Who pays for a child to grow tall?

Expensive drugs are banned by NHS managers, but politicians still won't debate health rationing
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The Independent Online
Child T is tiny, far too small. At eight he is the same height as his five-year-old sister, and life is getting hard for him at school. He suffers from a genetic disorder called neuro-fibromatosis and his consultant at Great Ormond Street children's hospital says that he needs a boost of growth hormone.

The family was first told he needed the drug in January, but he still hasn't received it. It would cost about £5,000 for the first year, rising to £10,000 a year, probably about £60,000 in total over his growing years. Every month that goes by his height falls behind, making it harder for him to catch up. The specialist told Child T's GP to prescribe the drug. Child T's GP refused, and the family feels it has been caught in the crossfire over who should pay.

They live in Bromley, where the health authority has just taken a drastic step. It has drawn up a "red list" of 23 very expensive drugs, which GPs are told they must not prescribe. The list includes the latest drugs for cystic fibrosis, multiple sclerosis, HIV/Aids and many other conditions. Bromley's unilateral action, until now unpublicised, is unprecedented.

Bromley Health says it is not intended to deny these drugs to patients, but to make hospitals pay instead of GPs. Its contract with Great Ormond Street covers treatment for stunted growth. The consultant, however, says he is under an edict from his managers not to prescribe this drug. "They say if we, as a national specialist centre, prescribed growth hormone for all our cases from all over the country, then it would take up 25 per cent of the hospital's drug budget, so we expect the patient's GP to do it," he says. Bromley Health's chief executive, Claire Perry, replies tartly that prescribing such drugs falls within the terms of her contract with the hospital. Not fair, replies the hospital, it was never spelt out in the contract and Bromley is changing the terms and conditions. Impasse.

Bromley's red list of banned drugs comes dressed up in some very respectable clothes. The document explains that these drugs are highly specialised, and most GPs are unlikely to have much idea how they should be used. All the GP does is to foot the bill, while the patient is treated by the consultant as a hospital outpatient.Child T's GP protests that he won't be used as a rubber stamp and that with his signature comes legal liability.

In Child T's case, the growth hormone is not technically licensed for this condition, so there is added risk. Clinically and ethically, the consultant should put his name on the prescription. The hospital says it is a grey area still to be negotiated. But money and clinical judgements are interwoven in an almost seamless web.

The language of rationing is everywhere now in the NHS - except on the lips of Virginia Bottomley, or any other politician in any party. Those who manage the budgets she sets have no choice but to set priorities, though the Government denies the need for a full and honest public debate about it. Ms Perry says the need to talk about rationing is becoming acute. For example, in a few months a new drug for multiple sclerosis, beta interferon, will get its licence. It will cost about £7,000 a year to delay the progress of the disease for two or three years in some cases, but it is not a cure. Bromley estimates that it would cost between £2m and £4m a year for its MS patients. Should it offer it to all who want it?

Bromley has stepped into the front line on rationing. In a new initiative, about 1,000 local people have taken part in rationing role-play. The aim is to make them think about priorities. Next time there is a medical cause clbre in the press, a Child B denied treatment for leukemia, or indeed a Child T, they hope these people will stop and ask themselves sensible questions about the relative value for money of various treatments. "What amazes me most about these sessions is how few people realise that these difficult choices have to be made," says Ms Perry.

It doesn't amaze me at all. People react in an infantile way to any hint of shortages in the NHS because politicians have treated the debate in an infantile way. The Opposition relishes every scare story about a child who is not getting some fantastically expensive, painful treatment with very low odds of recovery. The Government is too cowardly to be honest about the dilemmas. Mrs Bottomley simply passes it on down to "local decision".

But how can one area make a drastically different decision to another? Currently, some offer IVF fertility treatment and some don't. Some are better at saving cancer patients than others. But how could any authority overtly refuse a life-saving treatment offered elsewhere? The debate has to be national. Labour would look considerably more grown-up if it abandoned short-term electoral point-scoring and promised to engage with the real issue.

In a democracy, people will not easily agree to ration, let alone agree on what to ration. Managers have to set priorities within the budgets politicians give them. But citizens can refuse to engage with it, particularly the majority who did not vote for the party in power. They can wriggle out of it by protesting that the budget is too small in the first place. What about giving the NHS more money from defence, says the left. What about cutting overseas aid or social security for scroungers, says the right.

"I'm sorry, Mrs A, there's no more we can do for you," a doctor used to say in the old days, and patients never suspected that money came into it. Maybe it was easier for us to be treated like children. But the NHS reforms have brought money out into the open and patients will no longer take no for an answer. Demands are escalating, everyone wants state- of-the-art everything, and they know what it is. There used to be a conspiracy of opacity. Now the conflicts between doctors, managers and politicians have let in just enough transparency to alert us.

In the end people may decide they can't make such painful choices, between the old lady's hip and the premature baby, the transplant and the rare drug. What are they to do? Vote more money for health, although it will never be enough? Devise some open rationing system they can trust? That is what political leaders are paid to do, but here our political leaders have failed. The Tories probably can't deliver as they have, fairly or unfairly, lost the public's trust on the NHS. Labour needs to open the debate to prepare the ground for a national rationalisation of treatments, and a possible curtailing of some, if it takes office. Labour may have lost its bottle, though: the whisper that it might withdraw IVF treatment led to a hail of bullets and a hasty retreat.

Meanwhile, tiny Child T still hasn't got his growth hormone. He probably will get it now, because so far most of these bureaucratic budget wrangles do get resolved. The Child Growth Foundation has many similar cases and snappily wins them by alerting the national or local press. But rationing by newspaper headline is no way to set NHS priorities.