NHS watchdog to tell patients how to buy medicine unavailable on health service

Patients are to be given advice on drugs rejected by the NHS - so they can choose to buy them privately.

The National Institute for Health and Clinical Excellence (NICE) is drawing up plans to provide patients with independent medical guidance on treatments for diseases such as cancer. The advice would include drugs that NICE has ruled the NHS should not use because they are too expensive. For the first time patients would be able to receive impartial guidance on the health benefits of unapproved treatments and compare them with those available on the NHS. They could then decide if they want to pay for them privately rather than opting for the free drugs, which can be less effective.

The development follows growing public anger over the number of drugs and treatments being blocked by the Nice because they are not 'cost effective'. Many are available abroad and can offer people longer life expectancy or health benefits. Last week the watchdog ruled that four kidney cancer drugs costing around o24,000 a year per patient did not represent value for money.

Under current health service rules patients who choose to buy drugs that the NHS deems too expensive are made to pay for the rest of the care. But ministers are expected to end this following a review of the system which is due to report in October. It is expected this will give the green light for patients to 'top up' their treatment. As a result, NICE - which is currently only responsible for deciding which treatments are available free on the NHS - is preparing to publish guidance on drugs they have ruled against.

Speaking to The Daily Telegraph, Andrew Dillon, the chief executive, revealed his organisation was preparing to play a central role if the Department of Health give the go-ahead to so-called "co-payments" in the autumn. He said: "If the Government wants to go in that direction we are absolutely the right organisation to support the process for doing so. "One of the things we think we could do really well would be to provide entirely independent objective information for individuals to make up their own mind. We think we could do that very well and would be happy to do that."

NICE has faced criticism for rejecting a series of drugs widely available in Europe and America - sparking allegations that it is putting financial considerations above medical benefits. The disclosure that it is now preparing to offer advice to patients buying their own drugs will underline concerns that the development of expensive new drugs is leading to the emergence of a "two-tier NHS".

There are also fears that patients unable to afford 'top ups' will be angered at learning they may not be receiving the best treatment available.

It is understood that the information will largely be provided on-line via a new website called "NHS Evidence". The site is being established to offer advice to NHS doctors and hospitals but could be extended to provide patients with clear information on different treatments and drugs available. If co-payments are permitted the medical benefits of privately-available drugs will also be set out. The NHS will also be able to detail the likely costs of a prescription.

Norman Lamb, the Liberal Democrats' health spokesman, welcomed the move. "One of the big dangers of allowing people to top-up their treatment is that consumers aren't informed and they can be susceptible in a moment of crisis to pressure from pharmaceutical companies," he said. "These drugs can be very expensive and I would welcome the provision of a source of independent, reliable advice."

Medical experts and patient groups said the development may also put more pressure on NICE to approve drugs which have medical benefits which are currently unavailable on prescription. Christoph Lees, an NHS consultant and founder member of the Doctors for Reform group, said: "The fact that NICE are preparing to offer advice shows that the realisation is finally filtering through that you can't withhold information on good drugs which are out there and what they can do, even if the NHS can't afford it. "But that has got to be balanced with some sort of mechanism to make sure that people can afford access to these treatments."

Michael Summers, vice chairman of the Patients Association said: "Any information which is available is obviously valuable. But people would have less need to top-up if NICE did not reject cancer drugs available elsewhere."

Andrew Lansley, the shadow Health Secretary, said: "It seems that the Government is intent on pre-empting the outcome of its own consultation on top-up payments and that it wants to assist people to buy their own drugs, rather than have them provided on the NHS. "But Labour are still avoiding two key questions: if patients buy top-up drugs, will that prejudice their access to NHS treatment? Secondly, why is access to new cancer medicines worse in the UK than in the rest of Europe and America?"

NICE is under mounting pressure after barring four kidney cancer drugs available in other countries last week. Charities and patients are preparing to make official complaints about the approval process with one sufferer claiming he was "patronised and bullied" by the process.

Sutent, one of the drugs rejected, can double life expectancy to 28 months for people diagnosed with kidney cancer. A report has claimed that more than 1,000 patients had been turned down for cancer drugs over the past two years because of a "postcode lottery" in treatment.

Patients are also being forced to mount legal action to get hold of drugs that NICE have not yet approved. A grandfather told he only has two months to live has mounted a legal challenge to gain access to a drug that could possibly extend his life expectancy by up to three years. Colin Ross, 55, of Horsham, West Sussex, who has multiple myeloma, a cancer of the blood cells is fighting for the drug Revlimid after being refused it by West Sussex Primary Care Trust because it has not yet been granted approval by NICE.

Source