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Boy, 15, sues local health authority

Fifteen-year-old with rare condition makes legal history in bid to force Derbyshire primary care trust to pay for his medicine A 15-year-old boy who suffers from a rare medical condition that means he cannot eat protein is to make legal history by becoming the first child to sue his local health authority under the Human Rights Act. The boy’s lawyers claim that he will suffer both physical and mental retardation at a critical time in his adolescent development unless Derbyshire primary care trust agrees to fund a drug that helps him consume a normal diet. The boy, who is referred to as NL, is said by his solicitor to be half the weight of normal children because of his condition, phenylketonuria, or PKU. The rare condition affects one in 15,000 people, making it difficult for them to produce an enzyme that breaks down the protein found in meat, chicken, fish, eggs, nuts and cheese. It is sometimes fatal. Derbyshire PCT has refused to pay for the boy to receive Kuvan, a drug that can alleviate the condition and costs £30,000 a year, on the grounds that he is not an exceptional case and there are alternatives available such as a synthetic food diet. The case, one of the first to invoke the Human Rights Act against a PCT, is highly unusual because the claim against the PCT is being made under article six, the right to a fair trial, and article eight, respect for family life. The boy’s lawyers claim article six is relevant because of the way in which the PCT reached a decision not to fund the drug. They also say the boy’s mother has had to give up her job because of the stress on the family, while his two younger brothers have suffered because his poor diet has left him often short-tempered, indicating that a claim under article eight is also valid. His family has raised sufficient funds to pay for a one-year course of Kuvan, but they say their resources have now run out. The boy’s father, Max, said his son may soon have to return to a synthetic diet that he has refused to eat in the past, leaving him prone to malnutrition. Since the boy started taking the drug, which is widely available in other EU countries, he has made a dramatic improvement, according to his family and experts at Birmingham children’s hospital who have observed him. The boy has been able to eat small amounts of protein – about a third of a normal child’s intake, which is equivalent to a bowl of cereal a day without milk. He has gained weight as a result. His father said the family was not asking the PCT to supply the drug indefinitely, but for the next three years, during which time the increased protein intake could help NL with his adolescent growth spurt. “We have pretty much spent our life savings,” Max said. “We are down to selling our house to continue. If not, I’ve got to put my son through more pain by taking him off the drug.” He said that since NL had been on the drug it was “like having a different son. His whole character has changed. He’s less angry, easier to deal with, far more tolerant, more relaxed, more humorous, his confidence has improved and he’s more able to concentrate.” Oliver Wright, of MPH solicitors who are acting on behalf of NL, said: “The PCT said we couldn’t prove that it works and that it only works for one in four people with the condition. Well, my client has paid for it for a year and shown it works. He’s put on weight, he’s grown, he’s happier.” The PCT, which declined to comment, was preparing to fight the case in court after proceedings were issued against it in February. However, after a series of legal wrangles, it has now referred a decision to its specialist individual funding request panel. If the panel declines to approve funding, the boy’s lawyers will seek a judicial review into how the PCT reached its original decision. The case is being studied closely by medical lawyers. Experts predict an increasing number of patients will use the Human Rights Act to demand access to expensive drugs and surgery. This week the High Court is expected to deliver its verdict in the case of Tom Condliff, a diabetic who says he will die within a year if Staffordshire primary care trust refuses to pay £5,500 for him to have a gastric bypass. His legal team has argued that without the operation there is a significant chance he will lose some of his limbs, making the cost of caring for him far outweigh that of the operation. But lawyers for Staffordshire PCT have said that National Institute of Clinical Excellence (Nice) guidelines make it clear that he does not qualify for surgery in his current condition. The case is the first to have been brought under the Human Rights Act against a PCT, with Condliff’s legal team arguing that, under article two, the Staffordshire trust must respect their client’s right to life. If it is successful, similar applications are expected to be made at many of the UK’s 159 PCTs. Human Rights Act Health NHS Jamie Doward guardian.co.uk

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Boy, 15, sues local health authority

Fifteen-year-old with rare condition makes legal history in bid to force Derbyshire primary care trust to pay for his medicine A 15-year-old boy who suffers from a rare medical condition that means he cannot eat protein is to make legal history by becoming the first child to sue his local health authority under the Human Rights Act. The boy’s lawyers claim that he will suffer both physical and mental retardation at a critical time in his adolescent development unless Derbyshire primary care trust agrees to fund a drug that helps him consume a normal diet. The boy, who is referred to as NL, is said by his solicitor to be half the weight of normal children because of his condition, phenylketonuria, or PKU. The rare condition affects one in 15,000 people, making it difficult for them to produce an enzyme that breaks down the protein found in meat, chicken, fish, eggs, nuts and cheese. It is sometimes fatal. Derbyshire PCT has refused to pay for the boy to receive Kuvan, a drug that can alleviate the condition and costs £30,000 a year, on the grounds that he is not an exceptional case and there are alternatives available such as a synthetic food diet. The case, one of the first to invoke the Human Rights Act against a PCT, is highly unusual because the claim against the PCT is being made under article six, the right to a fair trial, and article eight, respect for family life. The boy’s lawyers claim article six is relevant because of the way in which the PCT reached a decision not to fund the drug. They also say the boy’s mother has had to give up her job because of the stress on the family, while his two younger brothers have suffered because his poor diet has left him often short-tempered, indicating that a claim under article eight is also valid. His family has raised sufficient funds to pay for a one-year course of Kuvan, but they say their resources have now run out. The boy’s father, Max, said his son may soon have to return to a synthetic diet that he has refused to eat in the past, leaving him prone to malnutrition. Since the boy started taking the drug, which is widely available in other EU countries, he has made a dramatic improvement, according to his family and experts at Birmingham children’s hospital who have observed him. The boy has been able to eat small amounts of protein – about a third of a normal child’s intake, which is equivalent to a bowl of cereal a day without milk. He has gained weight as a result. His father said the family was not asking the PCT to supply the drug indefinitely, but for the next three years, during which time the increased protein intake could help NL with his adolescent growth spurt. “We have pretty much spent our life savings,” Max said. “We are down to selling our house to continue. If not, I’ve got to put my son through more pain by taking him off the drug.” He said that since NL had been on the drug it was “like having a different son. His whole character has changed. He’s less angry, easier to deal with, far more tolerant, more relaxed, more humorous, his confidence has improved and he’s more able to concentrate.” Oliver Wright, of MPH solicitors who are acting on behalf of NL, said: “The PCT said we couldn’t prove that it works and that it only works for one in four people with the condition. Well, my client has paid for it for a year and shown it works. He’s put on weight, he’s grown, he’s happier.” The PCT, which declined to comment, was preparing to fight the case in court after proceedings were issued against it in February. However, after a series of legal wrangles, it has now referred a decision to its specialist individual funding request panel. If the panel declines to approve funding, the boy’s lawyers will seek a judicial review into how the PCT reached its original decision. The case is being studied closely by medical lawyers. Experts predict an increasing number of patients will use the Human Rights Act to demand access to expensive drugs and surgery. This week the High Court is expected to deliver its verdict in the case of Tom Condliff, a diabetic who says he will die within a year if Staffordshire primary care trust refuses to pay £5,500 for him to have a gastric bypass. His legal team has argued that without the operation there is a significant chance he will lose some of his limbs, making the cost of caring for him far outweigh that of the operation. But lawyers for Staffordshire PCT have said that National Institute of Clinical Excellence (Nice) guidelines make it clear that he does not qualify for surgery in his current condition. The case is the first to have been brought under the Human Rights Act against a PCT, with Condliff’s legal team arguing that, under article two, the Staffordshire trust must respect their client’s right to life. If it is successful, similar applications are expected to be made at many of the UK’s 159 PCTs. Human Rights Act Health NHS Jamie Doward guardian.co.uk

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Boy, 15, sues local health authority

Fifteen-year-old with rare condition makes legal history in bid to force Derbyshire primary care trust to pay for his medicine A 15-year-old boy who suffers from a rare medical condition that means he cannot eat protein is to make legal history by becoming the first child to sue his local health authority under the Human Rights Act. The boy’s lawyers claim that he will suffer both physical and mental retardation at a critical time in his adolescent development unless Derbyshire primary care trust agrees to fund a drug that helps him consume a normal diet. The boy, who is referred to as NL, is said by his solicitor to be half the weight of normal children because of his condition, phenylketonuria, or PKU. The rare condition affects one in 15,000 people, making it difficult for them to produce an enzyme that breaks down the protein found in meat, chicken, fish, eggs, nuts and cheese. It is sometimes fatal. Derbyshire PCT has refused to pay for the boy to receive Kuvan, a drug that can alleviate the condition and costs £30,000 a year, on the grounds that he is not an exceptional case and there are alternatives available such as a synthetic food diet. The case, one of the first to invoke the Human Rights Act against a PCT, is highly unusual because the claim against the PCT is being made under article six, the right to a fair trial, and article eight, respect for family life. The boy’s lawyers claim article six is relevant because of the way in which the PCT reached a decision not to fund the drug. They also say the boy’s mother has had to give up her job because of the stress on the family, while his two younger brothers have suffered because his poor diet has left him often short-tempered, indicating that a claim under article eight is also valid. His family has raised sufficient funds to pay for a one-year course of Kuvan, but they say their resources have now run out. The boy’s father, Max, said his son may soon have to return to a synthetic diet that he has refused to eat in the past, leaving him prone to malnutrition. Since the boy started taking the drug, which is widely available in other EU countries, he has made a dramatic improvement, according to his family and experts at Birmingham children’s hospital who have observed him. The boy has been able to eat small amounts of protein – about a third of a normal child’s intake, which is equivalent to a bowl of cereal a day without milk. He has gained weight as a result. His father said the family was not asking the PCT to supply the drug indefinitely, but for the next three years, during which time the increased protein intake could help NL with his adolescent growth spurt. “We have pretty much spent our life savings,” Max said. “We are down to selling our house to continue. If not, I’ve got to put my son through more pain by taking him off the drug.” He said that since NL had been on the drug it was “like having a different son. His whole character has changed. He’s less angry, easier to deal with, far more tolerant, more relaxed, more humorous, his confidence has improved and he’s more able to concentrate.” Oliver Wright, of MPH solicitors who are acting on behalf of NL, said: “The PCT said we couldn’t prove that it works and that it only works for one in four people with the condition. Well, my client has paid for it for a year and shown it works. He’s put on weight, he’s grown, he’s happier.” The PCT, which declined to comment, was preparing to fight the case in court after proceedings were issued against it in February. However, after a series of legal wrangles, it has now referred a decision to its specialist individual funding request panel. If the panel declines to approve funding, the boy’s lawyers will seek a judicial review into how the PCT reached its original decision. The case is being studied closely by medical lawyers. Experts predict an increasing number of patients will use the Human Rights Act to demand access to expensive drugs and surgery. This week the High Court is expected to deliver its verdict in the case of Tom Condliff, a diabetic who says he will die within a year if Staffordshire primary care trust refuses to pay £5,500 for him to have a gastric bypass. His legal team has argued that without the operation there is a significant chance he will lose some of his limbs, making the cost of caring for him far outweigh that of the operation. But lawyers for Staffordshire PCT have said that National Institute of Clinical Excellence (Nice) guidelines make it clear that he does not qualify for surgery in his current condition. The case is the first to have been brought under the Human Rights Act against a PCT, with Condliff’s legal team arguing that, under article two, the Staffordshire trust must respect their client’s right to life. If it is successful, similar applications are expected to be made at many of the UK’s 159 PCTs. Human Rights Act Health NHS Jamie Doward guardian.co.uk

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Columbia professor Manning Marable spent 20 years working on a groundbreaking biography of Malcolm X but died yesterday, just three days before its release. Scholars who have read Marable’s Malcolm X: A Life of Reinvention say it presents the most definitive look yet at the black nationalist leader’s legacy, reports…

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Huhne tells Warsi: Stop AV ‘smears’

Letter to cabinet colleague accuses No camp of ‘scares and smears’ against supporters of electoral reform Cabinet ministers have become embroiled in an extraordinary row over electoral reform amid claims that the campaign against the alternative vote is “poisoning” British politics and hiding the sources of its funding. In a dramatic break from cabinet etiquette, Chris Huhne, the energy secretary, who backs AV, has written to Tory chairman Baroness Warsi demanding that she “comes clean” over funding and stops the “scares and smears” against supporters of change. He also accuses the campaign of being a front for the Tory party. “Are the No camp campaigning in dark glasses because they don’t want to show that the bulk of their funds, in cash and in kind, are donations from the Conservative party?” Huhne asks his fellow cabinet member. “How many Conservative employees have been seconded to the No campaign? Will you declare the full value of their services properly as donations?” The No campaign has not revealed its donors, which it is allowed to do until six months after the 5

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UN killings prompt surge of anger

UN workers warn killings in surge of anger prompted by Qur’an burning could end Afghan mission Syed Jamal had a front-row seat for Friday’s sacking of the UN compound in Mazar-e-Sharif. The small building containing offices for the provincial mission are separated from the bread shop owned by the 17-year-old’s family by just an open drain and a few dozen yards of rutted, unpaved road. The day after the attack, a group of 20 bored policemen were lounging around in the front of the gutted building, biding their time by reading UN leaflets that had become strewn in front of the building, and standing guard in front of a pair of burned-out trucks. But the dramatic events of Friday – events that shocked the world, imperilled the entire UN mission and raised serious doubts about how Afghanistan will handle the handover of power from its foreign backers – were of marginal interest to Jamal and the boys messing around on the corner. And there were mixed feelings about the rights and wrongs of an incident that cost the lives of seven UN staff – four Gurkha security guards and three European UN diplomats – making it the worst crisis to hit the international organisation in Afghanistan. Yes, they thought what happened on their doorstep was wrong – particularly the beheading of two UN staff, who they accepted were only in Mazar to “serve Afghanistan”. But, they said, “the foreigners” needed to understand the level of anger at the desecration of the Qur’an by a Christian extremist on the other side of the world. “Why do they not respect us?” asked Jamal. “We do not burn their Christian books, so they need to understand that the Qur’an is our most holy book.” It was a question repeated in other parts of Afghanistan as anger over the Qur’an-burning fuelled a second day of violence, sparking riots in the southern city of Kandahar in which nine protesters died and more than 80 were injured. Demonstrations in cities such as Kabul and Herat against Florida pastor Terry Jones’s stunt were reported to have stayed peaceful, in stark comparison to Friday’s drama in Mazar. It was in the city’s exquisite Blue Mosque, where Jones’s Qur’an-burning was the subject of a Friday-prayers sermon, that the afternoon’s bloody sequence of events began to unfold. Upon leaving the mosque, worshippers found another set of religious leaders in a Toyota Corolla kitted out with loudspeakers urging people to join them at the burning of Jones in effigy. But then the crowd turned and started walking the one-mile journey towards the UN compound. Atiullah Ansari, head of the Blue Mosque, said there had been no plan to do that and claimed that radical madrasa students from outside the city were to blame. These “agents of the Taliban and Hezb-e-Islami [a Taliban-allied insurgent group]” were solely responsible for the violence, he argued. That view was also being pushed by provincial government officials keen to blame a small minority for inciting the violence, although few analysts accepted it. Unusually, one of the Taliban’s spokesmen, Zabiullah Mujahid – a man not usually given to missing an opportunity to claim credit for mayhem – sent a text message to the Observer denying involvement. If the glimmer of popular sympathy for violence in Mazar is disturbing, so too is the fact that such a terrible attack on western civilians should have happened there at all. Mazar is a highly secure city of ordered streets, where cars are regulated by traffic lights which, almost uniquely in Afghanistan, not only work but are obeyed. When Liam Fox, the defence secretary, toured Afghanistan, he made a point of adding Mazar to the usual British itinerary of Kabul and Helmand. “It was a totally unthreatening environment,” he said at the time. “It’s a city the size of Bristol and it felt just like any safe city in Central Asia.” Indeed, there are few signs of the concrete bastions and blast walls that encrust important buildings in other Afghan cities. The newly opened US consulate, which has taken over an old hotel, does not even have razor wire along its not particularly high walls. And the UN compound looks, with hindsight, absurdly under-protected. Little stood in the way of Friday’s crowds except a metal car barrier and a couple of Gurkhas who, on being overwhelmed by the crowds, were beaten with the butts of their own assault rifles, eyewitnesses said. The image of a furious mob cutting down the white men who had come into their midst conjured up parallels with the west’s previous forays into the country, not least the first Anglo-Afghan War, which was preceded by a crowd overwhelming a British position and killing the famous diplomat Alexander Burnes in 1841. That incident had in part been due to the dissolute behaviour of foreigners that had been gradually enraging the locals in the conservative Islamic country for some time. Many believe the same is happening again. “There is a lot of anger after years in which western military operations have caused an accumulation of civilian casualty cases,” wrote Thomas Ruttig , director of the Afghanistan Analysts Network. “Afghans are tired of the repeated initial denials, then admission that something may have gone wrong and then apologies. Paying compensation might be nice gestures but cannot bring anyone back to life.” Politicians, including the president Hamid Karzai, tap into public anger in order – claim his many critics – to mask his own shortcomings. The day before the Mazar riots, the Afghan president fuelled the controversy by condemning the Qur’an burning and calling for Jones to be arrested. In days gone by, the UN liked to think it stood above the many conflicts in Afghanistan, working as a vital independent arbiter. Today, however, the international organisation is regarded as too weak to be truly useful by the Americans and partisan by both the government and much of the insurgent movement. The Karzai government’s displeasure with the UN was illustrated earlier this month when Ban Ki-moon, the organisation’s secretary general, received an extraordinary letter from the Afghan foreign minister demanding radical changes to its mandate in the country. The government demanded that the UN close down many of its offices, limiting its presence to just “six recognised zones throughout the country.” The tragedy is that the UN had just started preparing for potentially greater risks to its staff in future, as the country starts a multi-year process of “transition” from Nato to Afghan security control. By the end of 2014, the entire country is meant to be in the hands of the Afghan National Army and its police force, with certain cities and provinces due to be transfer this year – including Mazar. But in a sign that they are not fully confident in Afghanistan’s security services, UN officers have been looking at ways to improve the safety of their staff in areas that are soon to be handed over. Even in Bamiyan, by far the most benign and anti-Taliban area in the country, which is also slated to be transferred away from Nato control this year, the UN has drawn up plans to move from the compound that has served it well for years to the other side of the town and a more secure area. It is the sort of development that is likely to further erode already rock-bottom morale among many UN staff who, over the last two years, have seen their freedom to operate drastically curtailed in the name of security. Today they live and work in increasingly fortress-like facilities and only see everyday Afghanistan through the thick glass of their armoured vehicles. Now things could get even worse, with many UN staffers predicting that – as with the aftermath of an attack on a Kabul guesthouse in 2009 that left five dead – many people might be sent out of the country altogether to work remotely for Afghanistan from Dubai. Writing on her personal blog in response to Friday’s attack, one aid worker called Una Moore said that the episode did not represent the beginning of the end of the international presence in Afghanistan; “this is the end,” she wrote. “Unless we, the internationals, want our guards to fire on unarmed protesters from now on, the day has come for us to leave Afghanistan.” Afghanistan United Nations Jon Boone guardian.co.uk

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Good news, tea lovers: You know all that water you’re supposed to drink every single day? Well, you can substitute tea for at least some of it, a new clinical trial shows. Despite the fact that tea is caffeinated, the study shows that four to six mugs of it per…

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A Seattle man who politely robbed a gas station with a pellet gun earlier this year didn’t get a reduced sentence. Gregory Paul Hess—who could be heard asking the station owner “Could you do me a favor? Could you empty that till for me, please?” on surveillance video—was…

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If you don’t want to see how many calories are in your meal you may have to start dining in bowling alleys and movie theaters. The Food and Drug Administration has released its proposal for adding calorie counts to menus next year and places that don’t serve food as their…

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Dhoni leads India to glory in Mumbai

Sri Lanka 274-6; India 277-4 India win by six wickets Relive the game with our over-by-over report The India captain Mahendra Singh Dhoni and his team-mate Gautam Gambhir pulled off an impressive run chase to beat Sri Lanka by six wickets in the World Cup final in Mumbai. The fourth-wicket pair ensured India did not panic in front of a capacity home crowd after the early loss of big guns Virender Sehwag and Sachin Tendulkar in pursuit of 274 for six. The favourites prevailed with 10 balls to spare in today’s showpiece between sub-Continental neighbours, both seeking their second World Cup, despite a wonderful 103 not out from Sri Lanka’s Mahela Jayawardene. The expectations of many were that this contest might be a tale of two champion players, at watershed moments in their record-breaking careers. But there was no major impact for Sri Lanka’s Muttiah Muralitharan on his last appearance for his country, or a 100th international hundred for India’s Tendulkar in his home town. Instead, with 97 for Gambhir and Jayawardene’s third World Cup century, three other world-class performers took centre stage in a contest just shaded by India. It was Dhoni (91 not out) who completed the job, after promoting himself to No5 and producing his first half-century of the campaign in a telling stand of 106 with Gambhir and then an unbroken 54 with Yuvraj Singh. He did it with crowd-delighting gusto too, smashing a six high over long-on off Nuwan Kulasekera for the winning runs. Cricket World Cup 2011 India cricket team Sri Lanka cricket team Cricket guardian.co.uk

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