Drug appeal procedures chaotic
The Rarer Cancers Forum said the appeal system was chaotic and the result often depended on where the patient lived.
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.
“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-Webb of Rarer 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.
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. In total, 5,000 appeals were made, mostly by patients with advanced cancer, over a 20-month period.
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”.
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.
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.”
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.
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.