Wednesday, 15 February 2012

What are you doing for World Kidney Day?

World Kidney Day is around the corner now. It is getting stronger and stronger each year. On the 8th March 2012, the national focus will be on kidneys- kidney transplantation in particular.

That is something the kidney community can do lots about to improve the experience of care and outcomes of end stage renal disease for patients and families. Yes, by promoting discussion with friends, colleagues, acquaintances and the public about organ donation, and making registration easier- having organ donor cards in surgeries, outpatient departments, and supermarket checkouts; speaking in schools, mosques and at community events; and making organ donation a natural and normal thing to do. If you have a large local Muslim population have you read “Organ Donation and Islam” produced by the Muslim Healthcare Students Network? If not, why not? It was recently highlighted at the All Party Parliamentary Kidney Group meeting on “Kidney Disease and Transplantation in Culturally Diverse Groups, including all ethnic minority groups. The manifesto from that call for action is to be launched on World Kidney Day.

More than that, the kidney community can change the paradigm from “Dialysis and transplantation” to transplantation first when it’s possible, and by making clinically unnecessary transplant listing delays a “Never Event” zero tolerance to delays in transplant work up, and transplant listing is a win win win for patients, staff and the public. It leads to better experience and outcomes, avoiding or reducing the need for dialysis is more rewarding, and less time consuming for staff and citizens who fund the NHS through their taxes. People with a transplant can more easily return to their productive lives and it costs less.

NHS Blood and Transplant launched the UK Strategy for Live Donor Transplant on the 23rd of January and, kidney care has been supporting live donor kidney transplant programmes through its timely listing project across the country over the last year. There was a big improvement in listing after the renal NSF was published but rates have stabilised over the last couple of years and its time for a renewed push everywhere. Remember that the 18-week pathway for live donation, from starting the tests to surgery is still active and now the right to timely transplant listing and surgery is enshrined in the NHS constitution.

The league tables show some compelling data. The UK is mid-table in the ranking of prevalence rates of functioning kidney grafts at 375 per million. This is up from 286 per million in 2004, when the National Service Framework for Kidney Services was published. Norway and the United States of America are above 550 pmp and looks set to remain at the top of the league for a while, with kidney transplant rates in 2009 of 60.5 and 57.7 per million of the population respectively. However, Canada is hot on their heels and was top of the 2009 transplanting nations, at 63.1 kidney transplants per million of the population that year- up from 32.1 in 2004! We are still lagging behind. Despite an increase in live donor transplant rates from 472 pmp to more than 1060 pmp from 2004 (well done all involved, particularly the donors) and, despite a ten-fold increase in the number of deceased cardiac donors in the past 10 years which has unfortunately been offset by a fall of 15% in deceased brain donors. 

The national figures tell one story and feeds into much needed national policy and initiatives, but these can sometimes feel a little remote from the cold face where patients are waiting, some of whom are waiting on dialysis despite a close relative or friend available and able to give a kidney. Translating national numbers into local stories and personal triumphs is something that every kidney unit in the land can make happen. I recently read the Royal Free Booklet- “Can I have a kidney transplant?” that provides some great basic local information for people with kidney failure considering transplantation- it’s a perfect example of what patients and clinicians can create and has had rave reviews. We are going to copy it in the North West. Why not set some goals on world kidney day- look at your local figures. What are your local live donor rates? If you are a transplanting kidney centre, are your pre-emptive transplant rates up at 50% or more like the league leaders or are you a patient or professional whose unit is closer to the 10 or 15% mark. Do not just look at the overall transplant centre figures, look at your local dialysis unit figures. You will see even greater unwarranted variation. However, do not just look at the figures- change them.

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