It has been quite a journey. Five years ago there were no CLODs, no SNODs, no chairs of donation committees and a donation rate toward the bottom of the industrialised world. It’s not that efforts hadn’t been tried before, a BMA report in 2000, a Department of Health report in 2003, yet still in 2005 the UK had the lowest number of donors on record. Then we had the 2008 Organ Donor Taskforce report and for the first time, government backing for real action.
Money may not make the world go around but it certainly opens doors, doors into intensive care and the emergency departments, doors that had previously only been partly open.
What I believe has made the biggest difference in the UK was the genius, even if not fully realised at the time, of making donation a local concern. In the old world there were 18 coordinator teams, in the new world there are 190 local donation teams, all thinking about organ donation in their hospital. What makes a local donation team? You do - the organ donation triumvirate of CLOD, SNOD and Chair, supported by a well-represented and active donation committee.
I have presented the UK local donation structure a number of times in Canada, as they seek to emulate our progress. The Canadians get the CLOD (though they prefer the term donation physician), they get the SNOD (though they hate the name) but they don’t get the Chair. Big mistake I keep telling them. Chairs are the link into the hospital hierarchy, they are the link into community, they are the voice of reason, the voice of challenge and the voice of innovation; and they come for free!
Who can sit on a stool with only two legs? A chair (pun intended) needs more than two legs: CLOD, SNOD and Donation Committee Chair. Organ donation stands or falls at the local level, that’s what this last five years has proven.
The second biggest achievement of the last five years is one close to my own heart. Many may not know that I first met Paul Murphy (National Clinical Lead for Organ Donation) in a debate in Chesterfield in 2008. He was arguing for Donation after Circulatory Death, I was arguing against. Like many intensive care doctors at the time, I was concerned, outraged even, that this ‘new’ form of organ donation was being offered to our dying patients with no agreed criteria for diagnosing death after cardio-respiratory arrest, no legal support such that some believed it was illegal, no national professional guidance and the risk that conflicts of interest, both real and perceived, would undermine organ donation for everyone in society. Paul Murphy asked me to come on board, to trust him and he would see these issues resolved. I did. In 2008 the Code of Practice for Diagnosing and Confirming Death was published (it had been held up for a number of years in the Department of Health), legal guidance followed that year, the independent UK Donation Ethics Committee was established and published guidance on Donation after Circulatory Death and the General Medical Council stated that it was a duty of a doctor to explore organ donation at the end of life.
More than just publications that sit unread in bookshelves (or unclicked), was the convincing argument, that if a patient wanted to be a donor, that facilitating that wish is not an imposition, but a way of respecting the dignity of a dying patient and their family. As I have been known to say, ‘Organ donation is the greatest gift one person can give another in peacetime’.
Where to now? The Taskforce had 14 recommendations. The last four remain unmet: training, publicly recognising individual donors, public promotion and guidelines for coroners… but keep watching this space. Paul Murphy has been busily working (with others from NHSBT) on the new 2020 strategy that will succeed the Taskforce, and he has asked me to trust him again. As his deputy this time and it is with sadness I am preparing to pass the baton of Midlands CLOD, or ‘M’LOD’ as I hoped to be called (but never was) onto someone else.
I leave knowing the Midlands has lived up to and exceeded the ambition set by the Taskforce five years ago. We are respected, rightly so, by the other eleven donation teams in the UK. For our Midlands Donation Pathway, our promotion and education activities, our donation memorials and our strong and thriving regional collaborative. But most of all we have taken the theory of what it means to be a local donation team, what it means to have robust professional and societal support for our endeavour and we have turned it into action. Nineteen trusts (28 Hospitals), five transplant centres and a population of 7.2 million: we are big, we are bold and we are delivering; 87.5% increase over the last five years. Because we know it is not about us but our donor families, the true heroes, that are saving and transforming lives, though a simple three-letter word; yes.