The price of health and the doctor's dilemma

The rationing of the drug Betaferon - random, arbitrary and byzantine - stands as a paradigm of the modern NHS

Share
Related Topics
At last we have the first effective drug specifically for multiple sclerosis. Betaferon arrives as a blessing, you might think. But not for the National Health Service. The story of this drug stands as a paradigm of the increasingly byzantine ways of the NHS. This is an everyday tale of rationing - random, arbitrary and anything but rational.

First, to sinking hearts inside the Department of Health, the drug got its licence in December, certifying that it was effective for the 10,000 people who have the relapsing-remitting form of the disease. On average, these patients suffer perhaps two or three attacks a year which can be terrifying, agonising and incapacitating. An attack lasts an average of two weeks, after which the disease retreats again, though not completely.

Betaferon can reduce the number of attacks by one third. However, its makers stress that it is not a cure, nor does it delay the creeping onset of disability.

Julia Chapel is a typical patient. She fears she is losing her eyesight and finds she uses her wheelchair more often, as each attack leaves her worse than she was before. Her neurologist, from Sheffield, called her in to offer her Betaferon, though she had not asked for it. But when she arrived at the clinic to start the treatment, he apologised, saying he had been rather naive and there was no money after all.

Now she is campaigning vigorously in her local MS group. "Just in our group in Barnsley there are about 50 patients who would benefit. The health authority says it will spend pounds 50,000 on the drug next financial year, but that's only enough for five of us," she says. "Who is going to decide who gets it?"

It costs roughly pounds 10,000 a year per patient - pounds 100m to give it to all those who might benefit. MS patients' organisations were well prepared in advance for a battle to ensure they got it. As a result of their vociferous demands, as soon as it was licensed the NHS executive sent out guidelines to every health authority telling them to prescribe it, though only through hospital neurologists - a sensible proviso, since GPs would have little way of knowing which patients would benefit.

What has actually happened? The guidelines have been widely ignored by many health authorities. In Scotland, the Department of Health has announced that none of its 25 neurologists may prescribe it except in limited trials. All over the country the MS Society has reports that patients are being refused the drug, despite the express wish of their neurologists to prescribe it.

Take Nottingham as an example. It refused to allow its neurologists to prescribe it on cost grounds. Professor Lance Blumhardt was incensed. "I've got 80 to 100 patients lined up for whom it would stop some of the most severe attacks, but I haven't got the money," he says. "This hospital has a pounds 12m deficit."

The row that followed led the Nottingham Health Authority to a bold decision to hold a public meeting to try to explain to patients and their doctors why they could not have the drug. Dr Sarah Wilson, the local director of public health, who makes the key purchasing decisions, was one of the administrators who talked to them in the language of priorities. Betaferon for all suitable patients would cost Nottingham pounds 4.5m. "The pounds 10,000 cost for each MS patient would buy four hip operations, or 10 cataracts," she told them. "It would pay for most of a district nurse who would treat a great many people or it would pay for a lot of physiotherapy."

The MS patients were, of course, unmoved; as was their champion, Professor Blumhardt. Strong views were expressed and as a result the health authority went away and found some extra money.

However, it is far too little money for all Professor Blumhardt's patients. "It would be enough for about 10 patients, I think," he says gloomily. "But how am I to choose which ones should get it? In the United States they sometimes select patients by lottery. Why not?"

But the rationing problem is not even that simple. "They have given me some money to add to my budget, but it isn't ring-fenced. I wish they had ring-fenced it." He sighs heavily because that puts the rationing decision right back where he does not want it: in his hands.

His neurology service is the worst in Western Europe, with only six neurologists for a 2.2 million population. He talks wearily of a long list of desperate needs - of badly treated epilepsy, dangerous aneurisms, a new drug for motor neurone disease, stroke patients in great distress.

So, what will he decide? Probably he will decide to spend the money elsewhere. Selecting a handful of MS sufferers does not seem "worth the candle" when other needs are yet more pressing. Yet he feels deep sympathy for his MS patients.

Is this a new and sudden rationing shock? Not really. The NHS has always rationed, but under the old system these things were discussed behind closed doors. Now the Patients' Charter mentality has been unleashed. All the talk of purchasing and cost has made patients well aware that everything has a price-tag. But is this really the right way to decide who gets what?

The minister passes the buck to the NHS executive, which smartly hands it on down to the health authorities. If they are quick-footed, they do what they did to Professor Blumhardt and push it on down to him. He is the one who has to eyeball his patients in his clinic, so he can take the rap and carry the can. "Sorry, Mrs Smith, you just aren't in quite as much pain as Mr Brown next door." That sounds quite reasonable. After all, who better than he to judge between the needs of his own patients?

Except that as far as the individual patient is concerned, this random way of rationing means there is no longer a national health service at all. Instead, you have to choose where to live according to the illness you suffer: IVF, grommets, and the drug Epo for dialysis patients are all key treatments only available according to local whim. Maybe towns should have big signs up: Welcome to Liverpool, Land of the Lung Transplant! Or Kidderminister for Kidneys! Middlesbrough for Metabolics!

Doubts have been raised about how effective Betaferon is - not least by the Consumers' Association's Drug and Therapeutics Bulletin. At its best, it is so far only a palliative drug. But that is beside the point. MS patients have had their expectations raised, only to be told they cannot have it. Perhaps the drug should not have been licensed. Or the NHS should have been bold enough to announce that no one would get it.

Who should do the rationing? The politicians - it is their job to set the policy and take the flak. Instead, at the very word "rationing" health ministers turn tail and hide under their desks. People increasingly understand that the NHS is cash-limited and cash-strapped, but they cannot understand or accept gross and arbitrary geographical inequalities in the treatment they get.

React Now

Latest stories from i100
Have you tried new the Independent Digital Edition apps?
iJobs Job Widget
iJobs General

QA/BA - Agile

£400 Per Day: Clearwater People Solutions Ltd: Our client are currently seekin...

PPA Supply Teachers

£121 - £142 per day: Randstad Education Luton: Early Years, KS1 & 2 Prima...

Primary Supply Teacher

£121 - £142 per annum: Randstad Education Luton: Early Years, KS1 & 2 Prim...

Primary Supply Teacher

£121 - £142 per day: Randstad Education Luton: Primary supply teacher Hertford...

Day In a Page

Read Next
 

Ebola virus in the US: How did the disease ever spread this far?

Sophie Harman
 

The most common question I am asked is 'How do I become a YouTuber?' This is my reply

Jim Chapman
Ebola outbreak: The children orphaned by the virus – then rejected by surviving relatives over fear of infection

The children orphaned by Ebola...

... then rejected by surviving relatives over fear of infection
Pride: Are censors pandering to homophobia?

Are censors pandering to homophobia?

US film censors have ruled 'Pride' unfit for under-16s, though it contains no sex or violence
The magic of roundabouts

Lords of the rings

Just who are the Roundabout Appreciation Society?
Why do we like making lists?

Notes to self: Why do we like making lists?

Well it was good enough for Ancient Egyptians and Picasso...
Hong Kong protests: A good time to open a new restaurant?

A good time to open a new restaurant in Hong Kong?

As pro-democracy demonstrators hold firm, chef Rowley Leigh, who's in the city to open a new restaurant, says you couldn't hope to meet a nicer bunch
Paris Fashion Week: Karl Lagerfeld leads a feminist riot on 'Boulevard Chanel'

Paris Fashion Week

Lagerfeld leads a feminist riot on 'Boulevard Chanel'
Bruce Chatwin's Wales: One of the finest one-day walks in Britain

Simon Calder discovers Bruce Chatwin's Wales

One of the finest one-day walks you could hope for - in Britain
10 best children's nightwear

10 best children's nightwear

Make sure the kids stay cosy on cooler autumn nights in this selection of pjs, onesies and nighties
Manchester City vs Roma: Five things we learnt from City’s draw at the Etihad

Manchester City vs Roma

Five things we learnt from City’s Champions League draw at the Etihad
Martin Hardy: Mike Ashley must act now and end the Alan Pardew reign

Trouble on the Tyne

Ashley must act now and end Pardew's reign at Newcastle, says Martin Hardy
Isis is an hour from Baghdad, the Iraq army has little chance against it, and air strikes won't help

Isis an hour away from Baghdad -

and with no sign of Iraq army being able to make a successful counter-attack
Turner Prize 2014 is frustratingly timid

Turner Prize 2014 is frustratingly timid

The exhibition nods to rich and potentially brilliant ideas, but steps back
Last chance to see: Half the world’s animals have disappeared over the last 40 years

Last chance to see...

The Earth’s animal wildlife population has halved in 40 years
So here's why teenagers are always grumpy - and it's not what you think

Truth behind teens' grumpiness

Early school hours mess with their biological clocks
Why can no one stop hackers putting celebrities' private photos online?

Hacked photos: the third wave

Why can no one stop hackers putting celebrities' private photos online?