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Drug appeal procedures 'chaotic' Drug appeal procedures 'chaotic'
(about 1 hour later)
The pleas of cancer sufferers in England for drugs other than those usually funded by the NHS are not dealt with fairly, a patient group claims.The pleas of cancer sufferers in England for drugs other than those usually funded by the NHS are not dealt with fairly, a patient group claims.
The Rarer Cancers Forum said the appeal system was chaotic and the result often depended on where the patient lived.The Rarer Cancers Forum said the appeal system was chaotic and the result often depended on where the patient lived.
Over a 20-month period, an estimated 5,000 patients, most with advanced cancer, lodged appeals but a quarter of appeals were rejected, it said. One in four appeals made in a 20-month period was rejected. But one primary care trust had no successful appeals, compared to 96% in a nearby trust.
The government said its new "NHS Constitution" would improve fairness.The government said its new "NHS Constitution" would improve fairness.
In the last 20 months, 5,000 cancer patients have been forced to plead for their lives. There has to be a better way. Penny Wilson-WebbRarer Cancers ForumIn the last 20 months, 5,000 cancer patients have been forced to plead for their lives. There has to be a better way. Penny Wilson-WebbRarer Cancers Forum
The recent decision by the National Institute for Health and Clinical Excellence (NICE) advising against the use of four drugs for advanced kidney cancer in England and Wales has thrown the spotlight on the patients fighting to receive them.The recent decision by the National Institute for Health and Clinical Excellence (NICE) advising against the use of four drugs for advanced kidney cancer in England and Wales has thrown the spotlight on the patients fighting to receive them.
One of the routes a patient can take if the drug they believe they need is not funded by their local NHS is to lodge an "exceptional request" directly to the primary care trust, and put forward their particular medical or personal circumstances which they say means it should be funded for them.One of the routes a patient can take if the drug they believe they need is not funded by their local NHS is to lodge an "exceptional request" directly to the primary care trust, and put forward their particular medical or personal circumstances which they say means it should be funded for them.
The latest report, compiled using information obtained under the Freedom of Information Act, reveals that approximately a quarter of appeals are rejected. The latest report, compiled using information obtained under the Freedom of Information Act, reveals that approximately a quarter of appeals are rejected. In total, 5,000 appeals were made, mostly by patients with advanced cancer, over a 20-month period.
However, it also shows that where patients lived seemed to make a difference to the outcome of appeals.
In one primary care trust, no appeals had been successful, while in a neighbouring trust, only 4% had been refused.
No definitionNo definition
There is no national guidance on how appeals should be run by individual primary care trusts, with some choosing to appoint committees including experts, while others do not.There is no national guidance on how appeals should be run by individual primary care trusts, with some choosing to appoint committees including experts, while others do not.
The forum said there was not even a definition of what constituted an "exceptional case".The forum said there was not even a definition of what constituted an "exceptional case".
It is calling for the appeals to be handled on a regional, or even national level, rather than left in the hands of local NHS managers.It is calling for the appeals to be handled on a regional, or even national level, rather than left in the hands of local NHS managers.
Its chief executive Penny Wilson-Webb said: "This audit shows that the exceptional cases process is in chaos and patients are suffering.Its chief executive Penny Wilson-Webb said: "This audit shows that the exceptional cases process is in chaos and patients are suffering.
"In the last 20 months, 5,000 cancer patients have been forced to plead for their lives. There has to be a better way.""In the last 20 months, 5,000 cancer patients have been forced to plead for their lives. There has to be a better way."
Expert criticismExpert criticism
Dr Steve Schey, a consultant haematologist at King's College Hospital in London, who has appeared before appeal committees, said that the process seemed to be a "lottery".Dr Steve Schey, a consultant haematologist at King's College Hospital in London, who has appeared before appeal committees, said that the process seemed to be a "lottery".
"We urgently need some standardisation and transparency in the decision-making process.""We urgently need some standardisation and transparency in the decision-making process."
NICE guidelines cover England and Wales, where similar appeals process is in force.NICE guidelines cover England and Wales, where similar appeals process is in force.
Scotland and Northern Ireland have their own guideline bodies, and systems for patients to challenge decisions not to fund drugs.Scotland and Northern Ireland have their own guideline bodies, and systems for patients to challenge decisions not to fund drugs.
A spokesman for the Department of Health said: "We have heard from patients that one of their major concerns is the perceived 'postcode lottery' in access to drugs - that there are too many variations around who gets access to prescribed drugs and that these variations are a lottery depending on where you live.A spokesman for the Department of Health said: "We have heard from patients that one of their major concerns is the perceived 'postcode lottery' in access to drugs - that there are too many variations around who gets access to prescribed drugs and that these variations are a lottery depending on where you live.
"The draft NHS Constitution will address this by making it explicit that patients have the right to NICE-approved drugs if clinically appropriate."The draft NHS Constitution will address this by making it explicit that patients have the right to NICE-approved drugs if clinically appropriate.
"We will also speed up the national process for appraising new drugs and make more transparent and consistent the process for local funding of drugs not appraised by NICE or where NICE has yet to issue guidance.""We will also speed up the national process for appraising new drugs and make more transparent and consistent the process for local funding of drugs not appraised by NICE or where NICE has yet to issue guidance."