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.
Spain has the best donation rates in the world. The UK does not. Why?
1. Spain began its journey to the top with a 50% increase over 5 years - we in the UK are achieving likewise. Predicted 47% rise in donation over five years for March 31st 2013. Spain has a twenty year lead.
2. Even if all our identified potential Donation after Brain Death (DBD) cases were tested, and we had 100% family consent, we would still have 2/3 the donation rate as Spain.
- reflects different incidence of brain death (neurosurgery (decompressive craniotomies, coiling for subarachnoid haemorrhage), UK safest roads in Europe).
- end of life practices are different
ETHICUS, 2003 (Spain = Southern, UK = Northern)
Is this difference because of ICU capacity?
3. Consent (Family refusal in Spain 19%, UK 43%)
Rafael Matesanz, Spain’s guru, and pictured above says - NO, it is not presumed consent. They had presumed consent for a decade before they saw any rises. It is a whole hospital change that makes a difference.
So why do UK citizens living in Spain donate more often?
Are we in the UK, just less generous? I would hate to think so, especially when public surveys support donation so overwhelmingly.
Is it ethnic and cultural mix? I don’t know enough to comment on this.
But look at where potential donors fall off a donation pathway.
There is still work to be done in neurological testing, still work to be done in ensuring that, where donation is a possibility all families are approached, but the UK consent rate has remained stubbornly low.
4. It’s not all bad in the UK
- UK does have very good use of donated organs (little waste)
- UK does have a very good living donation rate
- the above two factors mean that transplantation in the UK is less behind Spain than the donation rates might suggest...
despite DCD being more common in the UK).
5. Hospital structure
Spanish transplant coordinators are full time intensive care doctors in a donation role, supported by full time nurses.
In the UK we have full time donation nurses supported by a doctor (Clinical lead for Organ Donation) 4 hours per week.
Spain has a long established education programme for their intensive care trainees. The UK has nothing (I’m working on it!).
6 differences, only one that favours the UK (our utilisation of organs).
However, I like point number 1 the best. We are on a 20 year journey.
47% increase over 5 years is what Spain achieved in its first 5 years.
So did WE!
“In January 2008 the Organ Donor Taskforce (ODTF) published its report setting out 14 recommendations which, if implemented in full, should enable the UK to increase the number of deceased organ donors by 50% from a baseline of 809 donors. All four national governments endorsed the recommendations, participated in the ODTF Programme Delivery Board and provided resources to enable the recommendations to be implemented. Nearly four years later the recommendations have largely been implemented. Deceased donor numbers are up by 34% and we recognise that this increase is predominantly made up of an increase in DCD donors and that donors in general are becoming older and heavier. There is still a significant gap between the need and availability of organs for transplant.”
So the 2013 Strategy discussion paper begins. A remarkable 5 years, but a long way to go.
Even the 50% will be a close thing. At week 20, 19th August, the UK is heading toward 44% only, and thus will fall short of the ‘magical 50% goal’. 50% was chosen as this is what Spain achieved when they first started to increase their donation numbers.
The 2013 strategy would like to set out to achieve another 50% over the coming 5 years. If successful this would put the UK into the upper tier of world donation figures.
Yet the majority of the UK donation success has been achieved though Donation after Circulatory diagnosed Death (DCD), 45% of all deceased donation, not Donation after neurologically (brain) diagnosed death (DBD), where organ quality for transplant outcome is generally superior. Has the rise of DCD been one of robbing Peter to pay Paul, as some transplant surgeons insist, or instead one of giving a potential to donate when previously there was none, as many in intensive care believe?
I’ll save that for another post, but it is probably worth reflecting on the Taskforce’s 14 recommendations.
Organ Donor Taskforce 2008,
14 Recommendations (and my report card)
A UK-wide Organ Donation Organisation should be established.
The establishment of the Organ Donation Organisation should be the responsibility of NHSBT.
Urgent attention is required to resolve outstanding legal, ethical and professional issues in order to ensure that all clinicians are supported and are able to work within a clear and unambiguous framework of good practice. Additionally, an independent UK-wide Donation Ethics Group should be established.
- done (though will never be finished, but substantial progress has been made, especially in Donation after Circulatory Death). I hold the work in this area as one of the key reasons for the UK progress.
All parts of the NHS must embrace organ donation as a usual, not an unusual event. Local policies, constructed around national guidelines, should be put in place. Discussions about donation should be part of all end-of-life care when appropriate. Each Trust should have an identified clinical donation champion and a Trust donation committee to help achieve this.
- done (the infrastructure is now in place, it just needs to be actioned each and every time). With Recommendation 3 and 9, this is a key reason for the UK progress. The local donation team (Chair, clinical lead and specialist nurse) is the powerhouse behind UK organ donation progress.
Minimum notification criteria for potential organ donors should be introduced on a UK-wide basis. These criteria should be reviewed after 12 months in the light of evidence of their effect, and the comparative impact of more detailed criteria should also be assessed.
- done with the NICE guidance.
Donation activity in all Trusts should be monitored. Rates of potential donor identification, referral, approach to the family and consent to donation should be reported. The Trust donation committee should report to the Trust Board through the clinical governance process and the medical director, and the reports should be part of the assessment of Trusts through the relevant healthcare regulator. Benchmark data from other Trusts should be made available for comparison.
- done, though decifering funnel plots takes some time.
BSD testing should be carried out in all patients where BSD is a likely diagnosis, even if organ donation is an unlikely outcome.
- good progress (though will always need ongoing work)
Financial disincentives to Trusts facilitating donation should be removed through the development and introduction of appropriate reimbursement.
The current network of DTCs should be expanded and strengthened through central employment by a UK-wide Organ Donation Organisation. Additional co-ordinators, embedded within critical care areas, should be employed to ensure a comprehensive, highly skilled, specialised and robust service. There should be a close and defined collaboration between DTCs, clinical staff and Trust donation champions. Electronic on-line donor registration and organ offering systems should be developed.
- done and embedding specialist nurses into hospitals a key achievement - keeping them there is the next pressure.
A UK-wide network of dedicated organ retrieval teams should be established to ensure timely, high-quality organ removal from all heartbeating and nonheartbeating donors. The Organ Donation Organisation should be responsible for commissioning the retrieval teams and for audit and performance management.
- This roles into transplantation. Some infrastructure changes have been made and are welcome, but the job is not done, especially when compared to the progress in other areas.
All clinical staff likely to be involved in the treatment of potential organ donors should receive mandatory training in the principles of donation. There should also be regular update training.
- barely started
Appropriate ways should be identified of personally and publicly recognising individual organ donors, where desired. These approaches may include national memorials, local initiatives and personal follow-up to donor families.
- not done
There is an urgent requirement to identify and implement the most effective methods through which organ donation and the ‘gift of life’ can be promoted to the general public, and specifically to the BME population. Research should be commissioned through Department of Health research and development funding.
- not done
The Department of Health and the Ministry of Justice should develop formal guidelines for coroners concerning organ donation.
- some progress only
So all up, considerable progress, but much more yet to do, and a distinct tailing off of success, as the recommendations go from 1 to 14.