Father with 10 brain tumours refused cancer drug has £33,000 treatment paid for by total stranger
So much for health insurance in Britain. You pay for it but collecting on it is another matter
The family of a man with 10 brain tumours say their prayers have been answered after a generous stranger agreed to pay for a life-prolonging drug denied to him by the NHS.
Father-of-two Glen Cunningham, 29, who suffers from a rare form of cancer called gliosarcoma, had been planning a fundraising mission after he was refused Avastin, a ‘wonder-drug’ which costs £33,500 per year.
But he now hopes to spend more time with his partner and young children after a property developer decided to donate the entire sum himself.
Kenny Vickers, 34, and wife Melody, 33, whose youngest son is fighting for life after being born prematurely, were touched by a report of Mr Cunningham’s plight in a local newspaper.
Mr Cunningham’s mother Patricia, 64, from South Shields, Tyne and Wear, said: ‘I misheard the amount, I thought it was £3,500, which in itself is fantastic, but £33,500? I am going to cry. ‘What can we say except our prayers have been answered.’
Speaking after Mr Cunningham and his family travelled to Sheffield for more treatment, his partner Yasmin Malik, 26, said: ‘I am honestly stunned. ‘I don’t quite know what to say. I never thought for one minute there would be people in the world as generous as this, it’s not sinking in.
‘Glen is still half asleep from yesterday, I don’t think he can believe it, we can’t thank this man enough for what he has done.’
Mr Cunningham, a plasterer from South Shields, Tyne and Wear, hopes the drug will shrink his tumours, two of which are inoperable, and extend his life, giving him more time to spend with daughter Lauren, seven, and a 10-month-old son, also named Glen.
South Tyneside Primary Care Trust (PCT) had said there wasn’t enough evidence the injections, which are licensed by the Government, would help him.
Mr Vickers, of the Isle of Skye, also has a home in South Shields and read of Mr Cunningham’s predicament in their local newspaper, the Shields Gazette. He said he and his wife were in ‘floods of tears’ at Mr Cunningham’s circumstances. ‘We are lucky enough to be quite comfortable financially and so we would like to give Glen the chance to see his children grow up and spend more time with them,’ he added.
‘To me life is everything and very precious, and I want to give Glen the quality time he deserves with his family.’
But Mr Vickers, a father of seven, is also facing a troubled time in his own family. His youngest child, 10-week-old Preston, is fighting for life after being born 14 weeks prematurely, weighing just 1lbs 11.5 ozs and is in South Tyneside District Hospital’s Special Care Baby Unit.
Preston has suffered from two holes in his bowel, plus a double hernia and needs further surgery at Newcastle’s Royal Victoria Infirmary on Thursday.
Mr Vickers said: ‘We have children and we know how difficult it can be, especially at the moment, so we know what it’s like to be going through hard times. ‘We wish Glen and his family the best of luck and we just hope our gift will help. ‘If he needs anything else, all he has to do is ask.’
South Tyneside PCT told Mr Cunningham last week that it was not prepared to pay the £33,600 a year it would cost for him to receive a course of twice-monthly injections. He then began planning a fundraising campaign, claiming it was his ‘last chance’, but Mr Vickers’s intervention means he can be treated even sooner.
Mr Cunningham was diagnosed with cancer in December 2006 after he suffered a seizure. During 2007 he endured chemotherapy, radiotherapy and surgery, and was delighted when he went into remission.
Three years later, in September 2010, doctors discovered the tumour had returned and Glen found himself facing further surgery.
When the cancer came back yet again at the start of 2011, Mr Cunningham went through gamma knife – a special type of brain radiation treatment.
The difficulties surrounding the drug Avastin relate in part to the fact that, while it can be legally prescribed in the UK, it has not been approved for use by the National Institute for Health and Clinical Excellence (NICE) – which gives advice on which drugs should be made available to the NHS.
NICE, which weighs up the relative costs and benefits of drugs, believes Avastin is too expensive based on the benefits it provides.
From 2014, the Department of Health plan to bring in a new system called ‘value-based pricing.’ Under the plans, groups of GPs will decided whether a drug should be funded or not rather than the medicines watchdog NICE.
Ministers hope this will help to make new drugs affordable through direct price negotiations with pharmaceutical companies. NICE will continue to give advice on which drugs are effective.
NHS managers set aside just 10p a day for dementia patients
As little as 10p a day is being set aside by NHS managers to treat each patient with dementia, an investigation has revealed.
Three quarters of health trusts have refused to increase the amount they spend on dementia care despite orders by the Government that it should be made a priority.
This includes one primary care trust, Nottinghamshire County, which has admitted it devotes just £38 a year to every patient with the devastating illness – little more than 10p a day.
The investigation also revealed huge differences in the amounts of money PCTs set aside for dementia patients. A total of 22 trusts admitted they will spend less than £100 per patient for this financial year – less than 30p a day.
At the other end of the scale however, NHS Barnsley is devoting £800 per patient for this year – eight times more than the lower-spending trusts.
The figures emerged as a charity described the health service’s dementia care as an ‘embarrassment’ and a ‘recipe for disaster’.
The NHS is meant to prioritise dementia sufferers, putting them on an equal footing with those suffering from cancer and heart problems.
Every PCT has been given extra funding to invest in services to improve diagnosis and treatment.
But Freedom of Information requests issued to 56 trusts by GP magazine have revealed that three quarters have not increased the amount they set aside. This includes 10 per cent – six trusts – which actually cut their spending last year.
Five PCTs also admitted they still do not have a dedicated memory clinic to diagnose the illness.
There is concern that without these vital services GPs will not be able to diagnose patients properly and refer them for the treatment and care they need. Louise Lakey, policy manager for charity the Alzheimer’s Society, said: ‘For people with dementia, early diagnosis is the key to unlocking access to support services and potential treatments which can help them lead a fuller life.
‘Local memory services play a crucial role in making this happen, so the postcode lottery must improve. Increased investment in memory services would also benefit GPs, giving them somewhere that they can refer people for a formal diagnosis and further information.’
Around 750,000 Britons are thought to have some form of dementia, such as Alzheimer’s, with 400,000 of them yet to be diagnosed.
Today a leading expert in global diseases, Professor Peter Piot, will tell a conference in London that dementia is ‘one of the largest neglected global health challenges of our generation’.
Jeremy Hughes, chief executive of the Alzheimer’s Society, said: ‘In the UK the way we fail to deal with dementia is a recipe for disaster. Just 40 per cent of people have a diagnosis and the Government invests eight times less in dementia research than cancer. ‘Our health system should be a model for other countries rather than an embarrassment.‘
A Department of Health spokesman said last night: ‘It is up to local areas to decide how to fund dementia services but we have made clear that it should be a priority.’
A quarter of care home patients are not given the choice between a male or female assistant if they need help going to the toilet. It means a quarter of women with continence problems in the care system may have had to accept help from a man against their will.
The study, by regulator the Care Quality Commission, also found a third of residents are given no help over how their continence problems are dealt with.
Key dates from history that every British pupil should know: Cambridge don says GCSEs should embrace ALL of the nation’s past
Thirty-one key events in British history that all teenagers should study were outlined yesterday by a leading historian.
The dates cover the sweep of British history from the Dark Ages to the present day and include events such as the signing of the Magna Carta in 1215, the 1649 execution of Charles I and the abolition of slavery in 1833.
Professor David Abulafia, of Cambridge University, said current GCSE studies were disjointed and ‘deadened interest in the past’.
He also pointed out that the exams reward pupils who memorise and regurgitate mark schemes and penalise youngsters who try to demonstrate originality and insight.
Instead he proposes a curriculum which encompasses the nation’s story – and requires exam candidates to write at length.
There is evidence that a generation of university students – including those starting at Cambridge – have lost the ability to write essays.
The professor’s proposed curriculum – produced for the think-tank Politeia – will be submitted to a major review launched last year by Education Secretary Michael Gove. The Government is considering introducing a new curriculum for history and other subjects in September 2014.
Criticising the current syllabus, Professor Abulafia, an expert in Mediterranean history at Gonville and Caius College, said: ‘The lack of continuity is a fundamental problem. ‘What one actually wants is a sense that things join up, a sense of context.’
Under current GCSEs, pupils might jump between units such as Elizabethan England and Germany 1919 to 1945. Units covering a historical sweep often focus on a specific theme, such as ‘Medicine through Time’.
The professor said pupils were too often required to interpret sources instead of studying history itself. This had ‘deadened interest in the past among students’, he said.
His proposed curriculum – published yesterday in draft form – ensures ‘continuity across long expanses of time’. Linked to each event, or ‘transformational moment’, are studies of key people, places and innovations.
Pupils studying the 1066 Norman conquest, for example, would learn about the role of William the Conqueror and might visit the Tower of London. This could act as a spur to learn about the Domesday Book.
Professor Abulafia added that exams also needed reform because some candidates learn mark schemes ‘by heart’. ‘That is not what education is about,’ he said.
‘Writing essays involves making judgments. At the moment examiners don’t know how to cope with judgments. All they seem to know how to cope with is very exactly and precisely placed bits of information.
‘A very important part of any examination even at GCSE level – and you might only be talking about a couple of sides of script – is to be able to present a connected argument and to do it independently.’
Professor Robert Tombs, also a Cambridge University historian, said students appear to have been drilled to write essays in a particular way, making particular kinds of arguments in a particular order, and not writing their own ideas and responding to questions in a fresh or original way.
Politeia is planning to publish curriculum pamphlets written by academics on different subjects, beginning with history, later this month. Professor Tombs, of St John’s College, who is also working on a curriculum proposal, criticised current arrangements.
He said: ‘A curriculum ought to be coherent and not just miscellaneous. It shouldn’t be the sort of thing that enables you to know about Hitler and not Mussolini or Stalin.’
John McIntosh, who was head of the London Oratory School when it was attended by two of Tony Blair’s sons and now sits on the advisory committee of the Government’s curriculum, warned: ‘I find that teachers have become increasingly robotic, they have worked slavishly to the prescribed curriculum.’ ‘A lot of the teaching is simply the minimum required for whatever the next test or examination will be,’ he added.
Drug could treat arthritis by stopping immune system from attacking joints
A drug that could ‘stop arthritis in its tracks’ is being tested in a British laboratory. In ‘very exciting’ but early-stage tests, the drug prevented the inflammation responsible for the pain, swelling and stiffness of rheumatoid arthritis.
Much more work is needed but the research could lead to an effective and inexpensive way of treating the condition that affects 350,000 Britons. The disease causes chronic pain and inflammation in affected joints, and is triggered when elements of the immune system attack the body.
White blood cells known as T-cells are integral to the process.
Study leader Dr Graeme O’Boyle, from the University of Newcastle, said of the research development: ‘Imagine that the damaged joint is covered in flags which are signalling to the white blood cells. ‘Traditional treatments have involved pulling down the flags one by one, but what we have done is use an agent which in effect ‘blindfolds’ the white blood cells. ‘Therefore, they don’t know which way to travel and so won’t add to the damage.’
The research was funded by the charity Arthritis Research UK, and published in the journal Proceedings of the National Academy of Sciences.
Using tests on a genetically engineered mouse with a human-like immune system, the team discovered that a compound called PS372424 blocked the ability of T-cells to invade joints.
Only the white blood cells implicated in rheumatoid arthritis are affected, meaning there is no wider suppressant effect on the body’s immune system.
Professor Alan Silman, medical director of Arthritis Research UK, said: ‘Although modern treatments have changed the outcome for many patients with rheumatoid arthritis, firstly not all patients respond to them and secondly, even in those patients who do respond in some way, we can’t completely get rid of the inflammation that damages their joints.
‘This research is very exciting, as although it is in its early stages, if it can be transferred to humans it could shut down the inflammation that causes rheumatoid arthritis.’
Work will now be conducted to improve the drug-like properties of PS372424 with a view to preparing it for clinical trials.
The war on workfare in Britain is worse than workfare itself
The pity and tears of the anti-workfare lobby are far more insulting to working-class youth than asking them to stack shelves in a British supermarket
As a radical leftist of some years’ standing, it pains me to point out the following: we are rapidly entering a new era in Britain in which radical protests against government austerity measures are more reactionary than anything proposed by the government itself.
We saw it with the debate around the National Health Service, where the clumsiness of the Lib-Cons’ cash-saving reforms were more than outdone by the conservatism of the left-wing anti-reformers, who think a moral forcefield should be erected around the creaking, increasingly authoritarian NHS. We saw it in the debate about having a household benefits cap of £26,000, where the government’s naivety about how to roll back the recession was overshadowed by the cynicism of liberal campaigners begging unelected bishops in the House of Lords to mow down any tweaks to modern welfarism. And now we see it in the controversy over workfare, where the fact that this initiative is far from perfect pales into insignificance when compared with the patronising politics of pity and vicarious workshyness of its influential opponents.
Introduced by the Lib-Cons in January 2011, the welfare-to-work programme, or ‘workfare’, is a voluntary scheme for people aged 16 to 24 who have been unemployed for three months or longer. The government, in tandem with big corporations like Tesco or Burger King, provides these youth with placements, where they work for 25-30 hours a week for a period of two to eight weeks. They don’t get paid an actual wage, but they continue to receive their jobseeker’s allowance and possibly some additional travel and childcare costs. Theoretically, anyone who opts out of a placement can have their benefits cut, though according to the government, out of the 34,200 people who did workfare between January and November 2011, only 200 had their benefits docked.
That’s it. It is hardly the best government job-creation scheme in history, yet nor is it ‘slave labour’, as its historically clueless critics claim, some of them even turning up at Westfield shopping centre in London dressed in Dickensian garb with placards saying ‘Westfield Workhouse’ and ‘Say “No” to slave labour’. Perhaps if these people spent more time reading Oliver Twist rather than doing am-dram versions of it on the streets of West London, they would know that asking a 19-year-old to spend a few hours serving sausage rolls in a Greggs bakery is not quite the same as the system of exhausting child labour that existed in the past.
Of course, there is much that can be criticised about the workfare scheme, primarily the impact that it could have on the existing working population. By subsidising the supply of effectively free workers to massive retail outlets and other workplaces, the government is potentially isolating and even threatening the positions of those members of staff who got their jobs by their own volition and who currently must (and should) be paid a full-time wage. Rather than work so closely with big businesses, which are driven primarily by a desire to cut costs and boost profits, it might have been better for the government to set up and fund proper apprenticeship schemes and social-based work projects, which would allow unemployed youth to get a taste of the world of work without coming into conflict with actually employed workers.
However, the noisy and shrill critics of workfare are attacking the scheme for all the wrong reasons – not on the basis that it might harm existing workers, but on the basis that it is somehow harmful to ask unemployed yoof, those apparently fragile creatures, to work in return for some of society’s resources, for the monies they currently receive from the state. This can be seen in the widespread use of the terms ‘unpaid labour’ and ‘slave labour’, which overlooks the fact that these young people are actually being rewarded for their short bursts of work (in the form of small benefit payments from the state, which are not as good as a full wage, of course). And it overlooks the even more important fact that sending young people the alternative message – that they should receive these resources in return for nothing, in return for never working – is a far more dangerous and destructive thing than a scheme pressuring them to do some shelf-stacking in Tesco.
The small but influential middle-class anti-workfare lobby, which has already successfully pressurised Tesco, Burger King and others into withdrawing from workfare, seems incapable of thinking through the consequences of its arguments and its actions. It seems not to recognise that fighting to preserve a situation in which huge numbers of young people have their bodies and souls sustained by the state is not a ‘good fight’. On the contrary, it is a fight which is likely only to exacerbate young people’s dependence on external favour and patronage rather than on their own inner drive and ambition, and which will further tie youth into an unhealthy relationship of reliance with the state. In the long term, this will have a far more damaging impact on them, on their capacity for social solidarity and on their individual self-respect, than workfare ever could.
It is in fact entirely reasonable to expect able-minded, able-bodied people, anyone who is not a child or disabled or sick or old, to do something in return for resources, to make some practical, real-world contribution to their communities or the running of society. Of course, it would be ideal if they could be provided with gainful and fruitful employment, but where that is not possible it is quite legitimate to request that individuals contribute to the upkeep of their communities in return for monetary sustenance. This is especially the case with the young, with people who are loosening their ties with their families and entering for the first time into proper social and community life. Absolutely the worst thing society could do for this section of society – for the 16- to 24-year-olds whom workfare is aimed at – is communicate to them the idea that society will sustain and reward you for doing nothing, for simply existing.
The impact of that message on youth is likely to be dire: it will inflame today’s already existing culture of entitlement, and further alienate youth from both their communities and their peers, encouraging them to suckle at the teat of the state rather than to use their own resourcefulness to strike up relationships with people and institutions in their communities. At precisely a time when young people should be showing initiative, taking risks, ‘getting on their bikes’ perhaps, venturing into the unforgiving world and making a niche or a name or just a living for themselves, they are instead encouraged by the welfare statists of the modern liberal elite and the anti-workfare lobby to stay home, wait, be sustained by external actors. The healthy pressure of economic need is replaced by the soul-zapping sustenance of the state’s largesse. It might even be an idea to withdraw benefits from the 16- to 24-year-old age bracket entirely, apart from to those who are disabled or who have children to care for, in order to demonstrate how seriously society takes the exercise of self-drive and risk-taking amongst the young.
None of this, none of the consequences of entangling large sections of youth into a deadening relationship with the state, crosses the minds of the anti-workfare activists. That is because these campaigners – well-fed, middle-class, utterly removed from the condition in which many working-class young people find themselves today – relate to these people’s problems entirely through the vicarious prism of pity rather than through the lived and shared political category of solidarity. Viewing working-class youth more like lobsters in a restaurant tank whom they want to save rather than individuals capable of fighting and striving for work and a better life, they employ that most self-flattering, luxuriant emotion known to man – pity, the aloof projection of a highly condescending sorrow on to people of whom they know little. And as that ancient proverb says: ‘Friends help; others pity.’
That should be the motto of self-respecting working-class youth in modern Britain: ‘Friends help; others pity.’ They should reject the patronising assistance offered by the welfare state and its thoughtless, well-off cheerleaders and instead turn to ‘friends’ – family, peers, colleagues, communities – for opportunities and tips and the kind of proper, face-to-face moral sustenance that can never be provided by a faceless bureaucrat. That would be better than falling deeper into the system of what we might call ‘vicarious workshyness’, where it is patronising outsiders who now seek to convince working-class youth that they should be shy of work, afear’d of it, because it might be asking too much of them and it might damage their self-esteem. Yes, there is something Dickensian in the workfare debate, but it isn’t that workfare is like the workhouse – it is that the critics of workfare are driven by the same priestly moralism and ‘Good Tory’ desire to save the downtrodden that afflicted rather too many of Dickens’ characters.