Top up fees- why equality is a cruel doctrine in the NHS

It has taken an inexcusably long time, but last week, the labour Government finally recognised that it was both cruel and unfair to deny NHS patients who decided to buy themselves drugs that the NHS would not purchase for them.

Linda O'Boyle is now dead, but she became the focus of the media campaign that forced the labour Government to change its mind. Her life was prolonged by the use of the anti-cancer drug Cetuximab.

She paid for it because the NHS would not do so. She was denied NHS care as a consequence, and had to pay another £11,000 to private hospitals for chemotherapy and nursing.

Mrs O'Boyle was one of many suffering from terminal illness who have gone through the same ordeal.

Nevertheless, there are plenty of people who continue to insist that, if the NHS cannot afford to pay for a particular drug, it is better that patients who need it die faster without it, and for them to be refused all NHS care should they pay to obtain it for themselves. Why would anyone adopt that cruel and irrational position?

No one is harmed when a patient like Mrs O'Boyle buys a drug which her doctors have recommended but the NHS will not fund. But there is a very obvious benefit to the patient. A policy which generates benefits without causing harm is obviously better than one which just causes harm. The choice between those two is a no-brainer.

Health Direct does not want to accuse those who advocate the policy of denying NHS treatment to patients who buy their drugs of having no brains. It is probably better to call them deluded. The villain is a misunderstanding of the ideal of equality: if everyone cannot have a benefit, it is better that no one should have it.

This implies that there should be no medical care at all if it is impossible to achieve the outcome in which that care is exactly the same for everyone. But that result cannot possibly be achieved, not least because doctors vary in their levels of competence and skill.

Those treated by the better doctors receive a higher standard of medical care than those treated by the less able and experienced. No egalitarian is so deluded as to believe that this means we should dismantle the NHS and make access to any kind of medical care illegal.

But that's the logical consequence of their doctrine that the most important value is not to provide medical care, but to ensure exact equality of outcomes for everyone.

The "harm" that the egalitarians claim is caused by allowing patients both to purchase drugs and to receive NHS care is, in reality, no harm at all. Someone who does not receive the best care possible from the very best doctors in the world is not harmed by the fact that there are people who do.

Professor Mike Richards, who wrote the report which led to the labour Government changing its policy, ties himself up in knots in an effort to both accept and reject that truth. He ends up recommending a compromise: patients who pay for drugs should not be denied NHS care, but they should not be treated in NHS hospitals. They should pay for any tests, scans and treatments to deal with complications arising from the additional drugs they pay for themselves.

The compromise will soon become untenable: differentiating between the tests and treatments that are made necessary because of the extra drugs, and those that are not, is often impossible. And what will happen if a patient is admitted into intensive care when they are due another dose of the drugs they pay for?

Will those drugs be administered in the NHS ward or not? Assessing such matters on a "case by case basis", as the Government proposes to do, is a recipe for precisely the outcome the Government says it wishes to avoid: patients being treated in wildly different ways, depending on the whim of the administrator who makes the decision.

The idea that medical care should be distributed according to need, and not on ability to pay for it, has one problem: doctors and nurses do not work for free, and drug companies do not give away drugs for nothing.

In 2003, the Wanless report on the funding of the NHS predicted that total NHS spending would rise from £68 billion to £154 billion in 2022. More recent estimates suggest that spending will increase to £184 billion. Such a huge sum won't come from general taxation: voters are not willing to pay taxes at the level necessary.

It means that "co-payments" - contributions from individual patients towards the cost of their own care - will inevitably have to increase.

Misguided egalitarians will try to prevent it. But they will only be able to do so by denying people medical care, and by going straight back to the situation in which someone like Linda O'Brien is pushed out of an NHS hospital because she makes a contribution to the cost of the drugs she needs. Is that the outcome they want?

From:
http://www.telegraph.co.uk/opinion/main.jhtml?xml=/opinion/2008/11/09/do0903.xml

Statin use may benefit healthy in new NICE postcode lottery

Guidelines on who is eligible for statins may need to be rewritten after an international trial found benefits in "healthy" adults, experts say- leading to a new postcode lottery for labour's killer quango NICE.

The study of 17,800 men and women with normal cholesterol levels found rosuvastatin cut deaths from heart attacks and strokes.

Currently statins are offered to people with a moderate to high risk of a cardiovascular "event".

The results are published in the New England Journal of Medicine.

The patients in the trial, funded by AstraZeneca, had cholesterol levels below those usually indicating a need for treatment and had no other signs of heart disease.

But they did have increased levels of a C-reactive protein, which indicates inflammation in the body and is believed to be a marker of future cardiovascular events.

After an average follow-up of two years, 20mg a day of rosuvastatin was found to have cut cholesterol by 50% and C-reactive protein by 37%.

Overall, the chance of a heart attack, stroke, hospital admission for chest pain or death from cardiovascular disease was cut by 44%, researchers said.

A reduction was even seen in those with the lowest chance of a cardiovascular event over the next decade, they said.

Researchers found a higher incidence of physician-reported diabetes in the statin group but could not explain it as blood glucose levels were similar between those taking rosuvastatin and those taking a dummy pill.

Guidelines

Statins are already prescribed to millions of adults in the UK.

The UK's National Institute of Curbing Expenditure (NICE) recommends doctors carry out a risk calculation based on an individual's blood pressure, cholesterol, weight and other risk factors, such as whether or not they smoke.

Those with a 20% risk of a heart attack or stroke in the next 10 years should be prescribed a daily dose of simvastatin - the cheapest of the statin class.

Dr Terry McCormack, a GP in Whitby, North Yorkshire, and ex-chairman of the Primary Care Cardiovascular Society, said the results were "astonishing" and much stronger than he would have expected.

He added that NICE should redo their cost-effectiveness calculation on the basis of the latest figures.

"These are people who have an intermediate risk and you wouldn't normally prescribe statins for them in the UK," he said.

"It opens up a whole new debate and the trial probably raises more questions than it answers."

Professor Peter Sever, an expert in clinical pharmacology at Imperial College in London, said the results backed other studies which had shown statins had the same proportional benefit however low an individual's cholesterol.

But he added: "The thing to remember is that the 20% threshold is arbitrary - it is essentially based on economic issues.

"Most nations have a finite pot and if you're going to treat everyone with a 10% risk, that's billions of pounds extra and somewhere along the line someone else is going to miss out."

Dr Alan McDougall, from AstraZeneca, said there was "no question" the trial would raise some important issues about statin use but that they would recommend doctors still follow existing guidance.

The killer quango NICE is due to consult on plans to review their statin guidance shortly.

From:
http://news.bbc.co.uk/1/hi/health/7715707.stm

The last nail in the NHS coffin

Top up co-payments are the last nail in the coffin for the NHS as it opens the door to private providers.

On the face of it and from a moral perspective, a decision to allow “top-up” payments for cancer drugs seems the correct course of action to take to curb postcode lotteries for funding cancer drugs. However, this must be seen in the wider context of the future of the NHS and the fundamental principles of “universality” of care.

“Top-up” payments will open the door to the insurance industry and private providers to deliver these treatments. This will become the norm for many new treatments, not only cancer drugs, and will lead to a system of “managed care” much like that in the US where it is the insurers and not doctors who decide who gets treated, where they get treated, how they get treated, who gives the treatment and how much it costs.

The universality of care provided by the NHS has already been eroded (eg, loss of the majority of NHS dentistry and eyecare) and this is the last nail in the coffin. The real tragedy lies in the fact that we should not even be having this debate.

The total NHS drug spend on cancer drugs in England is approximately £1 billlion per year, but, in the British Medical Journal last week, the chief economist of the King’s Fund, Professor John Appleby, stated that the NHS in England is projecting an underspend of £1.7 billion and foundation trusts are reporting cash balances of £2.5 billion.

Furthermore, it is painfully ironic that the huge cost of introducing a market based system to the NHS has actually helped to spark a debate that will lead to further privatisation and fragmentation.

From:
http://www.timesonline.co.uk/tol/comment/letters/article5091892.ece

Health Direct notes that one of the factors behind the current controversy about “top-up” drugs is the absence of any explicit recognition that vital moral issues are involved.

If an old person is trapped under a collapsed building late at night, people do not say: “She has not got long to live anyway, let’s leave it till the morning; it will cost a bomb if we get the cranes and crews out at this time of night.” They are more likely to say: “She is pretty frail; we had better pull out all the stops, and get cracking as soon as possible.”

The weakness of the NICE approach is to assume that life and death decisions about whether the NHS should buy new drugs can be based solely on an economic model. Common humanity comes into it too: even if it may involve paying higher taxes.

Labour U turn on NICE's cancer drugs postcode lottery killing policy

The rule preventing NHS patients from "topping up" their treatment is cruel and vindictive. Under just axed guidelines, anyone paying for drugs with their own money may be deprived of any further free health care.

This is a crude form of blackmail by the state provider that may have been understandable 60 years ago when the NHS was finding its feet but has no place in a modern healthcare system. It is to the credit of Alan Johnson, the Health Secretary, that he has finally acted to remove this barrier to patient choice.

Allowing a co-payment system to develop in healthcare is, however, more than just a humane decision that will allow seriously ill people to purchase life-saving drugs that may be too expensive for the NHS to prescribe. It is also a fundamental step towards diversifying healthcare in a way that will allow a better-funded and more patient-friendly system.

Health insurance companies will now start marketing policies for top-up payments only, as a supplement - not an alternative - to NHS provision, an attractive option to people who cannot afford full private health insurance.

That will help remove the barrier between state and private provision that has proved so restrictive, while opening up new revenue streams. A hybrid, public/private system could then emerge, without sacrificing the cardinal NHS principle that treatment remains free at the point of delivery to all who need it.

From:
http://www.telegraph.co.uk/opinion/main.jhtml?xml=/opinion/2008/11/05/dl0502.xml

Health Direct points out that there is now a three tier NHS service. The top level is private health insurance for NHS services. The middle tier is part payment for drugs and services. With the base rate being access for patients only if whitehall edicts allow doctors to prescribe certain life saving drugs.

Top-up insurance is still essentially a means test - and works contrary to the concept of universal access on equal terms to the NHS at all points of contact.

There is no reward here for those who already self-provide, nor any consideration of what those seeking to claim contribute to our taxes, or to the costs of the NHS.

This is a bit like thanking the person, who has decided to refrain from beating you over the head with a baseball bat.

The magic formula, top up insurance- is routine in France. The plan does not call for genius; rather, its absence calls for rebuke.

I have just one question about this, Alan Johnson is claiming credit for changing this particular rule, but which minister was it who allowed the rule to be set in the first place- Health Direct suspects the bean counter Patricia Hewitt?

Drugs denied to sick - against the rules of NICE NHS watchdog

Patients in many parts of Britain are being denied effective and sometimes life-saving treatments because of funding shortages in the National Health Service by NICE.

This is despite rulings from the labour Government's new prescribing watchdog that the treatments should be freely available on the NHS.

Doctors say that diabetes, arthritis and Alzheimer's patients are suffering because they are being refused drugs or treatment programmes approved by the National Institute for Curbing Expenditure (NICE).

The agency was set up in 1999 following concerns that patients in some health authority areas were being denied new treatments because they were too expensive. Nice recommends which new treatments should be given to all patients and which are too costly or ineffective to be funded by the taxpayer.

Doctors say that many hospitals still lack the resources to prescribe drugs recommended by Nice. Patients are continuing to miss out, they say, because of staff shortages and a failure to fund the equipment needed to administer the treatments.

In March last year Nice ruled that anti-TNF alpha therapy - a revolutionary infusion for rheumatoid arthritis - should be available to about 25,000 patients who fail to respond to conventional drugs. Anti-TNF can prevent those with severe arthritis from becoming crippled by the condition, which afflicts 380,000 people in the United Kingdom and is the country's commonest cause of disability.

A year later, however, a survey by the Arthritis and Musculoskeletal Alliance (Arma), which groups 27 patient organisations, found that more than a third of rheumatologists were still unable to prescribe the drugs to all the patients who needed them.

The 152 consultants in England and Wales who responded to the survey identified more than 1,000 people who were still on waiting lists for the treatment.

Many specialists said that a key factor in the failure to give the drugs to patients was the lack of funding for the specialist nursing needed to administer the treatment. Sophie Edwards, Arma's chief executive, said: "There are patients around the country who are being denied the treatment they drastically need.

"The survey results show that access to this clinically proven and cost-effective treatment still depends on where you live."

Dr Andrew Bamji, of Queen Mary's hospital in Sidcup, Kent, told The Telegraph that he was relying on his secretary to take on the clinical duties needed to administer the treatment to patients with severe arthritis.

"I'm having to rely on my secretary to do some of the work that should be done by a nurse," he said. "But even with her help, we're getting to the point where we can't see any more patients."

Dr Richard Sullivan, the head of clinical programmes at Cancer Research UK, said that a lack of resources was also affecting cancer patients.

He revealed that Herceptin, a breast-cancer treatment that costs £20,000 a year per patient, was not available in many parts of the country despite a Nice ruling last summer that it should be available to all women with advanced breast cancer who might benefit from it. This means about 5,000 people each year.

"There are plenty of places around the country that aren't giving Herceptin because they're not able to do the tests needed before the drug is given," he said.

Diabetes sufferers are also being denied effective treatments.

In January, Nice ruled that all patients whose blood sugar was not properly controlled by traditional insulin injections - at least 4,000 people - should be given funding for insulin pumps. Without them, sufferers risk blindness, amputations, kidney failure and even death.

It is now becoming clear, however, that not all health authorities are abiding by Nice's ruling. John Davis, 64, a patient at the Royal Bournemouth Hospital, is having to pay £1,000 a year for a pump because his local health authority is not funding the service.

Mr Davis set up a support group in April, and has since been contacted by dozens of fellow diabetics, mostly from Dorset, Oxfordshire and Northamptonshire, who are also unable to get the treatment on the NHS. "We have people who've been refused treatment even though their consultant has told them they should have it," he said. "But many other patients are getting it. It isn't fair."

The extent of the so-called postcode lottery - in which treatment is available in some health authority areas but not others - is also illustrated by the patchy availability of the latest treatments for Alzheimer's disease.

In the Greater Manchester area, no new patients in Salford have received anti-dementia drugs since January. Only 10 miles away in Bolton, however, people are being seen quickly by a service tailor-made to administer the treatments.

Dr Mahendra Gonsalkorale, a consultant geriatrician at Hope Hospital in Salford, said: "This really is not acceptable or fair. In the UK in general there should be similar access to these drugs for everybody."

The Alzheimer's Society says similar problems exist in Lancashire, Shropshire and Yorkshire. The reason is not a lack of drugs but the lack of staff to administer them.

Dr Evan Harris, the Liberal Democrats' health spokesman, said: "The Government doesn't figure in the total cost of Nice recommendations, let alone ring-fence funding for their recommendations."

Professor Sir Michael Rawlins, the chairman of Nice, said that careful audits by the revamped Commission for Health Improvement might be needed to ensure that the agency's rulings are followed across the health service.

Another senior Nice official, Anne-Toni Rogers, the director of corporate affairs, pointed out, however, that its rulings had proved effective in improving treatment for tens of thousands of patients. "After we recommended taxane treatment for breast cancer, usage went from one in five patients to three in four in just three months," she said. "You have to ask whether 100 per cent take-up is possible."

She said it was the Department of Health's responsibility to ensure that the medicines it recommended for use were provided by health authorities.

A spokesman for the DoH said: "Where it comes to our attention that there is non-compliance with Nice guidance on drugs, this is raised with the strategic health authority concerned, who will need to sort it out at the local level with relevant NHS trusts and primary care trusts.

"We fully expect primary care trusts to meet their statutory obligations, and strategic health authorities to follow up any allegations of non-compliance."

From:
Drugs-denied-to-sick-against-the-rules-of-new-NHS-watchdog.html

Lady Archer backs patients in row over top-up drugs

Lady Archer has backed demands for patients to be allowed to pay for additional medicines without losing their NHS care by releasing a survey showing that more than 80% of patients at the trust she chairs back the change.

The survey, of more than 800 patients, shows that 82% of NHS patients back the right to pay for top-up medicines.

The survey also found that more than 90% of doctors and nurses favour patients being allowed to pay supplements for proven cancer drugs which are not funded by the NHS.

Archer, chairwoman of Cambridge University Hospitals NHS Foundation Trust, has submitted the results to Mike Richards, the government’s cancer czar, who is conducting an inquiry into the scandal of withdrawing NHS treatment from patients who pay for private medicines.
Private drug helps cancer man left to die

In a letter to Richards, copied to Alan Johnson, the health secretary, Archer described the policy of penalising patients who choose to pay privately for drugs as “illogical and unjust”.

Archer, wife of Jeffrey Archer, the disgraced Tory peer and novelist, also said the co-payments should be allowed, not just for cancer medicines, but for all effective procedures and treatments which are not funded by the NHS.

Christoph Lees, a consultant obstetrician and gynaecologist at the Cambridge NHS Trust, said the labour government should make “sensible provision for patients to exercise what should be their right, rather than penalise them for their choice”.

Meanwhile, nine professors of rheumatology at University College London Hospitals NHS Trust, in central London, and Leeds Teaching Hospitals NHS Trust have claimed British arthritis patients are less likely to get the medicines they need than those in Romania, Hungary and the Czech Republic.

In a letter to The Sunday Times, they accuse the National Institute for Curbing Expenditure (NICE) of making a “senseless decision” by ruling that arthritis sufferers who are not successfully treated by one of a group of medicines known as anti-TNF treatments can’t switch to another type.

From:
http://www.timesonline.co.uk/tol/news/uk/article4794836.ece

Cancer patient with months to live wins court order for last-chance drug on NHS

A cancer patient has won a legal battle against the NHS to be given a drug that doctors say could prolong his life by up to three years.

Colin Ross, 55, of Horsham, West Sussex, has multiple myeloma, a cancer of the blood cells, and was not expected to survive to see Christmas unless he was given a drug described as his “last chance”.

The High Court overruled the decision by West Sussex Primary Care Trust that treatment would not be cost-effective, and said that Mr Ross should receive Revlimid as an exceptional case.

Mr Ross had incurable cancer diagnosed in May 2004. In an interview with The Times last month he said that he was “sickened” that he was being denied the £30,000-a-year treatment even though the drug was available to patients living only a few miles away in East Sussex.

But despite the exhortations of doctors treating Mr Ross at the Royal Marsden Hospital, the specialist cancer hospital in London, the trust had, since March, repeatedly refused to fund the drug, raising the issue of a so-called postcode lottery for NHS treatments.

However, Judge Simon Grenfell, sitting in London, condemned the trust’s decision as “one which no reasonable authority could have made on the application before it”.

Revlimid is among the most expensive of new cancer treatments and is readily available to patients across Europe and in the United States and Scotland.

But it has not yet been granted approval by the National Institute for Curbing Expenditure (NICE) and, because of the cost, is likely to be rejected. It is provided by only some trusts in England and then only in exceptional circumstances.

The case is likely to encourage other cancer patients who may have been denied expensive drugs on the NHS, but experts emphasise that the case does not set a legal precedent and that decisions will be taken case by case in other areas.

The judge issued an emergency injunction to enable Mr Ross to begin treatment today, but the ruling was made on an interim basis pending a further appeal and not as the start of permanent treatment.

Mr Ross was too ill to attend court for the ruling but his long-term partner and carer, Wendy Forbes-Newbegin, 52, who has breast cancer, cried after the victory.

She said after the judgment that the family’s treatment by the NHS had been “appalling”.

“The mental anguish that we have been through has at times been unbearable, and wholly unacceptable in this day and age,” she said.

“Colin’s diagnosis and recent prognosis have been so awful in the first place, but to have to endure all the months of waiting for this life-prolonging treatment has been nothing short of shameful in the first degree.”

Mr Ross, who has two children and four grandchildren, told The Times that he feared that delays incurred by his appeals to the trust and ensuing legal action may have reduced the effectiveness of the treatment.

“Depending on what the judges say, I could start treatment with Revlimid, or the doctors will simply refer me to start receiving palliative care,” he said last month. “My bed in the hospice is already booked. I realise the drug is expensive for the NHS, but to think that I could have a few extra months or years to spend with my daughters and watch my grandchildren grow up – I’ve never wanted anything more.”

Before yesterday’s ruling he was taking a cocktail of painkillers and other drugs “just to keep my head above water”, and was advised that Revlimid was now the only option.

In March, Mr Ross’s clinicians asked West Sussex PCT to fund Revlimid for three to four courses at a cost of £5,000 a course and presented evidence to show that it could give Mr Ross up to three more years of life.

He had been unable to purchase the drugs privately, he said. “Even if I could, the law states that I would have to become a private patient and forfeit the rest of my NHS care.”

Richard Clayton, QC, acting for Mr Ross, told the court during a two-day hearing: “This application for this drug is the end of the road for him. Either he gets the drug and is able to have life-prolonging treatment, or he doesn’t and treatment ceases, with inevitable consequences.”

He added: “Were the claimant to live a mile and a half in either direction from where he does, he would have received the drug.”

West Sussex PCT said that it was considering whether to appeal.

From:
http://www.timesonline.co.uk/tol/news/politics/article4727613.ece

Health Direct applauds the judiciary. Having had their power over life and death removed many years ago, it is heartening that they are taking the same power away from labour's faceless health bureaucrats who are condemning thousands to premature deaths in the name of NHS cash shortages.

The King's Fund- labour's NHS top up payments strategy is untenable

The King’s Fund believes the current policy and practice on top-ups, which prohibits people from privately purchasing drugs not available on the health service while continuing a course of NHS care, is untenable.

There are areas of the NHS where there is inconsistency over patient charging, such as optical care and dental care, and current legislation does not provide clear direction to patients or the NHS about why these top-ups are allowed but others, for example the use of non-NICE approved drugs, are not.

In addition, the basis on which decisions are made locally as to whether drugs are available before they have received NICE approval or if NICE has rejected them, is not always clear.

The rules that do exist are differentially applied and result in significant variations between primary care trusts (PCTs) in the decisions reached - precisely the situation that NICE was established to avoid.

This situation is unlikely to be publicly acceptable and examples of the health service forcing vulnerable patients to lose out on their NHS funded treatment because they wish to pay for a drug themselves risks damaging the reputation of the NHS as a caring and compassionate service.

The difficult decision facing the government is compounded by the lack of available evidence on the numbers of people who could take advantage of any changes in the rules permitting top-ups, which we are assuming are small; the possible costs to the NHS; and the potential opportunity costs of using existing NHS resources in this way.

The absence of such an evidence base makes any recommendation we make more difficult. However, after much consideration of what is undoubtedly a complex issue, The King’s Fund believes that in certain circumstances patients should be permitted to pay privately for drugs that have been rejected on cost-effective grounds and retain their right to access the rest of their treatment on the NHS.

They should also pay for the associated treatment costs over and above the cost of treatment they would have received on the NHS.

The King’s Fund recognises there will be equity concerns raised by this as there will inevitably be some patients who can afford top-ups and some who cannot. This is an inevitable cost of this policy option. Therefore, if the government does take the decision to permit top-ups it should address the following issues and ensure safeguards are in place to minimise the risks of unfairness:

* Identify and specify the circumstances in which top-ups are allowed – the review is focusing on drugs only but there are other procedures and therapies that present similar if less emotive issues.
* Calculate the associated costs, such as the costs of administering a drug. If these costs were met by the NHS, this would mean resources being diverted from other NHS patients to support the delivery of a treatment that may have been judged to be not cost-effective by NICE. We propose that the patient should meet the associated costs over and above the NHS treatment they would already be receiving. These costs would have to be carefully calculated.
* Ensure that individuals understand the financial liabilities they may face if they top-up their care – individuals with a terminal illness may feel they have little to lose by risking their resources on an expensive drug with relatively low efficacy but if the drug proves to extend their life they may find themselves unable to finance payments in the medium or long term.

Finally, The King’s Fund believes the government can use the opportunity created by the top-up debate to improve the way that new medicines – and by extension other forms of treatment – come into use.

The present system is overly dependent on trial data supplied by the pharmaceutical companies that do not necessarily reflect the realities of clinical practice. We need a more systematic and ongoing appraisal of new drugs in both clinical and economic terms.

The pharmaceutical industry has itself recognised that the introduction of new and expensive drugs must be handled in innovative ways. These measures might reduce the number of drugs that are excluded from NHS funding and would reduce the level of variation in the availability of non-NICE appraised drugs and treatments and reduce uncertainty for patients and the public.

From:
http://www.kingsfund.org.uk/media/top_ups_response.html

NHS's refusal to fund cancer treatment costs mother £21,000

For Barbara Moss, the photographs of this summer's camping trip to France will be particularly special.Two years ago, she was diagnosed with bowel cancer and given less than five months to live. After chemotherapy failed to slow the disease's progress, doctors said that her only hope was a drug called bevacizumab, marketed as Avastin, which her local NHS refused to fund.

When Mrs Moss, 53, cashed in her pension to buy the drug, she was also made to pay for other NHS care that previously had been free. Her story highlights a national debate on drug rationing that is about to reach fever pitch.

Next month, Prof Mike Richards, the Department of Health cancer tsar, will announce results of a labour government review into rules that deny NHS treatment to patients who want to "top up" their care by paying for some of it. The Government had to examine the issue after a public outcry over the death in March of Linda O'Boyle, a grandmother denied free NHS treatment after buying the bowel cancer drug cetuximab, marketed as Erbitux.

Mrs Moss was prescribed Avastin by her consultant at Worcester Royal Hospital, but the primary care trust refused to fund it. Instead, the former schoolteacher and her husband, Mark, a toolmaker, cashed in their pensions, and were given money by Mrs Moss's 86-year-old mother to pay for the drug.

It shrank a secondary tumour in her liver so successfully that she was able to have it removed. When the cancer returned, she was once again denied Avastin. The couple spent a total of £21,000 on the drug and on the chemotherapy and nursing that Mrs Moss had previously received free of charge.

Latest scans show she is tumour-free. The cancer is likely to return, but already she has survived for 17 months beyond her original prognosis. On holiday in France, Mrs Moss said: "All this extra time has been so precious. I have been able to spend time with my husband and two sons, and it has helped them and me to prepare for my death. Every day now is a bonus, and I am grateful for that. But I am angry that after paying our taxes we had to take on these battles, and I feel really aggrieved for those people who cannot afford these treatments which are available in so many other countries."

Mrs O'Boyle's widower, Brian, recently had a private meeting with Prof Richards to discuss the top-up review. Last night Mr O'Boyle told The Sunday Telegraph that he wants the entire system of drug rationing overhauled, so that every patient gets the treatment their consultant prescribes.

The father of three said his wife, who was an NHS occupational therapist, would have been amazed by the impact her death has had. Worcestershire PCT said it had concluded that there was not enough evidence to support the use of Avastin for bowel cancer.

Southend Hospital Foundation trust, which treated Mrs O'Boyle, said the charges for her NHS care followed Government policy, which meant only one organisation could be held accountable for a patient's care.

The charity Bowel Cancer UK campaigns on behalf of patients seeking both Avastin and Erbitux. The drugs' use is restricted by the National Institute of health and Clinical Excellence (Nice), the rationing body, on the grounds of cost.

The charity and many bowel cancer doctors are critical of the Nice guidance, but also say PCTs do not have proper policies that should allow some patients to be given the drugs if their cases could be defined as exceptional.

Ian Beaumont, charity's campaigns director, said: "We think the current system is totally broken. All over Britain we have got patients who are having to battle the NHS system at the same time they are fighting cancer."

From:
NHSs-refusal-to-fund-cancer-treatment-costs-mother-21000.html

Health Direct thinks that it is quite absurd that a quango like labour's NICE should have the power of life and death over patients when such powers were abolished years ago for the judiciary.

The problem for the NHS is that labour has blurred the difference between for example top ups for dental treatment and those for life saving cancer drugs- with no idea of the size of potential extra income for the NHS if labour was to see sense and allow extra personal funding.

Healthcare postcode lottery means patients losing out on cancer treatments

The level of healthcare inequality across the country is disclosed in a detailed report which shows some areas are spending twice as much tackling heart disease and cancer as others.

"Postcode lottery" prescribing means some patients are not getting the same access to vital drugs and treatments as their neighbours.

In Knowsley, Merseyside, healthcare bosses spend £118 per head on cancer treatments, but in Ealing, west London, they spend just £47.

Middlesbrough spends £167 per head on circulatory diseases, including heart disease, compared with £76 by Southwark, central London.

The spending variations were "almost certainly not justified", warned Nial Dickson, the chief executive of the King's Fund, the influential health think-tank, which compiled the report.

The wide variations in how much the National Health Service trust spends on these diseases has remained unchanged for three years.

This despite an extra £9billion investment by ministers.

The spending variations were branded "unacceptable" and there were calls on the labour Government to investigate whether they were leading to higher death rates in some areas.

It comes amid increasing concerns over healthcare rationing with several high profile cases where patients have been denied drugs because they were deemed "too expensive" for a particular Primary Care Trust (PCT).

Last week, Colin Ross, a cancer sufferer who has been told he will not survive the autumn unless he receives the cancer drug Revlimid, took his case to the High Court.

Mr Ross, 55, who suffers from multiple myeloma, a cancer of the blood cells, was denied the drug, which costs £4,000 a month, by West Sussex PCT, Despite a leading cancer expert describing him as ``eminently suitable" for treatment. It could prolong his life by three years.

If he lived a mile-and-a-half away from his home in Horsham, West Sussex, Mr Ross's case would come under a different PCT where he would have been more likely to receive the drug.

Jane Tomlinson, the cancer campaigner who died a year ago, was denied a drug that doctors believed could prolong her life although neighbouring PCTs provided it. She eventually received it as part of a clinical trial.

The Government argues that rationing within the NHS is necessary to ensure that resources which could be spent elsewhere are not wasted and that patients receive only treatments which have real clinical benefits.

The new report show that while some PCTs spent more than nine per cent of their budget on cancer care, including drugs, some spent just 3.6 per cent.

The proportions ranged from 5.7 per cent to nearly 11 per cent for circulatory disease.

It also showed discrepancies in treatment for mental health problems. while some trusts spent 8.7 per cent of their budgets on treatments others spent 25 per cent.

Mr Dickson said: "This report raises questions rather providing answers.

"It does not mean that any one PCT's spending is necessarily wrong but it does suggest that as well as unexplained variations in clinical practice, there are unexplained spending variations - some of these are almost certainly not justified."

Norman Lamb, the Liberal Democrat health spokesman, said: "This analysis points to an unacceptable postcode lottery of care with Primary Care Trusts totally unaccountable to the communities they serve for these funding decisions."

He added: "This report begs urgent questions as to what extent these extraordinary variations in spending are affecting patient care and leading to higher death rates. The Government must investigate whether the funding allocations are fair."

The Tories have called for a system under which ministers would negotiate with drugs companies to bring down the cost of treatments which have proved effective, allowing them to be offered to greater numbers of patients.

David Stout, Director of the PCT Network, which represents most Primary Care Trusts in England, admitted that some of the differences could not be easily explained.

"While this may be due to inconsistencies in the data, it may reveal unacceptable variation in clinical practice or unexplained variation in investment," he said.

"While this analysis does not in itself provide the answers, it will help local primary care trusts to continue to ask the right questions about how they can best manage their resources."

Last month cancer charities and patients groups reacted angrily to a decision by the Government's drugs watchdog, the National Institute for Health and Clinical Excellence (Nice), that four life prolonging kidney cancer medications, costing around £24,000 a year, were not "cost effective" on the NHS.

The organisation has previously faced controversy over its advice that Herceptin, a breast cancer drug, could only be used for advanced cases.

Only after patients groups launched a campaign and legal fight was the drug allowed for early stages of the disease.

Nice has also stoked outrage by refusing to allow an anti-dementia drug, Aricept, which costs around £2.50 a day, in the early stages if Alzheimer's disease, meaning that thousands of patients have to wait for their condition to worsen before they can receive the drug.

The Government has ordered a review into whether to allow patients to buy their own drugs, under controversial "top ups", without having to pay for the rest of their NHS care, as the current system demands.

From:
Healthcare-postcode-lottery-means-patients-losing-out-on-cancer-treatments.html

Cost cannot be the only criterion for the NHS

Health Direct posts a stinging letter from senior health professional lambasting NICE and labour's financial accounting policies which favour tattoo removals over cancer sufferers.

WE WISH to support the eminent professors of cancer medicine who have called for a review of the way rationing decisions are made in the NHS (Letters, last week ). The Nice (National Institute for Health and Clinical Excellence) ruling to effectively ban four cancer drugs in England confuses cost-effectiveness with affordability.

These medicines have become the gold standard in the US and are more cost-effective than motorway crash barriers or air bags in our cars. Yet would society deny them?

The NHS has a budget of approximately £100 billion. If Nice applied its criteria to other parts of the health service, it might decide that many of them were not cost-effective. There is much waste in the NHS that should be addressed.

For example, many of the drugs prescribed on the £8 billion primary care drugs bill are not taken by patients. Savings in unnecessary prescribing could free up resources for cancer and other high-cost drugs.

Professor Salman Rawaf Director of Public Health,
Wandsworth Teaching PCT Norman Evans Consultant in Pharmaceutical Public Health

From:
http://www.timesonline.co.uk/tol/comment/letters/article4641096.ece

Subjective evaluation

Andrew Dillon and Sir Michael Rawlings of Nice are being disingenuous when they call for cancer specialists to say which acutely ill patients should be sacrificed to free resources for cancer sufferers. I suffer from breast cancer and I have had a mastectomy.

Like others in my position, I was offered a reconstruction on the NHS (I declined). The immediate and follow-on costs of this procedure can exceed the costs of new cancer drugs. Perhaps Nice could explain the basis of its valuation of one female breast?

Penny Smith Horseheath, Cambridge

Funds wasted

The NHS, as suggested, now spends comparable amounts on healthcare to the UK’s European neighbours, but less than two-thirds of the amount on cancer drugs, so where is the money going?

As a cancer patient I offer one observation on the differences in cancer care in the UK and France, which may indicate just one area where money is wasted. In France there are fewer staff in those meaningless roles so beloved of the NHS; no sign here of nurses employed to bawl out patients’ names over the noise of a television no one wants to watch.

A French oncologist greets patients and escorts them to his consulting room. I also believe wages for medical staff in France, even allowing for a reduced cost of living, are correspondingly lower than in the UK.

Sara Tait Carcassonne, France

Where the money goes

Do other health systems give priority to lives at high risk rather than funding Viagra, fertility treatments and antismoking and antiobesity campaigns led by commercial companies? Are their health management costs lower, in that they don’t fund two Nice bodies, one for Scotland and one for the rest of the UK?

John Allison Maidenhead, Berkshire

Case for co-payments

Surely, the only practical form of rationing that bypasses the Nice committee is for the patient to pay at least a proportion of the drug costs. The precept of “treatment free at the point of delivery” has to be abandoned; then we move into the complicated area of mitigating the costs to those who can’t afford to pay. Is that what the professors want?

Dr Richard Godwin-Austen Southwell, Nottinghamshire

Costly victories

You quote £15m as the cost of an Olympic gold medal, while Nice estimates the cost of anticancer drugs at £30,000 per patient annually? At those rates, one medal equates to 500 years of life.

David Diprose Saundersfoot, Pembrokeshire

Top doctors slam NHS drug rationing

Britain's top cancer consultants have accused the labour government’s drugs rationing body of ignoring the plight of patients forced to sell their cars and remortgage their houses to pay for cancer treatments freely available in Europe.

Twenty-six professors blame the severe restrictions imposed by the National Institute of Health and Clinical Excellence (Nice) on its failure to “get its sums right”.

Nice refuses, on grounds of cost, to recommend some drugs for patients with advanced kidney cancer. The consultants, who include the directors of oncology at Britain’s two biggest cancer hospitals, the Royal Marsden in London and Christie hospital in Manchester, claim there is enough money in the NHS to pay for the drugs.

Their letter to The Sunday Times states: “We now spend similar amounts to Europe on health generally and cancer care in particular, but less than two thirds of the European average on cancer drugs. It just can’t be that everybody else around the world is wrong about access to innovative cancer care and the NHS right in rationing it so severely.” They say: “The time has come for a radical change in how the NHS makes rationing decisions for cancer.”

This weekend Andrew Dillon, the chief executive of Nice, and Sir Michael Rawlins, the chairman, challenged the cancer experts to explain which acutely ill patients should be sacrificed to free resources for cancer sufferers.

They said: “There is a finite pot of money for the NHS, which is determined annually by parliament. If one group of patients is provided with cost-ineffective care, other groups – lacking powerful lobbyists – will be denied cost-effective care for miserable conditions like schizophrenia, Crohn’s disease or cystic fibrosis.”

This week patients from the Kidney Cancer Support Network will demonstrate outside the Nice offices in London against the refusal to fund the kidney cancer drugs Avastin, Sutent, Nexavar and Torisel.

Health Direct asks if National Insurance was brought in so that we could pay for our medicine . was NICE was brought in so there would be some money left in the kitty for "drinks at Christmas "?

Lynda Bellingham hits out over Alzheimer's drugs failure

The actress Lynda Bellingham has spoken about her anger that dementia drugs came too late to save her mother's mind and are still not available to all patients.

Bellingham, 60, who became famous for playing the homely matriarch from the Oxo television commercials, said that her mother had dementia for ten years before she died in 2004, but was not given the drugs she needed in time.

She said: "Mum was put on Aricept, one of the new drugs that health chiefs will only fund for some sufferers. It helped a little but for her it came too late.

"I think it's outrageous that patients are being told they can't have these drugs."

Aricept, which improves memory and day to day life for Alzheimer's suffers, costs about £2.50 a day. The NHS currently only gives it to people with severe forms of the disease, a small proportion of the 700,000 people in Britain with Alzheimer's.

The Loose Women presenter who is to star in a theatre production of Calendar Girls, said that watching her mother's mental deterioration was "heart-breaking".

"Towards the end Mum often didn't recognise us. Logically you understood but emotionally it was devastating," she said.

The family even had to make the difficult decision not to tell their mother that her husband had died because they worried she would not remember.

It comes after Carol Thatcher revealed this weekend that Lady Thatcher forgets the death of her husband and has to be reminded.

Terry Pratchett, the author who was diagnosed with early-onset Alzheimer's last year, has spoken out about the lack of funding the disease attracts and the poor availability of drugs.

He has said that the NHS was not "really set up to deal with" Alzheimer's sufferers and expressed frustration that funding on research for a cure was three per cent of that for cancer.

Bellingham agreed that the disease attracts less attention than cancer because there "is no physical manifestation".

She said: "We must act now to provide the care and support dementia patients and their families need."

From:
Lynda-Bellingham-hits-out-over-Alzheimers-drugs-failure.html

NICE blight- at last a life saving choice for patients

For the past nine years the National Institute for Curbing Expenditure (NICE) has been called upon to make judgments on matters of life and death.

Its role, in essence, is to ration healthcare by assessing the cost effectiveness of new treatments. The startling advances in drugs that can alleviate the symptoms of lethal diseases, particularly cancers, presents it with a particular dilemma, for these new drugs are frequently very expensive.

Nice has to balance the extent to which such drugs may extend a patient's life, the quality of that life, and the cost of the drug to the National Health Service. This is not an easy or an enviable task.

Most clinicians would argue that such a body is necessary. The NHS has finite resources so rationing is unavoidable. It is also important that there is a uniform approach to treatments across the country - Nice was established in an attempt to end the unfairness of the postcode lottery in health provision.

Yet the institute has attracted criticism for the tardiness of its assessment process and, increasingly, for the quality of its decisions.

For example, its refusal in 2006 to sanction the use of Aricept to delay the onset of Alzheimer's caused anger, not least because the cost was just £2.50 a day - a tiny price to pay to alleviate the distress of this disease.

More recently, Nice has been condemned for its refusal to authorise the use of four new drugs for kidney cancer which would cost tens of thousands of pounds a year but could prolong a patient's life, albeit by a matter of months.

Against this background, yesterday's announcement by Nice, formalising a U-turn on the funding of Lucentis to treat wet age-related macular degeneration, the most common cause of blindness in the elderly, is significant.

The move signals a new pragmatism in the way Nice works. In an agreement with the drugs maker Novartis, the institute has stipulated that the NHS will pay for the first 14 treatments and, if further injections are required, the company will pick up the bill.

Such flexibility is the way forward. In October, a Department of Health review is expected to overturn the spiteful rule that deprives a patient of any NHS care if he pays privately for drugs.

This clears the way to co-payment for drugs and will open the floodgates to a new revenue stream for healthcare.

Insurance companies are waiting to offer low-cost policies to top-up basic NHS care. That will leave Nice facing fewer life-and-death decisions because patients will be able to buy their own life-saving treatments without jeopardy.

It will also give patients greater choice as well as control over their own treatment - and that is long overdue.

From the Telegraph's Editorial Opinion:
http://www.telegraph.co.uk/opinion/main.jhtml?xml=/opinion/2008/08/27/dl2701.xml

NICE U Turn to save thousands of peoples' sight

Patients at risk of going blind will have their sight saved under a unique deal announced by the NHS drugs rationing watchdog NICE.

For the first time a drugs company will pay to top up patients' treatment where the level of care paid for by the Health Service is not enough.

In a decision that marks a climbdown for the National Institute for health and Clinical Excellence (NICE), the first 14 injections of the sight-saving drug Lucentis will be paid for by the NHS.

If the patient still needs further treatment then Novartis, the manufacturer, will pay for any additional doses.

The ruling overturns previous draft guidance that patients would have to go blind in one eye before receiving treatment with Lucentis, which costs more than £10,000 per eye, on the second.

It also paves the way for other new drugs for which top-up doses may be required to be funded in the same way in future.

Richard Barker, director general of the Association of British Pharmaceutical Industry suggested other medicines the NHS cannot afford to pay for in full could be provided through cost sharing schemes between the NHS and the drugs industry.

A similar approach has been suggested for kidney cancer drug Sutent, which costs £24,000 a year, and three other drugs after Nice issued draft guidance saying that they were not "cost effective" despite extending life by two months.

NICE has been severely criticised in recent months by health campaigners, who have accused them of condemning patients to "an early grave" by denying them the drugs.

It has also been at the centre of a previous controversy over its decision to deny the £2.50-a-day drug Aricept to victims of Alzheimer's in the early stages of the disease.

Lucentis can stop the deterioration in sight caused by the condition wet age related macular degeneration (AMD), which affects about 250,000 people in the UK including 26,000 new cases each year. It can cause blindness within three months.

Up until now around 40 per cent of primary care trusts have refused to fund the drug while others have approved its use only in 'exceptional cases' although the drug was approved in Scotland last year.

Nice has taken over two and a half years to issue its final guidance on the drug in which time many thousands of people have already gone blind as a result of the condition. The drug has no effect on the condition once the patient has gone blind.

Andrew Dillon, NICE Chief Executive, said the decision would be justified by both the improved quality of life for patients and cost savings in the long run.

"Lucentis is an expensive drug, costing more than £10,000 for each eye treated," he said. "But that cost needs to be balanced against the likely cost savings. AMD results in reduced quality of life and increased risks of illness, particularly in relation to accidents – especially falls – and psychological ill-health.

"Studies have also demonstrated that patients with visual impairment tend to have longer hospitalisations, make greater use of health and community care services and are more likely to be admitted to nursing homes.

From:
Eyesight-of-thousands-to-be-saved-after-Nice-approves-drug.html

Steve Winyard, Head of Campaigns at Royal National Institute for the Blind, said: "We've been waiting for this for over two years. It is a victory for thousands, bringing overwhelming relief to desperate people across the country. Finally the torment faced by elderly people forced to either spend their life savings on private treatment or go blind, is over.

"NICE's guidance will finally bring an end to a cruel postcode lottery."

Primary care trusts in England and Wales now have three months to fund the treatment for all eligible patients.

Lucentis is being provided through the country's first dose capping scheme, which sees the NHS funding treatment only up to a given stage, in this case 14 injections.

The decision comes after Health Secretary Alan Johnson ordered an investigation into the policy of denying NHS services to patients in England who top up their care with private treatment.

Currently, anyone who pays for any private care can be barred from receiving the normal package of NHS care but the review will look at whether such co-payments should be allowed in future.

In July, RNIB also backed three pensioners in landmark High Court action against Warwickshire PCT for denying them treatment.

Tom Bremridge, chief executive of The Macular Disease Society said: "Those responsible for NICE should be aware that during the cumbersome two year review process 152 PCTs have individually had the power to decide whether to let patients go blind or to save their sight. The resulting stress and suffering has been cruel and unnecessary.

"Many hundreds of vulnerable patients have been subjected to an appalling emotional rollercoaster ride for the past two years – during which many of them have lost their remaining sight."

Health direct points out that labour's NHS cash constraints blocked the use of
over a year ago.

On June 14, 2007 Health Direct posted
Cruel watchdog NICE condems 20,000 to blindness

Twenty thousand people will be condemned to blindness each year following a "cruel" and "appalling" decision by the health watchdog NICE, campaigners said today. The National Institute for Health and Clinical Excellence (aka National Institute for Curbing Expenditure) has come under intense pressure to approve the drugs Lucentis (ranibizumab) and Macugen (pegaptanib) for use on the NHS.

The drugs treat wet age-related macular degeneration (AMD), which affects around a quarter of a million people. Wet AMD is the leading cause of sight loss in Britain, with 26,000 new cases each year.

IVF for infertile couples 'should be NHS priority'

NHS trusts should make IVF a much higher priority by offering wider and more consistent treatment, according to a government panel.

The advice from the Expert Group on Commissioning NHS Infertility Provision, which was convened by health ministers this year, will put fresh pressure on the 95 per cent of primary care trusts (PCTs) that do not offer the three cycles of IVF recommended by the National Institute for Health and Clinical Excellence (NICE).

The panel proposes infertile couples should be offered wider and more consistent treatment on the NHS.

Its interim report comes as an NHS regional health authority has agreed for the first time to implement the NICE guidelines across all 14 of its trusts.

The decision by NHS East of England means infertile couples in Essex, Suffolk, Norfolk, Cambridgeshire, Hertfordshire and Bedfordshire will be entitled to three cycles of treatment from next April, provided they meet eligibility criteria.

Almost 45,000 cycles of IVF are performed in Britain each year - between one in six and one in seven couples are affected.

But limited NHS provision means the 75 per cent are conducted privately, at an average cost of £2,000 per cycle.

In 2004, NICE recommended PCTs should provide three cycles to women between 23 and 39, but a Department of Health survey in June found only 9 out of 151 PCTs in England met the standard.

The report says: "The provision of infertility treatment has not been seen as a traditional NHS service and, therefore, is often viewed as a relatively low priority compared to more visible conditions whose impact is well established.

"The group’s final report will seek to consider the often unseen consequences of infertility, including the impact on mental health and general wellbeing, which may draw on other NHS services for treatment, as well as the positive benefits of IVF."

Health Minister Dawn Primarolo will now write to all PCTs to clarify NHS IVF cycles should include the replacement of frozen embryos as well as fresh ones, significantly improving some infertile couples’ chances of having a baby.

The group, made up of five NHS commissioning experts, will also recommend the NHS set a fixed price that PCTs would pay for IVF.

A spokesman for the Department of Health said: "It is appropriate for IVF to be considered carefully for inclusion on the national tariff."

Mark Hamilton, chair of the British Fertility Society, said: "This is a positive development. Clinicians and practitioners involved in infertility services are all aware that we are not just dealing with physical pathology.

"Infertility is a disease, but it also has fallout beyond that for a significant proportion of couples, causing mental health problems, depression, stress-related illnesses and so on."

He added of the East of England decision: "It is a tremendous step forward that a region has seen the value of doing this, and I would hope that others will do the same. But there is certainly a view in the sector that central funding would solve an awful lot of problems."

From:
IVF-for-infertile-couples-should-be-NHS-priority.html

NHS risks losing cancer drugs after NICE blights patients

One of the world’s leading drug companies is threatening to withdraw some of its new cancer treatments from the process by which they are approved for use in the National Health Service.

Cancer patients in Britain will consequently be denied more effective drugs that are available to sufferers in other countries.

Roche, the Swiss pharmaceutical giant, has already refused to supply economic data on its drug Avastin for treatment of lung and breast cancer to the National Institute for Health and Clinical Excellence (Nice), the authority that evaluates the cost-effectiveness of medicines for the NHS. This means Avastin will not be available on the NHS for those diseases.

Avastin is said to double the time a breast cancer patient’s condition remains stable when compared with existing treatments. Studies have also shown improved survival rates for lung cancer victims.

Roche said last week it will consider withdrawing from other evaluations rather than submit products only for them to be rejected by Nice as too expensive.

The statement is the latest twist in the growing row over decisions by Nice. Earlier this month Nice caused an outcry in a preliminary decision when it rejected the use of Avastin (also known as bevacizumab), Sutent (sunitinib), Nexavar (sorafenib) and Torisel (temsirolimus) as too expensive to treat kidney cancer.

“The alternative to these drugs for many patients is death,” said Jonathan Waxman, professor of oncology at Imperial College, London. “Nice is making terrible mistakes.”

The survival rates for cancer in Britain are already among the lowest in Europe — on a par with Poland, Slovenia and the Czech Republic, according to data published last year.

However, cancer charities acknowledge there has been significant improvement in rates since the government made the issue a priority with its NHS Cancer Plan, first launched in 2000.

Some consultants argue, however, that Britain already spends less on cancer drugs than many other European countries and that it is “crazy” to reject drugs proven to prolong life.

Richard Barker, director- general of the Association of the British Pharmaceutical Industry, which represents the drug companies, said: “Nice does a tough and necessary job, but is making errors because of a very mechanistic approach.

It relies too much on arithmetic and not enough on clinical judgment.”

Nice was created in 1999 with the aim of ensuring that decisions on the best and most cost-effective drugs for the NHS were made at a national level, were transparent and could be challenged.

When the drug companies scrutinised the economic modelling used by Nice, they realised that the estimated costs of their drugs and effectiveness could vary widely.

Even more seriously, some of the calculations were wrong. There was an outcry in the medical community in February 2006 when Nice stated that Temodal (temozolomide) — declared as the biggest breakthrough in treating brain tumours for decades — did not offer value for money.

Temodal had won approval from the European regulator in 2004, but many British patients were denied treatment as Nice wrangled over costs.

Peter Davison, 48, a manager for Cambridge University Press, was among the few British patients who received the drug — because he was diagnosed with a brain tumour while working in Singapore.

“I was lucky to be abroad,” said Davison, who is now in remission. “Four months after I had the operation to remove the tumour, I was running and climbing mountains.”

When Schering-Plough — the pharmaceutical company which markets Temodal — prepared its appeal against the Nice decision, it identified an error in the modelling. Once corrected, the model showed the drug was cost-effective — and as a result it was ultimately approved for NHS use.

Not surprisingly, the drugs companies now want full access to the economic models, with the chance to check the accuracy of the calculations. In May, the High Court ruled that Pfizer and Esai, the companies which market the Alzheimer drug Aricept, should be given full access to these models.

“We believe this modelling might not be fit for purpose and we want to check it,” said a Pfizer spokesman last week. Nice said it was seeking leave to appeal to the House of Lords after the High Court decision.

Even where the models are correct, consultants and patients’ groups say Nice fails to give proper weight to the evidence from clinicians and patients’ groups.

The Sunday Times has highlighted the fact that NHS patients do not even have the option of paying for the drugs privately because of government ban on “co-payments”. The labour government has said it will review the issue.

Professor Sir Michael Rawlins, chairman of Nice, said the evaluation process was recognised internationally and Nice had been commended by the World Health Organisation for the quality of its work. He said: “We have a finite amount of money to spend on healthcare and we have to divide it up in as fair and as e