The NHS's great kidney failure

Britain has dialysis facilities among the worst in Europe but a legal reform could save many lives; In Europe only Bulgaria dialyses fewer people per head of population

"Thousand Dead In Medical Disaster!" That would be quite a headline. Who? Where? When? Luckily for the Government no one knows who they are, although the Department of Health is sitting on a report that shows at least a thousand people a year die of kidney failure because of the lack of kidney dialysis facilities.

Unfortunately I cannot begin this column with a telling, indignant quote from a grieving next-of-kin because relatives of the dead patients rarely discover that their loved one had renal failure or that their lives could have been saved. People are so trusting when a doctor says solemnly, "Sorry, there's nothing more I can do," The death certificate will almost certainly give heart failure or pneumonia as the immediate cause and not the kidney failure that precipitated it. But if we had a thousand names and faces, a roll-call of the annual dead, then public indignation would soon put a stop to it.

How do we know so many die? Because the Department of Health commissioned a report, the Renal Service Review, exploring the erratic provision of kidney treatments. The report was delivered back in the autumn of 1994. The department promised to publish it, but has prevaricated.

This is what it says: all suitable patients up to the age of 80 should get life-saving renal dialysis, but many never get the chance. On average, 80 new patients in every million of the population will need treatment for kidney failure each year, but in Britain only 65 people per million get it. Among European countries, only Bulgaria dialyses fewer people per head of population.

Regional variations verge on the grotesque. While there should be some differences, partly due to Asians' and Afro-Caribbeans' greater vulnerability to kidney failure, there is no excuse for the great chasm in provision between regions: in Wales 108.6 per million receive treatment, but Oxford only treats 44.3, and worst of all Merseyside, with only 39.6 per million. The report estimates that a further pounds 250m needs to be spent, double the present sum, to save the lives of kidney patients who are never offered dialysis.

Next week the new annual contracts within the NHS take effect. The Department of Health promised that the report would be published together with new guidelines on the level of renal treatment each health authority should purchase. But instead the report was sent to the Treasury where it has stayed conveniently for 18 months, now too late for this year's contracts.

Successive health ministers have said different things about this report. Tom Sackville wrote to the National Kidney Federation in March last year, saying that it was his department's "firm intention to publish this in good time to influence purchasers in the next contracting round". The tune had changed, however, by last July when John Bowis told the Commons: "The renal review was an internal review for the Department of Health and it has not been issued for formal consultation. Ministers are currently considering it." A few weeks ago another health minister, John Horam said: "Although the review was completed some time ago, it has taken a considerable time to consider all its implications."

The mounting strain on some hospitals means some patients are being turned away, referred to other equally full units. Some consultants are advising patients to turn up in accident and emergency in acute renal failure, forcing the hospital to take them in. Some units have cut down dialysis treatments from three times a week to twice, weakening their patients. Just one typical example: Dr Leslie Sellers, renal specialist at Hull Royal Infirmary, had an emergency management meeting last week which decided no new patients could be taken on. Renal failure cases will be "redirected" to already overstretched units in Sheffield or Leeds. "Health authorities don't realise that we are getting more and more patients every year, " he says.

But those 1,000 or more who die are those who never reach the specialist units, never referred by local doctors. Many are over 60, which these days hardly counts as old age. Once kidney failure sets in, they will last only about three weeks. Professor John Walls, president of the Renal Association, which has been lobbying ministers, says, "Renal disease can be nondescript, with flu-like symptoms, so people may never know they had it. There is a huge discrepancy in services, and those who don't live near a unit are not likely to be referred for dialysis."

David Poulter, chairman of the National Kidney Federation, says, "There is no waiting list for total renal failure. They are dead." He adds, "It is not a pleasant way to die. Unable to get rid of water from the body, your lungs fill up and you drown." The death certificate calls it pneumonia.

Professor Stewart Cameron, a member of the committee that drew up the unpublished report, stresses that they were conservative in assessing how many more people would benefit from dialysis. "It can be a great mistake to dialyse everyone. If someone has severe other complications, or if Altzheimer's sets in you can wish you had never started."

But dialysis is no treat, living forever on a strict diet with only a litre of fluid a day. It deeply disrupts normal life and not surprisingly, dialysis patients have a suicide rate 14 times higher than average. On the other hand, those who have had a kidney transplant suffer no greater suicide rate. More than a third of those on dialysis are waiting for a kidney but the waiting list grows year by year, currently at 5,285. Fewer road accidents and better treatment for brain injury means fewer donors. The hope is that kidneys from genetically engineered pigs may offer the solution, but if that does become safe and routine, it will still be a few years ahead.

The British Medical Association and British Transplant Society has called for a change in the law that could yield many more organs. If dying patients could be put on to ventilators to keep their organs usable, twice as many kidneys might be made available. The Royal Devon and Exeter Hospital started to ask families if they could ventilate likely donors as soon as they had stopped breathing naturally, and they doubled the number of donors as a result. But the Department of Health warned that doctors could be charged with criminal assault for giving a patient treatment not designed to be of value to him, so it was stopped. A change in that law would make huge inroads into the waiting list.

Saving another 1,000 people will be expensive. Patients are much cheaper dead, since dialysis costs pounds 20,000 a year per patient. But if this law on ventilating donors were reformed it could save a great deal of money, for a transplant costs pounds 15,000, plus only pounds 3,000 a year in drugs thereafter.

Some doctors are beginning to advocate an even more radical solution, though politicians are likely to be too squeamish to adopt it. There is no convincing ethical reason why living people should not be allowed to sell their kidneys on the open market, a move that would certainly end the waiting list altogether. But if no one dares grasp this uncomfortable idea, then ventilating the dead is a far better option.