The waiting game – some people wait longer than others

A few years ago, the then Chief Medical Officer Sir Liam Donaldson drew attention to the limbo that people could find themselves in waiting for a suitably matched transplant in a chapter of his annual report on the state of the nation’s health entitled “The Waiting Game”. It highlighted the shortage of available organs in the UK in comparison to other countries, raised the issue of presumed consent and attempted to describe the reality of waiting for an organ to become available. Since then the Organ Donor Taskforce has reported and its recommendations are coming into force. The number of people on the organ donor register has increased from 13 million to over 17 million; but the wait isn’t over for more than 7,190 on the kidney donor waiting list.

Of course there are many more of the other 18,000 on dialysis and others with advanced kidney disease not yet on dialysis who have opted for transplantation but haven’t yet been assessed and listed. When does the clock start? It depends on your perspective.

Delays in transplant listing are a major cause of inequity. Dr Rommel Ravanan (Consultant Nephrologist) and colleagues at the UK Renal Registry and NHS Blood and Transplant have recently reported variation between renal centres in access to kidney transplantation. They looked at all the patients under 65 years old starting renal replacement therapy between 1 January 2003 and 31 December 2005, a total of nearly 8,000 people, and followed them up for 2 years to see who was transplant listed. They also examined a proportion of patients on the waiting list who received a transplant within 2 years of listing by following up 4,061 people on the waiting list before 31 December 2006 until the end of 2008. They found that after adjustment for case mix, that is the differences between patients at different centres, there is significant variability between renal centres in transplant listing, time to inclusion on the list and likelihood of transplantation. After adjusting for all the factors they could, Rommel and his colleagues found that, depending on which renal unit you attend, your chance of kidney transplantation from a donor after cardiac death of a living kidney donor within 2 years of being registered for transplantation, might exceed 40% or be less than 10%.

Such a big variation can only be explained by differences in the way renal centres practice. The authors comment that individual centres’ practice patterns determine the effectiveness and efficiency of the patient’s pathway, beginning with a diagnosis of end stage renal disease and progressing to renal transplantation. The report got less additional media coverage than I was expecting but the results have been keenly awaited by the kidney community. Each kidney centre has been sent details of their own performance. Of course, such a report doesn’t tell the whole story. In the absence of comprehensive patient specific data the results should be interpreted with caution; but each team should now be examining their own practice patterns. I would hope that most are involving their Kidney Patient Associations in those discussions about cutting out delays in time to listing and improving access to transplantation.

Of course all care is local and looking at local kidney care network and transplant data as well as looking at the national “league tables” will generate the questions about practice and quality. In the North West an annual regional transplant activity report has been produced for many years – it helps drive quality and improvement in outcomes. Titus Augustine (Consultant Transplant Surgeon & Clinical Director) and Sue Martin (Consultant Clinical Scientist & Transplant Lab Director), Central Manchester NHS Foundation Trust have recently circulated their 2009/10 report. As usual it’s full of fascinating information. The definition they employ for time to listing is from the formal referral by the kidney care team to the patient being placed on the national transplant waiting list – how come that time varies from 78 to 117 days in the adult units? What do our paediatric colleagues do differently to be able to list the children with 38 days?