Bereaved family calls for change in the law after teenage daughter died when she was denied cancer drugs

The family of a teenage girl who died after she was refused access to potentially life-saving cancer drugs has called for a change in the laws governing who can take part in medical trials.

Chloe Drury was told she was too young to take part in the drugs trials by American pharmaceutical company BioMarin while she was suffering from a rare form of bone cancer, despite pleas from her parents, doctors and politicians.

She died in February, a month after her 18th birthday, from Ewing’s Sarcoma after the cancer had aggressively progressed.

The previous September, when she was 17, she was told she could not take part in the trials as it could ‘jeopardise [her] safety and the integrity of the trial data’, her family have told Sky News.

Chloe, from Purley, in Surrey, was allowed on the course when she turned 18, but by then it was too late.

Her mother Debbie Binner told Sky News: ‘We were just sitting there watching our beautiful 17-year-old daughter get weaker and weaker, knowing there is something out there she could have had and it just seems totally wrong to me, and not a world that I want to live in that treats young people like that.’

The family now wants age restrictions to be lifted for trials.

In a statement, BioMarin has said their deepest sympathy went to the parents.

The company said: ‘It is precisely because of patients who suffer from devastating rare genetic diseases that BioMarin develops therapies where there are few, if any, options.’

The company said it was conducting a trial in several genetically defined cancers, but it added: ‘It is premature to know if it is safe or effective.’

Cancer Research UK’s clinical research director Kate Law said the guidelines did not always make sense and sometimes stopped teenagers taking part. She said for many trials there was ‘no good reason’ for the restrictions.

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Lack of communication across NHS is “completely shocking”, says Health Secretary

The lack of communication across the NHS is “completely shocking”, the Health Secretary said yesterday as he disclosed that 11 people died last year after being given the wrong medication.

Highlighting the benefits of sharing data across the health service, Jeremy Hunt said that most NHS users would be “astonished” that their information does not regularly pass between GPs and hospitals.

Mr Hunt said that none of the big challenges facing the NHS can be resolved unless the health service becomes “more ambitious and enlightened” about sharing information.

Speaking at the Delivering a Paperless NHS conference in London, Mr Hunt said: “If you look at the big challenges facing the health service with an ageing society – things like the A&E departments that I spoke of yesterday, the problem with joined up services, the issues of patient safety and compassionate care that came into the Francis review – none of those issues are going to be resolved unless we take a much more ambitious and enlightened view as to the power of information.

“In many hospitals the IT systems aren’t even linked within a hospital, let alone between hospitals and other parts of the health economy. That’s I’m afraid a fairly normal situation across the country.

“Eleven people died last year in the NHS from being given the wrong medication.

“This is a really important part of the compassionate care agenda, the safety agenda, the integration agenda.”

He added: “A few weeks ago I was in the A&E department at Watford and they admitted a lady there with late-stage dementia from a care home. I was completely shocked to see that they knew absolutely nothing about her. She was wasn’t able to speak and she had bruises all over her face but they didn’t know for example whether that was her normal state not to be able to speak or whether that was a result of her fall , they didn’t have her medication, medical history, anything like that. “That simply cannot be in people’s interest to have those gaps in information.”

He added that there must be “proper” safeguards in place to protect patients’ personal information, adding: “That’s why I have agreed that GPs will not share information about what’s on people’s GP records with the Health and Social Care Information Centre if people object. There will be some overrides but only in situations like a public health emergency or in life or death situations or child abuse.

“Essentially, people will have a veto on that information being shared in the wider system.”

Mr Hunt’s comments followed the publication of Dame Fiona Caldicott’s review into how NHS data is handled.

Dame Fiona highlighted a number of problems about the way information is handled within the health and social care system in England. Her report says that people’s lack of access to their own records causes “great frustration”.

She recommended that all letters, emails, and other communications that health and social care teams make regarding a patient’s care should be replicated for the patient.

The report also says that some NHS managers are “unduly restrictive” with information for fear that their organisation will be fined for breaching data protection laws.

Mr Hunt has previously set out ambitions to make the NHS “paperless” within the next five years.

He also said that GPs should make patient records available online by 2015.

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Schools should exclude children who have not had MMR jab, says leading scientist

Sounds fair. Ignoramuses should not be allowed to endanger other people’s kids

Schools should have the right to refuse access to pupils who have not had the MMR jab, a leading scientist has said.

Biologist Dr Craig Venter said that vaccinations should be made compulsory for children who wish to attend school and benefit from the NHS.

His statement comes after health officials have launched a new programme to help stem the measles outbreak in South Wales and stop it spreading more widely across the UK.

Dr Venter was the first scientist to successfully sequence the human genome as well as create a cell with an artificial genome.

‘People think they’re making individual decisions for themselves and their family not to get vaccinated,’ Dr Venter told The Times. ‘It’s not just an individual choice, you’re a hazard to society.’

He said that unvaccinated individuals are putting the population at risk.

The number of people infected with the virus in Swansea in now approaching 900. The city has been left especially vulnerable to measles since the 90s, when a local newspaper campaigned against the MMR vaccine.

There are now concerns the outbreak could spread to London.

David Salisbury, director of immunisation at the Department of Health said: ‘What happened and continues to happen in Swansea could happen anywhere in England.

‘I worry about London. It’s a fast moving group of people, with new families coming in and families moving out. It is harder to track immunisation status. Historically there is also a legacy of poorer immunisation.’

Health officials announced today that at least a million children and teenagers are to be vaccinated against measles in an attempt to stop expected outbreaks in England.

Some will never have had a jab, while others have only had the first of two doses of the measles, mumps and rubella (MMR) vaccine.

Many of those affected are teenagers who missed out on vaccination in the late 1990s and early 2000s when parents were concerned about a link between MMR and autism that has since been discredited.

Dr Venter also warned that low vaccination rates raised the prospect of circulating infections mutating into new forms. This could lead to current vaccines no longer offering protection, and putting the entire population at risk.

‘Strains that could not develop in a population that was vaccinated could mutate and affect everybody whether they have been vaccinated or not,” he added.

The Department of Health said increased vaccine level were proof that Dr Venter’s proposal was unnecessary, arguing that it risked alienating parents.

However Dr Venter’s call for a mandatory vaccination was supported by Rino Rappuoli, global head of vaccines research at Novartis Vaccines and Diagnostics.

The two scientists were speaking yesterday at a House of Commons event to raise the profile of the first approved vaccine for Meningitis B, which they have jointly developed.

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Education vouchers not implemented in Britain

Regrettably, one of the most sensible, pragmatic, and consequentially sound policy ideas of our time has never made it into policy – the education voucher.

The best version would be an education voucher, distributed annually to parents for each child, to be redeemed at any school of choice. In some cases, it would cover the full cost of a year’s tuition, in others, it would contribute to the cost with the parent topping up the remainder. The purpose of implementing a voucher is twofold. Firstly, it would provide an introduction of free-market practices to the sector, without being so radical as to be a complete privatisation.

It retains the element of public sector provision that would prevent an outcry – so-called “free” provision, whilst enabling the positive consequences that would speak for themselves, and remind the populace that a sector can be productive, successful and efficient without government intervention. Correctly applied across, it could pave the way for the gradual but meaningful movement towards a more economically-free society.

Secondly, the policy would reinforce the choice element of demand. The government would not be permitted to stipulate which institutions the vouchers could be used at, only which child is to be registered for education. New private schools could establish themselves as educational institutions and accept the vouchers as full payment, providing direct competition with the state alternatives. Like other private schools, they would have the ability to earn profit, and so new entrants would enter the market if they felt they could favourably compare both financially, and qualitatively, with the incumbent state comprehensives, whilst turning a profit. They undoubtedly could.

The idea of parents being allowed to choose schools due to location (“catchment area”) would be replaced by a business ethos – accepting parents and children, rather than turning them away based on their postcode. It would challenge the state-dominated status-quo.

Just like with most other service areas, people choose to purchase what gives them the most for their money. Educational quality is easier to measure than most, given as “quality” is based on exam results and league tables; this information about a school’s achievements is readily available from numerous sources.

There’s no reason for the State to maintain an iron-grip over how our children learn. Slowly, we can move to a situation where families choose and pay for the education provision themselves. This is the first step to getting there.

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Wind turbines ‘could allow enemy jets to sneak into British airspace’

The Ministry of Defence is fighting plans for two giant wind turbines over fears the towers could mask enemy jets entering British airspace.

Officials at the Ministry of Defence say the 115ft towers are so big they could look like planes on monitoring equipment.

The MOD say radar could classify the turbines as a threat – automatically sending in fighter jets to investigate and allowing real enemies to sneak in.

They say the green energy devices would confuse computer systems designed to protect the UK – and don’t want them put up.

Plans for the turbines have been submitted by Richard and Ian Lobb, who want to install the 50kW towers on their neighbouring farms in St Ewe, Cornwall.

But their application prompted a written objection from the MoD which warned the installation would cause “unacceptable interference” to an air traffic control (ATC) radar 30 miles away in Wembury, Devon.

Radar operators have to treat any unidentified object as a genuine threat – and could even have to scramble fighter jets to investigate.

Their objection said: “Wind turbines have been shown to have detrimental effects on the performance of MoD ATC radars.

“These effects include the desensitisation of radar in the vicinity of the turbines, and the creation of ‘false’ aircraft returns which air traffic controllers must treat as real.

“The desensitisation of radar could result in aircraft not being detected by the radar and therefore not presented to air traffic controllers.”

MoD chiefs said controllers relied upon accurate radar readings to distinguish between military and civilian aircraft.

Their letter added: “The creation of ‘false’ aircraft display on the radar leads to increased workload for both controllers and aircrews and may have a significant operational impact.

“Furthermore, real aircraft returns can be obscured by the turbine’s radar returns, making the tracking of conflicting, unknown aircraft much more difficult.”

The wind farm proposal has also provoked opposition from locals who say the towers will be a blot on the picturesque Cornish landscape.

Graham Chaplin, who owns a smallholding near the proposed site, has collected signatures of 109 villagers calling on Cornwall Council to reject the plan.

He said: “The turbine will really be right on top of us. It’s so close that we are going to suffer from noise pollution. But what’s more worrying is that there is a public safety issue with these turbines.

“The MoD clearly says that operators cannot assume that it’s just the wind turbine. They have to deal with it as if it was a real problem.”

Cornwall Council is due to report back on the application by May 13.

A spokeswoman said the council does not comment on undecided applications.

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EU tells Britain: Make it easier for jobless migrants to find work

Brussels has demanded that Britain makes it easier for the unemployed from other European Union countries to find jobs here.

The EU Commission said that while some states suffer `much higher’ levels of unemployment, the rest of the EU should open their doors and help.

It wants new rules to force the Government to better advise migrants about their rights. They would also make it easier for unions and migrant groups to launch legal action if they think foreign workers are suffering discrimination.

The intervention put the EU Commission on a collision course with David Cameron, who yesterday said the Government will legislate to make it harder for EU migrants to come to Britain and claim benefits.

Downing Street sources said the measure would be included in the Queen’s Speech. Mr Cameron’s aim is to prevent a sudden influx to the UK when EU migration restrictions for Romanians and Bulgarians are lifted in January.

In Britain, 4.8 per cent of the labour force – 1.4million people – is already made up of migrants from other EU nations. This compares with 4 per cent in Germany, and just 2.4 per cent in France.

Demanding greater help for migrant workers, the EU employment and social affairs commissioner Laszlo Andor said: `The free movement of workers is a key principle of the EU’s single market.

`With much higher levels of unemployment in some member states than others at the moment, it is all the more important to make it easier for those who want to work in another EU country to be able to do so.’

He added that `there is no evidence that migrant workers take jobs away from host country workers’.
Mr Andor, a Hungarian economist, will now seek approval from the European Parliament and the EU’s council of ministers for his plan.

A spokesman for the British government said: `This is just a proposal, but we will forcefully resist any attempt from Europe to load additional burdens onto countries like Britain.

`We are already taking action to stamp out the abuse of free movement, to protect our benefits system and public services; we will not allow this country to be a soft touch.’

Tory MP Philip Hollobone said: `The European Commission has shown once again how out of touch it is with popular opinion in this country. It seems the Commission now thinks one of its responsibilities is to share round Europe unemployment between member states – including to Britain, which is not a member of the euro.’

Sir Andrew Green, chairman of MigrationWatch UK, said the plans `pay no attention to the implications for the northern European countries, especially Britain, which already have historically high unemployment’.

The Commission’s intervention comes at a time of soaring unemployment in the countries worst hit by the euro crisis. In Spain, the number of jobless this week increased to more than six million – or 27.2 per cent of the workforce.

This week the Mail revealed how Britain was leading a drive for the EU to tighten rules on free movement, warning that migrants from other member states are putting `considerable strain’ on schools, healthcare and the welfare state. The EU Commission says migration has a positive impact on the economy of member states. It claimed that Britain opening its borders to eight members of the former Eastern Bloc, including Poland, had boosted GDP by 1.2 per cent between 2004-2009.

However, it stressed that `barriers and discriminatory practices’ were still common for migrant workers.

SOURCE

Clegg Kills U.K. Data-Monitoring Bill on Liberty Concerns

U.K. Deputy Prime Minister Nick Clegg killed off plans by David Cameron’s Conservatives to monitor data from phone calls and e-mails, citing concerns about civil liberties, as Parliament prepared to end its current session.

Conservative Home Secretary Theresa May was pushing for adoption of the Communications Data Bill after police and intelligence agencies sought powers to collect information showing the time, location and duration of a mobile-phone call or the existence of an e-mail. Civil-liberties campaigners said the proposals were too intrusive and put ordinary people at risk of being spied upon.

“What people dub the snoopers’ charter, that’s not going to happen — certainly with Lib Dems in government,” Clegg told LBC radio today. An aide to Clegg, speaking on condition of anonymity in line with government rules, said no new version of the bill would appear when the next parliamentary session begins on May 8.

The move shows Clegg flexing his muscles against his Tory coalition partners before local elections next week and with national elections two years away. Prime Minister David Cameron mirrored that strategy for his own party by appointing a new team this week to focus on Conservative policy.

SOURCE

More black on black violence in Britain

A 15-year old boy has been charged with the murder of a teenager stabbed to death on a bus.

Derek Boateng, 16, was attacked in broad daylight on the 393 bus in Highbury New Park, north London, at around 3pm on Tuesday. He was airlifted to hospital but died yesterday.

A police spokesman said: ‘The 15-year-old boy from Havering will appear in custody at Highbury Corner Youth Court accused of the murder of 16-year-old Derek Boateng.’

Police say Boateng, who has three older sisters, was attacked following a row with another teenager. It was the fifth stabbing of a teenager in London in the past four days.

The London Air Ambulance landed on Highbury Grove School’s Astro Turf pitch and airlifted the teenager to hospital in east London where he died yesterday.

Today, his devastated sisters paid tribute to the little brother they described as ‘always laughing’ and revealed his birthday presents are still lying unopened at the family home in nearby Hackney.

Derek’s oldest sister Gifty, 29, said he was ‘best brother in the world.

She told the Evening Standard: ‘I could not have had a better brother.’ Earlier, she told how Derek was doing his GCSEs and wanted to be an engineer.

He said: ‘He just fixes stuff, like things you can’t figure out he comes to do.

‘He paints and plays the drums – he was very artistic. He had a lot of friends and knew a lot of people around the area and had friends from primary school still. We are completely devastated and still in shock.’

Another of his siblings, Linda, 25, said: ‘All we know is that he was on a bus by himself. He normally gets the train.

‘From what we know, he was going to meet his friend at Highbury Grove when it happened.

‘He was always laughing, everything was a joke. You can’t even tell him off because he just started laughing at you.

‘He was stabbed on his birthday on the 23rd and died the day after. He was coming home to his presents, he hadn’t even opened them yet.’

She added: ‘You hear about this sort of thing all the time and never think this is going to come to you.

‘Knives are for the kitchen. Put the knives away, just concentrate on your education. They have left the family very devastated.

‘I don’t think they understand what they are doing. The guy who did it is probably really scared because they don’t understand what they have done. ‘It’s ridiculous. Killing someone and going back to your group doesn’t make you cool.’

More than 2,000 people have paid tribute on Facebook to a murdered teenager who died the day after being stabbed on his sixteenth birthday.

Derek Boateng, who wanted to be an engineer, was fatally stabbed on a 393 bus on Tuesday afternoon. He died in hospital last night.

And now more than 2,700 people have flooded a tribute page set up for the tragic youngster – known as Ddot – on Facebook.
Trawling the streets: Police search gardens, bins and drains close to the scene where Derek Boateng was stabbed on a bus in Highbury, London

Sheree Wright said: ‘Rest In Perfect Peace, I Know The Streets Are Tough But I’m Disgusted That Young Boys & Girls In This World Think They Can Play God & Take Someones Life! Too Many Mothers Are Burying Their Babies.

The teenager was said by locals to be a former student at Highbury Grove School.

Police were called on Tuesday afternoon and the victim was rushed to hospital in a critical condition but he succumbed to his injuries yesterday evening.

Nearby residents said the boy was stabbed by a black teenager, aged around 16, who was wearing a baseball cap and who also pushed a passenger to the ground before running off through the nearby Spring Gardens Estate.

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Brit forced to apologise after describing severely disabled boy as a ‘vegetable’

Given the severity of his handicaps, “vegetable” would seem a reasonable quick description. And anything on Twitter has to be short

The son of an MP has been forced to apologise after describing Katie Price’s disabled son as a ‘vegetable’.

Ian Lavery Jnr, 24, cracked a sick joke on Twitter about ten-year-old Harvey and made a crude reference to his mother.

Last night, Price, 34, blasted the pair and claimed the joke should be treated as a hate crime like racism.

The model told The Sun: ‘This makes me sick to my stomach. Not just that someone could be so vile as to say such a thing, but also could think it clever to repeat to the world on Twitter.

‘What kind of father, what kind of MP, is Ian Lavery?

‘These disgusting comments aimed at Harvey all too often get aimed at other disabled children and the poor souls his father’s charity rightly campaigns for.’

Harvey was born with septo-optic dysplasia, which causes blindness and growth hormone deficiency and also suffers from Prader-Willi syndrome, which can lead to obesity and diabetes.

Ian Lavery Jnr, from Newcastle, reacted angrily with a string of expletives when he was first challenged on Twitter about his comments.

But today he told MailOnline: ‘I unreservedly apologise for any offence that I have caused Katie Price and her family.

‘I am ashamed that my actions have caused such distress, to my father, especially given how strongly he campaigns for disabled rights.

Source

Depicting suicide is a no-no

Even if you depict it as failing

HYUNDAI has apologised for a commercial that shows a man trying to kill himself by piping emissions into his car.

The 60-second ad was intended to be used in the UK, and shows the suicide bid failing because the ix35 SUV model used – a fuel-cell model – does not produce harmful emissions.

Hyundai said it did not order or approve the “offensive” ad, and apologised for it appearing, carsguide.com.au reports.

“Hyundai Motor deeply and sincerely apologises for the offensive viral ad,” the Korean car maker said in a statement.

“It runs counter to our values as a company and as members of the community. We are very sorry for any offense or distress the video caused. More to the point, Hyundai apologizes to those who have been personally impacted by tragedy.”

The ad sparked outrage after it went viral.

Source

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About jonjayray

I am former member of the Australia-Soviet Friendship Society, former anarcho-capitalist and former member of the British Conservative party. The kneejerk response of the Green/Left to people who challenge them is to say that the challenger is in the pay of "Big Oil", "Big Business", "Big Pharma", "Exxon-Mobil", "The Pioneer Fund" or some other entity that they see, in their childish way, as a boogeyman. So I think it might be useful for me to point out that I have NEVER received one cent from anybody by way of support for what I write. As a retired person, I live entirely on my own investments. I do not work for anybody and I am not beholden to anybody
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