NICE proposals for citizens council condemned by patients

A “citizens council” announced last week by the National Institute for Clinical Excellence (NICE) to advise on decision making has been attacked as a “toothless tiger” by patients.

The council will be made up of 30 members of the public who will be paid £150 ($231;€235) a day to consider “generic” issues. The council, which will act in an advisory capacity, will meet for three days twice a year and will not have any input into decisions on individual treatments.

Mike Stone, chief executive of the Patients Association, said that setting up the council was a token gesture, and he called for patients to be involved in decisions on drugs at every step of the process.

“There has to be true decision making by the public and true involvement and not just this sort of tokenistic body. It could be viewed as a toothless tiger by many.”

The chairman of NICE, Professor Michael Rawlins, said he wanted genuinely lay people on the council: doctors and nurses will be banned from taking part, as will representatives of patients groups and lobbying organisations.

Professor Rawlins said the institute had been considering the involvement of members of the public for two years. The publication of the Kennedy report after the inquiry into cardiac deaths among children in Bristol “only served to reinforce the importance of involving the public in NHS decision making.”

Last month NICE came under fire from the health select committee, which said the institute's decision making process should be more transparent.

Professor Rawlins denied that the council was set up to deflect criticism over controversial decisions on drugs such as interferon beta.

“There's never a quick fix for that sort of problem. Whenever a patients group doesn't get its way it is going to feel disenfranchised. We're not going to please all of the people all of the time.”

He also defended the institute's decision not to involve the council in making judgments on individual treatments.

“We're running appraisals [of treatment] at the rate of 30 to 40 a year. We couldn't possibly have 30 to 40 citizens councils operating every year as it would be very expensive.

“Citizens councils would not have the power to consider individual treatments because so many of the appraisals require scientific judgments.”

The Association of Community Health Councils welcomed any patient involvement in decision making but a spokesman added: “The body seems like a standing focus group for NICE. It's not going to have that much power within the organisation.”

Meanwhile the Conservative health secretary, Dr Liam Fox, said the government was already hiding behind the “figleaf” of NICE, forcing the institute to take political decisions on whether a drug was affordable.

His said the citizens council was a second figleaf to hide behind.