National standards for renal treatment, setting out the targets that renal units should attain, can be both a weapon and a shield for kidney patients, according to Stewart Cameron, emeritus professor of renal medicine at Guy's and St Thomas's.
Comparing your own results against the standards, you can ask why your haemoglobin is so low, said Professor Cameron. There might be a good reason, for example if you have sickle cell anaemia. But it could be a failure in treatment. Standards could also shield patients from poor treatment. If a unit's figures were below the national average, their purchasers were going to start asking questions.
Professor Cameron has been chairman of the Renal Associations standards committee and is about to hand over to Dr Alison McLeod. The group is working on the third edition of the standards. The second edition has been widely distributed round renal units and should be in full use. It is easy to disseminate documents around Britain, for once the pathetically small number of renal units and renal staff are on our side, said Professor Cameron.
He described two areas where standards had been assessed: haemoglobin and iron levels. The haemoglobin results had been very bad, and raised the question of whether there was rationing of EPO. More encouragingly, British units had performed rather well on iron results. One downside of guidelines was that they could be misused for rationing. Another drawback was that guidelines might inhibit innovation and destroy choice.
"Some of you might be on treatments that don't meet the guidelines but seem to you and your doctors to work," said Professor Cameron. "You need to fight very hard to defend these treatments."
At question time, Rodney Morris of Addenbrookes described how taking Calcichew for phosphates had fought against the EPO he was taking for raising his haemoglobin levels. "I'm glad you raised the question of phosphates," said Professor Cameron. "We all agreed on the level of phosphates in the standards. But with the current level of technology there is no way that any unit can meet this. Now that we are revising the third edition, what should we do? Do we slacken off, or keep the standards and wait for new technologies to come along, as they are doing? There is a danger in making the standards too tight, but also a danger of lacking stimulus if we make them too slack."