NHS won’t pay for treatment that could keep breast cancer victim alive
A woman dying of breast cancer has been denied the only treatment which could prolong her life because the NHS deems it too expensive. Suzanne Lloyd, 43, has been refused a vital course of radiotherapy currently banned by NICE, the rationing body, even though it could extend her life by several years.
In a further devastating blow, she has been told that the Government’s emergency cancer fund will probably not meet the cost as the treatment is not a drug – it is a form of therapy. The Coalition has pledged to set aside £50million for any drug recommended by a doctor or cancer specialist, even if it has been rejected by NICE, the National Institute for Health and Clinical Excellence.
Former PR consultant Mrs Lloyd, from Deal, Kent, is suffering from advanced breast cancer which has spread to her liver. Her last hope is Selective Internal Radiation Therapy (SIRT), in which tiny radioactive beads are injected into the artery which supplies the cancer. Doctors say that on its own the treatment, which costs £23,000 for a single dose, could give her at least an extra 14 months of life.
But it could be extended even further – possibly by two more years – because once the tumour has shrunk to a certain size, other treatments could be used successfully.
Despite doctors’ recommendations, her local primary care trust, Eastern and Coastal Kent, has refused to fund it. She said: ‘The PCT has said I can’t appeal against the decision so I just don’t know what to do.’
Mrs Lloyd’s case highlights the postcode lottery for cancer treatment across Britain. NICE does not approve SIRT for advanced forms of breast cancer, even though it is paid for by 40 health trusts in Britain.
Mrs Lloyd, who lives with husband Peter, 49, was diagnosed with breast cancer in 2001. She has stayed alive through chemotherapy combined with other treatments such as Avastin, which she funded herself. But gradually the effectiveness of these treatments on her tumours has declined.
Cancer specialists at the world-renowned Hammersmith Hospital, in West London, where she receives her treatment, say that SIRT could significantly reduce the size of the tumours. Professor Karol Sikora, one of the UK’s leading cancer experts, said: ‘I can see no other option but to recommend SIRT for Suzanne. It is very effective and she is an ideal candidate.’
But NHS Eastern and Coastal Kent medical director Dr Robert Stewart said: ‘The evidence of clinical effectiveness for SIRT for liver metastases following breast cancer is insufficient and the Kent and Medway Cancer Network does not support it for patients with this condition.’
Mrs Lloyd has also received a letter from Health Secretary Andrew Lansley, via her MP Charlie Elphicke, warning that radiotherapy may not be included in the cancer fund. Although she hopes the Government may change its mind when it reviews the fund in April, she believes it may be too late.
Desperate mother releases video of daughter, 4, having a fit to force NHS into action
A mother has released distressing video footage of her four-year-old daughter suffering an epileptic fit in a bid to force the NHS into provide life-saving equipment for use at home.
Lisa Nicholls, 26, wants the moving film of daughter Savannah mid-seizure to show how badly children can be affected by epilepsy and call for more home support.
The harrowing footage shows Savannah looking wide-eyed and frightened as she falls into a catatonic stupor before her limbs begin to twitch uncontrollably. Terrified Savannah moans as the seizure grips her little body and she stares into space as her loving mother strokes and comforts her using soothing, reassuring words.
The debilitating paralysis soon passes and Savannah recovers and hugs her long-suffering mother, but Lisa fears the worst at every seizure.
Lisa put the footage on the internet after being told there was no funding on the NHS to provide Savannah with a breathing monitor which could save her life during a night seizure. She hopes the video will force the Government to set aside more money to provide life-saving equipment so exhausted families are supported without feeling they have to fight for the right.
Lisa, a full-time mum from Penzance, Cornwall, said: ‘Six months ago they started filming Savannah’s seizures to analyse them and help with her treatment. ‘I swore I would never show anyone – she’s my precious girl. But I want people to do something. ‘She’s twitching, she’s unresponsive, she’s got no oxygen, her limbs are turned in and she can’t breathe.
‘It’s hard to watch, but this is real life. This is how my child lives, and so many others. Hopefully it will encourage people to take notice and recognise there needs to be more funding.’
Savannah, who was born on Christmas Day 2005 and diagnosed with a rare form of leukaemia three months later, has suffered almost 100 seizures in the past year. She only survived after Lisa campaigned vigorously for a bone marrow donor. Savannah was given a transplant and chemotherapy treatment, but went into a coma during treatment and suffered brain damage leaving her unable to speak and having fits. She needs emergency medicine for each seizure as they will not stop on their own and has previously been put into an induced coma at one point to stop the fitting.
Lisa claims she has had to fight for equipment to measure her daughter’s oxygen levels, then for oxygen itself and now for a monitor to alert her when Savannah stops breathing at night.
She said: ‘I feel it is important to show people how severe epilepsy is. Savannah is at one of the highest risks of death from epileptic seizures. ‘It does kill. It is shocking. Savannah stops breathing when she has her seizures and she has them a lot at night. ‘If we had a breathing monitor it might alert us and save her life. I have got a video monitor that I use but I sit up all night watching it and don’t get any sleep.
‘When I asked for a breathing monitor I was told by our epilepsy nurse that there aren’t enough costs on the NHS for epilepsy to provide such equipment. They are underfunded for epilepsy.
‘I don’t think parents should have to fight. I think these things should be available for children with epilepsy. ‘I don’t want sympathy or attention, I just want people to act on this.’
Lisa keeps a diary of her daughter’s seizures – 15 of which have seen Savannah back in hospital since last August – and has begun filming some of the fits.
After the success of her campaign for bone marrow donors she is now determined to help others with epilepsy through her daughter’s video, ‘Behind Savannah’s Eyes’.
Three people die from epilepsy every day in the UK and the charity Epilepsy Bereaved believes at least one of those deaths could be prevented.
Lisa wants the families of children with epilepsy to be made more aware of the risk of Sudden Unexpected Death in Epilepsy (SUDEP). She also wants any preventative measures, such as breathing monitors and oxygen, to be adequately funded and readily available.
Spokeswoman for British charity Epilepsy Action Louise Whalley said: ‘Health services for people with epilepsy fall far short of minimum requirements set out by the National Institute of Health and Clinical Excellence.
‘Epilepsy Action’s 2009 report “Epilepsy in England: Time for Change” revealed a catalogue of failings in epilepsy care and services across the country. ‘This includes unsatisfactory waiting times and a lack of epilepsy specialists. It is vital that these basics are mastered to ensure people with epilepsy have access to the necessary care and treatment.’
A spokesman for Cornwall and Isles of Scilly Primary Care Trust said breathing monitors for children were available on the NHS but they had to be prescribed by a clinician. He said: ‘If her clinician recommends and prescribes that piece of equipment we will pay for it but they would have to prescribe it.’ [Backdown?]
Coroner hits out at doctors’ hours after patient dies
An elderly man died in hospital after waiting five hours to see a doctor. After being told how Roland Holbrow died without seeing a doctor, a coroner yesterday criticised European rules that restricting junior medics’ working hours.
The European directive, which limits the working week to 48 hours, was implemented for junior doctors in August last year. Earlier this week it emerged that one in four junior doctors are dropping out of their training courses. Many become disillusioned that the restriction on their hours means they receive less one to one time with senior consultants.
Former miner and lumberjack Mr Holbrow, 87, died at Musgrove Park Hospital, in Taunton, Somerset, on August 14. He was admitted to the hospital’s Eliot Ward at about 7.15pm that day from Chard Hospital after concerns were raised about his breathing. The Taunton inquest heard how ten patients, including Mr Holbrow, were waiting to be seen by the two doctors on duty.
One was called down to the accident and emergency department before Mr Holbrow could be seen. The junior doctor on duty did not see Mr Holbrow until after midnight, by which time he had died. During this time Mr Holbrow, from Chard, was constantly monitored by nurses. One of them was so concerned about his breathing that she repeatedly called for a doctor.
Mr Holbrow had MRSA and C.difficile and was kept in a separate-room on the ward so he could not pass any infection to other patients. A pathologist said he had died from pneumonia. The coroner recorded a narrative verdict on Mr Holbrow.
Dr Stuart Walker, a consultant radiologist at the hospital and clinical director of A&E, told the inquest that Mr Holbrow’s treatment had been ‘unacceptable’ and ‘very poor’. Dr Walker said a review into Mr Holbrow’s death would bring about changes to the way patients were seen. This included altering the ‘traffic light system’ – which grades a patient’s risk – so increased checks can update their condition.
Dr Walker said: ‘The European directive undoubtedly has an effect on medical training and practise in the UK. ‘The result is that we are having to prioritise junior doctors’ training more into the management of the emergency treatment at the expense of their specialist training.’
After the inquest, Mr Holbrow’s son, Adrian, 48, said: ‘The system let him down and as far as the doctors are concerned he should not have waited five-and-a-half hours.’
Members of British parliament mull ‘climate enquiries’ that failed to enquire
Might the University of East Anglia now rue its handling of the Climategate affair? An MP tells us that the University has ignored instructions given to it by the House of Commons Science Committee earlier this year, and MPs were given misleading impressions.
“Everybody on the Committee last time asked that there be no gaps between our report, and the Muir Russell report and the Oxburgh Report – but there are huge gaps. The Muir Russell people and the Oxburgh people didn’t talk to each other, so there were bound to be gaps,” says Committee veteran Graham Stringer MP. “We are left with the science left unlooked at.”
The allegations of misconduct and intellectual corruption raised by the release of the emails, data and source code last November are amongst the most serious British academia has ever heard. UEA responded with two internal enquiries, but MPs won’t let it lie. Members on the Commons Science Select Committee have summoned the two chairmen of the UEA enquiries back for further interrogation. At the first of these yesterday, the chairman of the Science Assessment Panel, Lord Ron Oxburgh, puzzled Committee MPs with his answers.
How the Panel was formed
When the University announced the composition and role of the Science Assessment Panel, it billed it as an “independent internal reappraisal of the science”. In March the University’s Vice Chancellor Lord Acton confirmed the impression, telling the select committee that Oxburgh’s enquiry would “reassess the science and make sure there is nothing wrong”.
That was misleading, Oxburgh told MPs yesterday. “I think that was inaccurate … You have to bear in mind the Vice Chancellor had been in the post for a month or so. It came as rather a deluge.”
Oxburgh pleaded time pressure. “They wanted something within a month. There was no way our panel could in that time validate the science. If you wanted the science validated, you’d appoint another panel. “We were meeting a deadline to help the University with a particular problem. Given our particular remit I don’t think we needed any more time.”
Oxburgh was proud that he’d used a non-confrontational approach. The CRU academics were interviewed just once, collectively, in private, and he’d rejected calls for televised proceedings. As Oxburgh described it, the enquiry sounded more like a health spa program for stressed executives.
“People wanted to bring television cameras in. Given the nature of the individuals concerned, we felt that we would get much more out of them, and get them to unwind and relax, and if indeed if they had chinks in their armour, to expose them, that if we did this in a much more relaxed way.
“Certainly one of the key people there is someone who is pretty highly-strung – and I think we were able to get him to relax and explain things.” MPs were stone-faced at this. Oxburgh developed a nasty cough. So what had been the purpose of his enquiry?
Oxburgh at work
“I would chair a brief study, really, into the honesty of the people – not all the aspects of the science, we were not expected to go into the email saga. But they wanted evidence if people had been behaving dishonestly.”
MPs wondered how he could measure honesty. “I think that we or the University would have been content had we said the researchers there were incompetent-but-honest, or misled-but-honest. We were looking for deliberate manipulation of data that led in a different direction to meet some pre-determined aspect of an agenda. We found none.”
This failed to impress Committee member Stringer, the MP told us today. “One of the biggest attacks on Jones was by Professor [Doug] Keenan, it directly accused him of fraud. One would expect Jones’ use of Chinese data to come up. They had been very selective with what they’d put in and left out of their graphs, even if they hadn’t fiddled the figures,” said Stringer.
Stringer says the practices exposed at CRU undermine the scientific value of paleoclimatology, in which CRU is a world leader. “When I asked Oxburgh if [Keith] Briffa [CRU academic] could reproduce his own results, he said in lots of cases he couldn’t. “That just isn’t science. It’s literature. If somebody can’t reproduce their own results, and nobody else can, then what is that work doing in the scientific journals?”
The depth and rigour of Oxburgh’s panel also raised eyebrows. Oxburgh said the intensive interrogation (described above) had taken several days, but FOIA requests show his team of seven spent just two days on the job, clocking up “45 man hours” including lunches and coffee breaks. The final report amounted to five pages of assessment.
Although the Science Assessment Panel didn’t publish notes, MPs have seen a highly critical assessment of CRU’s work by Cambridge physics Professor Michael Kelly. [PDF, 540kb], who has acted as a scientific advisor to government. Kelly quoted Ernest Rutherford, who once said that “if your experiment needs statistics, you ought to have done a better experiment”. Complex simulations that can’t be exhaustively tested against ‘real’ data have limited value.
“I take real exception to having simulation runs described as experiments (without at least the qualification of ‘computer’ experiments). It does a disservice to centuries of real experimentation and allows simulations output to be considered as a real data. This last is a very serious matter, as it can lead to the idea that real ‘real data’ might be wrong simply because it disagrees with the models.” ….
The issue of publication and peer review is a troubling one. MPs didn’t raise it yesterday, but may well follow-up with Muir Russell who is scheduled to appear before the Select Committee next month.
The emails show the academics rubber-stamping each other’s work, pressuring publications to suppress critical academics, and in promising to subvert academic conventions to exclude papers from the IPCC. “I can’t see either of these papers being in the next IPCC report. Kevin and I will keep them out somehow – even if we have to redefine what the peer-review literature is!” wrote Jones in 2004. Another practice cited by critics is “check-kiting”, where a climate paper cites a work that is never published.
Muir Russell will appear before the select committee next month, and Anglia’s Vice Chancellor Acton has agreed to make a further appearance.
The composition of the Science Select Committee can hardly be described as skeptical. Its concern rather seems to be that of the reputation of British academia. A university – ultimately funded largely by the public – has had serious allegations levelled against it, while its own enquiries have failed accept that structural reform of scientific may be needed.
Fighting against slavery? Pull the other one
Anti-traffickers promiscuously use the s-word in order to present themselves as heroic rescuers of fallen women
Following a series of Channel 4 TV programmes that charted the shocking stories of abuse and exploitation of so-called ‘modern-day slaves’ – women and children from abroad coerced to work in Britain as domestic servants and prostitutes – it is important to make one thing clear: slavery was abolished 200 years ago and it has not returned.
Thankfully, for all Channel 4’s promiscuous use of the s-word, today there are no open markets where men, women and children of a certain colour are bought and sold like cattle, shipped across the world in horrific conditions, and forced to labour against their will with no remuneration. Of course, Channel 4 didn’t literally claim that these eighteenth-century practices still occur; instead it suggested that thousands of foreign women and children are made to work in slave-like conditions, behind closed doors. Nevertheless, the moral imperative to free these people from their metaphorical chains is as strong as the one that eventually abolished the transatlantic slave trade, the programmes implied.
Does it really matter if well-intentioned individuals and TV producers are taking liberty with labels? Isn’t objection to the use of the word slavery simply academic nitpicking, when the main aim should be to help exploited people by any means necessary?
Actually, a critical look at the Channel 4 programmes makes clear that all this ‘slavery’ talk and ‘anti-slavery’ campaigning is only helping to put migrants and would-be migrants into a submissive relationship with police, charities and feminist activists who fancy themselves as modern-day abolitionists. These self-styled rescuers may get a moral boost from their campaigning against ‘modern-day slavery’, but there aren’t many clear benefits for the victims they purport to be rescuing. In fact, often these fantasy, feministic rescue operations result in the deportation of migrants who have invested a great deal of time and money in coming over here to work.
The Channel 4 programmes were: Britain’s Secret Slaves, an investigative documentary about domestic workers; I am Slave, a drama based on the real story of a Sudanese girl kidnapped, sold to an Arabic family, and then brought to Britain as their domestic servant; and The Hunt for Britain’s Sex Traffickers, in which a film crew followed police carrying out a nationwide investigation into enforced prostitution in Britain.
In all programmes, three distinct roles were assigned to those involved. First, there were the Dodgy Foreigners – Middle Eastern diplomats who abused their Asian domestic servants; African rebels raiding villages and kidnapping children to sell to wealthy Arabs; Asian pimps. Second, there were the Foreign Victims – impoverished women and children, adrift in the world and with no power to exercise personal agency. And third, there were the rescuers – white and British police, charities, feminists and filmmakers.
These films did show that history is repeating itself – but what is really making a comeback is not slavery, but the ‘white slavery’ panic of the late nineteenth and early twentieth centuries. Only where that panic focused on the potential for Western women to be forced into prostitution abroad by evil Chinese, Indian or African men, today’s trafficking panic focuses on the potential for Third World women to be forced into prostitution by evil Chinese, Indian or African men. It was during the white-slavery scare that the term ‘trafficking’ first emerged. The way in which this alleged ‘trafficking’ was reported back in the nineteenth century, and the moral impulses of those who tried to fight it, are eerily similar to today’s anti-trafficking initiatives.
In a 1999 paper, Jo Doezema, a British academic, outlined how fears and anxieties around mass migration, sexuality and the role of women have infused both the old white-slavery panic and the new trafficking panic. At the turn of the century, the white-slavery scare was triggered by a rise of Western women, at a time of increased mobility, venturing abroad to find work, including as prostitutes. And the modern trafficking panic also emerged at a time of borders opening up and people from poorer parts of the world gaining more opportunities to travel.
During the white-slavery scare, there was a growing concern that foreign men – especially Africans, Jews and the Chinese – might kidnap Western women and force them to work as prostitutes. As with today’s traffickers, they were said to have used force, deceit and drugs to lure women across borders. Then, as now, there was a disproportional focus on women and children – and little appreciation of the fact that women, even if in circumstances of duress, are capable of taking active decisions to leave home.
Back then – just like today – conferences were organised, international agreements were signed and new laws were passed, including restrictions on women’s travel. Media reports, novels and plays were written, and state authorities, early feminists, religious associations and puritanical organisations collaborated to put an end to the trafficking of women by foreign sex pests and money-hungry thugs. The victims of ‘white slavery’ were presented as innocent, pure and virginal girls who were subjected to extreme violence, humiliation and disease. The perpetrators were depicted as mafia-like, often working in collusion with corrupt governments – much like those Asian mafia men and Arab diplomats featured in Channel 4’s documentaries.
As Doezema points out, various studies have shown that the white-slavery scare had little basis in reality, and was instead driven by fears that foreigners would violate respectable Western women and corrupt Western society. And while protective measures were introduced under the guise of ‘helping women’, the underlying moral concern, Doezema argues, was with controlling women.
Today, too, undocumented migrants are widely regarded as being pawns in the debased games of trafficking rings. Yet while kidnapping, coercion and maltreatment certainly occur, the fates of undocumented migrants to the West are really in the hands of what Laura María Agustín has termed ‘the rescue industry’.
In her book Sex at the Margins, Agustín (interviewed on spiked here) describes how ‘rescuers’, even when well-intentioned, end up denying the agency of large numbers of working-class migrants. They treat them as ‘passive subjects rather than as normal people looking for conventional opportunities, conditions and pleasures’. Agustín argues that ‘the victim identity imposed on so many in the name of helping them makes helpers themselves disturbingly important figures.’
Just consider the British police officers featured in The Hunt for Britain’s Sex Traffickers who helped carry out Pentameter Two. That operation was heralded as ‘the largest-ever police crackdown on human trafficking’, and it led to the conviction of precisely zero people for forcing women into prostitution. As one journalist has pointed out, the key witness relied on by the police officers – and by Channel 4’s documentary makers – was not actually rescued by the police, but by one of her punters and his ex-wife. Yet viewers were made to believe that there is a clear link between the hundreds of raids carried out as part of Pentameter Two and the rescue of this witness (who was genuinely forced into prostitution in demeaning circumstances).
On Channel 4, the police were allowed to present themselves as knights in shining armour. There was no mention of the fact that two thirds of the 255 women ‘rescued’ by police during the Pentameter raids in 2006 and 2008 quickly dropped off the radar, declining to be helped by the authorities. This led one researcher to conclude that many of these women were simply in Britain to earn money – just like other migrant workers – and just wanted to get on with it rather than be ‘rescued’. The fact is that migrants from poor parts of the world can earn a lot more money in the sex industry than in other lines of work and they would not regard being arrested in a police raid as a form of ‘rescue’. Sixteen women – alleged victims of trafficking – were deported following the Pentameter raids. How helpful.
Illegal migration involves great risks for migrants. They are vulnerable to exploitation, with some held in flats against their will or forced to work long hours for very little pay. Yet the government and anti-trafficking campaigners only end up strengthening borders, by raising suspicions about every man, woman or child moving here from ‘over there’. It is not in migrants’ interest to be described as slaves. This only gives a moral boost to their self-appointed rescuers, who are involved in what Agustín has labelled ‘a colonialist operation’.
Overblown anti-slavery campaigns are really about rescuing the flagging reputation of the British police, government officials and others. Most migrants probably experience these campaigns as patronising and restrictive.