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18 Nisan 2017 Salı

The agony of ending a wanted late-term pregnancy: three women speak out

Last year, Donald Trump suggested that current abortion laws allowed doctors to “rip the baby out of the womb of the mother just prior to the birth of the baby”. His statement erroneously described abortion procedures, and also triggered an uproar among the women and men who know firsthand the devastation of ending a late-term pregnancy.


Nearly 99% of abortions occur before 21 weeks, according to the Center for Disease Control and Prevention, but when needed pass that point it is in response to harrowing circumstances.


“Abortions that occur at this stage in pregnancy are often the result of tragic diagnoses and are exactly the scenarios wherein patients need their doctors, and not obstructive politicians,” says Dr Jennifer Conti, clinical assistant professor at Stanford University. “Asking a woman to carry a fatally flawed pregnancy to term is, at the very least, heartbreaking. I’ve often heard women say that they chose to end such pregnancies because of unselfish reasons: they couldn’t bare the thought of putting their fetus through even more pain or suffering.”


Just this year, 400 abortion restrictions were introduced in 41 states, according to the Guttmacher Institute, a research organization that supports abortion rights. Among them, Republicans introduced the first ever federal “heartbeat” bill earlier this year – which would ban abortions after a heartbeat is detected. Meanwhile, Congress is considering a bill that would also ban abortion at 20 weeks nationwide – which is when ultrasounds can offer the first signs of fetus anatomy anomalies.


Here, three different women agreed to share their experiences to end misconceptions about late-term terminations, and to explain to politicians and the general public why they’re necessary in the first place.


Kate Carson, teacher, outside of Boston, Massachusetts


That warm June day, the recovery room was silent. The doctor entered carrying Laurel, a bundle of just five pounds wrapped in a pink-and blue striped cotton blanket. He gently passed her to her mother, Kate. She bent forward to smell her. She touched her skin. Her daughter was warm, but not as warm as she should have been.


“I just needed to know it happened. I needed to know that I had a baby,” Kate Carson says.


At 27, Kate had her life planned out. She and her husband were going to have four kids, and she was going to be an engineering professor. Her first pregnancy went fine, and she had a healthy baby girl. But while pursuing her PhD in engineering, she suffered three miscarriages. “It was a long road,” she says, but at by 29, she was finally expecting another girl, Laurel. She was due in the summer of 2012, and both parents were elated.



Kateholds her baby Laurel’s foot and hand prints that were made by nurses at the clinic.


Kate holds her baby Laurel’s foot and hand prints that were made by nurses at the clinic. Photograph: Kayana Szymczak for the Guardian

At 19 weeks, an ultrasound revealed a shadow of concern but the finding was reversed with full confidence at a level two ultrasound. “I’m not seeing any problems. Everything looks fine,” the specialist told the parents.


But Kate had a nagging worry. “My husband and I did not feel like everything was fine,” she says. She asked the nurse how sure the specialist was. “He would have to be so certain. They would never reverse a diagnosis without being super sure about it,” the nurse replied.


Yet her husband encouraged her to book another second level two ultrasound, a “piece of mind ultrasound”.


Expecting only reassurance, Kate knitted a pink sweater for Laurel while chatting freely with the technician who quickly grew silent. There was a big black spot on Laurel’s brain. “This baby is different,” the technician said. She left the room and returned with a maternal fetal specialist and a specialist in training.


“That’s when they started telling me,” Kate says. The fetus had Dandy-Walker malformation, a set of abnormalities of the cerebellum.


“The problems we didn’t see last time, we are seeing today,” said the specialist. She offered Kate adoption and abortion, “if it was still a legal option”. They used to send women to Kansas for abortions, she told her, but that was before Dr Tiller was shot in the face at a Sunday church service.


Kate asked if children with Dandy-Walker malformation are ever normal. “Yes,” said the specialist.


“And that, honestly, is so hard to hear because you just want something definitive”, Kate recalls. “On the one hand, of course you want your child to be normal. On the other hand, you want to know, is your kid going to be okay, is your kid going to receive a devastating diagnosis?” But the specialist had no definitive answers and recommended an MRI to determine whether Laurel would be okay or “incompatible with life”.


Kate couldn’t get the MRI for the next 48 hours. The wait was excruciating. At home, she could find no peace and substituted knitting her baby’s sweater for sleeping. She curled up on her living room sofa and cried until her husband scooped her up each night and took her to bed.


“When you’re imagining futures beyond the miracle happy ending, it’s sinking in,” she says.


The day of the MRI finally arrived. She was 35 weeks, 0 days. By the end of it, Kate and her husband had the hardest answers they’ve ever received.


Their daughter had moderate to severe Dandy-Walker malformation. But that wasn’t the only diagnosis; Laurel also had a brain condition in which fluid builds up in the ventricles, eventually developing into hydrocephalus and possibly crushing her brain. She had a congenital disorder too, in which there was complete or partial absence of the broad band of nerve fibers joining the two hemispheres of the brain.


What this meant was Laurel was expected to never walk, talk, or swallow. That was if she survived birth.


Kate asked her doctor, “What can a baby like mine do? Sleep all the time?”


“Babies like yours are not generally comfortable enough to sleep,” the neurologist said.


“That is when it became very clear what I wanted to do,” she says. “The MRI really ruled out the possibility of good health for my baby.”



A personal letter of support from Barack Obama. Kate wrote to President Obama after her abortion experience, in an effort to educate politicians about the realities of late-term abortion.


A personal letter of support from Barack Obama. Kate wrote to President Obama after her abortion experience, in an effort to educate politicians about the realities of late-term abortion. Photograph: Kayana Szymczak for the Guardian

For Kate, giving a child life and peace are the two gifts a mother can offer. “Most babies get to have life and get to have peace, but this baby, I had to choose. I could choose life, with the outside chance of peace or occasional peace, or I could choose certain peace without life. And for me, certain peace without life was the choice I wanted to make.”


On their ride home, Kate and her husband were silent as they drove in rush hour traffic across the Zakim Bridge. Unable to say it herself, Kate’s husband uttered the word abortion. “I think we should ask about it,” he said.


“I had been in this dark, awful prison of a place inside myself,” she says. Her husband’s words comforted her.


When they arrived home, Kate immediately called the doctor and left her a message. Her mother arrived to pick up their daughter and before leaving said she would have done the same. An hour later, the phone rang. Kate grabbed it. If they wanted the abortion, they had 30 minutes to call a clinic in Colorado before closing time or wait the weekend. The procedure would last four days. And they would need $ 20,000. Massachusetts doesn’t allow abortion after 24 weeks unless it’s necessary to save the life of the mother.


Kate and her husband live a modest life, certainly not one with $ 20,000 readily available. Kate’s younger brother offered his life savings of $ 5,000, but it was her parents who gave them the money from their retirement fund. “This is exactly why these abortions exists,” said her father.


Three days later, they were driving up to Dr Hern’s Boulder Abortion Clinic, where surveillance cameras and razor wired fences surrounded them. She was 36 weeks.




I felt like the only one in the entire world … but we are not entirely alone. Just hidden


Kate Carson


Inside the clinic, Kate took a blood test followed by exhaustive counseling sessions, then the consent form. Dr Hern wanted to make sure she was doing this of her own free will.


By the end of the day, Kate and her husband knew it was time. Dr Hern took Kate to a room for the injection. It would slow her baby’s heart to a stop as soon as it penetrated. Sometimes, it happens quickly. For Kate, it happened over the course of a couple of hours. Just as she and her husband were planning to grab a bite of food, Laurel kicked. “I lost it,” says Kate. She retreated to her hotel room and lay there until the moving stopped. When Laurel went still, Kate’s stomach sagged low and lifeless, she says. “It was really sad and really hard.”


“I did not ever doubt I was doing the right thing for her but that did not make it easier,” she says. Kate says Laurel got the “tightest hug”. Her body was hugging her.


Next, it was time to get dilated, which was painful for Kate because she couldn’t receive an epidural. On the last day in Colorado, on an early June day, Kate, who was in labor for two and a half hours, delivered Laurel.


In the recovery room, Dr Hern brought Laurel to her. She smelled right, she felt warm, but not as warm as a live baby.


“She was beautiful,” Kate says.


When Kate returned home, they scattered Laurel’s ashes in the ocean. It was time for closure, but Kate worried about judgment so she didn’t tell anyone what happened for months. Then the self-doubt came.


“I feel like myself got fragmented into a million different selves. And I had my angry guard dog piece and my jealous piece, had my sad piece, I had the guilt, the religious piece. All of these pieces, and I had to figure out who I was”.


For some time, Kate wondered about the human error piece in the equation and wondered if her first doctor might have mislead her on purpose. A little research later proved it was just an honest mistake. “I can live in a world where people make mistakes,” she says. “I felt like the only one in the entire world who had had such a later abortion and it is true that we are rare, but we are not entirely alone. Just hidden.”


Since Laurel, Kate gave birth to another healthy daughter.


Kate Carson speaks about her experience to doctors, lawyers, and neighbors. You can also read about her experience here


Lindsey Paradiso, wedding photographer, Virginia



Lindsey and Matt Paradiso, photographed inside their home.


Lindsey and Matt Paradiso, photographed inside their home. Photograph: Justin Ide for the Guardian

The moment Lindsey, 27, found out she was pregnant, she wrapped the positive test strip in a used gold metallic gift bag and surprised her husband, Matt, with it. Two months later, they named her Omara Rose.


This was not the easiest pregnancy for Lindsey. She suffered from sciatica nerve pain and had to undergo daily injections for her blood clotting disorder. But she was over the moon about the pregnancy.


At first, it looked like a bubble floating on the ultrasound. At the routine 18-week visit in February 2016, the doctor speculated the peculiarity could be cystic lymphangioma, a group of cysts found mostly in the neck. Or it could be nothing. They immediately booked an appointment with the University of Virginia (UVA).


After seeing the ultrasound at UVA, Lindsey noticed the growth had enveloped half of Omara’s face and spread around her neck to the back of her head. When the doctor entered, they expected the worst. Again, the term lymphangioma came up. But so did cervical teratoma. Only an MRI could determine decisively, but whether it was malignant or benign, it could be fatal to the baby.


“You could just tell the energy in the room was like you should end it, it’s not going to turn out well,” she says. The doctor told them they could terminate the pregnancy since Omara’s chances of survival were slim. Matt and Lindsey were crushed by the prospect. They wanted to fight.


Twenty days after seeing the first signs of trouble, they learned that Omara had an aggressive form of lymphangioma growing out of her neck. The diagnosis came in the form of a dense two-page MRI report. The fast-growing, inoperable tumor had grown into her brain, heart, and lungs. It had wrapped around her neck, eyes, and deep into her chest. It was so invasive, it was pushing her tongue out of her mouth.


Her chances of living to age of viability or birth were slim. Lindsey and Matt made the heartbreaking decision to follow through with an abortion at around 24 weeks. They were just a few days away from it being an illegal termination.



A shadow box of memories of their daughter, including her hand and foot prints, sits with a teddy bear.


A shadow box of memories of their daughter, including her hand and foot prints, sits with a teddy bear. Photograph: Justin Ide for the Guardian

On 26 February 2016, Omara Rose’s heart stopped beating. Shortly after, Lindsey was admitted into the hospital for labor induction but the epidural stopped working. “I felt like my insides were being ripped apart,” she says. When the doctor administered a second epidural, Lindsey became nauseous. Her ears rang. The room spun. The doctor rushed in to administer a third epidural.


She was conflicted the whole time because while she was in pain, she didn’t want it to stop because she knew by the end of it “your child is going to be dead”, she says. Matt held her hand the whole time.




To hide something because you’re ashamed of it is just going to perpetuate misunderstanding


Lindsey Paradiso


When she finally delivered Omara Rose 40 hours later, she was so small, “I barely felt her leave me but I knew she had,” she says.


Over the next few hours, Lindsey and Matt got to hold Omara Rose, dressed in a tiny dress with a hat the size of the cup of Lindsey’s hand. Then Lindsey’s and Matt’s family came, each taking turns to say their goodbyes. “I wanted her to be alive so badly but I knew it was for the best. She went without pain,” she says.


The next day, they buried their daughter in a cemetery four hours away from where they live now.


“I don’t think people understand the gravity of how sick she was. How fatal her tumor was,” says Lindsey.


But it took some time for them to be open about it, especially Matt. Lindsey found comfort in blogging while Matt focused on completing his education at Virginia Tech.


“To hide something because you’re ashamed of it is just going to continue to perpetuate misunderstanding,” says Lindsey. People automatically assumed that if she had the abortion, it was out of convenience. On the contrary, she says. “It’s something that will stick with you forever.”


For those who believe these babies are unwanted, Matt says: “You’re not going to wait until halfway through your pregnancy to finally have an abortion.”


Prompted by Donald Trump’s statements on late-term abortions, Lindsey shared more widely her experience in a Facebook post, which was shared over 100,000 times.


“Abortions are hard decisions made by real people,” she says. “Being open is a call for empathy.”


Lindsey Paradiso testifies against bills to limit access to safe and legal abortions. She’s also blogged about her experience here


Darla Barar, Austin, Texas, copyrighter



Darla Barar and her husband Peter. Darla was pregnant with twins - Catherine and Olivia - when they discovered that Catherine had a number of serious health issues.


Darla Barar and her husband Peter. Darla was pregnant with twins – Catherine and Olivia – when they discovered that Catherine had a number of serious health issues. Photograph: Courtesy of the Barar family

On 22 June, at 3.30pm, the doctor let them see Cate one last time. She danced for them and then kicked. Her mom told her it was going to be okay. And then, guided by the ultrasound, the doctor injected a medication into Cate’s heart, stopping it. When they checked for a heartbeat 30 minutes later, the silence was deafening.


Darla, then 29, and her husband Peter had tried for years to get pregnant. When treatments failed, they traveled to the Czech Republic to use donated eggs. A week after the transfer, Peter got a dinner dessert with a message: “Congratulations daddy.” They were expecting twins.


Darla and Peter had named their twins Catherine “Cate” and Olivia, and by their 20-week anatomy scan they already knew their distinct personalities. Olivia was a “diva” and Cate was shy, a “cuddle bug”. “We loved them more fiercely than I ever thought possible,” Darla says.


But during a routine anatomy scan, the technician was abnormally quiet. Cate was measuring a little behind but she was always the smaller of the two, so Darla didn’t worry much. After a long wait, the OBGYN entered the room and asked Darla to sit next to her husband. “I just knew something was wrong,” Darla says.




Finally, we just looked at each other and said it was okay. We had to do what was best for her


Darla Barar


Darla recalls hearing the doctor say he had never seen this combination of anomalies before.


Darla and Peter saw additional specialists, and all confirmed a number of issues. Cate had encephalocele, which is a neural defect that causes brain matter to leak out, slow growth, microcephaly, a very large cleft lip and possible fused digits. Her cerebellum was so underdeveloped that one doctor had trouble finding it and her brain’s midline was shifted, indicating “severe disorganization”.


To make matters worse, Olivia’s life was in danger. Cate’s amniotic sac was growing and restricting the growth of Olivia’s sac.


If she carried to full term, the restriction on Olivia’s sac would likely mean an early delivery. Darla says that every specialist they saw disclosed there was a high probability that Cate would not survive the delivery but if she did, there was no guarantee the surgeries – removing the encephalocele and placing her brain tissue back into her skull – would save her.


Darla cried and Peter prayed. “We needed a miracle and we knew as the day went on we weren’t going to get one.”



‘And then we had to grasp that we were only a family of three.’


‘And then we had to grasp that we were only a family of three.’ Photograph: Courtesy of the Barar family

Their other option was abortion, one they did not take lightly, but one that felt rushed because of Texas’ restrictive abortion laws, which bans abortions after 22 weeks. Darla and Peter had 12 days to decide. “If laws were different … we would have done more testing – one doctor mentioned an MRI, for example, to try to test the level of her brain function. But we didn’t have that, and knowing what timeline we were on, we spent a lot of sleepless nights researching, making appointments, talking to each other and our therapist, and really just spending time being the four of us,” she says.


“Finally, we just looked at each other and said it was okay. We had to do what was best for her. So we knew what we had to do to bring home one”. Darla says she was prepared to deal with it all, but “if it meant Cate was going to suffer, we just couldn’t do that to her.”


At 21 weeks and 6 days, Darla had an injection, and Cate’s heart stopped. “For us, it was completely humane,” she says.


In the case of an additional fetus that gets aborted in the womb, the tissue is usually reabsorbed back into the body, but that wasn’t the case this time.


“I kept telling Peter, I’m carrying our healthy baby and our dead baby. I can’t reconcile that in my brain. At the same time, it was a comfort to know that I didn’t have to say goodbye right then,” she says.


Thirteen weeks after the diagnosis, Darla delivered Cate and then gave birth to Olivia, a healthy five-pound baby. The family took turns holding Cate and later in the afternoon, the chaplain came to take her away.


“And then we had to grasp that we were only a family of three,” she says.


Darla says she couldn’t face people after the abortion. She called it a stillbirth. “I knew I was dealing with more than just grief and I couldn’t explain that to people,” she says. She was also dealing with guilt. But she never felt regret, she says. She knew she did the right thing.


Spurred on by Donald Trump’s comments about later abortions, Darla took to social media to share her story and the response was overwhelming, both good and bad. The meaner comments focused on abortions as a version of birth control, or a way to rid oneself of an imperfect child.


“I can tell you, knowing how much the procedure cost, nobody is doing that for birth control,” she says. “Ask us why we’re getting it. Don’t assume that you understand our lives.”


Nonetheless, “being open has allowed me to be a better mom. I’m much more free with my emotions,” she says. Knowing that she could become a voice for women and men who needed it empowered her.


“It’s always the health of the mother but the health of the baby is never taken into consideration [into laws] and in situations like ours, it could have meant two dead babies on our hands,” she says.


Darla Barar blogs about her experiences here



The agony of ending a wanted late-term pregnancy: three women speak out

14 Nisan 2017 Cuma

Harare"s park bench grandmas: "I speak to them and feel a load is lifted off my heart"

The therapy room is a patch of waste ground, and the therapist’s couch a wooden bench under a tree. The therapist is an elderly Zimbabwean woman, in a long brown dress and headscarf.


Her patients call her “Grandmother” when they come along to sit on her bench and discuss their feelings, their depression or other mental health issues.


Outside a clinic in Highfield, a poor suburb just south of Zimbabwe’s capital Harare, there are lots of grandmothers – trained but unqualified health workers – who take turns on the park bench to hear stories. They listen to the battered wife who has attempted suicide twice, the man who hates women after he became infected with HIV, the unemployed single mother driven to despair by the struggle of raising four children.


The benches are a safe place for people struggling with depression, which in the Shona language is called kufungisisa, “thinking too much”.


It is a world away from conventional approaches to mental healthcare, but the Friendship Bench project has changed the lives of an estimated 27,000 Zimbabweans suffering from depression and other mental disorders.


The grandmothers, all of whom are trained to improve a patient’s ability to cope with mental stress, listen and nod, offering only an occasional word of encouragement.


One in four Zimbabweans suffers from some form of mental illness, but there are only 13 psychiatrists in a country of about 15.6 million. A solution had to be found, and it came in the way of a bench and the tradition of respect for African matriarchs.


Clinics screen their visitors for mental illness through a locally developed tool called the Shona Symptom Questionnaire. It has 14 questions, such as “Have you been struggling to sleep?” and “Have you been worrying too much?”


Patients scoring above the cut-off level are referred to the friendship bench. Those who go to the grandmothers are five times less likely to have suicidal thoughts, according to Dr Dixon Chibanda, co-founder of the scheme.


“When they first get to the bench, we use an intervention which we call kuvhura pfungwa [opening of the mind]. They sit and talk about their problems. Through that process, the grandmothers enable that patient to select a specific problem to focus on, and they help them through it,” he says.


Through at least six one-on-one sessions with the health workers, the patients are encouraged to speak about their problems and their mental illness.


Traditionally, elderly women play the role of counsellor for younger members of the community. On the bench, however, the grandmothers listen more, and lecture less.


“We used to talk a lot, ‘Do this, do that’. But now we ask them to open up, open their minds and hearts,” says Sheba Khumalo, a grandmother.


Chibanda says it is mostly women that visit the bench. “From our recent study, we found that 40% of those coming to the bench who show depression are victims of domestic violence. Whether that violence is caused by the economic situation is something that we have not looked at.”


In conservative Zimbabwe, just getting people to open up about their mental health is a victory in itself, says Joyce Ncube, another of the grandmothers.


“Many died just because they had nobody to tell their problems to,” she says, settling on to the wooden seat for a session with one of her patients. “When people keep things inside, their problems start.”


Maria Makoni is a 49-year-old unemployed mother of three who began therapy earlier this year.


“In our culture, you are ridiculed for speaking about your mental health,” says Makoni.


She is tense, but lights up when she speaks about the grandmothers. “I was desperate to find someone to talk to about my problems. When I speak to them, I feel like a load is lifted off my heart.”


When Makoni first found her way to the friendship bench, she was surprised to find she was one of many with similar problems. Now she is volunteering to bring more to the bench. “I am ready to speak to as many people as I can.”



Grandmothers working with the Friendship Bench project


Grandmothers working with the Friendship Bench project chat before counselling sessions begin. Photograph: Cynthia R Matonhodze

For many Zimbabweans, poverty – more than 70% of people live below the poverty line – and unemployment are a source of despair. In such a deeply superstitious and religious society, mentally ill people are sometimes seen as possessed; many are dragged to exorcism sessions at charismatic churches or traditional healers.


Chibanda says such beliefs need not be a hurdle, provided the intervention is packaged well.


“The term ‘opening of the mind’ does not sound medical at all. We have used those words to package a scientific intervention, and this is why it’s acceptable.”


The programme has had to pick its words carefully, as the grandmothers are meant to be more friends than doctors. The scheme was initially called “mental health bench” but nobody came. “The minute we changed it to friendship bench, it became acceptable, even though we are essentially providing the same thing,” says Chibanda.


Researchers say the friendship bench may be a blueprint for mental healthcare in developing countries. In Zimbabwe, the programme will now be rolled out to 60 other clinics across the country.


“This bench is filling that gap we have in providing affordable care,” says Prosper Chonzi, director of health for the City of Harare. “We are glad to see it is being applied to other cities in the country.”



Harare"s park bench grandmas: "I speak to them and feel a load is lifted off my heart"

14 Mart 2017 Salı

"He was really really let down": Thomas Orchard"s family speak out

The ordeal began for Thomas Orchard’s mother, Alison, as she strolled beside a river in Devon in October 2012. She took a call from her son’s social worker saying he had missed an appointment for a mental health assessment.


“I remember thinking: ‘Tom needs my help.’ I ran back home. There was this incredible knock on the door. It was two police officers. Their first words were: ‘We have some worrying news.’ They blue-lightedme into the hospital. I kept asking the police officers: ‘What’s happened?’ I thought he was dead.”


Orchard was not dead but unconscious. At first his family thought he had suffered a heart attack, though he was a physically fit young man. Gradually, as they kept vigil at his bedside over the next seven days, sketchy details emerged. He had been involved in a disturbance in Exeter city centre. He was taken to a police station and from there was rushed to hospital, gravely ill.


“It was very hard to get any information,” said Alison. “We didn’t know what had happened. I don’t think the medical team did either.” Orchard was put into a medically induced coma. “I remember doing things like getting his deodorant to give him a familiar smell,” said Alison. “We were talking to him constantly. But there came a time when it was obvious life was not possible, so the machines were turned off.”


Thomas’s sister, Jo, said they were baffled. “We had a lot of questions about why a 32-year-old healthy man would go into a police cell and come out essentially dead,” she said.


For four-and-a-half years now, the Orchard family – Alison, Thomas’s father, Ken, and his siblings, Jo and Jack – have fought to find out the truth of why he died. Now they believe they have an answer. “I’m completely certain that had it been picked up as a mental health crisis and taken to a place where that was understood, he would be alive,” Alison said.


The family were to discover that Orchard, who was being treated for paranoid schizophrenia, had had a mental breakdown and was arrested after approaching a passerby and beginning an argument. Police were called and he was pinned down in the street and restrained by his hands, legs and ankles.


At Heavitree police station in Exeter an emergency response belt (ERB), a heavy cloth device with handles most often used to secure prisoners around the body so that they can be carried, was held over his face. He was carried in the prone position to a cell, where he was searched while lying on his front, still masked by the ERB. The belt was removed and he was left alone, face down, in the cell. He suffered a cardiac arrest and brain damage. The ERB had been applied to his face for a total of five minutes and two seconds.


Orchard’s family were devastated when they found out what had happened to him. “It wasn’t dealt with appropriately,” said Alison. “I think they made assumptions that Tom was either drunk or on drugs or was an angry man. I know he was very frightened. That’s why he was acting as he was.”


Jo said: “Tom was really, really let down. It was clearly a medical crisis, not a criminal one.” His family believe Orchard’s confusion and fear would been exacerbated by the use of the ERB. “I think the [ERB] being used over the face is barbaric anyway,” said Jo. “If you add mental health crisis into that, it must be so, so scary.”


In their defence the officers made it clear they did not know Orchard had a mental health condition and thought they were dealing with an angry, aggressive man. They believed the force they used was proportional and lawful and pointed out that the ERB had been approved by Devon and Cornwall police for use as a bite or spit hood.


Orchard was raised in rural Devon. “As a child he was very physical,” said Alison. “Small, wiry, fit. He was a very free spirit. He was deeply sensitive.”


He struggled academically and began to suffer mental health problems. “He hit teenage years very badly,” his mother said. “He got into drugs and into petty crime associated with drugs. He was homeless for a while. He never settled in a job.”


On his 21st birthday Orchard was sectioned and, over the next decade, spent lengthy periods in hospital. There he found religion and, when he was judged fit enough to be treated in the community, was discharged. He had digs in Exeter and became a member of St Thomas’s church, where he acted as a part-time caretaker.


“He didn’t have any close friends except God,” said Alison. “He was very devout, very OCD-ish about saying the Lord’s prayer in exactly the same way. He loved crosses and candles.”


By the end of September 2012, his condition began to deteriorate. He stopped taking his medication, heard voices and had hallucinations. On the morning of 3 October, precisely at the time when he should have been arriving for the mental health assessment, he was in the city centre involved in the disturbance.


The officers involved in the arrest and detention clearly saw Orchard as violent. Their explanation for using the ERB was that he was threatening to bite.


Violence is not a trait his family recognise. “I had childhood spats with him but never in adult life have I seen him be violent,” said Jo. “The exact opposite. He would plant seeds and want to save the world.” His mother saw him get angry. “But, at heart, he was incredibly sensitive and gentle,” she said.


It was seven months before Orchard’s family got his body back for a funeral. “That was hugely difficult,” said Alison. “Tom became the property of the state.”


Almost two years after Orchard’s death – August 2014 – the family saw CCTV footage from the police station. “To see how they treated Tom, it was very deeply shocking,” said Alison. The worst part of the video for her is the section in which he is left alone in his cell and remains apparently motionless. “That’s the image that stays with me, that haunts me. It’s a deep, gut-wrenching, sickening feeling. It’s an achingly long time he is lying there and I am willing someone to go in.”


Watching the three officers on trial has been difficult. “I have a range of emotions,” said Alison. “From compassion, to disdain, to loathing.” The family remains angry at Devon and Cornwall police. “I think I have seen an arrogance and I think I’ve seen them not take this death seriously,” said Alison. “None of the officers involved were suspended until they were charged with manslaughter.”


The conclusion of the six-week trial, with three officers cleared of manslaughter, does not spell the end. Through the campaign group Inquest, the Orchards have spoken to other families who have lost loved ones in custody including relatives of Sean Rigg, a musician with schizophrenia who died at Brixton police station in south London after being held for eight minutes in a prone position.


Orchard’s mother and sister are contemplating a life of campaigning. Jo said: “This is a lifelong cause for us now. There are a lot of deaths in custody.” Alison said: “I’ve got to stop thinking it will be all right once this trial is over. I’ve got to accept that this is my purpose in life. It’s not the road I would have chosen in my life but I hope I can be there for anyone else who has to go through this.”



"He was really really let down": Thomas Orchard"s family speak out

12 Mart 2017 Pazar

Limits on learning to speak English like a native | Daniel Glaser

Is there a better way to judge who should live where and what belonging to a country really means? Something more enlightened than the permanent residency form that has provoked so much criticism recently. Sadly, a neuroscientific approach to how language marks you out as a recent arrival is unlikely to be any more forgiving. Although very young children respond equally to all languages, infants raised in a Japanese-only environment start to lose the ability to distinguish ‘l’ and ‘r’ sounds between six and 12 months old. English-speaking children get better at making the distinction.


Even if you learn a second language to a very high standard, you’ll never speak it like a native unless you were exposed to it by around the age of eight. This is mirrored by brain scans. Languages you learn after eight go into a subtly different area of the brain to those acquired earlier.


None of this suggests that we should include MRI scans in nationality tests. But it does show how hard we must work to implement modern and enlightened standards to determine who gets to live where.


Listen to this week’s podcast at theguardian.com/lifeandstyle/series/neuroscientist-explains



Limits on learning to speak English like a native | Daniel Glaser

16 Ocak 2017 Pazartesi

"Can I speak to a serial killer?": there"s more to NHS comms than you"d think

“Can I speak to Peter Sutcliffe?”


The journalist was perfectly serious. I was working in communications at Broadmoor hospital and he saw me as a route to people he thought were patients there. He wanted Sutcliffe’s “take” on a series of recent “Ripper style” murders in the Ipswich area. I explained – while trying to not audibly gasp – that Broadmoor could not confirm who its patients were, let alone put them up for press interviews.


Every so often, an FOI request asks how much the NHS spends on “communications”. The easy headline is that the NHS needs real doctors, not spin doctors. But it is only when you look at the range of activities that communications cover that you wonder if the real spin doctors are those writing the story.


To some, communications is just shorthand for public relations and spin. In fact, responding to media queries (and FOI requests) – which the NHS is rightly expected to do as a public service – is a tiny proportion of our work.


Much of it is about making sure staff know what’s going on in their organisation, that information for patients is clear and easy to access and that MPs, local councils, regulators and community organisations are kept informed and involved in what the NHS is doing.


I have worked at a large trust where there was no system in place for briefing staff on the wards about things they needed to know. I’ve worked in places where every department was producing its own, homemade newsletter that was badly written, misspelt and missed out the information patients needed. I have had to advocate for people’s right to know about changes to local services and to develop plans to reach people who don’t read newspapers, rarely visit their GP and certainly don’t attend NHS meetings.


Part of the job is to manage press and public interest in the event of a major incident. This involves careful planning, working with other emergency services. How do you keep people informed, including your own staff, concerned members of the public and relatives of those impacted? Where do they all go in a busy working hospital? And major incidents come in different shapes and sizes. If a high-profile patient dies in your hospital, you need to be able to manage not just a potential media scrum disrupting your hospital, but the needs of the family too. I recall liaising with one very high-profile family after their son died, because they wanted to visit the hospital morgue without being accosted by the press.


Then there is the navigation issue. How does a person find their way around a hospital, let alone the whole NHS? Part of our job is to make sure that patients can get to the service they need as quickly as possible. How do we reach every potential patient to achieve this? How do we describe different services to the public? (spoiler: not always very helpfully).


I don’t deny that the odd Amateur Alistair surfaces, desperate to turn their job running comms for a cottage hospital into The Thick of It. But they are a rare breed. The majority of us see our job as helping the public, the media and a huge range of stakeholders to understand how the NHS works, the challenges it is facing and how they might be able to help. If you think about the huge numbers of services we provide, the many different communities we serve and the amount of information that implies, this is far from easy.


In recent years we have seen the beginnings of a sea change in the way the NHS talks to patients and the public. Expertise in consultation and community engagement is increasingly valued, not just because these things are required of the NHS, but because we know that involving patients in the development of services improves those services no end.


Some of the best conversations I have had about the NHS have been with the public. Most people understand the challenges presented by an ageing society, flat funding and increasingly expensive treatments. While they will not always agree with each other – or the NHS – on the best solutions, I am yet to attend an NHS public engagement event where I didn’t hear several good ideas. Of course, there is the odd moment – one man went around each person on a table, asked them their background and announced none of them were as qualified as him to talk about “his NHS” – but we should not underestimate the positive contribution patients and the public can make.


If you would like to write a blogpost for Views from the NHS frontline, read our guidelines and get in touch by emailing sarah.johnson@theguardian.com.


Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.



"Can I speak to a serial killer?": there"s more to NHS comms than you"d think

19 Ekim 2016 Çarşamba

Doctors freed to speak about Australia"s detention regime after U-turn

Doctors have been released to speak out about conditions and medical treatment in Australia’s immigration detention system, after a backdown from the government on one of the most contentious elements of the Australian Border Force Act.


The secretary of the immigration department, Michael Pezzullo, signed an amendment on 30 September specifically carving out “health professionals” from the definition of “immigration and border protection workers”.


The amendment means the secrecy and disclosure provisions of the Border Force Act no longer apply to a comprehensive list of health professionals, including doctors, nurses, psychologists, psychiatrists, counsellors, midwives, pharmacists and dentists.


Other professionals working in onshore and offshore immigration detention, including teachers, lawyers, security staff, social workers and other staff, have not been exempted from speaking out. They still face a jail term of up to two years for any “unauthorised disclosure”.


The backdown came ahead of the commencement of high court challenge from medical advocacy group Doctors for Refugees contesting section 42 – the secrecy provisions – of the Border Force Act.


Dr Barri Phatarfod, president of Doctors for Refugees, said the decision was a “huge win for doctors and recognition that our code of ethics is paramount”.


But she said the change only allowed for doctors to publicly advocate on behalf of their patients, “it doesn’t change the appalling lack of care they often seem to receive”.


“Currently, Doctors for Refugees is advocating for several children denied special needs care as well as women unable to get a breast lump biopsy and other significant deviations from appropriate medical treatment. We have around 160 active cases of concern.”


Doctors have led public criticism of conditions in immigration detention, particularly in the Australian-run offshore processing camps in Nauru and on Papua New Guinea’s Manus Island. A stream of disclosures from health professionals has revealed systemic abuses, including rape, sexual abuse of women and children, violent assault, as well as epidemic levels of self-harm and suicide.


Dr Peter Young, formerly the head of mental health for immigration detention healthcare provider IHMS, was one of the earliest whistleblowers on abusive conditions and inadequate care in offshore detention.


He told the Guardian in 2014 that conditions in offshore detention on Nauru and Manus Island were “akin to torture”, in an “environment that was inherently toxic”.


On Tuesday Young said the amendment was a major win for doctors and other health professionals who could now freely advocate for better health care for their patients, without fear of prosecution.


“It’s a big backdown from the government, and they’ve made it because they didn’t want to go to court, they knew they were going to lose, and they didn’t want their planning and policies discoverable in an open court. That’s what it’s about.”


He said the government had quietly made the amendment last month, without broadcasting it, because they wanted the Border Force Act to retain its “chilling affect” on public dissension about detention policies.


“Now, for doctors and nurses and other health professionals, it’s even more incumbent on them, those people who have witnessed these things, to come out speak about what is occurring in immigration detention.


“There is nothing stopping them now, except for their own consciences. It’s their ethical duty to speak out.”


Earlier this year, traumatologist and psychologist Paul Stevenson, who has spent 40 years working with the victims of trauma, said conditions in offshore were “the worst atrocity I’ve seen”.


Guardian Australia has approached the Department of Immigration and Border Protection for comment.



Doctors freed to speak about Australia"s detention regime after U-turn

17 Ekim 2016 Pazartesi

Bitter irony: I wanted to speak out about mental health but my anxiety stopped me | Marian Faa

I think and write a lot about mental health. Since being diagnosed with anxiety and clinical perfectionism, writing has become an important way of coming to terms with my own psychiatric ailments, while trying also to raise public awareness. It’s not an easy task. Despite my eagerness and many importunate attempts to give a voice to mental illness, I am often left feeling like the world isn’t ready to listen.


But when mental health week ticked around this year, ears pricked up. My news feed was awash with articles about mental health, friends brandishing popular hashtags and events popping up all around my city.


Finally, a week where mental health was a hot topic, where my issues were on the frontline. If ever there was a time when my humble opinions on the human brain might count for something, this was sure to be it. I panicked.


Determined to seize the opportunity, I started bashing out stories and pitches with intensity, like I was trying to give my computer’s motherboard some kind of frantic deep tissue massage. My mind turned cartwheels. Within 20 minutes I had chewed all my fingernails back to the quick and yanked out a few generous handfuls of hair – telltale symptoms of my escalating anxiety.


I forgot to have lunch. I forgot to pick my little sister up from school. I missed two calls from my partner. But somehow I still managed to singlehandedly pluck all the tiny hairs on my leg, another delightful habit I tend to deploy with fervour whenever I need to curb my anxiety.


As time ticked by and the pressure mounted, I realised I was heading for a nervous breakdown. Maybe I was making too big a deal of mental health week, but that is the very nature of my mental illness – the tendency to inflate and catastrophise. It was a bitter irony: my anxiety was the very thing that stopped me from writing about it.


So I closed my laptop and resolved to stay silent for mental health week. I decided that protecting my own mental state was more important than writing about it. And I reassured myself there would be other opportunities.


See, that’s just it with mental illness. Often we cannot talk about it when the world wants us to – whether that be our families, therapists or the media. And when we are ready to speak up, we can’t find the ears.


Even with efforts to reduce stigma, mental health is an extremely sensitive topic. It takes a long time to develop the personal insight and vocabulary to be able to communicate about our mental states. In my experience, you can only really talk (or write) about it on your own terms and in your own time. This means we need a culture that is receptive to discussions the year round, not just at designated calendar points.


While initiatives like mental health week are exceedingly important, they are not always as beneficial to sufferers in the ways they intend to be. The sudden spike in publicity may feel like a fleeting injection of sympathy that leaves us even more isolated once the week is over and our issues fall into the background once again.


The ephemeral support for mental illness shines with a suspicious veneer, tarnished by the knowledge that talking about mental illness might earn you a hundred likes on Facebook on one day but compromise your job application the next.


On the other hand, the sudden spotlight on mental health can also cause people with mental illness to cringe and withdraw, unnerved (so to speak) by the unfamiliar pressure of public exposure. And then there is the risk of triggers that comes with a disordered flurry of news articles and tweets about mental health.


I am not disputing the merits of mental health week and the media’s reporting of it. I think these initiatives are noble and necessary. I think they are crucial to creating a society that makes it easier to live with a mental illness. But if listening to people with mental illness and understanding their experiences is the most important step in dissolving the silence and stigma, we need to be open on a more general, everyday basis.


We need a culture that is attuned to the nuances of mental illness and accepting of the silences as well as the disclosures. We need a world where mental health is an acceptable topic regardless of time and place, beyond the field days and short-lived social media campaigns.



Bitter irony: I wanted to speak out about mental health but my anxiety stopped me | Marian Faa

3 Ağustos 2016 Çarşamba

As a black man I need to speak out about prostate cancer

I was only recently made aware of some startling statistics: one in four black men will be diagnosed with prostate cancer in his lifetime; one in 12 will die from the disease. This is double the risk faced by white men in the UK.


Perhaps even more concerning is the fact that 86% of black men are oblivious to the heightened threat prostate cancer poses to their health, putting thousands in danger of being diagnosed at a late stage when treatment options are limited.


The prostate gland is an important component of the male sex system, but 92% of black men don’t know what it does, 62% don’t know where it is and nearly one in five is unaware he even has a prostate.


As a black man, I find these statistics worrying, especially as prostate cancer is a disease that can be successfully treated if caught early enough. Men over 50 and men with a family history of prostate cancer also face a higher than average risk of the disease.


Related: What 12 Years a Slave tells us about 21st century black mental health


What can we do to make sure more black men understand the added danger they face and take the necessary action that could save their lives?


Although increasing awareness is obviously a vital priority, health professionals can play a crucial role as well. Black men not only face an increased risk of prostate cancer, they are also more likely to develop the disease at a younger age. The PSA blood test is the first step men can take to identify whether anything might be wrong with their prostate; however the test is riddled with complexities and there is still a lot of confusion among GPs as to who is entitled to the test and from what age. Some remain unaware that black men face a higher than average risk and there are a number of black men who report being denied a PSA test from their GP.


The charity Prostate Cancer UK has recently produced a set of consensus statements from a panel of independent clinical experts to help GPs use the PSA test more effectively. As part of this, experts recommend that all men should be able to access PSA testing from the age of 50, but men at higher than average risk of prostate cancer (including black men) should be able to access the test from age 45.


Related: Black men face inequalities in cancer care


My constituency, Streatham in Lambeth, has one of the highest black populations in the country, which is why this issue is so important to me as their MP. I want to make sure that all GPs, not only in my constituency but across the UK, help to raise awareness of the increased risk of prostate cancer in black men and have the knowledge to initiate these important conversations with the community.


Although we still don’t know why black men face a higher than average risk, my message is clear: with one in four black men being diagnosed with prostate cancer, it is up to us in the community to act. Please speak to your dads, uncles, brothers and friends and make sure every black man over the age of 45 is wise to the risk we face. Don’t let people die from embarrassment. Ignoring prostate cancer won’t beat it.


Join the Healthcare Professionals Network to read more pieces like this. And follow us on Twitter (@GdnHealthcare) to keep up with the latest healthcare news and views.



As a black man I need to speak out about prostate cancer

21 Ağustos 2015 Cuma

Will not be embarrassed to speak about vaginas with your physician

Vagina embarrassment


If there’s 1 person you need to in no way be embarrassed to say the word “vagina” to, it’s your GP. But, in accordance to a new study released this week by Ovarian Cancer Trust, 66% of 18-24 yr-olds are so shy of muttering these 3 syllables to their medical professional that they are keeping away from going to them altogether, preferring to turn to Google for all their gynae-connected inquiries.


Plainly, this is a worrying statistic with evident health implications, as a spokesperson for OCT factors out: “While several of us have turned to the internet for help, Googling symptoms is not a substitute for suitable health care attention. It’s amazingly critical that ladies come to feel empowered to talk about their wellness and feel comfy visiting healthcare experts.” But while females beneath-24 are at a significantly reduced threat of getting ovarian cancer compared with girls over 55, it is not, of program, the only reason they ought to be receiving checked out.


It is tough to know what’s creating this reticence among millennials to consider a journey to their GP surgical treatment, but study by the The Eve Appeal, due to be published following month, might have one suggestion – the stigma that persists around gynaecological cancers being linked to sexual promiscuity. As they place it: “One quarter of females are place off speaking to their GP because they do not want to examine their sexual background, with almost 40% agreeing that there is a higher stigma around gynaecological cancers than other kinds of cancer.”


One particular factor here is evident: females want to feel totally free to talk about sexual health issues with out the worry of currently being judged.


“It is unhappy that gynaecologists and GPs do not have the trust of younger women. They need to create an environment of trust and inspire girls to come to feel cozy so they can talk about their troubles,” Professor Christina Fotopoulou told the Independent. And if there was another cause essential to make sex training compulsory in schools, certainly it’s this.


US military history


First lieutenant Shaye Haver.
1st lieutenant Shaye Haver on an obstacle program at US army Ranger school. Photograph: Robin Trimarchi/AP

Right now marks a very first in US military historical past, as two girls – captain Kristen Griest and first lieutenant Shaye Haver – are set to graduate from the gruelling Army Ranger school soon after months of arduous physical and psychological coaching. It comes in the exact same week that a leading Navy Seals admiral, Jon Greenert, has unveiled that the navy is organizing to open its elite Seals staff to ladies, as well.


“Why shouldn’t anybody who can meet these [specifications] be accepted? And the solution is, there is no purpose,” Greenert informed the Navy Occasions. “We’re on a track to say, ‘Hey seem, anybody who can meet the gender non-particular requirements, then you can grow to be a Seal.” There’s no doubt that Griest and Haver’s efficiency has influenced Greenert’s, despite the fact that they may possibly be far more modest about it. Speaking to the Guardian, Griest mentioned: “I do hope that with our efficiency in Ranger School we’ve been ready to inform that determination. We can handle issues physically and mentally on the same level as guys, and we can deal with the very same stresses and training as the males can.”


Associated: Gone off sex? Never ever worry, ‘pink Viagra’ is here to save womankind


‘Female Viagra’


Following two failed attempts, flibanserin, dubbed the “female Viagra” finally received the go-ahead by the Meals and Drug Administration this week, turning into the initial drug on the market to treat minimal libido in women. And guess what? It is pink. Even though Sprout Pharmaceuticals, the organization that designed the drug (which will be offered below the title Addyi) was purchased for $ 1 billion just 36 hrs later on, it is by no indicates a miracle solution. Reactions to the information have been mixed, not least since Addyi comes with a really hefty overall health warning – the highest it can obtain whilst even now getting on shelves. Then there’s its misleading moniker – Addyi works nothing at all like Viagra. Rather it need to be taken every day (not just when intercourse might be on the cards), as it acts like an anti-depressant to stability chemical compounds in the brain (thus escalating sexual need) rather than push blood to the physique. Even then, these who partook in clinical trials only reported going through “one more sexually satisfying occasion a month, compared to a placebo”. Starting to sound like more problems than it is really worth? This sex therapist thinks so as well.


Flibanserin … female
Flibanserin … does it dwell up to its female ‘viagra’ tag? Photograph: Sprout Pharmaceuticals/Reuters

But a single group – Even the Score – is thrilled with the FDA decision. Obtaining spent years campaigning for the dug, believing its absence to be a indicator of gender inequality in the treatment of sexual dysfunction and accusing the FDA of gender bias, the female strain group sees the advent of Addyi as a “game changer for women”.


“In a breakthrough minute for women’s health, the FDA today chose to respect the science and stand with hundreds of thousands of American females by approving the initial-ever medical treatment choice for HSDD [hypoactive sexual want disorder], wrote Susan Scanlan, chair of Even the Score. “It is our hope that this historic minute for girls will open the door to a pipeline of long term therapy choices for the most typical form of female sexual dysfunction.”


Greatest airport drinkers


Up coming time you’re at an airport pouring scorn on young men (possibly journeying to a stag-do in Prague) drinking lager at 6am, keep in mind this: 65-yr-previous girls are 4 instances much more probably to drink eight units just before a flight than any person else. In truth the poll, carried out by site Vacation Extras, found that two in three men aged 18-24 did not drink ahead of a flight at all. Whether these females have some time to kill in departures, are settling their nerves or are still treating air travel as an occasion that warrants currently being marked with a cocktail (or 3), now you know who to steer clear of sitting next to on a flight. Though there have been no reviews of brawling in the aisles. Yet.


ICYMI


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From literary heavyweight to life style brand: exploring the cult of Joan Didion


Females in Gaza: ‘If we want to live right here, we want to dwell in dignity’


Is a woman too old to have a little one at 50? It depends on who she is


I’m tired of getting variety to creepy males in purchase to remain protected



Will not be embarrassed to speak about vaginas with your physician