I visited Chris Rudge, Managing Director of UK Transplant at the beginning of August to meet his team and hear about the progress of the Donor Organ Task Force. Every time I visit UKT I am struck by the setting - the offices are in a business park. They work perfectly well there - and unlike a clinical unit there is parking! The setting does however underline that UKT is a quintessential knowledge organisation. It could be anywhere. It's 4 key functions - maintaining the recipient waiting list, allocating organs by the nationally agreed schemes, promoting donation and maintaining the Organ Donor Register (ODR) - all require coordination of information and translation of that information into knowledge. Knowledge about which is the best match, correct allocation of a liver to a high priority recipient, telling a story - so that the technical information we regard as second nature becomes knowledge and understanding by the general public.
That message is getting across. In the foyer there is a large flat screen - when I was there it had a loop describing the various activities of UKT. The counter showed that over 14 million people have placed themselves on the ODR. A remarkable success - over 25% of the adult population of the UK. It's a great pity that this success hasn't lifted us off the bottom of the European donor league table. The Donor Organ Task Force aims to correct that. It was set up to advise on what can be achieved now, under the current legislation and with our current knowledge and expertise. It has always seemed pretty obvious to me that we need to put some resource into understanding how families make their decision to donate or refuse. Even without the research evidence it seems inescapable that the skills and attitudes of those initially raising the possibility of donation, the physical surroundings - it's not something to be broached in the corridor - and the time and space families are given to consider donation are key elements. I am sure the Task Force recommendations will advise on these issues and the wider organisational arrangements that will promote donation. Unfortunately, in many places it's not yet on the radar - how many Trusts have an Executive with responsibilies to support the donor families and the front line staff managing these processes?
I know 3 people/families who have donated the organs of their son or daughter - I can see one of them now in my mind's eye. In 2 of those situations the family took the lead in the donor discussions when the inevitable became obvious - would the opportunity for those families to donate have been lost if they hadn't have done? In all 3 families the act of donation brought some lasting comfort if not meaning to their tragedy.
Liam Donaldson's article "the waiting game" has opened the door to further discussions about changes in the law on assumed consent. I welcome that. On the day Sir Liam was on Radio 4, over 22000 people joined the ODR. Of course many people say surgeons will never take organs against the family's wishes and feel that past Parliamentary discussions have missed the point. But a public debate can only be a good thing - unless of course we, our ITU colleagues, the public and our Trusts delay what we should be doing today whilst we await the outcome of that debate.
The duty room, the operations room at UKT, did have a feel of an air traffic control room - assuming the movies protray that accurately. Coffee, no cigarettes, lots of screens, messages on post-its, the whiteboard with an SOS paediatric heart wait-listed infant and urgent potential liver recipients with their MELD scores, the nerve centre of this knowledge organisation. Very dramatic stuff for a kidney doctor who these days spends a lot of time in meetings. The staff at UKT are some of the unsung heroes of the Health Service. The guys in the duty room pointed out to me that the donor families are of course the real heroes.
So all that's very good and uplifting. If you are reading this and work in a kidney unit - or if you are a patient or relative of someone who might benefit from a kidney transplant, take a moment to look at some of your stats. The UKT Annual Report and the Renal Registry Report will make interesting reading. The information here in table form and above graph (data from Dr Richard Fluck, Consultant Nephrologist at Derby City Hospital), shows the variation in pre-emptive and live donor rates between units. Where does your unit stand? The question isn't "could you do better?" but "how do you do better?"- why does it take up to, or beyond 12 months to list dialysis patients for transplantation?