedroom at night. “It brought me out of my slumber,” he says. “It made me feel normal, and I became addicted to doing it for that reason.” He says that the self-harm was like an “adrenaline shot” that brings everything back into focus.”

Kieran admits that he still has a “daily battle” with self-harm. He is significantly better than he was a few years ago, though, when he would harm himself up to 400 times in one evening. “It’s a high level of emotional distress that causes people to resort to self-harming,” he says. “People sometimes feel like they can’t cope with their emotion. It’s how they cope with life’s daily stresses.”

Chris Leaman, from the UK mental health charity YoungMinds, says it is still very much a taboo subject in British society. “Every year, we work with Childline, YouthNet and selfharmUK to try and combat these sort of stigmas for Self-Harm Awareness Day,” he says. “There is a definite problem around young men not feeling like they can talk about their issues, which can make self-harm quite a common issue among them.”

“Some people do talk about self-harm quite openly, but that’s relatively unusual,” says Professor Glyn Lewis. “A lot of people conceal self-harming behaviour from their friends and family. There are not necessarily signs to look out for; it’s more a case of often asking people how they are feeling, and keeping communication open with them. As a rule, families and friends concerned about someone self-harming always should talk to the person themselves and encourage them to seek professional help.”

Statistically, teenage girls are still more than twice as likely to self-harm than young males, and this has helped create another gender-based stigma: that self-harming girls are simply seeking attention. Fiona Brooks, professor of adolescent and child health at the University of Hertfordshire, who led the investigations for last year’s HBSC report, identifies this as a prevalent problem. “Nowadays, young people are in a much more uncertain world than before,” she says. “Instead of self-harming just being dismissed as attention seeking, it’s something that needs to be taken seriously. Equally, if young girls are self-harming for attention, that’s a different matter that needs to be taken just as seriously.”

Lucy thinks back on that evening she started self-harming, and wishes that she could tell herself to stop – and talk to someone. Talking, like with most former self-harmers, has been a significant part of Lucy’s recovery, but she also credits her own determination as a decisive factor. “If you don’t want to stop, you won’t,” she says. “In the end, a lot of it comes down to how you see yourself. I used to feel people were always judging me, but now I feel I don’t care what they think. Why should I let them control my happiness?”

Domestic violence could be stopped earlier, says study

Tags

abuse, abusive relationships, Children, coercion, control, coping, danger, domestic abuse, domestic violence, fear, harm, health workers, help, impact, isolation, murder, police, professionals, relationships, risk, serious injury, teenagers, training

Domestic violence could be stopped earlier, says study

Victims of domestic violence are abused for almost three years before they get the help they need, and some are subjected to more than 50 incidents during that time, according to a study of the largest database of domestic violence victims in the UK.

The figures from the domestic abuse charity SafeLives reveal that almost a quarter of “high-risk” victims have been to an A&E with injuries sustained during violent abuse, and some went as many as 15 times before the problem was addressed.

Analysis of the SafeLives database, which has records of more than 35,000 cases of adults experiencing domestic abuse since 2009, found that 85% of victims had been in contact with an average of five professionals in the year before they got “effective” help from an independent domestic violence adviser (IDVA) or another specialist practitioner.

“Time and time again no one spots domestic abuse, even when victims and their children come into contact with many different public agencies. It’s not acceptable that victims should have to try to get help repeatedly. This leaves victims living in fear and danger and risks lifelong harm to their children,” said Diana Barran, the chief executive of SafeLives, which was previously called Co-ordinated Action Against Domestic Abuse (Caada).

Barran said the study was “more shocking evidence” that domestic violence could often be stopped earlier. “Every conversation with a professional represents a missed opportunity to get victims and their children the help they need,” she said.

SafeLives estimates that there are at least 100,000 victims at high risk of murder or serious injury in England and Wales, 94% of them women.

The study found that victims and often their children lived with abuse for an average of 2.7 years. Three-quarters reported abuse to the police, and 23% went to A&E because of violence sustained in abusive relationships.

Frances Wedgwood, a GP in Lambeth who provides training on domestic violence to health workers through the national Iris project, said a challenge for doctors was that many women did not come to them to disclose domestic violence.

“Domestic violence is still a very hidden problem and in my experience women do not disclose if they are not asked,” she said. “We need to get better at asking people directly if they need help.”

The study sheds light on the long-lasting impact of living in a family coping with domestic violence. According to the survey, in about a quarter of cases on the domestic violence database the victim has a child under the age of three. The study estimates that 130,000 children in the UK are living with domestic abuse, and that children are directly harmed in 62% of cases.

Among teenagers who suffered domestic abuse in their own relationships, almost half had grown up in households where violence was commonplace, the study found.

Vera Baird, former solicitor general and the current police and crime commissioner for Northumberland, said professionals needed help and training to have the confidence to deal with domestic violence.

“Domestic abuse is not a one-off violent attack. It is deliberate long-term use of coercion to control every part of the partner’s life. Violence, sexual abuse, financial control, constant criticism, isolating from family and friends are all familiar tools,” she said.

“People in that situation do not find it easy to speak and need those who could help to be alert. The alternative is what these figures suggest: victims and their families locked unnecessarily into cruelty and ill-treatment for years.”

Case study

Rebecca, 34, lived with domestic abuse for eight years before she sought help

One time I was having a nap in the afternoon, the baby had been teething so I’d been awake all night, and I woke up he was standing over me with a mop handle carved into a point, like a spear. He was pushing it into my throat, accusing me of cheating. Then he picked me up and threw me against the wall. I ran downstairs but he followed me, kicking and punching me and split my lip.

I locked myself in the bathroom and called 999. When the doorbell rang I heard chatting, calm talking. There was one young male officer, and my ex-partner was telling him that I was postnatal, that I’d gone mental and he was just defending himself. I started shouting at the officer: ‘Why aren’t you helping me?’ I swore and the officer said people could hear me, and it was a public disturbance so I swore again. He put handcuffs on me. He wouldn’t let me put my shoes on, so I wouldn’t move, and he lifted me up by the handcuffs and put me in the back of the car.

I was in a cell for hours asking for a solicitor. The duty sergeant finally came and when he opened the hatch he could see I’d been attacked. He got the officer to come and apologise to me and asked me if I wanted to file a complaint, or if I wanted to press charges against my partner. But I said no. I was exhausted and my baby was at home with my partner, who’d been drinking since the morning. It got worse after that. He was sort of smug, saying he could do what he wanted. I know there’s more training for police now, but that put me off calling the police for years.

By 2003/4 the abuse was worse. We had two girls by that time. I was hospitalised with concussion after he’d kicked me in the head wearing steel-toe-capped boots. The police and the paramedics came and I was patched up and sent home. They asked me if I wanted to press charges but I didn’t want to go through all that, I thought it would make it worse. I didn’t know where the support would come from, where I could get help.

Another time I went to the hospital walk-in. I had a black eye and it wasn’t getting better. A doctor asked me what had happened and I said I’d been punched in the face. He repeated what I said: ‘You were punched in the face.’ I didn’t know what he wanted me to say. I was ashamed, I didn’t want to say my husband did this to me. If he had asked, I’d have told him. But he didn’t.

Social services got in touch because of the paramedics’ reports; he got put on an anger management course. But Christmas Day night he’d been drinking. He grabbed me by the throat and I stumbled and fell; he kept kicking me over and over again. My teeth went through my lip, my nose was bleeding, I couldn’t see. He picked me up and carried me to the bathroom saying: ‘Look what you made me do. Why did you do that?’ I crawled to the living room and phoned the police before he ripped it out of the wall.

I did press charges that time. He was sentenced to four months for ABH. He served two. We were separated, but we got back together. Why? I had such low self-esteem and he was always there, always pestering me, grinding me down. He’d be so nice, helping with the children and I was exhausted, I needed the help. I thought it might be OK.

It was OK for a while. The kids had been on the at-risk register because a couple of incidents had been reported, but they came off that and social services were visiting less. His behaviour just went back to the way it had been before, and that’s when I decided to leave.

I remember the exact moment when I saw the sticker for the Women’s Aid helpline: it was on the back of the toilet door in Asda. It took me a couple of months to call but when I did they offered me refuge. I didn’t even know that existed. They organised transport when he was out. It was quite surreal, but it was such a relief.

Women’s Aid were so helpful, they gave us so much support including counselling. My eldest daughter was seven when we left, her sister was three and their brother was nine months. That was the main reason I left, I was terrified for my kids.

I do think professionals should offer support. If they can’t support victims themselves, they just need to know who can. I think if I’d had that information I would have left earlier.

I was 16 when we got together; he was 23. By the time I was 17 we had a daughter. I thought it was a good relationship, he helped with the parenting and around the house, but about a year later, in 1999, slowly controlling behaviour crept in. He wouldn’t like certain friends, or me going out without him, wearing certain clothes or makeup. It was quite subtle at first, but then when we argued there was pushing, then hair-pulling – each time it was a little worse than before.

Soon it was normal to have slapping, kicking, punching, throwing things. At first I didn’t tell anyone; my self-esteem was very low. I just tried to pretend it wasn’t happening, I didn’t know anything about domestic abuse.

Malnutrition in conflict: the psychological cause

Tags

Children, conflict, despair, displaced, flashback, hopelessness, hypervigilant, infanticide, irritability, isolation, malnutrition, natural disasters, parents, post-traumatic stress, psychological support, recovery, signs, suicide, trauma, violence

Malnutrition in conflict: the psychological cause

Treating malnutrition in humanitarian crises, such as conflict and natural disaster, is far more complex than simply curing disease and providing children with therapeutic foods. Often, post-traumatic stress disorder – common in extreme situations – hinders treatment and its success. In Bangui, in the Central African Republic (CAR), the number of children suffering from life-threatening malnutrition has tripled since the outbreak of violence in December 2013.

Each month, 180 patients are being seen in a ward that initially had just 49 beds available for malnourished children. For many weeks, two to three patients – and their caregivers – were sharing single beds, increasing the risk of cross-infection of illness and delaying recovery.

The cause of severe acute malnutrition runs far beyond economic hardship and lack of food. Many of the hundreds of thousands of people displaced by fighting have been directly exposed to death threats, witnessed the deaths of neighbours or family members, and lost nearly all of their belongings. They are often exhausted by the harsh living conditions in camps.

75% of over 1,000 case studies of the parents of malnourished children collected by Action Against Hunger between July 2013 and March 2014 presented symptoms of post-traumatic stress linked to their exposure to extreme violence. The stress prompted behavioural changes, flashbacks, fatigue, isolation, excessive irritability, and feelings of hopelessness and despair.

These experiences also provoked reactions that – while understandable, normal, and usually temporary – can be disabling enough to impact a mother’s ability to nurse and feed her child. Nurses leading pre- and post-natal sessions with women in the 12 health centres around Bangui have reported that some mothers become convinced they cannot produce milk, or fail to respond to their child’s needs, resulting in early weaning that can be fatal for babies in an already challenging environment. In extreme cases, some mothers have attempted suicide and infanticide.

Children, while too young to fully understand what they have witnessed, may develop physical symptoms such as continuous crying, refusing to eat and bed wetting. Even small babies can present signs of trauma, such as feeding and sleep disturbances, continuous crying, and poor interaction. Not recognising the signs, some parents don’t make the connection and severely scold their children. To combat this, malnourished children and their carers are receiving psychological and social support.

At the nutritional therapeutic ward of Bangui’s main pediatric hospital, Action Against Hunger’s nutritional, psychological and social teams offer free treatment for severely malnourished children from a specialised counselling team. Feeding times, medical monitoring and psychological and motor activities pace the daily routine.

When Dieumerci Tsongbele, a single parent to his six-year-old daughter Jessica, arrived at the hospital, she had been refusing food and was not interacting with others. When he joined a welcoming session led by psychological and social experts, Tsongbele and other parents learned about factors that exacerbate malnutrition, including trauma. The information evoked an emotional response from the father, who had witnessed people killed. While he managed to escape the violence, the experience had left him unable to sleep, irritable and hypervigilant. Overwhelmed by the situation, he admitted he had been less attentive to his daughter’s needs.

During the programme, Tsongbele and the other parents participated in various activities with their children ranging from toy making to baby massage, which aim to provide both parents and children with a safe space to recreate natural and vital bonds that are essential for human development. Play sessions help to limit the negative effects of malnutrition strengthen parent-child relationships. Malnutrition treatment is not simply about filling stomachs, but also restoring the desire to eat.

Names have been changed to protect identities.

Stephanie Duvergé is a Action Against Hunger psychologist in the Central African Republic. Follow @ACF_UK on Twitter.

Britain’s elderly – lonelier than ever. Where do they all belong?

Tags

elderly, isolation, loneliness, lonely, older adults, public health issue

Britain’s elderly – lonelier than ever. Where do they all belong?

Well over one million elderly people in the UK describe themselves as lonely often or all of the time, and many more consider their pet, or even the television, to be their most important form of company.

Age UK said that the findings from their latest loneliness survey revealed a significant increase in self-reported social isolation, with 10 per cent of people describing themselves as often or always lonely. This represents an increase of nearly 300,000 on last year’s survey.

The survey, conducted this month, consulted more than 2,000 people over the age of 65, of whom there are nearly 11 million in the UK.

Two in every five respondents said their main form of company was either their pet or the television. Nationally, this would be the equivalent of 4.3m people.

Loneliness has been identified as a key public health problem in recent years, as more people become cut off from society as they retire from work and lose their independence through disability.

Recent research in the US suggests that being lonely carried twice the health risk of obesity, with people who reported loneliness 14 per cent more likely than average to die in the course of the six-month study.

The Health Secretary, Jeremy Hunt, highlighted loneliness in a speech last year, calling the plight of the “chronically lonely” a “national shame”. He said it was a problem which “in our busy lives we have utterly failed to confront as a society”.

However, Age UK’s director Caroline Abrahams said that funding cuts, which were brought in by the Coalition, were forcing many of the local services which help elderly people stay connected, such as lunch clubs, to close – increasing the work that the voluntary sector had to do.

“We know how devastating loneliness can be for older people and these figures are another reminder of the scale of the issue,” she said.

Kate Jopling, director for the Campaign to End Loneliness, added: “It should be a grave concern to health and social care managers that so many older people are now severely lonely. The evidence is clear that loneliness leads to avoidable ill health.

“If we fail to take this public health issue seriously now we may end up pushing already stretched services to breaking point.”

Loneliness twice as unhealthy as obesity for older people, study finds

Tags

health problems, isolation, loneliness, older adults, support

Loneliness twice as unhealthy as obesity for older people, study finds

Loneliness can be twice as unhealthy as obesity, according to researchers who found that feelings of isolation can have a devastating impact on older people.

The scientists tracked more than 2,000 people aged 50 and over and found that the loneliest were nearly twice as likely to die during the six-year study than the least lonely.

Compared with the average person in the study, those who reported being lonely had a 14% greater risk of dying. The figure means that loneliness has around twice the impact on an early death as obesity. Poverty increased the risk of an early death by 19%.

The findings point to a coming crisis as the population ages and people increasingly live alone or far from their families. A study of loneliness in older Britons in 2012 found that more than a fifth felt lonely all the time, and a quarter became more lonely over five years. Half of those who took part in the survey said their loneliness was worse at weekends, and three-quarters suffered more at night.

Previous studies have linked loneliness to a range of health problems, from high blood pressure and a weakened immune system to a greater risk of depression, heart attack and strokes. In his recent book, Loneliness, John Cacioppo, a psychologist at the University of Chicago, says that the pain of loneliness is akin to physical pain.

Cacioppo said the world was experiencing a “silver tsunami” as baby boomers reached retirement age. “People have to think about how to protect themselves from depression, low subjective well-being and early mortality,” he said.

In light of the damaging health effects of loneliness, Cacioppo said people approaching retirement age might want to think twice about pulling up their roots and heading to fresh pastures to live out their retirement. He described results from the study at the American Association for the Advancement of Science meeting in Chicago.

“We have mythic notions of retirement. We think that retirement means leaving friends and family and buying a place down in Florida where it is warm and living happily ever after. But that’s probably not the best idea,” he said.

“We find people who continue to interact with co-workers after retirement and have friends close by are less lonely. Take time to enjoy yourself and share good times with family and friends. Non-lonely people enjoy themselves with other people.”

The researchers found that some people were happy living a life of solitude. Others still felt lonely, and suffered the health impacts of loneliness, even with family and friends close by. The findings suggest that people needed to feel involved and valued by those near to them, and that company alone was not enough.

Caroline Abrahams at Age UK said the study added to a growing body of research showing that being lonely not only made life miserable for older people, but also made them more vulnerable to illness and disease.

“It’s time we took loneliness seriously as a threat to a happy and healthy later life. We need to do more to support older people to stay socially connected. This is a big part of our job at Age UK and everyone can help by being a good friend or neighbour to the older people they know,” she said.

Local branches of Age UK help older people through befriending schemes and other services that include home visits and phone calls for people who are feeling lonely or isolated, she added.

Hikikomori: Why are so many Japanese men refusing to leave their rooms?

Tags

hikikomori, isolation, Japan, withdrawn

Hikikomori: Why are so many Japanese men refusing to leave their rooms?

As many as a million young people in Japan are thought to remain holed up in their homes – sometimes for decades at a time. Why?

For Hide, the problems started when he gave up school.

“I started to blame myself and my parents also blamed me for not going to school. The pressure started to build up,” he says.

“Then, gradually, I became afraid to go out and fearful of meeting people. And then I couldn’t get out of my house.”

Gradually, Hide relinquished all communication with friends and eventually, his parents. To avoid seeing them he slept through the day and sat up all night, watching TV.

“I had all kinds of negative emotions inside me,” he says. “The desire to go outside, anger towards society and my parents, sadness about having this condition, fear about what would happen in the future, and jealousy towards the people who were leading normal lives.”

Hide had become “withdrawn” or hikikomori.

In Japan, hikikomori, a term that’s also used to describe the young people who withdraw, is a word that everyone knows.

Tamaki Saito was a newly qualified psychiatrist when, in the early 1990s, he was struck by the number of parents who sought his help with children who had quit school and hidden themselves away for months and sometimes years at a time. These young people were often from middle-class families, they were almost always male, and the average age for their withdrawal was 15.

It might sound like straightforward teenage laziness. Why not stay in your room while your parents wait on you? But Saito says sufferers are paralysed by profound social fears.

“They are tormented in the mind,” he says. “They want to go out in the world, they want to make friends or lovers, but they can’t.”

Symptoms vary between patients. For some, violent outbursts alternate with infantile behaviour such as pawing at the mother’s body. Other patients might be obsessive, paranoid and depressed.

When Saito began his research, social withdrawal was not unknown, but it was treated by doctors as a symptom of other underlying problems rather than a pattern of behaviour requiring special treatment.

Since he drew attention to the phenomenon, it is thought the numbers of hikikomori have increased. A conservative estimate of the number of people now affected is 200,000, but a 2010 survey for the Japanese Cabinet Office came back with a much higher figure – 700,000. Since sufferers are by definition hidden away, Saito himself places the figure higher still, at around one million.

The average age of hikikomori also seems to have risen over the last two decades. Before it was 21 – now it is 32.

So why do they withdraw?

The trigger for a boy retreating to his bedroom might be comparatively slight – poor grades or a broken heart, for example – but the withdrawal itself can become a source of trauma. And powerful social forces can conspire to keep him there.

One such force is sekentei, a person’s reputation in the community and the pressure he or she feels to impress others. The longer hikikomori remain apart from society, the more aware they become of their social failure. They lose whatever self-esteem and confidence they had and the prospect of leaving home becomes ever more terrifying.

Parents are also conscious of their social standing and frequently wait for months before seeking professional help.

“I don’t want to talk to anybody. I don’t want to do anything. I don’t even have the will to pick up the phone. Just what am I supposed to do?” Welcome to NHK! was a novel, comic book and cartoon about the life of a hikikomori. Copyright Tatsuhiko Takimoto, Kendi Oiwa 2004

A second social factor is the amae – dependence – that characterises Japanese family relationships. Young women traditionally live with their parents until marriage, and men may never move out of the family home. Even though about half of hikikomori are violent towards their parents, for most families it would be unthinkable to throw them out.

But in exchange for decades of support for their children, parents expect them to show respect and fulfil their role in society of getting a job.

Matsu became hikikomori after he fell out with his parents about his career and university course.

“I was very well mentally, but my parents pushed me the way I didn’t want to go,” he says. “My father is an artist and he runs his own business – he wanted me to do the same.” But Matsu wanted to become a computer programmer in a large firm – one of corporate Japan’s army of “salarymen”.

“But my father said: ‘In the future there won’t be a society like that.’ He said: ‘Don’t become a salaryman.'”

Like many hikikomori, Matsu was the eldest son and felt the full weight of parental expectation. He grew furious when he saw his younger brother doing what he wanted. “I became violent and had to live separately from my family,” he says.

One way to interpret Matsu’s story is see him as being at the faultline of a cultural shift in Japan.

“Traditionally, Japanese psychology was thought to be group-oriented – Japanese people do not want to stand out in a group,” says Yuriko Suzuki, a psychologist at the National Institute for Mental Health in Tokyo. “But I think especially for the younger generation, they want more individualised or personalised care and attention. I think we are in a mixed state.”

But even hikikomori who desperately want to fulfil their parents’ plans for them may find themselves frustrated.

Andy Furlong, an academic at the University of Glasgow specialising in the transition from education to work, connects the growth of the hikikomori phenomenon with the popping of the 1980s “bubble economy” and the onset of Japan’s recession of the 1990s.

It was at this point that the conveyor belt of good school grades leading to good university places leading to jobs-for-life broke down. A generation of Japanese were faced with the insecurity of short-term, part-time work.

And it came with stigma, not sympathy.

Job-hopping Japanese were called “freeters” – a combination of the word “freelance” and the German word for “worker”, arbeiter. In political discussion, freeters were frequently bundled together with “neets” – an adopted British acronym meaning “not in education, employment or training”. Neets, freeters, hikikomori – these were ways of describing the good-for-nothing younger generation, parasites on the flagging Japanese economy. The older generation, who graduated and slotted into steady careers in the 1960s and 1970s, could not relate to them.

“The opportunities have changed fundamentally,” says Furlong. “I don’t think the families always know how to handle that.”

A common reaction is for parents to treat their recalcitrant son with anger, to lecture them and make them feel guilty for bringing shame on the family. The risk here is that – as with Hide – communication with parents may break down altogether. But some parents have been driven to extreme measures.

For a time one company operating in Nagoya could be hired by parents to burst into their children’s rooms, give them a big dressing down, and forcibly drag them away to a dormitory to learn the error of their ways.

Kazuhiko Saito, the director of the psychiatry department at Kohnodai Hospital in Chiba, says that sudden interventions – even by healthcare professionals – can prove disastrous.

“In many cases, the patient becomes violent towards the staff or the parents in front of the counsellors, or after the counsellors have left,” he says.

Kazuhiko Saito is in favour of healthcare professionals visiting hikikomori, but he says they must be fully briefed on the patient, who must know in advance that they are coming.

In any case, the do-nothing approach has been shown not to work. Tamaki Saito likens the hikikomori state to alcoholism, in that it is impossible to give up without a support network.

His approach is to begin with “reorganising” the relationship between the patient and his parents, arming desperate mothers and fathers with strategies to restart communication with their children. When the patient is well enough to come to the clinic in person he can be treated with drugs and therapy. Group therapy is a relatively new concept to Japanese psychology, but self-help groups have become a key way of drawing hikikomori into wider society.

For both Hide and Matsu, the journey to recovery was helped by visiting a charity-run youth club in Tokyo known as an ibasho – a safe place for visitors to start reintroducing themselves to society.

Both men have made progress in their relationships with their parents. Matsu has been for a job interview as a computer programmer, and Hide has a part-time job. He thinks that by starting to talk again with his parents, the whole family has been able to move on.

“They thought about their way of life in the past and in the future,” he says. “I think that before – even though they were out working – their mental attitude was just like a hikikomori, but now they’re more open and honest with themselves. So as their child I’m very happy to see them change.”

Many parents of hikikomori visit the ibasho even though their children may never be well enough to come with them.

Yoshiko’s son withdrew from society very gradually when he was 22.

At first he would go out to buy shopping, but she observes ruefully that internet shopping means this is no longer necessary and he no longer leaves the house. He is now 50 years old.

“I think my son is losing the power or desire to do what he wants to do,” she says. “Maybe he used to have something he wanted to do but I think I ruined it.”

 

We must identify girls at risk from gangs

Tags

gangs, isolation, risk, self-harm, sexual abuse, sexual exploitation, vulnerability

We must identify girls at risk from gangs

When I met Rita she was 17 and in custody for the 13th time. Her offending had escalated from moped theft and “antisocial” behaviour with boys when she was 11, through to firearms possession. She had been self-harming for the past three years, had contracted chlamydia, was malnourished, had developed an addiction to crack cocaine, and was being sexually exploited by the street gang to whom she was associated.

This had not happened to Rita overnight. It was the consequence of years of exploitation by her male peers, isolation from her friends, exclusion from school, and being sexually abused by a family member when she was eight years old. From a young age, a myriad of professionals had opportunities to intervene and protect Rita, but, instead, her risk snowballed.

A report published this week by the Centre for Mental Health demonstrates that Rita’s case is not a one-off. The report is based on data from 8,000 10- to 18-year-olds, who, following their arrest between August 2011 and November 2012, were screened for 29 different risk factors and health issues, such as family conflict, homelessness and victimisation, as part of a study to identify the most appropriate interventions. The screening process was a pilot run in 37 areas of England. Gang-involved girls were found to be over nine times more likely to exhibit 19 or more of these risk factors than the other young people screened.

Gang-involved girls navigate harmful environments and relationships. According to the study, young women who had “histories of parental imprisonment, poor parental mental health, parental substance misuse, or neglect” were three to five times more likely to be gang-involved than other girls who were screened. In addition, they were three times more likely to be identified as victims of sexual abuse and four times more likely to have been excluded from school.

The same girls were also more likely to have difficulties with their physical and mental health and wellbeing than other young people screened. Like Rita, 30% were reported to be self-harming or at risk of suicide, and were over three times more likely to have sexual health needs.

When public attention is focused on the horrendous accounts of groups of adult men sexually exploiting girls around the country, it is easy to forget about girls and young women who are at risk from their peers. The information provided clearly demonstrates that risk can be present in homes, peer groups, schools, neighbourhoods and in wider society, which increases the vulnerability of girls to street gangs. This report provides a statistical backdrop to the accounts given to me by hundreds of women and girls during the Female Voice in Violence project; now it is time to turn the stories and figures into action.

From preventing vulnerability, to the identification of girls linked to gangs, through to the programmes delivered to support them, and routes of safety that are offered, our processes need to be gender-specific. This groundbreaking report throws into sharp relief the impact of gang-association and the opportunities that exist to intervene across a young woman’s lifetime. Of the girls that were screened, 73% engaged with an intervention that was offered to them. It is critical that all agencies who work with girls and young women use the evidence to mobilise and evaluate interventions that will better identify and protect those involved with gangs.