David Rose
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Doctors are deciding against telling cancer patients about expensive new treatments to avoid causing distress when they find out that the NHS is unwilling to pay for them.
A quarter of specialists questioned in a survey admitted to hiding the facts about new drugs for bone marrow cancer that may be difficult to obtain on the NHS.
According to the poll, nearly all the doctors who chose not to mention such expensive drugs said that they did so because it might “distress, upset or confuse” their patients.
Three quarters said that cost issues were a consideration, 40 per cent cited “lack of evidence” and 29 per cent argued that there was “no point” discussing treatments that their patients were unlikely to receive.
It is believed that thousands of patients with various types of cancer could gain extra months or years of life from the latest, most effective drugs. In many cases they are being denied the treatments on the NHS because of a lack of approval by the National Institute for Health and Clinical Excellence (NICE), which assesses the cost-effectiveness of new medicines in England and Wales.
The poll, by the charity Myeloma UK, comes after patients with advanced kidney cancer were denied four treatments on the NHS under guidelines issued by NICE.
These and other new drugs for cancers of the lung, pancreas, colon and breast, and for multiple myeloma, are available widely throughout Western Europe, and in some cases in Scotland, but campaigners say that patients in England are being “left to die” if they cannot persuade their local trusts to fund treatment.
A total of 103 myeloma specialists in England, Wales and Scotland took part in the survey, with a quarter admitting that they avoided telling patients about licensed drugs that were still awaiting approval by NICE, which local health authorities were reluctant to pay for. Myeloma affects about 3,800 people each year in Britain and, of these, 2,600 are likely to die from it. NICE is reviewing treatments for the disease, including the drug Revlimid, which in clinical trials was found to be able to extend the life of some patients by up to three years.
The drug obtained its UK licence in June last year and is available across Europe, but NICE is not expected to make a final decision on whether it should receive NHS funding in England and Wales until early next year.
The drug, which costs £36,000 for one year of treatment, has been rejected as not cost-effective by the Scottish Medicines Consortium, NICE’s counterpart north of the Border.
NHS trusts have a legal obligation to provide treatments that are approved by NICE. In the absence of such approval, if a doctor thinks someone would benefit from a new medication, the patient can appeal to a committee at the local trust. Those who are refused must settle for less effective treatments or pay for the drugs.
In a statement, the Department of Health said that it had “issued guidance to the NHS which makes it clear that funding for a treatment should not be withheld simply because NICE guidance does not exist”.
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Somebody with a very sick sense of humour came up with title NICE
Graham Thompson, East Kilbride, Scotland
Patients should be fully informed as to medication available.
Patients can be very resourceful, if need be. The whole system stinks, we give our caring consultants a 22% pay rise, then they forget to tell patients about life saving drugs. This must be what they call the "hypocritic oath."
Graham, St. Albans, uk
How many people are going to die because they cannot have the drug on the NHS?..As my sister was refused sutent and only has weeks to live.
The NHS constitution states that the best ctreatment shall be given to every NHS patient...This means NHS is breaking that conmitment
carol, Swansea, Wales
So there is now a mushroom strategy for English cancer patients then? (It's a fact that the Welsh Assembly, as well as the Scots Gov pays for expensive drugs for their sick). No one to fight for us in England though obviously. Our treatment is to be told to stand in manure and switch the lights off.
Steve Gee, Ormskirk, ENGLAND.
People ignore that the NHS tries to do the most good for the most people-a limited amount of money. It comes down to a choice between a few extra years for one person (I don't mean to belittle this, I have lost family to cancer and know how time is valued) or MRI scanner/surgery for a premature baby
Jessica, Penzance, UK
Perhaps articles such as these should focus on why these treatments are so expensive and the huge profit margins made by the big pharmaceuticals. If the fat cats were a little less greedy, then maybe overstretched NHS budgets might not need to make these compromises and deprive those of treatment.
S, London,
As a cancer sufferer I am appalled by this.
The NHS is falling apart and no-one seems to give a damn!
A.C., Cleveland, U.K.
NICE not so NICE quango if you a patient and require treatment.
steve tea, manchester, cheshire
People should be wise to this already but why are cancer patients being punished and costly IVF treatment being encouraged? The name of the game is quite clearly discrimination.
judy, Liverpool, England
NICE and its UK counterparts focus consistently on health economics (the greatest good , to the greatest numbers of patients at the lowest cost) - poles apart from Clinical Excellence. NICE is tainted, and completely flawed, by combining both. An aspirin won't cure or control my cancer.
Ed McG
Ed McG, PRESTWICK, Scotland
Isn't this the sort of government conduct that one would have previously associated with the Soviet Union and (former) Eastern Europe?
MarkS, Leeds,