'It isn't easy to say no'

By Jane Elliott
Health reporter, BBC News

The NHS only has a finite pool for drugs and treatments

Imagine being one of the people who decides if a life-saving drug is too expensive for the public purse - when individual patients are desperate to get hold of the medicine.

Professor David Barnett is one of those people. Working for the National Institute for health and Clinical Excellence (NICE) he regularly has to make decisions which he knows will affect lives profoundly.

As chair of the appraisal committee, he has been involved in some capacity with all the watchdog's major decisions over the last decade, and says no decision is ever taken lightly.

'Finite pot'

But he said however difficult it is, a decision must be made as the NHS only has a finite pot of money and each drug or treatment has to fight for its place.

"The decisions are some of the hardest in public life.

You are unhappy because you are restricting the use of drugs to people who might get some benefit Professor Barnett

"NHS resources are not limitless and we have to decide what treatments represent best value to the patient as well as the NHS.

"We understand that patients, and the public, place considerable value on treatments which offer the possibility of extending life when we are close to death.

"But often medicines licensed for terminal illnesses affecting small numbers of patients, although offering demonstrable and substantial survival benefits over current NHS practice, are deemed not to represent a good use of NHS resources.

"I do reflect on the decisions we make and frequently do not like the fact that we have to say 'no' to a medication that has licence approval and appears to be efficacious and the patients and professionals want to be able to use it.

"It is not easy to say no in those circumstances."

Pressure mounting

Often decisions - such as the rejection of funding for the kidney cancer drugs Sutent, Avastin, Nexavar and Torisel - have resulted in an avalanche of media attention and criticism.

Professor Barnett said that although he had learnt over the years not to take these comments too personally, he felt they added pressure on members, particularly the lay members.

These members of the public are offered support to help them cope.

And he said the often one-sided media response to decisions belied the fact that they represented months or years of work and were a response to limited funds.

"I think it is very distressing for committee members when they read negative comments in the media about the work that they do, such as those describing them as 'bean counters' or accusing them of not taking any notice of what patients say or feel.

"After the kidney drug decision I read some comments on one paper's website that were extremely unhelpful and hurtful."

Pros and cons

He added that, contrary to how the watchdog was often perceived, it had only rejected seven out of 106 drug appraisals.

"None of the members has an axe to grind, none of them are paid to do this work and all have an active part to play either on the periphery of heath care or involved as clinicians delivering care," he said.

"All of them feel very unhappy about being seen to be restricting the funding for healthcare technologies.

"But they are all completely committed to the idea that they work to represent the NHS as a whole to ensure rational use of resources across the NHS and to be very aware of opportunity costs and the importance of a level playing field in all patients needing care in the NHS."

"So, although it is not that common to say 'no' outright, of course these are the ones to hit the headlines, they become cause celebres, they become the subject of appeals to parliament.

"The distressing ones are the ones where you know you are going to have to say to people that this technology is not recommended because it is manifestly not cost effective or good value for money for the NHS and the stress that occurs about that is two-fold.

"One is that you are unhappy because you are restricting the use of drugs to people who might get some benefit and secondly you know that the response to that is going to be extreme from outside NICE in certain cases.

"Beta interferon, the multiple sclerosis drug, is a good example of that.

"It took two years to come to a decision and in the end the decision was that Beta interferon was not cost effective.

"It was then at that stage that the Department of Health agreed, at the suggestion of NICE, a risk sharing scheme with the manufacturers that enabled the drug to be used in the NHS in a cost effective manner."

Finite resources

Professor Barnett, a clinical pharmacology expert at the University of Leicester and a cardiovascular physician at the Leicester Royal Infirmary, does between three and four days a week work for NICE.

He said that while large sections of the public remained unaware of the need for NICE, it did receive international plaudits from countries, keen to implement the system and that was recognition of the job that they do.

But he does think the job is worthwhile.

"We do feel as physicians that it is a shame finances have to limit what you can do for people though.

"But our job is to decide whether what we are being asked to look at represents good value for money in that finite pot of NHS resources."