NHS drugs body NICE ‘bullied, ignored and patronised’ patients

The NHS’s drug-rationing body NICE has been accused of bullying, ignoring and patronising patients in consultation over the availability of life-altering medication.

The attack comes after the National Institute for Curbing Expenditure (NICE) ruled that drugs capable of prolonging the lives of kidney cancer patients by up to two years were too expensive to be made available on the NHS.

It coincides with the publication of a report which found that more than 1,000 patients have been turned down for cancer drugs in the past two years because of a postcode lottery.

Immediately after the decision on kidney drugs last week, campaigners denounced it as akin to a “death sentence” for thousands of people.

Now experts and patients’ representatives invited to participate in the consultation process have claimed it was “flawed and irrational”.

Charity Kidney UK is expected to make an official complaint that its advice was ignored, while three out of the four patient representatives asked to attend have registered protests.

One patient representative, Bill Savage, a retired management consultant who had a kidney removed, claimed that he and other patients were made to sit through a 101-page Powerpoint presentation focusing solely on the costing of the drugs.

“We were patronised and bullied by a process that marginalised us,” Mr Savage, 61, said.

Kate Spall, who won treatment for 80 patients this year by challenging the priorities of local primary care trusts, drew up advice for Nice with the help of a large number of cancer sufferers, but was so appalled by the process that she declined to be named as a consultee and made a written complaint.

“We waited for our opportunity to contribute – and it never came,” she said.

The four prohibited medicines include Sutent, which can prolong life in kidney cancer patients by up to two years. The draft guidance also rejected Avastin, Nexavar and Torisel.

Nice has said it has sent responses to all complaints but would not comment further.


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