Pro-Ana Sites Encourage Extreme Dieting And Eating Disorders In Girls

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anorexia, Eating Disorders, internet, young people

Pro-Ana Sites Encourage Extreme Dieting And Eating Disorders In Girls

Thousands of young girls are using dangerous pro-ana websites that encourage users to ‘starve for perfection’.

According to a new report, Virtually Anorexic – Where’s The Harm?, funded by eating disorder charity beat and internet safety organisation Childnet International, hundreds of websites that encourage extreme dieting and eating disorders are being used with alarming regularity.

The research by University Campus Suffolk notes how ‘pro-ana’ sites, which promote the eating disorder anorexia nervosa, encourage weight loss via dieting competitions, advocate diets of just 400-500 calories per day and champion “thinspiration” (where images of celebrities such as Victoria Beckham and Keira Knightley are used to idealise a certain look).

According to the report, these websites are extremely influential. Many boast communities of thousands of members, with forums and chat rooms available to share tips to hide eating disorders and find an “anabuddy” for support.

Natasha Devon, co-founder of Body Gossip, a campaign that promotes natural, healthy and realistic beauty, said that although the intentions of sites are not always intended to be damaging, the emotional state and vulnerability of users often leads to mutual encouragement.

She told HuffPost UK Lifestyle: “People assume they would automatically know if they were on a pro-anorexia or pro-bulimia website. The press often portrays them as being quite obvious in their intention.

“The reality is that quite often they are just support groups set up on social networking sites by people with the best intentions, but they attract users who are unwell and are completely unregulated.

“It’s important to remember that eating disorders are a mental illness. Even if you’re on an ‘extreme diet’ or training regime you’re not in the best frame of mind. People who still struggle are certainly not in a position to be giving advice to others. Often users of these support groups simply egg each other on.”

In a statement, Dr Emma Bond, author of the report and senior lecturer in Childhood and Youth Studies at University Campus Suffolk (UCS) outlined her recommendations for change:

“People, especially parents and teachers need to increase their awareness so that young people can be helped. We need to encourage young people to develop critical media literacy skills and the media should be more responsible in not publishing pictures of very thin models and celebrities because young people wish to emulate them.

“Eating disorders are not going away, if anything they are becoming more common. We need to alert people to the dangers of harmful content on the Internet. Everyone needs to understand better the risks online and the harm that eating disorders can do to young people”

The report was funded by social investor Nominet Trust.

We’re being left out of the big society, say the deaf

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BSL, deaf community, healthcare, hearing loss, Interpreters, sign language, social exclusion

We’re being left out of the big society, say the deaf

Thousands of deaf people are socially excluded because of a lack of adequate services for sign language users, campaigners say.

Up to 70,000 people, many of whom cannot lip-read or have poor English skills, use British Sign Language (BSL) as their first language. But half of them leave doctors’ appointments feeling confused because of the poor quality, or absence, of interpreters, research suggests.

Action on Hearing Loss has called for improvements in healthcare access and standards for the hearing impaired. A survey by the charity, formerly the Royal National Institute for Deaf People, found that half of BSL users left medical appointments confused. “We are talking about vital information on medication or even traumatic diagnoses,” said Helen Arber, the charity’s head of capacity development.

It also wants the Government to set a minimum standard for communication for deaf people throughout society. Of the 10 million Britons who have some form of hearing loss, more than 800,000 are severely or profoundly deaf. “There is still a huge way to go to ensure any kind of level playing field for them,” Ms Arber added.

“We are proud citizens but we are treated as lesser citizens,” said Jeff McWhinney, a former head of the British Deaf Association, who campaigned for the formal recognition of BSL as a language.

Activists have also complained to the BBC that sign language interpreters were not shown on screen during big events such as the Olympics, the Diamond Jubilee and Barack Obama’s election victory speech. Television broadcasters are legally required to provide subtitles for 80 per cent of programmes and sign language in 5 per cent of programmes.

Caroline Hurley, an IT manager who is deaf, said subtitles were often inadequate: “They are, on average, seven seconds slow and frequently stop when live speakers talk too fast, so we miss important information.”

More: Do you see what I’m saying?

Australia apologises to victims of sexual abuse in the military

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mental abuse, Military, physical abuse, sexual abuse

Australia apologises to victims of sexual abuse in the military

Australia’s defence minister apologised to military personnel past and present who were sexually abused or otherwise mistreated during their service.

He also started an inquiry into hundreds of allegations of abuse over six decades.

Defence Minister Stephen Smith made the apology in Parliament on behalf of the government in the latest step in a two-year effort to reform the culture of the Australian military and it make more accepting of women.

“Young men and women have suffered treatment which no member of our defence force or our community generally should experience,” Smith said.

“Young men and women have endured sexual, physical or mental abuse from their colleagues which are not acceptable and do not reflect the values of a modern, diverse, tolerant, Australian society,” he added.

He noted claims that officers had abused their positions of trust through their own behaviour or by turning a blind eye to the actions of others.

Smith also announced that retired judge Len Roberts-Smith had been appointed to examine allegations of abuse by more than 1,000 alleged victims across every decade since 1950s.

The earliest case relates to the alleged abuse of a 13-year-old navy trainee in 1951, while the most recent relates to events in 2011.

A preliminary review of these allegations by a law firm found that 750 were “plausible,” Smith said.

The three-month inquiry could result in compensation of up to 50,000 Australian dollars ($52,000) for each victim and the alleged perpetrators being referred to criminal authorities for prosecution.

Smith said some of the perpetrators could still be serving in the military.

The government started inquiries last year in response to a young woman’s allegation that a fellow cadet had secretly filmed a sexual encounter between the pair and broadcast it to their colleagues at the Australian military officer training academy. The incident and the attention the government focused on it provoked a wave of complaints of sexual misconduct over the decades.

The man whose brain ignores one half of his world

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hemispatial neglect, stroke, visual neglect

The man whose brain ignores one half of his world

Alan Burgess doesn’t need a rhyme to remember the 5th of November. He’ll never forget the day he had his stroke. It left him with a syndrome known as hemispatial neglect and a strange new perspective.

I asked him how he explains this to other people. “I say it’s two different worlds,” says Burgess. “My old world finished on 5 November 2007 and the new world started the same day.”

His stroke damaged the parietal lobe on the right side of his brain, the part that deals with the higher processing of attention. The damage causes him to ignore people, sounds, and objects on his left.

“Hemispatial neglect typically occurs after a stroke,” says Dr Paresh Malhotra, senior lecturer in neurology at Imperial College London. “It is not blindness in one eye, and it’s not damage to the primary sensory cortex, it’s a process of ignoring, for want of a better word, one side of space.”

Burgess, 64, originally trained as a tool design draughtsman and, before his stroke, he was working as a driver. His visual neglect makes driving impossible, and he was forced into early retirement. He had never painted before his stroke, but it became an important outlet for him afterwards.

Look at his artwork, though, and it is not only the vivid colours that grab your attention. He hands me a sketch of a pig that has half its head missing, and then produces two robins copied from a Christmas card – the robin on the right is full of rich detail, but the one on the left remains unfinished.

“Vision is most strikingly affected because we are visual creatures, but hearing, touch, representation and sense of self are also affected,” says Dr Malhotra.

People with hemispatial neglect are often unaware of their condition. Friends or relatives might suggest they look to their neglected side but that instruction misunderstands the problem they have with navigating the space around them. Burgess, and people like him, are not aware that something is missing, so why would they seek it out?

Patients might bump into things on their neglected side, shave or apply makeup only on one side of their face, or leave half of the food on their plate.

Alan often has to stop and think to make sense of the world around him. Walking down a street, he hugs the right side of the pavement, brushing up against walls and hedges. He won’t notice any potential dangers coming from the left, so he cannot go out on his own.

“I can’t describe how the world looks to neglect patients,” says Dr Malhotra. “Part of the reason it’s so difficult is because we don’t really appreciate how the world looks to ourselves. We think it’s just a nice screen and you can see everything, but that’s something that your brain is computing and telling you you’re seeing.

“In fact you’re attending to specific things at specific times. Your eyes are darting all over the place, but you have a sensation of a static world.”

After his stroke, Burgess was assessed by Dr Malhotra, who tested the severity of his condition by asking him to mark the centre of a 25cm line on a piece of paper. During his first meetings, Burgess marked approximately 2cm from the right edge – he simply did not attend to the left side of the line. Nowadays, after regular practice, his mark is more accurate, approximately 10cm from the right.

“It’s in the middle of my line, not the middle of your line,” Burgess told Dr Malhotra during one consultation.

Dr Malhotra says that people with visual neglect do realise something is wrong when it is pointed out to them over and over and over again. “So in a way I think for them it’s slightly abstract that they know there’s some problem on the left hand side, and they use strategies to try and overcome the problem, without really being able to appreciate it in its fullness.”

His most recent work has looked at how patients might reduce this bias to the right. Previous research suggests that people with normal vision perform better at visual attention tasks when they are rewarded for good performanceand Dr Malhotra and his team have found the same thing in neglect patients.

In the experiment, he asked patients to circle images of coins and buttons on a piece of paper covered with lots of other similar symbols. On their first visit, patients performed equally badly with coins or buttons. When they returned for a second test, they were told they would get a pound for each coin they circled.

Their performance subsequently improved on the coins test, but not on the buttons test – where they were told there was no reward – suggesting that motivation could be used in the rehabilitation of stroke patients.

Burgess is going from strength to strength in his rehabilitation. As I shook his hand to leave I remarked on his muscular grip. This somehow ended up with our having an arm wrestle. He is 37 years older than me, and yet he won hands down.

Culture: Diverse diagnostics

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autism, culture

Culture: Diverse diagnostics

In rural South Africa, young children may look at adults’ faces while having a conversation, but they don’t usually make direct eye contact because it is considered disrespectful. Yet a lack of eye contact is a hallmark of social deficits in people with autism, and as such it is something Western clinicians look for when diagnosing the disorder.

There are other examples of children’s behaviour — such as finger pointing to draw attention to something, or conversing with adults as if they are peers — that are commonplace in the West and included in tests of autism.

“Most autism research originates in the West, and we have a particular view of what autism is, a particular view about how children behave and interact with adults,” says Courtenay Norbury at Royal Holloway, University of London, who worked with children with autism from ethnically diverse backgrounds in east London¹. “Other cultures might have very different expectations of how children behave.”This viewpoint makes it challenging to use behavioural diagnostic tests for autism in places where the disorder may look — and even be — different from in the West. But with growing interest in autism’s true prevalence worldwide and the need for autism services in poor countries, researchers are grappling with the best ways to objectively diagnose the disorder.Parent support groups for autism exist in more than 100 countries. “We know that autism is diagnosable and observable across cultures,” says Mayada Elsabbagh, a researcher at McGill University in Montreal, Canada, who is leading a group within the International Society for Autism Research on cross-cultural issues. “But the exact details of how different cultures or settings modify autism is unknown,” she says.

For many years, the relevance of culture to autism was ignored. Some researchers believed that autism was intrinsically linked to modernity and Westernization, and was rare in other cultures. Others assumed that because autism is a neurobiological disorder, its expression should be the same everywhere².

But many researchers are beginning to take a subtler point of view. “While autism itself, the neuropathology of it, may not be culturally determined, our interpretation of those behaviours and our response to those behaviours is,” says David Mandell, associate director of the Center for Autism Research at the Children’s Hospital of Philadelphia in Pennsylvania.

Diagnostic differences

Before they can assess autism worldwide, researchers must measure how often various behaviours occur in different cultures and establish the norm, says Charles Zaroff, a psychology researcher at the University of Macau in China. They will also need to work with parents of children with autism to identify how it might manifest in a given culture.

In many Asian cultures, for example, children are expected to express respect for their elders through their language and behaviour, but these aspects of social interaction can be tricky for children with autism to master. Such difficulties would hardly be noticed in much of the West. “Lacking that deference would appear completely appropriate in the United States, but that lack of attention to the strata in society based on age would appear very abnormal in places like China,” Zaroff says.

Because the most widely used screening tests for autism were developed in the United States and the United Kingdom, researchers are finding that they have to adapt the tests to identify autism in other countries. For example, part of the Autism Diagnostic Observation Schedule (ADOS), one of the gold-standard diagnostic instruments for the disorder, involves observing a child having a pretend birthday party — singing ‘Happy Birthday’, cutting and distributing slices of cake, and so on. But in rural areas of South Africa, birthdays often aren’t celebrated, so even typically developing children might be unfamiliar with this ritual.

So, for a study of early autism diagnosis in KwaZulu-Natal province, researchers developed an alternative scenario of shared excitement, involving a traditional African song. “It’s finding the intention of what you’re trying to elicit, and then finding an alternative,” says Amy Wetherby, director of the Autism Institute in the College of Medicine at Florida State University in Tallahassee, who led the work.

Wetherby developed a list of 22 early signs of autism based on studies of several hundred children in Florida. Unpublished data from 19 children show that many of the same red flags differentiate children with autism from their typically developing peers in South Africa as well, says Wetherby.

“The amazing part to me is the unusual gestures,” says Wetherby. For example, rather than pointing or looking together at an object, children with autism in the United States may communicate by taking an adult’s hand and moving it to the object. “That’s an early sign of autism, and we see that [in South Africa] as well.”

One reason the patterns of autism symptoms appear to be similar across cultures may be that the participants in this study are only 18–36 months of age. “The earlier we go,” Wetherby says, “the more similarities we will see.”

More culturally specific or environmentalsymptoms of autism may emerge as children grow up. For example, according to one recent study, 5–12-year-olds with autism in the United States are more sensitive to sights and sounds than are children with autism in Israel — although the authors note that genetic, cultural and environmental factors might be an influence, as well as the parents’ reporting of their child’s behaviour³.

Subtle speech

If cultural differences emerge later in childhood, this could further complicate the diagnosis of autism. The disorder tends to be diagnosed later outside the United States and Western Europe, in part because of a lack of awareness of both developmental norms and autism. A parent who notices that a child is withdrawn or has a language delay may not recognize that as a symptom of autism.

In-depth interviews in Goa, India, show that the parents there aren’t attuned to early social and communication milestones, and they usually become alarmed only when a child starts preschool and has trouble connecting with peers⁴. “What really concerns the parents initially is, ‘he’s not fitting in with everybody else’,” says Gauri Divan, a paediatrician working with the child health organization Sangath in Goa.

In some cultures, parents may notice symptoms that are not typically associated with autism. Among Latino migrant workers in Florida, for example, “the first complaint seems to be that the child is a picky eater,” says Roy Richard Grinker, a George Washington University anthropologist in Washington DC, who is collaborating with Wetherby on a study of autism in this community. “But then, if you go into more detail, you start to see that these children the mothers are describing are probably going to fall on the autism spectrum.” Grinker speculates that these mothers are particularly aware of eating habits because they are poor and food is scarce.

Some evidence suggests that doctors need to be trained to spot the signs of autism from oblique comments made by parents. For example, Mandell says, white parents in the United States often emphasize a child’s lack of communication by saying, ‘my child doesn’t respond when I call his name’, while black parents tend to use phrases like ‘my child won’t mind me’. Doctors may be less apt to consider a diagnosis of autism when they think a parent is describing a disobedient child rather than a socially impaired one — possibly helping to explain why autism is diagnosed less frequently among black children.

Raising rates

If parents in different cultures developed the same sense of autism awareness as in the West, research suggests, autism prevalence around the world might look no different to — or may be even higher than — in the United States or the United Kingdom.

Perhaps the most dramatic demonstration of this is a study of more than 55,000 children in South Korea, which estimated autism prevalence at 2.64% (ref. 5). That’s more than twice the autism prevalence in the United States estimated by the US Centers of Disease Control and Prevention, and more than 50 times higher than the South Korean government’s figure for autism prevalence of 0.046% (ref. 6). One reason for that higher estimate may be that the researchers screened children in the general population for autism symptoms, rather than recruiting them only from clinics for autism and other developmental disorders.

In South Korea, researchers suggest that one reason for the underdiagnosis in autism may be that the stigma attached to the disorder is particularly strong in that country⁷. The diagnosis of a Korean child with autism diminishes the marriage prospects of siblings, and it can even affect his or her parents’ careers. Parents often prefer that their child be labelled as having ‘reactive attachment disorder’, or ‘lack of love’ as it’s known in Korean, a diagnosis that affects the mother’s reputation.

Still, about two-thirds of the children the South Korean study identified as having autism attended mainstream schools and were not receiving any autism-related services. This widespread mainstreaming raises the question of whether a Western-defined autism diagnosis is meaningful if children are able to function reasonably well in their cultural context. “That’s an interesting issue,” says Norbury, who questions “whether we should be worried about these kids, and whether we should be making families worried about them, if there wasn’t any kind of worry before.”

Other children identified in the study may be what Koreans would call a ‘border child,’ a new term that is emerging to describe some who would probably be diagnosed with autism in the West⁷. “This is a child who is high-functioning enough to be in a mainstream school, but who has significant social impairment,” Grinker says. Parents prefer this label, he says, because it implies that the child is only impaired socially, not intellectually, and that the condition is temporary.

In stigmatizing autism, South Korea is not unique. But Elsabbagh points out that attitudes towards a disorder often change as more resources and services become available. That, she says, is one powerful argument for more cross-cultural research on autism.

Another is that it will advance understanding of the biology of autism. “We’ve constrained our participant pools to those of European ancestry, and we have also not considered very thoroughly some of the cultural determinants that may shape autism in different ways,” says Elsabbagh. “Taking a more global perspective would allow us to see that underlying commonality much more easily.”

References

1. Norbury, C. F. & Sparks, A. Dev. Psychol. (published online 5 March 2012).
2. Daley, T. C. Trans. Psychiatry 39, 531–550 (2002)
3. Caron, K. G. et al. Am. J. Occup. Ther. 66, e77–e80 (2012)
4. Divan, G. et al. Autism Res. 5, 190–200 (2012).
5. Kim, Y. S. et al. Am. J. Psychiatry 168, 904–912 (2011).
6. Kang-Yi, C. D. et al. J. Autism Dev. Disord, (published online 22 June 2012)
7. Grinker, R. et al. Autism Res. 5, 201–210 (2012)

The Hazards of Growing Up Painlessly

Tags

awareness, congenital insensitivity to pain, emotional pain, mutilation, pain, pain insensitivity, physical pain, smell, stress, sweat, temperature

The Hazards of Growing Up Painlessly

The girl who feels no pain was in the kitchen, stirring ramen noodles, when the spoon slipped from her hand and dropped into the pot of boiling water. It was a school night; the TV was on in the living room, and her mother was folding clothes on the couch. Without thinking, Ashlyn Blocker reached her right hand in to retrieve the spoon, then took her hand out of the water and stood looking at it under the oven light. She walked a few steps to the sink and ran cold water over all her faded white scars, then called to her mother, “I just put my fingers in!” Her mother, Tara Blocker, dropped the clothes and rushed to her daughter’s side. “Oh, my lord!” she said — after 13 years, that same old fear — and then she got some ice and gently pressed it against her daughter’s hand, relieved that the burn wasn’t worse.

“I showed her how to get another utensil and fish the spoon out,” Tara said with a weary laugh when she recounted the story to me two months later. “Another thing,” she said, “she’s starting to use flat irons for her hair, and those things get superhot.”

Tara was sitting on the couch in a T-shirt printed with the words “Camp Painless But Hopeful.” Ashlyn was curled on the living-room carpet crocheting a purse from one of the skeins of yarn she keeps piled in her room. Her 10-year-old sister, Tristen, was in the leather recliner, asleep on top of their father, John Blocker, who stretched out there after work and was slowly falling asleep, too. The house smelled of the homemade macaroni and cheese they were going to have for dinner. A South Georgia rainstorm drummed the gutters, and lightning illuminated the batting cage and the pool in the backyard.

Without lifting her eyes from the crochet hooks in her hands, Ashlyn spoke up to add one detail to her mother’s story. “I was just thinking, What did I just do?” she said.

Over six days with the Blockers, I watched Ashlyn behave like any 13-year-old girl, brushing her hair, dancing around and jumping on her bed. I also saw her run without regard for her body through the house as her parents pleaded with her to stop. And she played an intense game of air hockey with her sister, slamming the puck on the table as hard and fast as she could. When she made an egg sandwich on the skillet, she pressed her hands onto the bread as Tara had taught her, to make sure it was cool before she put it into her mouth. She can feel warmth and coolness, but not the more extreme temperatures that would cause anyone else to recoil in pain.

Tara and John weren’t completely comfortable leaving Ashlyn alone in the kitchen, but it was something they felt they had to do, a concession to her growing independence. They made a point of telling stories about how responsible she is, but every one came with a companion anecdote that was painful to hear. There was the time she burned the flesh off the palms of her hands when she was 2. John was using a pressure-washer in the driveway and left its motor running; in the moments that they took their eyes off her, Ashlyn walked over and put her hands on the muffler. When she lifted them up the skin was seared away. There was the one about the fire ants that swarmed her in the backyard, biting her over a hundred times while she looked at them and yelled: “Bugs! Bugs!” There was the time she broke her ankle and ran around on it for two days before her parents realized something was wrong. They told these stories as casually as they talked about Tristen’s softball games or their son Dereck’s golf skills, but it was clear they were still struggling after all these years with how to keep Ashlyn safe.

A couple of nights after telling me the story about putting her hand in the boiling water, Ashlyn sat in the kitchen, playing with the headband that held back her long brown hair. We had all been drawing on napkins and playing checkers and listening to Ashlyn and Tristen sing “Call Me Maybe,” when all of a sudden Tara gasped and lifted the hair away from her daughter’s ears. She was bleeding beneath it. The headband had been cutting into her skin entire time we were sitting there.

Ashlyn wears headbands and flip-flops most days and also prescription glasses with black frames and bracelets that she makes with beads she keeps in an old Vlasic pickle jar. She sells her crocheted purses for $5 to friends at Pierce County Middle School. When she smiles or laughs, you can see her Invisalign braces, which she wears because the metal ones might cut into her tongue and gums without her being aware. She has a medical-identification tag that she clips to a silicone wristband — she has eight in different colors, which she mixes and matches with her wardrobe. On the back of the tag it reads, “Cannot feel pain — sweats minimally.”

At school, she was once asked if she was Superman. Could she feel a punch to the face? Could she walk across burning coals as if she were walking on grass? Would it hurt if she were stabbed in the arm? The answers are no, no, yes, no. She can feel pressure and texture. She can feel a hug and a handshake. She felt her best friend, Katie, paint her toenails. “People don’t get me!” she said one night while we played checkers on her iPod. “Everyone in my class asks me about it, and I say, ‘I can feel pressure, but I can’t feel pain.’ Pain! I cannot feel it! I always have to explain that to them.”

When she was born, she didn’t cry. She barely made a noise, staring out from her swaddling with a blank red face. When she developed terrible diaper rash, so raw that it made Tara wince to even wash her, the pediatrician gave instructions to change her formula and put cream on the rash and keep it dry. “I kept thinking, But she’s not crying,” Tara said. “The doctors dismissed it, but we’re thinking, What’s going on?”

When Ashlyn was 3 months old, the Blockers moved from Northern Virginia to Patterson, Ga., where Tara has family. At 6 months, Ashlyn’s left eye was swollen and bloodshot. The doctor suspected pink eye, but Ashlyn didn’t respond to the treatment, so they went to an ophthalmologist, who found a massive corneal abrasion. “And Ashlyn is just sitting there, happy as can be,” Tara recalled. The ophthalmologist assumed she had no corneal sensation in her eyes, and referred them to the Nemours Children’s Clinic in Jacksonville, Fla. It took a while to get an appointment, and before they made it to Jacksonville, Ashlyn rubbed big red splotches on her nose and almost chewed off part of her tongue with her emerging teeth.

At the clinic, they drew Ashlyn’s blood and took scans of her brain and her spine, but the tests were inconclusive. Over the next 18 months, there were more tests. A nerve biopsy from the back of her leg left stitches that ripped when she was running. When the doctor finally gave his diagnosis, Tara was afraid she would forget the words, so she asked him to write them down. The doctor took out a business card and wrote on the back: “Congenital insensitivity to pain.”

“The doctor told us we were the only ones out there,” Tara said. “That it was so rare. He said to keep an eye on her and that they didn’t know much about it and couldn’t really be of any help. It was kinda like, ‘Good luck!’ ”

At home, Tara typed the words “congenital insensitivity to pain” into a search engine and started reading the results. There weren’t many, and the few there told of mutilations and early death. There was no comforting advice to be found.

“John and I had never heard of this condition,” she said. “It was mind-boggling. It was so frightening.” They received help from the people around them in Patterson, a community of fewer than 700 people. When Ashlyn started school, teachers watched her on the playground; one person was assigned to make sure she was O.K. at all times. The nurse washed her eyes and checked her shoes each time she came in from recess — what she called her “Nascar pit stop” — to make sure there was no sand that might cause another corneal abrasion or scratches on her feet. “It really sharpened our observation skills,” Tara said. “I learned to see something happen before it happened.”

The Blockers got rid of all their furniture with sharp corners. They lay down the softest carpet they could find. They didn’t let Ashlyn roller-skate. They didn’t let her ride a bicycle. They wrapped her arms in layers of gauze to keep her from rubbing them raw. They used a baby monitor in her bedroom to listen for grinding teeth. When they still couldn’t sleep, they brought her into their bed, and Tara held her hands over Ashlyn’s, cupping them so she wouldn’t chew on her skin or rub her eyes during the night.

When Ashlyn was 5, the Blockers decided the only way they were ever going to find another person in the world like her was to send up a flare. They contacted their local newspaper, The Blackshear Times, which ran an article about Ashlyn in October 2004. The Associated Press picked it up, and Tara remembers Ashlyn’s picture next to George Bush’s and John Kerry’s on the MSN home page. Ashlyn’s grandmother in Virginia saw it while she was at work and called Tara in Georgia. “Do you know Ashlyn’s on the Web?” she asked. “ ‘The Girl Who Feels No Pain!’ Turn on your computer!” By that time, of course, the Blockers knew. “Good Morning America” had already called.

The Blockers were flown to New York City and appeared on “G.M.A.” — and on the “Today Show” and “Inside Edition.” They told and retold the stories about Ashlyn’s injuring herself. When they flew back to Jacksonville, people recognized them in the airport. They were interviewed by a French news crew and by the BBC. A Japanese film crew brought bamboo chopsticks as a gift. They were called by Oprah but never made it on. They said yes to Geraldo Rivera and no to Maury Povich. Ashlyn was in the Jan. 24, 2005, issue of People, the famous one with Brad Pitt and Jennifer Aniston on the cover, under the giant yellow headline “Brad & Jen: Why They Split.”

All the media attention finally put the family in touch with scientists who could help them understand her condition. Dr. Roland Staud, a professor of medicine and rheumatologist at the University of Florida, heard about Ashlyn and invited the Blockers to Gainesville, where for 15 years he has been conducting research into chronic pain. The implications of her condition were profound. She was an anomaly of nature. Over the next few years, Staud tested Ashlyn’s genetic material and eventually found two mutations in her SCN9A gene. That same gene, mutated in a different way, led to severe pain and chronic pain syndromes. If he could understand how the mutation worked in Ashlyn, Staud theorized, he might be able to turn it off in people with chronic pain.

The connection between the gene and pain insensitivity was discovered in 2006 by a geneticist in Cambridge, England, named Geoffrey Woods. “I used to work in Yorkshire, where lots of Pakistanis had emigrated” and where there were a number of marriages between first and second cousins, Woods told me when we spoke this fall. “I’d see an awful lot of children with genetic diseases.” An obstetrician who had come to England for training persuaded Woods to do some research in Pakistan. On one of his trips, he was asked to see a boy in Lahore who, they said, didn’t feel pain. “I agreed to see him and went out,” Woods said. The boy’s mother and father greeted him but told him the boy had died.

“For his birthday, he’d wanted to do something for his friends — he’d wanted to jump off the first-floor roof of his house,” Woods told me. “And he did. And he got up and said he was fine and died a day later because of hemorrhage. I realized that pain had a different meaning than I had thought. He didn’t have pain behavior to restrain him. When I came back to the U.K., I found three more families with kids in the same condition — with multiple injuries, biting lip, biting tongue, biting hands, fractures, scars. And in several cases, parents almost had their children removed because of suspected child abuse.”

Woods and his colleagues began their search for the genes that caused this disorder, eventually zeroing in on SCN9A. Pain-sensing nerves along the body’s surface normally fire more frequently when we touch something hot or sharp, sending electrical signals to the brain, causing us to react. These electrical signals are generated by molecular channels produced by the SCN9A gene, says Stephen G. Waxman, a professor of neurology at Yale University School of Medicine. Ashlyn’s mutation prevents the gene from making the channel, and the electrical impulses are never produced.

“It is an extraordinary disorder,” Woods said. “Boys die at a younger age because of more risky behavior. It’s quite interesting, because it makes you realize pain is there for a number of reasons, and one of them is to use your body correctly without damaging it and modulating what you do.”

When I visited Roland Staud’s office in September, he seemed reluctant to talk at first. As I described my week with Ashlyn, however, he began to soften, and eventually he spoke about her as if she were his own child. There was a picture of her on his bulletin board behind his desk. He had seen her throw paper airplanes in the clinic hallway after long days of testing, and he posed for pictures every year with the family. He had watched her grow up. “Her life story offers an amazing snapshot of how complicated a life can get without the guidance of pain,” Staud said. “Pain is a gift, and she doesn’t have it.”

When Ashlyn was 9, Staud asked John and Tara’s permission to conduct a series of physical tests to determine what range of sensation Ashlyn possessed. She could feel tickles and pressure and distinguish a soft touch from a pinprick, but she couldn’t perceive extremes of temperature. He also gave her a range of psychological tests to determine if she could feel emotional pain and empathy, and he found her to be a bright and friendly child.

Staud wondered what Ashlyn would be like as she became an older teenager, if she would begin to disobey her parents and what the implications might be for her health. “We know very little about this in the long term,” he said. “How will she be emotionally? How will she evolve?” We sometimes experience emotional pain physically — Staud used the tried-and-true example of heartbreak, how the end of a romance can cause a physical pain — and he wondered if the relationship between the body and emotions also goes the other way; if a person lacks the ability to feel physical pain, is her emotional development somehow stunted? “It’s completely possible that some pain fibers work in her,” Staud said of Ashlyn. “That’s one of the reasons we follow her. She is going into a hormonal change now. Puberty. Estrogen receptors are associated with pain processing. Will she have fear? She is only threatened by emotional consequences. She is an easygoing girl, and she has parents who have learned how to influence her without additional means of physical contact.” He paused and then added, “I don’t think she cries very much.”

Ashlyn does cry. She cried when her dog ran away earlier this year, curling up with her mom and dad in their bed. “She can feel empathy,” Tara told me. “She does. I don’t know if they found that in their research. But I know she does, in my heart.”

A hard rain turned the red-dirt driveway in front of the Blockers’ house into a lake on one of the nights I spent there. John came in from work soaking wet and took a Mountain Dew out of the fridge. He works for the Alma phone company, and frequently drives his truck up and down Highway 84, past Georgia Bulldogs flags hanging from the porches and the two signs that promote Patterson as “One of America’s top 50 towns for raising kids.” Around town, he is known as the Phone Man, and it isn’t out of the ordinary for a customer to call the Blocker house at odd hours, rather than contacting the phone company, and ask John to come see about a problem.

“Something happened to me the other day,” he said, after he dried himself off. “I was at the school, and a guy was like: ‘Let me ask you something. Now, this might be grotesque, I just have to use it as an example. You mean to tell me if she was, like, to get her hand chopped off. . . .’ ”

“Oh, my gah,” Tara blurted.

“And I was like, Wow,” John continued. “And he’s like, ‘O.K., you mean to tell me she would not feel that?’ And I was like, ‘She would see it and be scared.’ And he was like, ‘Yeah, yeah, but she wouldn’t be hurt by it?’ And I was like, ‘No.’ And he was like, ‘That’s mind-boggling to me!’ ”

Ashlyn, who had her head buried in her palms, looked up laughing from the kitchen table and said, “Why would I cut my hand off?”

John and Tara had seen her say, “Ow!” when someone else was hurt. And Ashlyn yelped when her father described the time he put a nail straight through his thumb while he was building a chicken coop, but she had no idea why his face got red and his voice got loud and he held his thumb in the air. She said that over the years she studied the expressions other people made and learned to cringe when someone described something painful.

“Girl, what goes through your mind when you see someone hurt?” John asked her.

“I feel bad for them,” she said. “Because they go through the pain and I don’t. I would help them.”

“Define pain for you,” John said. “What does it mean for you?”

“I don’t know.”

“When you see someone else in pain, what do you associate?”

“That must really hurt.”

“What is hurt?”

Ashlyn squinted her eyes, as if in deep thought. She couldn’t answer him.

One Saturday morning last year Ashlyn awoke past noon — she likes sleeping late — and walked into the living room and announced to her mother, “I had a dream.” Tara expected her to start telling some fantastical story, but instead Ashlyn said, “In the dream we started a camp for kids like me.” She said there was a lake in the dream and boats, and she had a vivid image of children who otherwise don’t know anyone like them running around together.

Which is how Camp Painless But Hopeful got started. Tara called a place called Camp Twin Lakes in Winder, Ga., four hours from Patterson, and asked about holding a weekend retreat there for kids who feel no pain. The staff agreed. Tara would coordinate and pay for the cabins, insurance and food, and the staff would take care of the cooking.

The Blockers made T-shirts and put stickers on their cars. A local radio station gave them a free ad to promote a fund-raising barbecue in the parking lot of the Blackshear Rite-Aid. Ashlyn sold some of her purses and jewelry to her friends. Tara advertised the camp on a private Facebook page called “A Gift of Pain,” a support group for families affected by insensitivity to pain: “Would anyone be interested in attending a camp for families like ours?” Eight families signed up.

The camp was held in early November, when the weather was starting to cool in Georgia and the temperatures were more agreeable for children who don’t sweat much. Researchers have identified three genes that are associated with congenital insensitivity to pain and suspect there are other genes that have not been found. Some of the children who came to the camp had a mutation on a gene, NTRK1, that is involved in the development and maturation of the nervous system and that is characterized by self-mutilating behavior, fevers, mental retardation along with insensitivity to pain. Roberto Salazar, an 11-year-old from Indianapolis who came to the camp with his mother, has this mutation, and in his short life he has bitten off part of his tongue, pulled out his teeth and crushed his ankles with his own weight. Once he jumped down an entire flight of stairs. For most of the year, he was confined inside an air-conditioned home, because he doesn’t sweat at all, and his body temperature could rise quickly and dangerously. Roberto’s mother, Susan, had seen Ashlyn’s name in an article a few years before and reached out to Tara; since then, they have stayed in touch, sharing stories about their children. When he showed up at camp, Roberto was getting around on a motorized scooter. He gave the other children rides for fun.

The Brown family from Mapleton, Iowa, drove to the camp with nine people in one van, including a 3-year-old boy named Isaac. When Isaac was small, he stuck his whole hand into his mother’s mug of hot coffee and didn’t cry. Then he put his hand on a hot stove burner and received third-degree burns and still did not cry. His parents took him to a neurologist who recommended genetic testing, which the family could not afford. After Isaac took toenail clippers and ripped out his eyelashes, his mother, Carrie, told her husband, “I can’t take this anymore.” In 2010, they took him to the Mayo Clinic in Rochester, Minn. The doctors there told Carrie that they believed her son had congenital insensitivity to pain, but they needed to find the particular gene that was mutated. They enrolled Isaac in a study and started the long process of looking for an explanation, which Carrie says they have not yet found.

Carrie Brown found Tara online, and the idea of actually hanging out with other parents who shared these terrifying experiences with unintentionally self-destructive children was too amazing to pass up. The Browns have seven children and live off Carrie’s husband’s income as a registered nurse. But they vowed to get to Georgia, even if it meant not paying other bills. A gift of $400 from their church helped finance the road trip. They drove 18 hours, stopping for the night at a Motel 6 in Chattanooga, Tenn., where they tried unsuccessfully to persuade the desk clerk to let all nine of them stay in the same room.

The Browns were the first ones to arrive at the camp. When the Blockers pulled up, Tara got out of the car and rushed to hug Carrie, who was standing outside her van. They both wept.

“It was just . . . I don’t know how to explain it,” Carrie said. “I felt like I was finally meeting another mom who got me, who wouldn’t judge me for being overprotective, because she knows how important it is. She understood.”

The first night at camp, Ashlyn made s’mores and went on a hayride with the other children. She watched a puppet show. She rode the zip line. She danced. She especially gravitated to the little girls. She held them and gently rubbed their backs. She helped them decorate steppingstones with jewels and beads, little concrete slabs that will always be on the grounds, as part of the camp’s legacy project. “It was just awesome to meet people just like me,” Ashlyn said.

Karen Cann’s life had been full of wonder and pain, even if she had never been able to feel any. When she and her sister, Ruth were children in Scotland, no one could explain what was wrong with them. Like the Blockers, their parents lived in fear of their daughters’ inflicting harm on themselves, but rather than seek out people like them, the girls tried to blend in. “We didn’t want to be considered freaks,” Cann, who is 35, told me, and then she added, “I mean, we are freaks.” Neither Karen nor her sister can sweat very much, and neither has the ability to smell. (Ashlyn’s parents discovered she too couldn’t smell when she started spraying herself immoderately with perfume; it turned out she liked the way the mist felt.) Growing up, they always had burns and scars and limbs in casts, and their mother faced the suspicious questioning of doctors.

“We didn’t even know what we had, what to call it,” Cann said. It wasn’t until she was in her 20s that Cann began to search for answers in earnest. “I thought, I’m going to start e-mailing doctors up and down this country and try and find an answer. Me and my sister Ruth went to see a doctor in the Liverpool pain institute. And I sent a letter to Addenbrooke’s Hospital. They passed the letter to Dr. Woods.”

Karen Cann was 29 when Woods first met with the sisters. “We just exploded with everything that happened to us,” she said of that first meeting. “It was almost like a counseling session. Poor Dr. Woods!” They wanted to know if they really couldn’t smell. Growing up, they weren’t sure if they could smell or not because they could taste. He blindfolded them and put oranges and coffee under their noses. Nothing. He drew their blood and soon confirmed that they both had mutations on their SCN9A gene.

“People regard you as hysterical, or strange, when you tell them you can’t feel pain,” Woods told me. “It might not be something you want people to know about. We find families are careful who they tell their diagnoses to. We’ve found there is a grouping of pain families, and they keep secret.” Because of this, Woods suspects the condition is less rare than has been recognized. “I think it’s more common than one in a billion,” he said, “or even a million. The adults with the disorder often go unnoticed because they don’t share it.”

Tara met Cann online in 2009 and sent an e-mail telling her how happy she was to have found someone to talk to, someone who could be a guide for Ashlyn. Tara also wanted to know more. What had Cann’s life been like? Could she feel hot and cold? Did she sweat? Tara knew that Cann had a husband and a child. What was it like to be a mother who couldn’t feel pain?

“I sent her quite a lengthy e-mail back, as I wanted to reassure her that the condition hadn’t held my sister and I back in life,” Cann said. “I knew Ashlyn was quite young, and I knew it would be a worrying time for Tara.”

When Cann was Ashlyn’s age, she started puberty and was interested in boys, but she remembers being embarrassed about her scars and hiding her legs with long dresses. She felt intensely self-conscious about her condition. She remembers holding other girls’ hands, and feeling how soft and dainty they were, comparing them with her own, which were rough and scarred. But it had gotten easier, she told Tara, and she and Ruth both made it through school and received university degrees. They each had loving partners and great friends and full-time jobs. When she made love with her husband, she could feel pleasure, or at least she thought she could. “Intimacy is enjoyable,” she told me. “I probably don’t feel it the same, but it feels good.” She had learned to live with her condition, she said, and had become aware of things that could hurt her — a process that took most of her life — but that growing awareness has allowed her to get on with the business of being an adult.

Cann had her first child at 31 through an emergency C-section. The child was a healthy baby girl, but in the aftermath, Cann felt a sensation she could only describe as a stiffness down her right side. She went home and walked around on it for weeks, the stiffness becoming more intense — though not painful — until eventually she could hear a clicking inside her body and it became difficult to walk. When she went to her doctors and explained that she couldn’t feel any pain but that she knew something was wrong, and would they please take an X-ray, they said she was probably experiencing postpartum depression and should seek treatment. She persisted, and eventually it was revealed that she had shattered her pelvis during childbirth and was bleeding internally. For the next six months she stayed in the hospital unable to walk.

Because of the way her pelvis healed, Cann’s left leg is now shorter than her right, and she wears an elevated shoe to correct it. Beyond that, though, there were no lasting effects, and in 2011 Cann had a second child, a son, again by a C-section. This time she was X-rayed immediately after the birth and suffered no damage.

Tara still corresponds with Cann. “She gave me an insight into what we could expect from Ashlyn down the road,” Tara said. “Anything comes up that I’m not sure about, I know I have a lifeline to see if she has experienced it.”

Before Cann met Tara and heard about Ashlyn, she didn’t like telling people about her condition. “She has inspired me,” Cann said. “My sister and I have viewed the condition in a negative way, obviously due to the physical damage the condition has caused, and the emotional pain and stress it’s brought for our family. I now, however, have decided it’s time to try and get something positive from it. I want to spread awareness. It’s also inspired me even more to push doctors to use me as a guinea pig to find out more about pain and the drugs that could be created from mimicking my condition.”

For all the reassurances over Facebook, the photos they swap and the feeling that Cann and Ashlyn are linked by their experience, Cann has never met the Blockers or talked to them on the phone. When I asked her why, she said, “I think I would have done so by now, if it wasn’t for what I went through a few years ago.” She meant the despair she felt after breaking her pelvis, the realization that not being able to know her own pain meant not just that she might endanger herself but that she might not be able to care for her child. “I’m still quite emotionally fragile, and I wouldn’t want to get upset on the phone and frighten Tara about Ashlyn’s future,” she went on. “Not that the same thing will happen to her. But parents worry, don’t they?”

Sometimes it seemed as if the entire town of Patterson were a network of external pain receptors, feeling for the hazards that might injure the girl who feels no pain. “One time she cut her foot,” said Michael Carter, her band teacher at Pierce County Middle School. “I don’t know if it was the stand that came down on her, but there was blood on her foot.” You could sense when talking to many of the people around Patterson that Ashlyn was a strange and special presence in their lives, that they were proud of her and worried for her. “Middle school can be traumatic for some kids,” Carter said, “but I think she’s kind of tackled this thing. She says, ‘This is who I am.’ She’ll tell you about it. She loves to hug — she’s a joyful person.”

Her art teacher, Jane Callahan, talked about her imagination, how she sees things a little differently than the other children around her. She has a good eye for detail. Her homeroom teacher, Corey Lesseig, explained how important it was that she lived in a place like Patterson, where everyone knew her and understood her, and she could be comfortable being herself. “You wonder as she gets older, how all that’s going to be,” he said.

Watching her heave her backpack onto her back and walk down the halls, watching her at a weeknight football game or painting in art class or playing her clarinet in band, I found it hard to think of her as one of a handful of people in the world whose body might contain secrets that could unlock the mystery of pain itself. As Staud said when I met with him in Gainesville, they had only scratched the surface of what they could learn from Ashlyn. She would most likely be tested for years to come, and she and her family had reconciled themselves to that, to the tests and also to the realization that, like Karen Cann, she could never totally protect herself. With each day she became that much more aware of the world, that much more cognizant of what she had to look out for and anticipate. Most things became easier, and the possibilities for her life became greater. But it’s not possible to imagine all the threats in advance, so she has to enlist everyone around her to help her watch out for the present.

“She’s our normal,” her mother said. “People are like, ‘I don’t know how y’all do it, don’t you have to protect her?’ And we’re like, ‘I dunno, come on over to the house and tell me if we do anything different.’ ”

Thousands of children sexually exploited each year, inquiry says

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abortion, abuse, alcohol, child sexual exploitation, Children, control, crime, drugs, gangs, humiliation, mental health issues, miscarriage, perpetrators, power, pregnancy, punish, rape, sexual assault, smartphones, social networks, STDs, support, threaten

Thousands of children sexually exploited each year, inquiry says

Thousands of children are raped and abused each year, with many more cases going unreported by victims and unrecorded by the authorities, according to an official study presented as the most comprehensive inquiry to date of the scale and prevalence of child sexual exploitation in England.

The disturbing and at times horrific study, which describes a range of traumatic and violent sexual crimes perpetrated mainly against girls, by male teenage gang members and groups of older men, was described as a “wake-up call” for safeguarding professionals by the Office of the Children’s Commissioner for England (OCCE).

It draws an alarming picture of serious sexual crimes against children: girls groomed, then drugged and raped at seedy “parties” in private homes and warehouses organised by groups of men, for profit or pleasure; assaults in public parks, schools and alleyways by gang members influenced by violent pornography, and intent on threatening, punishing or controlling young women by means of forced oral sex, and anal and vaginal rape.

The report says that victims commonly suffer serious physical and emotional harm as a result of their experiences, including severe mental illness, and drug and alcohol problems. Some victims contract sexually transmitted diseases, become pregnant, have terminations or suffer miscarriages.

“The reality is that each year thousands of children in England are raped and abused by people seeking to humiliate, violate and control them. The impact on their lives is devastating,” said the inquiry chair, deputy children’s commissioner Sue Berelowitz.

The inquiry was established in 2011 to investigate what it saw as mounting concern about child sexual exploitation. The inquiry team, comprising academics and senior safeguarding professionals from the police, NHS and charities, collected data and evidence from local authorities, police forces and primary care trusts. It took oral evidence from 68 professionals and 20 sexually exploited children across the country.

It concluded that too often police, local authorities and other safeguarding agencies have failed to spot or act on the warning signs of sexual exploitation, despite what it says is 20 years of evidence that large numbers of children are being sexually exploited in the UK. “Too many child victims are not getting the protection and support they need,” writes Berelowitz in the foreword to the report.

It criticises safeguarding professionals who labelled victims as “promiscuous” or “asking for it”. This “worrying perspective” suggested officials too often assumed that sexually exploited children, many of whom exhibited disruptive or aggressive behaviour, were “complicit in, and responsible for, their own abuse”.

Debbie Jones, president of the Association of Directors of Children’s Services, said: “It is clear that we cannot make assumptions about victims or perpetrators based on their age, ethnicity or whether they are in care. Making such assumptions will risk some children not being identified as being sexually exploited and not receiving the protection that they so desperately need.”

The inquiry’s interim report published by the OCCE says that despite media attention surrounding a number of high-profile court cases involving groups of Pakistani men and white British female victims, sexual exploitation was widespread. There was no evidence that perpetrators belonged disproportionately to a particular ethnic group.

“The vast majority of the perpetrators of this terrible crime are male. They range in age from as young as 14 to old men. They come from all ethnic groups and so do their victims – contrary to what some may wish to believe,” writes Berelowitz.

The study found the largest group of perpetrators were classed as “white” males, but because there were gaps in official data recording, and because many victims found it hard to identify their attackers, it was impossible to estimate accurately who and how many people were sexually exploiting children.

“What all perpetrators have in common – regardless of the differences in age, ethnicity, or social background (information on disability or sexual orientation was rarely available) – was their abuse of power in relation to their victims, and that the vast majority were male,” the report said.

Although it identified 2,409 children and young people as “confirmed victims” of sexual exploitation in gangs or groups over a 14-month period, and estimated that 16,500 children were at “high risk” of sexual exploitation during a 12-month period, the report said this was an undercounting of the true scale of the problem. The report did not consider cases of sexual exploitation by “lone perpetrators”.

Anne Marie Carrie, chief executive of Barnardo’s, which works with 1,000 victims of child sexual exploitation each year, agreed that the figures were undercounted: “We agree with the OCCE that it is likely that the figures of both confirmed victims and those at high risk only show us the tip of the iceberg.

All kinds of children and young people, both male and female and across a range of ethnic backgrounds, were sexually exploited, the report found. Although vulnerable youngsters in care or from dysfunctional families were most at risk, children “from loving and secure homes” were also abused by gangs and groups.

“The characteristics common to all victims are not their age, ethnicity, disability or sexual orientation, rather their powerlessness and vulnerability,” the report states.

The study found that 28% of the victims reported to the inquiry were from black and minority ethnic backgrounds. The report says: “This information is significant, given that the general perception appears to be that sexual exploitation by groups, in particular, is primarily a crime against white children.”

Technology was used widely to initiate, organise and maintain child sexual exploitation. Victims reported being harassed through text messages, and perpetrators would often film and distribute incidents of rape via smartphones and social networking. Younger perpetrators had in many cases been exposed to violent pornography, the inquiry found, and it speculated that this informed abusers’ understanding of sexual relationships.

Berelowitz writes: “We need to ask why so many males, both young and old, think it is acceptable to treat both girls and boys as objects to be used and abused. We need to know why so many adults in positions of responsibility persist in not believing these children when they try to tell someone what they have endured.”

Concerns raised over number of children held in police cells under Mental Health Act

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Children, Mental Health Act, police, police cell, young people

Concerns raised over number of children held in police cells under Mental Health Act

Police officers often face “no realistic option” other than locking children as young as 11 years old in cells under mental health laws, it has emerged.

The 347 such detentions in England and Wales last year (2011) potentially caused paranoia, delusions, extreme “fear and distress” in young people.

The Association of Chief Police Officers (ACPO)  claimed provision for young people in some parts of the country was “patchy”, leading to children being placed in cells for more than 24 hours in some cases.

“It’s quite clear that in some places police officers who are finding vulnerable young people at a point of crisis have no realistic option other than to take them to cells,” said Chief Constable Simon Cole, ACPO’s head of local policing and partnerships.

He added: “I don’t think that anyone looking at that situation would think that that’s the best answer.”

Under the Mental Health Act children suspected of being mentally ill and in “need of care or control” can be taken to a safe place for assessment. But in exceptional circumstances, where psychiatric units or children’s homes are unavailable, they are placed in cells.

The Health Minister, Norman Lamb, described the situation as “completely unacceptable”.

The BBC’s World This Weekend cited examples of one 13-year-old being locked-up for 22 hours and another two teenagers held for 24 hours.

Mental health campaigners said vulnerable and distressed children were being treated like “criminals”.

“Putting them in police cells is really only going to make them worse – it will exacerbate feeling of paranoia, delusions and extreme fear and distress,” said Lucie Russell, of the Young Minds mental health charity.

She added: “It’s a reflection of what’s happening in society in terms of pressure on services that we’re having to resort to this and that the police are having to deal with young people in this way.”

Senior police officers said providing an out-of-hours support service for young people could take “quite some time”.

Government plans for diversion services to access and treat children before they spend time in custody are due by 2014.

Mr Lamb said: “The fact that we can expose this and bring this an end is a good thing.”

‘Catastrophic’ failings in schizophrenia care revealed

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early intervention, physical health, psychosis, schizophrenia, support, treatment

‘Catastrophic’ failings in schizophrenia care revealed

Care for people with schizophrenia and psychosis is falling “catastrophically short”, a report has found.

The Schizophrenia Commission said there were “shameful” standards of care on some acute mental health wards, which could make patients worse rather than better.

The commission, established by the mental health charity Rethink Mental Illness, has called for a radical overhaul of the care system. The report suggests that too much money is being spent on secure care – the most expensive form of care – and more should be invested in prevention and community support.

It expresses concern that early intervention treatment teams are being cut in some areas.

Researchers claim that very few sufferers get the recommended levels of care. The report states that there should be more widespread use of community-based “recovery houses” and a redirection of funding from secure units into early intervention services.

Professor Sir Robin Murray, chair of the commission, said: “We have spent the last year listening to expert professionals and more importantly, the experiences of people who have schizophrenia and psychosis and their families.

“The message that comes through loud and clear is that people are being badly let down by the system in every area of their lives.

“People with psychosis need to be given the hope that it is perfectly possible to live a fulfilling life after diagnosis. We have no doubt that this is achievable.”

Paul Jenkins, chief executive officer of the charity Rethink Mental Illness, added: “It’s been over 100 years since the term schizophrenia was first coined, but care and treatment are still nowhere near good enough.

“It is a scandal that in 2012 people with schizophrenia are dying 15-20 years earlier than the general population and that only 7% are able to get a job. Too many people are falling through the gaps in the system and ending up in prison or homeless.

“Developing ideal treatments might take time, but there are things which can be done today which could transform lives. More money does need to be spent – but the funding that already exists could also be used much more effectively.

“We wouldn’t accept this state of affairs for cancer, why should people with schizophrenia have to endure it?”

Schizophrenia affects more than 220,000 people in England and an estimated one in six people will experience some symptoms of psychosis at some stage in their lives, according to the report.

A Department of Health spokeswoman added: “This report highlights important areas for improvement and shows why we have put better treatment for those with mental health problems at the heart of the new mandate for the NHS.

“This includes plans to hold the NHS to account for improving health and reducing premature deaths in people with serious mental illness.

“We’re setting up pilot sites to improve access to psychological therapies for those who have a severe mental illness including schizophrenia. We are clear that people with mental health problems should be treated with the same high quality and dignified care as anyone else and we expect the NHS to make this happen.”

Andrew McCulloch, chief executive at the Mental Health Foundation, said: “GPs and other health professionals must do more to offer routine health assessments to people with severe mental health problems and address identified needs.

“Some people with severe mental health problems experience a chaotic lifestyle, self-neglect, poor diet and high levels of smoking, all of which significantly increase risk of physical health problems, including cardiovascular disease.

“However, this level of mortality cannot be simply attributed to lifestyle – this could be seen as victim blaming. Social inequality clearly plays a major role.

“The commission’s report points out that about 45% of people who receive a diagnosis of schizophrenia recover after one or more episodes.

“Rates of recovery will only improve when we refocus resources on to the early stages of illness, give people hope, and help them to self-manage their condition better, instead of spending all of our resources downstream.”

Brain-damaged man ‘aware’ of scientists’ questions

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Brain activity, brain damage, brain scans, conscious, fMRI, Memory, thought, treatment, vegetative state

Brain-damaged man ‘aware’ of scientists’ questions

A crash victim thought to have been in a vegetative state for more than a decade has used the power of thought to tell scientists he is not in pain.

Canadian Scott Routley, from London, Ontario, communicated with researchers via a brain scan, proving that he is conscious and aware. It is the first time such a severely brain-damaged patient has been able to provide clinically relevant information to doctors.

British neuroscientist Professor Adrian Owen, who leads the research team at the Brain and Mind Institute of Western Ontario, said: “Scott has been able to show he has a conscious, thinking mind. We have scanned him several times and his pattern of brain activity shows he is clearly choosing to answer our questions. We believe he knows who and where he is.”

Prof Owen was speaking on a BBC Panorama programme to be broadcast on Tuesday night.

He said the breakthrough could lead to improvements in the treatment of severely brain-damaged patients who cannot move or speak.

“Asking a patient something important to them has been our aim for many years,” he told the programme.

“In future we could ask what we could do to improve their quality of life. It could be simple things like the entertainment we provide, or the times of day they are washed and fed.”

Prof Owen’s team uses functional magnetic resonance imaging (fMRI) brain scans to detect hidden awareness in patients and open up channels of communication. The scans produce images of “active” regions of the brain by tracking the flow of oxygen-rich blood. Patients are asked to imagine playing tennis or walking around their home – two thought processes that produce distinct patterns of activity in different parts of the brain.

By monitoring the activity on an fMRI scanner, the researchers can ask yes or no questions. One type of brain activity is taken as a “yes” and the other as a “no”.

Routley suffered traumatic brain injuries when his car was in collision with a police vehicle. Until Prof Owen’s intervention, he was assumed to have been in a vegetative state for more than 12 years.

Vegetative state patients are not aware of their surroundings or capable of conscious thought.

Neurologist Professor Bryan Young, from University Hospital in London, Ontario, who has cared for Routley for 10 years, said the scan results overturned all previous assessments of the injured man’s condition.

“He had the clinical picture of a typical vegetative patient – no emotional response, no fixation or following with his eyes,” said Prof Young. “He didn’t have any spontaneous movements that looked meaningful and I was quite impressed and amazed that he was able to show these cognitive responses with fMRI.”

Prof Owen has previously shown that nearly one in five vegetative patients may in fact be conscious.

Another of his patients, road accident victim Steven Graham, was able to answer “yes” when asked if he knew about his two-year-old niece, Ceili. Since she was born after his car accident, this demonstrated that he was able to create and store memories.

The Panorama team spent more than a year filming several vegetative and minimally conscious patients taking part in pioneering research at the Brain and Mind Institute and Addenbrooke’s Hospital in Cambridge.

The programme, The Mind Reader: Unlocking My Voice, airs on Tuesday night at 10.35pm on BBC1.