Deciding who gets medicine on the NHS

By Jane Dreaper
BBC News, health correspondent

Expensive new medicines are stretching resources

It is Britain's most pressing health issue - how can the NHS afford all the expensive new technologies coming its way?

I was given exclusive access to a panel at a Primary Care Trust which meets every month to rule on exceptional cases.

Birmingham East and North PCT covers a part of the city where men still die from heart disease many years before their time, and deaths among babies are three times the national average.

I listened to a meeting of three men and five women, who all had the unenviable task of deciding whether patients should be given treatments that wouldn't usually be funded by the health service.

The panel meets every month and has a mixture of medical and managerial expertise.

The doctor who's presented this says the severity of this patient's symptoms is unusual - but that's not the same as exceptional Panel member

The first business is two requests from patients with a painful rheumatic disease, ankylosing spondylitis.

They want drugs which cost £11,000 a year, but haven't yet been given the seal of approval by the health watchdog, the National Institute for Health and Clinical Excellence (NICE).

Other local patients might be eligible - so the question is: are these exceptional cases?

"For a PCT our size, I guess we're looking at anywhere between 250 and 500 cases who may potentially benefit from this drug," said the public health director.

Another panel member said: "The doctor who's presented this says the severity of this patient's symptoms is unusual - but that's not the same as exceptional.

"I guess for me it's the uncertainty about how this drug will affect this patient. Funding it would be a speculative move - given the evidence we've got here."

Both requests are turned down.

Bone cancer drug

Next on the agenda is Velcade, a drug for bone marrow cancer which has been in the news because its makers are offering to refund the NHS in cases where it doesn't work.

Frankly, Herceptin is just about the worst thing I could choose to spend that money on Sophia Christie Birmingham East and North Primary Care Trust

The treatment can extend life by up to a year, but costs an average of £18,000.

"This is not a drug that cures the condition," the trust's medical director told the meeting. "It's purely to see if you can try to reduce the length of time to the next relapse."

The panel are again cautious - they feel the doctor needs to give them more information about this patient's current condition.

The chairman of the meeting sums it up: "A very difficult case¿..it feels as though it's a situation where we need additional information. Is that felt to be the best course of action?"

There are noises of agreement - but also a deep sigh.

The tone of the meeting is businesslike, but the panel members admit privately that these decisions pull at their heart strings. They feel as though they are making judgements of Solomon.

Rehabilitation programme

Next is a request for a £700 course of conductive education - this is a rehabilitation programme that's been requested by a stroke patient. The panel feels the methods aren't backed by enough evidence.

One member points out: "I was quite concerned, looking at the literature from the organisation, that there've been no large-scale studies on the benefits of conductive education on long-term conditions since it was founded in the 1940s."

The final discussion involves an obese patient, who's had one stomach operation and is asking for a second.

It is significant surgery, requiring follow-up with counselling and dietician services.

A GP on the panel said: "The question is, why be so confident that a different operation that has even more side effects than gastric banding is going to make any difference? I'm not convinced."

The PCT's medical director added: "We're talking about a 1% possibility of death and a 10% chance of complications from the surgery - it's not something to be taken lightly."

One of their colleagues says: "It's that choice between operations for a few or services for the population - which is going to have the most benefit?"

Tough line

It's that need to consider the whole of the local population that makes the bar so high here.

Five of the seven cases I listened to were turned down. The Velcade and stomach surgery patients may get approval - if they can come up with a more detailed justification.

The taxpayers' money that could have been spent on these cases doesn't get withheld - it's part of the general pot for all the area's health needs.

The landscape beyond the fourth floor office of Sophia Christie, who runs Birmingham East and North Primary Care Trust, isn't glamorous - the gasworks and the tower blocks encapsulate the health problems that still plague this area.

Deaths among babies are three times the national average, and although the trust has been given bigger budgets recently, Sophia Christie is troubled that large parts of that money have been swallowed up by new cancer drugs like Herceptin.

Best choice?

"Each treatment is costing us about £27,000," she said. "My job is to ask - is that the best way of spending taxpayers' money for a population that's characterised by early deaths in men from heart disease and by the deaths of babies.

"Frankly, Herceptin is just about the worst thing I could choose to spend that money on.

"I think these very high-profile drugs do distort investment - and at the expense of people who are less well-placed to make their case in a public forum."

Patients are becoming more aware of the opportunities to press their individual cases, and drug companies are finding new ways to raise awareness of their products.

The work of the NHS panels trying to balance these difficult decisions will become increasingly vital.