bulletinThe newsletter for everyone involved in organ transplantation and donationIssue 62 Spring 2007

In this issue: Practical challenges of facial transplantation. Organ donation inSpain. National matching scheme for paired living kidney donation. Launch ofblack and Asian campaign. Using a simulator in end of life training. ACREresearch. Appointment with Laura Buist.

UK Transplant is part of NHS Blood and Transplant

NEWS

Bulletin Spring 2007 3

CHIEFLY

2 Bulletin Spring 2007

In this edition of the Bulletin Ihope you will allow me to indulgemyself. I'm not going to writeabout the latest political initiatives,or clinical breakthrough, and I'mnot going to mention money – I am going to reminisce a little,contemplate the future, and lookat transplantation as it is now in asomewhat different way.

Transplantation is amazing; it truly is – we all knowthat, and that is why we are all involved. But toanyone who came into the discipline in the last 20years – probably since the introduction ofcyclosporine in 1983 – it is perhaps difficult to realisehow tenuous were its beginnings.

I still believe that I'm a (relatively) young man, but I'mold enough to remember Richard Batchelor returningfrom a meeting somewhere in the world and tellingme that one of the tissue-typing sera we were using –named after the serum donor and the year (Sells '66was a particularly fine serum) – was henceforth to beknown as HLA-A1.

I also well remember asking my surgical mentor at thetime whether a career in transplant surgery was aviable option – did this very experimental treatment,with at least a 50%, one year mortality, have a future?Would it ever work? His answer was only justoptimistic enough to encourage me. Well, it hasworked – probably far better than expected – andevery year thousands of patients now benefit. UKT iscurrently collecting follow up-data on over 30,000patients with a functioning transplant.

So what does the future hold? Undoubtedlytransplantation will continue to get better.“Conventional” immunosuppression will improve, andthere's always the tantalising prospect of tolerancethat's been just around the corner for so long. I'm optimistic that one day that corner will be turned.But what about real alternatives to transplantation aswe currently know it?

Xenotransplantation seemed to some of the optimiststo be close to clinical practice ten years ago, or more.

Indeed, had the same degree of progress been made40 years ago when innovative or experimental clinicalpractice was so much less regulated, I suspect thetransplantation of pig organs would have beenintroduced – and who knows what the outcomes mayhave been. I'm firmly in the optimistic camp again – I think pig organs could at some stage be the solution– but not, I suspect, in my working life.

Likewise stem cells, cloning, growing organs – all arehailed by the press as possible solutions to thetransplant shortage and all may, eventually, play apart. But not yet. If any of these alternatives prove tobe possible and successful in the future – or if diseaseprevention ever makes a significant impact –transplantation as we currently practice it may nolonger be necessary.

Will our successors look back at us and wonder howwe sustained such an excellent service within suchextreme constraints – removing organs from deadbodies within minutes of death, rushing them aroundthe country for transplantation within three or fourhours, even removing organs from healthy livingdonors. I suspect they will – but not for a very longtime.

In the meanwhile the very success of transplantationat present leads to the relentless, ever-growingdemand for organs and the relentless pressure on usall to do everything possible to increase organdonation.

Hundreds, if not thousands, of patients die each yearfor lack of a transplant. Whilst we wrestle with thisproblem, there is no doubt that we have beenfortunate to work in transplantation at this stage ofits development. Wouldn't it be fascinating to be ableto look back in 50 or 100 years' time and see howwhat we do now looks from that perspective?

Chris RudgeManaging & Transplant Director – UK Transplant

Organ Donor Line 0845 60 60 400 www.uktransplant.org.uk

bulletinIS PUBLISHED QUARTERLY ISSN 1472-0507

Copy date for Summer 2007 edition Tuesday 1 MayContributions should be sent to Clare Hanson-Kahn

UK Transplant, Fox Den Road, Stoke Gifford, BRISTOL BS34 8RRTel: 0117 975 7562

Fax: 0117 975 7515 Email: bulletin@uktransplant.nhs.ukDesigned by Bob Design and Marketing www.meetbob.co.uk

Front cover picture:Curtis Walker helps launch the new black

campaign.

Copyright and Liability2007 UK Transplant. All rights reserved. No part of this publication may be reproduced or

transmitted in any form or by any means, including photocopying and records, without thewritten permission of the publishers or, where appropriate, the author of the article. Such writtenpermission must also be obtained before any part of this publication is stored in a retrieval system

of any nature.

Opinions expressed by a contributor to this bulletin are not necessarily those of the editor or ofUK Transplant and neither the editor nor UK Transplant accepts any responsibility or liability in

respect thereof or any other information contained in this publication.

Latest black and Asian campaigngets celebrity treatmentA new awareness campaignlaunched in March will appeal topeople's sense of community spirit toencourage them to sign up as organdonors. The Can we count on you?campaign will promote organdonation as a way for black andsouth Asian people to help eachother and put something back intothe community.

This latest campaign has celebrityendorsement from comedian CurtisWalker who has been an enthusiasticand committed advocate for UKTransplant's campaigning activity since2003. Curtis is joined by stand-up comicand radio and TV favourite GinaYashere, established comedienne andGoodness Gracious Me TV star NinaWadia, Dalziel & Pascoe actor Asif Khanand fellow actor, singer and playwrightKwame Kwei-Armah.

Together Curtis and his friends appearin two new information leaflets andposters produced by UKT to encourageblack and south Asian people to thinkpositively about organ donation andtransplantation.

Not only do these celebrities ask bluntly'Can we count on you?' but each hasprovided a personal message urgingpeople to help their community, make adifference and join the NHS OrganDonor Register. The literature alsoincludes contributions from severaltransplant patients, recipients and adonor family who have also kindlyagreed to back the campaign.

“Informing black and south Asianpeople about how organ donation andtransplantation affects them and theircommunity has been a key part ofUKT's campaign work for several years;”explains Tamsin May, UKT's Marketingand Campaigns Manager.

“With carefully targeted marketingactivities we hope to reach greater

numbers of people and triggerdiscussion at grass roots level about theimportance of organ donation andtransplantation.”

The leaflets are also downloadable fromour website in Gujarati, Punjabi, Hindi,Urdu and Bengali.

Throughout March and April the newleaflets will be distributed to faithorganisations, community centres,leisure centres and businesses in majorcities across the country with high blackand South Asian populations. An experienced team of multilingual street 'consultants' will deliver the newmaterials by hand and engage with thepublic about organ donation.

The ethnic broadcast media, whichincludes radio stations like Sunrise Radioand Spectrum Radio, Zee and OriginalBlack Entertainment TV and onlinenews websites including Asian Timesand The Voice, will be the primary focusfor media relations activity to informpeople about the campaign and

encourage them to look out for thenew leaflets.

Regional newspapers will also be thetarget for an extensive PR campaign asthese are increasingly relied on by theblack and Asian population to report onlocal community issues and stories thatare relevant to them.

UKT also plans to produce a shortaudio podcast about organ donationfeaturing Curtis Walker and ProfessorGurch Randhawa which visitors to theUKT website will be able to download.

Currently over 1,170 Asianpeople and 620 black people arewaiting for a transplant in theUK. Estimates indicate that if the current trend continues thatwithin a few years, in parts ofthe country with large ethniccommunities, half the patientson kidney dialysis may be blackor Asian.

Continued on page 4

New black and Asian posters which can be ordered from the Organ DonorLine.

A who's who line-up of chortlesuperstars did their bit to raiseawareness of the NHS OrganDonor Register and to raise fundsfor the Cystic Fibrosis Trust for usein improving organ transplantservices in the UK.

Gagsters including Bill Bailey, whohosted the Laughter for Life comedynight, Mock the Week's Dara O'Briainand C4 funnyman Rob Rouse leftaudiences in stitches at the Mermaid

Conference and Events Centre inLondon in March.

The event was organised by the LiveLife Then Give Life Campaign. Its co-founder, Emma Harris said: “Weorganised the event to raiseawareness of the chronic lack oforgan donors in the UK, and thedesperate wait faced by those on thetransplant list.

“We'd like to say a huge thank you toall the comedians who so generouslygave their time to perform on the

night and made it such a greatsuccess”

Visit www.laughterforlife.co.uk andwww.livelifethengivelife.co.uk formore information about thecampaign.

NEWS

Bulletin Spring 2007 5

NEWS

4 Bulletin Spring 2007

A new guide has been produced to help donor transplant co-ordinatorscommunicate better with families from minority ethnic backgrounds.

The guide has been designed for donor transplant co-ordinators and otherhealthcare professionals to help when interacting with patients and their familiesfrom different cultural backgrounds.

The guide is the result of thorough research by a working group of donor transplantco-ordinators, which has included interviews with a range of cultural experts.

Steve Bell, UKT Regional Manager and chair of the working group, explained: “As agroup of healthcare professionals we felt we knew little about the backgroundcultures of some minority ethnic groups. We hope that this guide will give us abetter understanding of how we should approach and talk to families so that wecan establish more meaningful communication for them.”

The guide, An overview of cultural groups within the United Kingdom, includesinformation on cultural taboos, religion, appropriate language for greeting people,dress, attitudes towards death, and how families are structured.

The guide covers different ethnic groups including people from South Asia, peoplefrom the Caribbean, and people from Eastern Europe as well as travellers andhumanists.

The guide is detailed. For example, in making introductions when talking to a Polishperson shaking hands on meeting and leaving is respectful, but other physicalcontact, such as a comforting touch to the shoulder, could be seen as inappropriate.It's appropriate to greet the head of a Chinese family by presenting your name cardand offering it with both hands – offering with one hand is considered rude.

The guide is being distributed to all donor transplant co-ordinators along with twoother pieces of supporting literature. These are Faces of Britain, a cultural guideproduced by Avon and Somerset Constabulary, and Organ donation and religiousperspectives, a leaflet produced by UK Transplant.

Members of the working group are: Steve Bell, Helen Challand, Alison Glover, ScottLister, Susan Longman and William Murray.

Cultural guide fordonor co-ordinators

Laughter for Life

NHSBT education resource is beingwell received in pilot schoolsThis Spring the NHSBT education resource is beingpiloted in eight secondary schools. The early results ofthe pilot show that the resource is being well receivedand that the content is engaging and relevant to bothpupils and teachers.

NHSBT's three-year education programme is aimed at studentsaged 14-16, and supports the delivery of major PSHE/PSD andCitizenship objectives. It also supports ICT and Science.

The programme materials will consist of print resources forteachers to use in the classroom, and an accompanyingwebsite providing extra resources such as case studies,interactive games and videos.

The teaching resource has been developed with input from aconsultation group, which includes donor transplant co-ordinators and donor family representation. The resourceis being piloted with pupils and teachers in eight schools inCardiff, Aberystwyth, Glasgow, Belfast, Plymouth, Warwick,Lincoln and London. It has also been independently reviewedby a group of teachers.

The evaluation by the teacher reviewers found the resourceto be “very important in raising awareness about the issuessurrounding blood and organ donation”. The case studiesused in the student classroom cards were thought to reallyadd to the resource as they "help to bring home the value oftransfusions and transplantation.” The reviewers also foundthe teacher notes extremely useful as they "provide a clearrationale throughout and structure the work accordingly".

Comments from year 10 pupils from the pilot schoolsincluded: “I wasn't interested at first because I didn't know alot about it” and “It's changed my mind about donation”.

The next stage of the programme is to modify the printmaterials, and to develop the website. The website willinclude two new interactives: the Interactive body and Donor dash.

The Interactive body allows you to discover informationabout organs, blood and tissue by rolling the mouse over the body. Donor dash is a game where the player movesaround a street scene to catch people and convince them togive blood (level one) and to sign onto the NHS OrganDonor Register (level two). However each person you catchwill give a reason why they don't want to donate and theplayer must choose a response to convince them.

The new resources will be launched into secondary schools inSeptember 2007.

Gurch who has been appointed to the Department of Health's Organ DonationTaskforce and is based at the Universityof Bedfordshire, has also agreed to bethe campaign's main mediaspokesperson alongside Curtis.

Says Tamsin; “Leaflet distribution is atried and tested approach for us butusing specially trained street teams willhelp us better engage with thecommunities we are targeting.The audio podcast is a completely newinitiative for UKT which will help us getour message further and deeper andshould appeal to younger people whoprefer to get their information online.”

“Our key messages are still aboutraising awareness of the need for moredonors, encouraging people to talkabout donation and encouraging themto join the ODR - by highlighting howorgan donation can help theircommunity, we hope to encouragemore people to come forward as organdonors.”

For more information about thecampaign go to:www.uktransplant.org.uk/blackcampaignwww.uktransplant.org.uk/southasiancampaignTo order the new leaflets and posterscontact the Organ Donor Line 0845 60 60 400.

ULTRA cut-off dateThe cut-off date for ULTRA approved transplants was 28 February 2007. The provisions relating to ULTRA are no longer in force after this date, and alltransplants will be required by law to go through the HTA approval process.

Donating a body to medical scienceThe HTA assumed some of the regulatory functions of Her Majesty's Inspectorof Anatomy on 1 September 2006. The HTA's role in this area includesmanaging a system for the donation of bodies for medical education, trainingand research. Anatomy schools should submit forms for all bodies acceptedand received, and for all bodies disposed of, through the HTA's onlinedatabase. The HTA website provides information to people enquiring aboutdonating bodies to medical science. See: www.hta.gov.uk

The new resource is being launched into schools inSeptember.

NEWS

Bulletin Spring 2007 7

NEWS

6 Bulletin Spring 2007

Fourteen million kind-hearted people have signed up to pledge thegift of life by joining the NHS OrganDonor Register (ODR), new figuresreveal.

The milestone includes more than onemillion new signatures collected over thelast 12 months, from people who wantto help save someone's life by givingpermission for their organs to bedonated after their death for transplant.Last year nearly 2,800 lives were savedor dramatically improved thanks to thegenerosity and courage of donors andtheir families.

In the last 12 months a total of1,040,000 new names have been addedto the register, pushing the percentageof the UK population on the ODR to

23%. Joining via the DVLA remains themost popular way for people to pledgethe gift of life. More than six millionpeople have signed up by filling in thetick-box section when applying for theirdriving licence, or when receiving theirtax disc reminders.

Maxine Walter, Acting Director ofCommunications said: “We would like tothank all those who, by putting theirnames on the register, are offeringothers the most precious gift of all – the gift of life.

“The fact 14 million people have joinedthe register is a significant landmark, but sadly people are still dying every daywhile waiting for a suitable organ to befound because not enough are beingdonated.

Fourteen million people signedup to pledge the gift of life

Nearly 300,000 households inCardiff, Newport and Swansea will receive a leaflet during April as part of a major campaign inWales to promote organ donation and encourage people to join the NHS Organ DonorRegister (ODR).

The specially designed bilingual leafletwill be delivered by Royal Mail andreach an estimated two thirds of theWelsh population. This is the first timethat UK Transplant have used a largescale door drop to promote organdonation.

Since 90% of the population say thatthey support organ donation but only23% have joined the register, UKTransplant is hopeful that people willtake the opportunity to register oncethe leaflet drops through their door.

Angie Burton, UK Transplant'sMarketing and Campaigns Managersays, “Market research tells us thatpeople expect to be asked to join andalso that it should be made easier tojoin. So by delivering a convenient wayof registering directly into homes wehope that a significant number ofpeople will act on their good intentionsand take the opporunity to sign up andencourage others in their household todo the same.”

UK Transplant has secured £40,000funding from the Welsh Assembly tosupport the campaign which will alsoinclude radio and press advertising. Dr Brian Gibbons, Welsh AssemblyMinister for Health and Social Serviceswill launch the campaign.

To give the three-week campaign extraimpact Asda has agreed to display

posters in their stores and Newport,Swansea and Cardiff councils arefeaturing information in theircommunity newsletters and intranets.

Welsh campaign delivers organ donationleaflets to households for the first time

UK Transplant has updated itspublicity guide for campaigners.It includes a new section onelectronic marketing andincludes the latest listing ofliterature and promotional itemsavailable from the Organ DonorLine. Organ Donation. Make aDifference can be ordered fromthe Organ Donor Line: 0845 60 60 400.

Duty in AfghanistanDonor transplant co-ordinator Louise Davey is settling back into life at KingsCollege Hospital in London after a three-month tour of duty with the RAF's4626 Aeromedical Evacuation Squadron in Afghanistan.

Louise, a sergeant with the force's specialist reserves unit at RAF Lyneham, spentthree months in the city of Kandahar leading a team of nine flight nurses. Thesquadron provides vital daily support to the armed forces and relies uponvolunteers such as Louise, who joined in 1998.

“I decided to sign up with the reserves after seeing a recruitment advert in theNursing Times,” she said.

“Our role in Afghanistan was to provide medical treatment to injured coalitionservice personnel and the Afghanistan population. We also prepared UK andEuropean service personnel for aeromedical evacuation and escorted them back tothe UK for hand over to civilian hospitals.

“This sometimes involved being on the frontline under attack. In my time inAfghanistan we must have come under mortar attack some 20 or 30 times.

“There's often not that much time to get the person onto the aircraft, so we'doften have to do so while the engine was still running. Conditions out there werevery hot too, but you are there to do a job and it is a very rewarding experience,”added Louise, who has also served in Cyprus and Iraq.

Despite having to cope with falling mortars and artillery fire, Louise has still beendoing her bit to spread the message of the NHS Organ Donor Register, even inAfghanistan.

“A lot of people were interested in my role as a donor transplant co-ordinator, andmany of the people I spoke to were keen to raise awareness of the need for moredonors. Every little helps.”

Louise Davey, transplant co-ordinator, on tour in Afghanistan (on the left inback row.

Delivering intoGP surgeriesThis spring, UK Transplant hassent out organ donor leaflets toalmost 10,000 GP surgeriesacross the UK in a bid to raiseawareness of the NHS OrganDonor Register.

Last year, over a quarter of amillion people joined the registervia their doctor. Most of these werenew patients who signed up whenthey filled in their family doctorservices registration form, but atleast 10,000 were from existingpatients who picked up leaflets intheir surgery.

UK Transplant's Marketing andCampaigns Manager, Tamsin May,said: "We carry out this mailingeach year and the response is verypositive.

"Patients expect to be able to findorgan donor forms at their local GPsurgery and by sending thematerials out proactively we helpmake sure that practices alwayshave some in stock."

Each practice received a supply ofsign-up leaflets, a leaflet dispenserand posters for use in waitingrooms. Surgeries are encouraged toorder further stocks, free of charge,from the Organ Donor Line.

A two year study is underway whichaims to improve our understandingof the relationship between organdonation and ethnicity to improverates of donation overall but inparticular from some ethnicminorities. The study is beingconducted by the School ofMedicine at Imperial College Londonand is funded by Kidney ResearchUK.

Dr Glenn Smith, who is leading theresearch, gives more detail.

Our study is unusual in that it is usinglife stories or oral histories to explorehow some people from a whiteBritish/Irish, Indo-Asian and African-Caribbean ethnic background havedeveloped their positive or semi-positiveview of organ donation.

Essentially, we want to understand howindividual and social experiences over aperson's life enables them to integratethe idea of organ donation into theirlives and in particular their cultural andreligious beliefs. With this valuable andunique information we can hopefullyimprove donation rates in a sensitiveand more sophisticated way.

Currently we are well into the processof interviewing a diverse sample ofparticipants. We have used a variety ofways to recruit participants includingmainstream and ethnic minority radioand press, approaching people directlyin areas with big minority ethniccommunities, posting details oninternet discussion forums, contactingsupport groups and approachingtemples, mosques and churches.

Initial field results are promising andindicate that being able to integrateorgan donation and transplantationsuccessfully alongside people's culturaland religious beliefs is aided by severalfactors.

These include a community-spiritedfamily background, being exposed todifferent cultures and beliefs, bearingwitness to the suffering of those in

need of an organ and being madeaware of the idea of organ donationand transplantation from an early ageor at a key moment in life.

Interestingly, some of these oralhistories are also showing us thatpeople's views of organ donation canchange over time.

For example, we interviewed a womanfrom an African ethnic background. Shewas born in the UK but had moved toAfrica when she was a child andreturned to the UK as a teenager.

On her return to the UK she visited afriend in hospital and after noticing adisplay of donor cards and thinking itwas a good idea, went ahead andsigned one.

However, over subsequent years herpositive view of organ donationchanged after experiencing racism inher everyday life and by listening to herAmerican cousins' stories of theexperiences of organ donation and thehealthcare system of some AfricanAmericans. After this, she felt she couldno longer trust our healthcare systemand threw her card away.

What is important about her story as apotential organ donor is that not onlydid her views change over time, but hernegative views developed because ofexperienced and perceived racism andnot because of cultural or religiousbeliefs as is often thought. Crucially, atno time was her changing view oforgan donation challenged by anyorgan donation advertising orcampaign material.

Our study also seems to be showingthat although some people may bepositive about organ donation, themotivation to take the final step ofregistering or signing a card seems toelude many of them. To understand thebehaviour of these 'floating donors' aswe call them, our study is makingconnections with other researchersworking at the forefront of ideas onmotivation and health behaviour.

When the study is finished we will havea much better understanding of therelationship between ethnicity, organdonation and behaviour, and what isand is not likely to be possible toincrease the numbers of people willingto sign a donor card or the NHS OrganDonor Register.

We are still interviewing participantsand so if you would like to take partplease do not hesitate to contact me:glenn.smith@imperial.ac.uk Tel: 07885 194 917. The deadline forrecruitment to the study is June 2007.

FEATURES

Bulletin Spring 2007 9

NEWS

8 Bulletin Spring 2007

Using a simulator in end of life training

Arpan Guha, Director of Cheshire &Merseyside Simulation Centre hasbeen instrumental in developingend of life training for multi-disciplinary teams. He is alsoan ICU consultant and member ofUK Transplant's Donation AdvisoryGroup. Here, he describes the pilotcourse run at the simulation centre.

End of life issues in the ICUs are oftendifficult to deal with. Emotions, ethics,morals and dilemmas interweave withclinical decision-making. The bestinterest of the patient is, of course,paramount, but no less important is thefact that family members and staffneed to be cared for too.

Training in this area is often less thanoptimum, and less experienced staffmembers (both medical and nursing)may find this exacting. Breaking badnews and communicating well withfamily members at this crucial junctureof a patient's journey seems to becarried out well by some healthcareprofessionals, but then not by others.The job can be made more demandingif the team is to broach the subject oforgan donation to the family.

It is usually not possible to 'train' duringthese periods, due to it being a time ofsensitivity. Therefore, much of thelearning occurs either in a piecemealfashion on the job, or in classroomsbased on theory and quite removedfrom the real world of the critical careenvironment.

This course was developed to addresssome of these issues. By providing

learning in a comfortable, non-threatening environment, the hopewas that complex elements could bemore freely explored.

The course was put together as acollaborative effort involving theCheshire & Merseyside SimulationCentre, Steve Bell, Regional Managerfrom UK Transplant, transplant co-ordinator input from Helen Machinbased in Liverpool and ICU consultantinput from Paul Murphy based in Leeds.The Cheshire & Merseyside SimulationCentre is a state of the art NHSeducational facility in Liverpool. Withinit, a comprehensive ICU environmentwas created with real monitoring and avery realistic patient manikin, with fullphysiological features, that is responsiveto interventions.

The one-day course was run as a pilot inDecember 2006. The course followed apatient's journey from admission todemise. A variety of educationalapproaches were used, including arealistic clinical environment facilitatingexperiential learning, lectures, facilitateddebriefs and discussions and dynamicinteractions with actors.

An ICU team from the Leeds TeachingHospitals NHS Trust, consisting ofdoctors, nurses and transplant co-ordinators participated ascandidates. The simulation centre wasset up as an ICU bed space, with ayoung 'patient' who had sustained ahead injury in a road traffic accident.The ICU team was orientated to theenvironment, and then asked tomanage the patient as they would inreal life.

Due to the realism of the equipmentand environment, and the fact that themanikin has physiological features thatenable it to react realistically tointerventions, the day became quitedynamic. It was possible for the team to follow the patient through stages oftreatment, deterioration and finally, the demise of the patient.

At every stage, the course dealtexplicitly with the subjects ofcommunication and breaking badnews. The roles of the parents of thepatient were played by experiencedactors. The team had to explain, andcarry out, brain stem tests, and broach the sensitive subject of organdonation.

Each scenario was followed with adebrief. In addition, short lectures dealt with good practice oncommunication and breaking badnews, brain stem tests, early referraland a planned approach for organdonation, and the impact of the Human Tissue Act.

Evaluation The course was evaluated with pre andpost course questionnaires and overallwas very well received.

60% of the participants had received noprevious specific formal training as partof their training on end of life issues.The ones who had, had received this aspart of UK Transplant trainingprogrammes. However, the evaluationshowed that after this training, allparticipants felt that their specifictraining needs on this subject had beenmet.

Similarly, 50% of participants hadpreviously had specific training inbreaking bad news. After the course,this increased to 80% who felt that theirtraining needs in this area had been met.

Finally, all participants felt that thepresent course based on simulation wasmore useful than lectures, workshopsor tutorials.

The initial pilot course has shown thathigh-fidelity simulation can be usedsuccessfully to implement some of thecore training in this important area. It is dynamic, realistic and relativelyinexpensive. This use of simulationcould provide core training for multi-disciplinary teams in the future.

Organ donation and ethnicity study

A Downing Street petition hasbeen started by Tim Statham ofthe National Kidney Federationto persuade the Prime Ministerto provide extra dialysis capacityso that all dialysis patients maytake a break away from theirhome unit.

The petition states: “Dialysis patients dialyse three daysa week for the rest of their life untilthey die. These patients cannotundertake work that takes themaway from their dialysis unit, have aholiday, attend family celebrations(weddings, baptisms etc) or visitfriends or relatives. They call on thePrime Minister to provide sufficientspare capacity in dialysis unitsaround the country to enablepatients to move between units.This would dramatically improvewhat is currently a poor andrestricted quality of life. After all thePrime Minister puts high value onhis holiday - he should not denypatients the same basic humanright.”

The deadline to sign up is February2008. To sign the petition go to:http://petitions.pm.gov.uk/Dialysis/

Extra dialysispetition started

FEATURES

Bulletin Spring 2007 1110 Bulletin Spring 2007

The practical challenges of facial transplantationMedia interest in facial transplantation means thatthere will be very few readers of Bulletin for whom theconcept of facial transplantation is a new idea. Dr Alex Clarke, Consultant Clinical Psychologist, and MrPeter Butler, Consultant Plastic Surgeon, are membersof the Royal Free Hospital face transplant team. Here,they describe the practical challenges that lie ahead.

This article is not about the technical challenge or ethics ofthe procedure, which have been widely reported, but on thepractical challenges we face as we move ahead. However it isalways worth stressing, that this is a new development infacial reconstruction, which is aimed at people with severefacial injury or scarring.

The successful partial transplants in France have been veryencouraging. Not only are they invaluable in providing dataabout the immediate post transplant course including themanagement of acute rejection, but the patient experience isvery positive and the goals of surgery – resumption of agood quality of life – are being achieved. Clearly theseprocedures also continue to provide information about long-term outcomes.

The procedure we are planning in the UK is different in thatit will not use composite tissue in a partial reconstruction, butwill resurface a pan facial burn injury using a full facial skinenvelope.

Following our successful application for ethics approval fromthe North West London ethics committee based at the RoyalFree hospital, we are starting the process of assessment andselection of appropriate patients. The Royal Free Hospital

Face Transplant Team meets all of the 15 principles identified by the Royal College of Surgeons working party report, andour research over many years means that we are wellprepared to support both the recipient and the donor familythrough this process.

In preparing for this major step forward in facial reconstruction,we have kept the potential for impact on transplantationgenerally very much in mind. Engaging with transplantprofessionals, particular donor co-ordinators, has been vital.

We need to know as much as we can about how organ andtissue donation is managed, and we need this community, asexperts, to help us identify how this new procedure fits intoexisting structures, and any special factors which we need totake into account. We have been tremendously encouragedby the enthusiasm and support of colleagues in helping us toachieve this.

In a series of lectures and consultations with transplantprofessionals over two years, we repeated the same survey ofattitudes toward the procedure as we had done withmembers of the general public, including those attending thesummer science exhibition in 2004. This informationpredates the surgery for Isabelle Dinoire, but we were able todetermine early on that within the general public there wassupport for facial transplantation in principle, in other wordsif there was a strong clinical necessity.

There was also a group of people who were happy to donatefacial tissue, and clearly, it was very important to establishthis at the outset. As in many other studies in transplantationresearch, we found more people willing to receive than todonate, and we also found an increasing reluctance todonate any tissue or organ the newer the technique.

Thus organs such as kidney and heart were potentiallydonated with a higher frequency than hand or face. Thispattern is something that we are exploring using scalingtechniques, as we can demonstrate a consistency in theintention to donate all organs and tissues that will be veryhelpful in organising the discussion around facial tissuedonation in particular.

A substantial majority of those whom we sampled werewilling to donate everything, and the biggest barrier todonation for those who were more reluctant, was concernabout identity transfer. Informed by images such as thosefrom the film 'Face Off', people anticipated bumping into afuture recipient with the face of a family member.

Our computer-generated simulations are a far betterapproximation of how a face might change with a soft tissueenvelope draped over an existing facial architecture. Whenwe made these images available they filled a very useful 'gap'before the pictures of Isabelle Dinoire did so much more inreassuring people that facial transplantation had a place insurgical reconstruction rather than simply in science fiction.

Working with the transplant co-ordinators demonstratedsimilar results with a substantial majority in favour of facialtransplantation, particularly if they knew someone who had afacial disfigurement. Their main areas of concern were theneeds of the donor family, support for the transplant teamand the development of clear management pathways.

For example, we have developed a latex mask which will beused to cover the facial defect from the point of retrieval,which we hope will reduce any negative impact for othertransplant teams in theatre. We are also developinginformation packs which will allow transplant co-ordinators toprovide more information, if donor families request it, aboutthe kind of circumstances in which facial transplantationmight be offered.

We are ensuring that anyone involved in the process hasaccess to a central point of information within the team sothat newspapers do not become their primary source forfollowing the progress of the recipient. Above all, we aredeveloping very clear pathways so that the process is clearand those involved both understand their role and feelsupported in providing it.

For the recipient, we have developed information andconsent procedures which carefully monitor whatinformation is provided, by whom and how the patientunderstands it. We are particularly concerned about the wayin which they have managed their condition in the past, howeasy they find it to work in partnership with the healthcareteams and any factors which we feel can be modified beforesurgery and which will improve their engagement in self carebehaviours post-operatively.

There are stepped procedures, each with their own consentprocess, which allow the patient to withdraw at any stagealong the pathway. In addition there are alternative forms oftreatment which we can offer people for whom the potentialbenefits of facial transplantation are currently outweighed bythe costs.

This is just a short overview of 'where we are now'. Is the UKgeneral public ready for facial transplantation? Our view isthat they are.

The feedback to media sites following the French procedurewas overwhelmingly positive. Perhaps most telling however isthe experience of donor co-ordinators in France who havereported donor families offering facial tissue spontaneously.

Far from impacting negatively on transplantation, it may beand we certainly hope that, the responsible progress towardfacial transplantation has highlighted the wider need fororgan donation – and that this will impact positively on thetransplant programme in the UK.

FEATURES

Organ donation in SpainRafael Matesanz, Director of the Spanish NationalOrganisation for Transplants (ONT), and a member ofthe Department of Health task force on organ donation,describes the Spanish model.

The shortage of deceased organ donors is a universalproblem. It imposes a severe limit on the number of patientswho can benefit from transplantation at the same time as anever-increasing demand for solid organs all over the world.

There is evidence that the shortage of organ donors is notprimarily the result of a lack of suitable donors, but rather theresult of the failure to identify them, obtain consent andprocure the organs. As a result, strategies in many countrieshave resulted in only mild or transient increases in organdonation or even no improvement at all.

The Spanish National Transplant Organisation (ONT) wascreated in 1989 and, with it, the establishment of a national

network of specifically trained, part-time, dedicated andstrongly motivated hospital physicians in charge of the wholeprocess of organ donation. Since then Spain has gone from550 to 1,546 solid organ donors in absolute figures, and 14to 35.1 organ donors per million people in 2005, by far thehighest donor rate ever reached by a whole country. This isthe only example in the world of a large country (44.1 millioninhabitants) with a continuous increase in deceased organdonation sustained over a fifteen-year period.

This success is accounted for by a proactive donor detectionprogramme performed by well-trained transplant co-ordinators,the introduction of systematic death audits in the hospitals andthe combination of a positive social atmosphere, an adequatemanagement of mass media relations, with an adequateeconomic reimbursement for the hospitals.

This model can be partially or totally adapted to othercountries or regions if basic conditions are guaranteed.

This computer simulation shows Alex Clarke's facetransplanted to Peter Butler as the recipient.

FEATURES

Bulletin Spring 2007 13

FEATURES

12 Bulletin Spring 2007

happens in practically all the EU countries. The family refusalrate has been progressively decreasing from 26% in the earlynineties to 16% in 2005. What is clear is that the increase inorgan donation during the nineties cannot be attributed toany change in Spanish legislation which has remainedunmodified since 1979.

These measures are of course far more than just aboutputting transplant co-ordinators in place and are not easy topull together. The results can be deeply influenced by thespecial attention paid to any one of these factors or thestructural differences from country to country.

ResultsThe organ donation rate increased steadily throughout thenineties and has remained between 33 and 35 donors pmpduring the last seven years. This rate compares favourablywith that of all other Western countries and represents thegreatest increase in organ donation for a whole countryduring this time. Fourteen out of the 17 regions have morethan 30 donors pmp and five of them have more than 40.

The characteristics of these donors have changedsubstantially because of the decrease in fatal road accidentstogether with the increase in the detection of older donors.Road traffic accidents decreased as the cause of organdonation from 43% in 1992 to 14% in 2006, while strokesrose from 39 to 60%. Consequently, the mean age of thedonors went from 38 to 54 years, and the percentage ofdonors over 60 years increased from 10 to 39%.

The family refusal rate decreased from 27.6% to 15.2%.

Deceased kidney transplants rose from 1021 to 2113 (107%increase), and total solid organs transplanted from 1302 to3756 in the last 15 years (almost three times greater).Transplant rates for liver and kidney are by far the highest in

the world, and patients on the Spanish waiting list have thebest chance of receiving an organ.

If the annual number of kidney transplants performed inSpain had remained stable, as in most other countries, nofewer than 15,000 renal patients would have missed out on atransplant during these 15 years.

In addition, as a result of these transplants, there has been ahuge cost saving in renal replacement therapy. It is estimatedthat each year these savings are almost twice the total costof all the solid organ transplants performed in Spain.Therefore, transplantation cannot be considered as a luxuryjust for rich countries, but a very cost effective therapy, whichis able to save many lives all over the world.

The model can be transferred to other regions or countries, if the right conditions exist. For example, some regions ofNorthern Italy, where the model has been applied, are nowreaching over 30 donors pmp.

In addition, a great effort is underway in Latin America,where the model has been adapted to local circumstancesthrough the Iberaomerican Council of Organ Donation andTransplantation which represents 21 Spanish and Portuguesespeaking countries. This has resulted in more than 100transplant co-ordinators being trained in Spain. Uruguay, with25.2 donors pmp now has the same level of donation as theUSA, Argentina has doubled its organ donor rate in the lastthree years (from 6 to 12 donors pmp) and other countrieshave deeply increased their organ donation rates during 2006(Colombia: 60%, Chile 25%, Cuba 30%).

What these figures show and what these experiences reflectis that everything is possible. If the right measures areadopted, positive change in organ donation rates can beachieved.

Description of the modelAll the actions that have been implemented in Spain toimprove deceased organ donation during the nineties areknown at an international level as the “Spanish Model” oforgan donation and have been extensively described inmedical literature. There are several points that (altogether)define the Spanish Model.• A transplant co-ordination network at three levels:national, regional and hospital• The two first levels nominated and paid by the Nationaland Regional authorities are real interfaces between thepolitical and the professional levels. All the technical decisionsabout transplants are taken by consensus in a RegionalCouncil formed by the National and the Regional authorityresponsible.• The third level, the hospital co-ordinator, should be amedical doctor (although helped by nurses in the bighospitals), working almost always on a part-time basis, andlocated inside the hospital. They are nominated by, andreport to, the hospital director (not the head of thetransplant units), although functionally linked with theregional and national co-ordinators.• Most hospital co-ordinators areanaesthesiologists/intensivists, which means an activeparticipation of these physicians in organ donation. Part-timededication allows them to continue with their previous joband especially to be present even in the smaller hospitals.• Continuous brain death audit performed by the transplantco-ordinators. Systematic prospective brain death registries,complemented by retrospective medical record reviews toavoid errors of over or underestimation of the potentialdonor pool, have been introduced in most of the regions. The methodology includes a continuous self audit processand the description of the characteristics and expected ratesin every hospital. It also includes the possibility of externalevaluation. Once a deficit in donor detection is shown in aparticular hospital or area, a detection programme is started.

• The central office of ONT acts as the support agency incharge of organ sharing, transport, waiting list management,transplant registries, statistics, general and specialisedinformation and action which can improve the whole processof organ donation and transplantation. A significant percentage of organs are retrieved in smallhospitals without neurosurgery (up to 30%) and externalsupport can be given to those centres where the wholeprocess cannot be performed. • A great effort in continuous medical training andeducation for new and existing transplant co-ordinatorsfinanced and directed by the central health administration.Development of various training programmes for healthprofessionals, specifically dedicated to every step of theprocess (donor detection and management, legal aspects,family approach, organisational aspects, management ofresources...) have been promoted.• Hospital reimbursement by the regional healthadministrations, which pay for procurement and transplantactivity. Otherwise, the sustained procurement activity,especially of small non-university non-transplant hospitalsbecomes practically impossible. • Much attention devoted to optimal use of the importantrole of the mass media in improving the level of informationand understanding of the Spanish population. A 24-hourtransplantation hotline, periodic meetings held betweenjournalists and opinion leaders, training courses incommunication for hospital and regional co-ordinators, andmanagement of adverse publicity combined with adequateand systematic spread, via the media, to the medicalcommunity and the general public have been implemented.• An adequate legal framework, technically similar to that ofother western countries: definition of brain stem death,organ retrieval after obtaining the consent of the family, no compensation can be paid either for donation or graftedorgans. Spain has a theoretical presumed consent law, butfrom a practical point of view, family consent is always askedand the wishes of the relatives are always respected, as

Qualification

Dependent on

Dedication

Origin

Main objective

More and more involved in

Always medical doctors, helped by nurses in thebiggest hospitals.

Medical director of the hospital. Not part of thetransplant team.

Part-time in 92% of the cases.

Mainly intensivists (72%) but also nephrologistsand others.

Donor detection and facilitation or organprocurement.

Logistic support of the transplant process, management of resources, relation with the media,promotion of donation quality, improvement process of organ donation.

155 teams in 1999 with 198 doctors and 116nurses.

Functionally linked to the regional and national co-ordinators.

Only those dedicated additionally to training,banking tissues etc work full time.

At the beginning most of them were nephrologists.

All others are secondary.

Profile of the Spanish transplant co-ordinators.

Organ donors per million population in Europe and USA.

Organ donors per million population in the Spanishregions.

APPOINTMENT WITH...

Bulletin Spring 2007 15

FEATURES

14 Bulletin Spring 2007

Arrangements are now in place to register couples forthe paired living kidney donation scheme. RachelJohnson, Prinicpal Statistician at UK Transplant,describes the matching process and the nationalallocation scheme.

These national matching arrangements have been endorsedby the British Transplantation Society (BTS) council and byUKT's Kidney and Pancreas Advisory Group.

The matching process All incompatible couples wishing to pursue the option ofpaired donation must be registered with UK Transplant forthe national matching scheme. 'Matching runs' will be carriedout at intervals determined by the rate at which incompatiblecouples join the paired donation list.

It is hoped that the first round of matching will be carriedout in March, although this is dependent on the rate atwhich pairs are registered. The pool needs to contain at least20 or 30 couples, and ideally 50, to ensure some matchingpairs are identified.

There are three key stages in the matching process to identifysuitable pairs for transplant.

Firstly, all matching pairs must be identified. Secondly, allpossible combinations of these pairs must be determined.

The final stage is then to identify the optimal combination ofmatching pairs from all of those possible. It is important toconsider not only which couples are involved but also thenature of the exchanges involved (ie who donates to whom).

A number of criteria have been agreed to identify the mostappropriate combination of matching pairs. These are:• local exchange • sensitisation• HLA match• age difference between two donors in a matching pair • blood group match.

The national matching schemeA scoring system has been agreed to identify the mostsuitable combination of matching pairs using these fivecriteria. A score is then calculated for each of the twopotential transplants in a matching pair. For each possiblecombination of matching pairs a total score is calculated andthe highest scoring combination identifies the set ofproposed transplants.

Scores for individual possible transplants are as follows:Location points:20 points – if the couple who are a match are at the samecentre or at another centre within the same area as definedbelow.0 points – if the matching couple are in another area.

Sensitisation points 0-50 points based on calculated sensitisation (%) divided by 2.Using a pool of 10,000 donors, sensitisation levels (%) will becalculated by UK Transplant by determining the percentageof blood group identical donors to which the recipient issensitised (ie the percentage of blood group identical donorshaving antigens which are declared unacceptable for therecipient).

HLA mismatch pointsThese are based on HLA mismatch levels developed for the2006 deceased donor kidney allocation scheme:

Note - HLA mismatch requirements for an individual recipient canbe specified at time of registration.

Donor-donor age difference 3 points – if donor-donor age difference ≤ 20 years0 points – if age difference >20 yearsNote - maximum donor age acceptable for an individualrecipient can be specified at time of registration.

Final discriminatorIf required, the sum of the age differences between the twodonors in each pair in a combination of matching pairs willact as a final discriminator between combinations.

Blood group matching All blood group compatible matches will be considered withthe exception that blood group O donors will only bematched with blood group O recipients. This will minimisethe disadvantage to group O patients.

Further informationDetails of the matching scheme are available on the UKTransplant website. Go to the 'about transplants' tab andthen 'organ allocation'. Registration forms for the scheme are available by emailing: forms@uktransplant.nhs.uk orcalling Nigel Hanson on 0117 975 7460.

National matching scheme for paired living kidney donationArea Centres

London & Cambridge Guy’s, St George’s, Royal London,Royal Free, West London Renal & Transplant Centre, Cambridge

South, West & Wales (SW2) Bristol, Cardiff, Oxford, Plymouth, Portsmouth

Trent & Midlands Leicester, Nottingham, Sheffield, Birmingham, Coventry

North of England Leeds, Liverpool, Manchester,Newcastle

Scotland & Northern Ireland Edinburgh, Glasgow, Belfast

HLA mismatch level of possible transplant Points

1 000 mismatch (mm) 15

2 [0 DR and 0/1 B] mm 10

3 [0 DR and 2 B] or [1 DR and 0/1 B] mm 5

4 [1 DR and 2 B] or [2 DR] mm 0

Laura Buist is a consultant transplant surgeon and Director of Renal

Transplantation in Glasgow. She hails from Scotland and did her early

surgical training in Glasgow before emigrating south where she undertook

her transplantation training in the Liver Unit in Birmingham. Following that

she was a consultant renal transplant surgeon in Birmingham before

moving back to Scotland in 2003.

Q What prompted you to specialisein renal transplantation?A When I decided to train for a careerin surgery I had no intention ofspecialising in transplantation –probably because I had no knowledgeor experience of it. My trainingprogressed from general surgery todeveloping an interest in hepatobiliarysurgery and then the move to a liverresearch post. It was when inBirmingham that I was introduced toboth liver and renal transplantation andbecame totally hooked on all aspects oftransplantation. At the end of mytraining I decided to concentrate onrenal transplantation and here I amnow.

Q What else might you have done?A My parents tried to direct me tosomething involving maths – probablyeventually teaching. Within the wholemedical spectrum my first love wassurgery but I could have been happy inmedicine or some of the other acutespecialties.

Q What aspect of your current rolegives you most satisfaction?A The most satisfying part is myinteraction with the patients and I hopeit always remains that. I like people andwhat makes them tick so I enjoy thelong-term commitment to the patients.I also find the management aspectssatisfying since it is only by engaging inthe planning of services that you canimprove the lot for patients.

Q What aspect do you least enjoy?A I can't think of any aspect of my jobthat I dislike. The task I least enjoy isprobably the record keeping andkeeping notes detailed and up-to-date –but I appreciate the necessity for thisand doing it properly does make allaspects of patient care easier in thelong run.

Q What has been the greatestsuccess so far in your career?A I can't claim to have had any greatsuccesses. Remember I have a ScottishPresbyterian background so I'm notinclined to blow my own trumpet. I can only hope that the part I haveplayed in the care of most of mypatients has helped them and improvedtheir lives. I work as part of a team soany success reflects on the endeavoursof many people and also on otherfactors that medical science cannotalways explain.

Q If you were made Secretary ofState for Health tomorrow, whatwould you do?A Resign! I see this as a poisonedchalice. The one legislative change Iwould want to see is to exempt juniorsurgeons from the European WorkingTime Directive or at least allow them to opt out of the progressive reductionin the number of hours they areallowed to be on duty. I do believe thatbecause of the unpredictability oftransplant work the trainees do not getadequate exposure to all the aspects of

this type of surgery during the limited hours they are “allowed” to be at work.

Q What one piece of advice wouldyou give to someone new to renaltransplantation?A Make sure you get a thoroughtraining in all the operative skills youwill need to be able to deal with themany diverse conditions you encounterin this group of patients. And also getto know your patients and listen tothem so that you are able to relateproperly to them.

Q What is your most memorablemoment?A There have been many memorablemoments related to my experiences withthe patients. Reflections on theseproduce a private smile and can alsosometimes cause an emotional tear.

Q How do you relax?A I enjoy the arts, frequenting ballet,opera and orchestral performances, aswell as reading and trying to appreciatepainting. I try to maintain order in mygarden and am active in my local church.

Q What would you choose for yourepitaph?A My epitaph is for someone else tochoose. I hope it won't be tooderogatory and that it isn't too imminent– since I still have a lot of life left to live!

...Laura Buist

UK Transplant and the Intensive Care Society havecommissioned a two-year study on collaborativerequesting. Initial research shows what collaborativerequesting means to ICU clinicians and donor transplantco-ordinators in different parts of the country and howthis practice varies when asking families to considerorgan donation. Sarah Edwards, Ella Poppitt andDuncan Young give the results of the survey.

The Assessment of Collaborative Requesting (ACRE) trial willdetermine whether relatives of brain-stem dead (BSD)patients are more likely to consent to organ donation wheninterviewed by the clinical team alone or when interviewedby a clinician and donor transplant co-ordinator (DTC).

When we started planning the study it became clear thatthere were a range of “definitions” of collaborativerequesting, and that practice varied widely across the UK. To get some idea of the range of views and practices we sentout a questionnaire to all adult, paediatric, neuro andcardiothoracic lead ICU clinicians and all DTC team leaders.

A total of 364 questionnaires were sent to the ICU leads ofwhich 33% responded. A further 235 reminders were sent ofwhich 29% responded giving a total response rate of 52%.Of those that replied, 60% did some form of collaborativerequesting.

A total of 18 questionnaires were sent to all the DTC teamleaders in the UK with a 100% response rate of which 72%did some form of collaborative requesting.

Many clinicians and DTCs asked us to make the resultsavailable to the critical care and transplant communities. The responses to all the major questions asked in thequestionnaire are presented here in table form.

We have given the percentages of all responses received forthe questions rather than the absolute numbers. In somequestions more than one response was possible. In thesecases (marked with *) the total percentages may not equal100%. Questions 3 and 7 did not have “tick box” answers sowe have combined similar responses into single categories.

Abbreviations used: BSD – brain-stem dead, DTC – donortransplant co-ordinator, CR – collaborative requesting

Responses from lead ICU clinicians

Donation Advisory GroupDAG met on 9 October 2006

The current PDA form is being reviewed to improve thequality of the data collected to enable more detailed analysis.In addition, national definitions for the donation process havebeen developed to benchmark the work of the donor co-ordinator and to ensure these are consistent with thedefinitions used in the PDA form.

Under new legislation relating to deceased donation in theform of the Human Tissue Act 2004 and the Human Tissue(Scotland) Act 2006 the wishes of the individual areparamount. Under these Acts it is possible to take minimumsteps to preserve organs following death for the purposes ofuncontrolled non-heart beating donation until the wishes ofthe deceased can be established. In addition, blood can beremoved from these donors before organ preservation takesplace and prior to obtaining consent/authorisation in orderto preserve the option for donation.

Concern was expressed that some intensive care cliniciansare not approaching families, particularly from minorityethnic groups, in order to avoid broaching the issue ofdonation.

Further analysis was undertaken from PDA data onwhether there is any relationship between the size of an ICUand the number of potential cadaveric donors that areidentified and offered for retrieval. Although the increasingsize of both general and neurosurgical ICUs is associated withlower family refusal rates this is not statistically significantand this trend is not seen in the paediatric ICUs.

Guidelines have been developed by the Intensive CareSociety for cadaveric donation after cardiac death within ICUsand considerable investment has also been made in severalcontrolled non-heartbeating donation (NHBD) programmes.Despite this, analysis suggests that the increase in thesedonors from 2004/05 to 2005/06 is as a result of existingunits offering more donors rather than more unitsestablishing these programmes. A survey conducted withinthe critical care community suggests that:

there is significant potential for expansion of the NHBD programmemany units do not have an operational policy on the diagnosis of death by cardio-respiratory criteriathere is marked geographical variation in the distributionof units with established controlled NHBD programmesthe influence of the ICS guidelines is as yet uncertain.

Bulletin Spring 2007 1716 Bulletin Spring 2007

FEATURESFEATURES

The results of this survey show that collaborative requestingis taking place in the UK, but the definition varies betweenICUs. 36% of ICU clinicians practice what they perceive to bea collaborative request but this method limits DTC involvement to a back-up role. This was included to assessvariations in current requesting practices.

The survey shows there are a lack of protocols/guidelineswith only 10% of clinicians and 28% of team leaders usingthem.

The lead clinicians that are, or have been, involved incollaborative requesting, list the availability of a DTC,relationship with a DTC and guidelines/policies as beingessential for collaborative requesting.

The team leaders felt that early referral was universallyessential as well as a planned approach, a good relationshipwith, and co-operation of, the ICU. Of those lead cliniciansnot involved in collaborative requesting the majority thoughtthat having the DTC present throughout the interviewexplaining brain stem death and the organ donation requestwas the best model. The team leaders felt that, although thiswas important, early referral was the most vital part of theprocess.

The next stage of the trial is to devise guidance oncollaborative requesting which will be used by all ICUs andDTCs who have agreed to take part.

We would like to thank everyone who took part in thesurvey. If you would like to take part in the next stage of the trial or would like more information please contact Sarah Edwards: 01865 228979 sarah.edwards@nda.ox.ac.uk

*4) If you are not involved in any form of collaborative requesting what model would you expect to work? (n=60 responses)

Interview families yourself to tell them their relative is BSD and request organs with DTC back-up if needed 14%

Interview families yourself to tell them their relative is BSD,then interview again with DTC to request organs 9%

Interview families yourself to tell them their relative is BSD, then leave DTC to request organs separately 4%

Interview families to tell them that their relative is BSD, then request organs with the DTC assisting throughout the entire interview 21%

Don't know – unsure 20%

Clinician only should make request for organs 15%

Other 16%

5) When doing a collaborative request do you (usually) (n=18 responses)

Interview families with the clinician to tell them their relative is BSD and also request organ donation? 39%

Interview families with the clinician to request organ donation only? 44%

Interview families to request organ donation alone (ie with no clinician present)? 17%

6) Do you have any protocols/guidelines?

Yes 28%

No 72%

*7) If you are or have been involved in collaborative requesting in any way (even if your current team does not practise it), what organising or other aspects would you view as "essential" (n=13 responses)

Early referral 100%

Planned approach 69%

Good relationship with ICU staff 31%

Co-operation of ICU staff 23%

Give the right information to the family 8%

Availability of transport for DTC (especially at rush hour) 8%

Good negotiating skills 8%

Flexibility depending on family 8%

Adequate staff 8%

Evidence that CR is best practice for the clinician 8%

Need to access organ donor register before any request made 8%

*8) If you are not involved in collaborative requesting, what model of collaborative requesting would you expect to work best? (n=5 responses)

Early referral to discuss best way to approach the family 80%

Planned approach 60%

Team based approach 40%

Interview families with the clinician to tell them their relative is BSD and also request organ donation 40%

Nurse present 20%

Responses from donor transplant co-ordinator teamleaders

ACRE begins research into collaborative requesting

*1) When doing a collaborative request do you (usually) (n=188 responses)

Interview families yourself to tell them their relative is BSD and request organs with DTC back-up if needed 36%

Interview families yourself to tell them their relative is BSD, then interview again with the DTC to request organs 13%

Interview families yourself to tell them their relative is BSD, then leave the DTC to request organs separately 9%

Interview families to tell them that their relative is BSD, then request organs with the DTC assisting throughout the entire interview 11%

No response (ie unit did not do collaborative requesting) 38%

2) Do you have any written protocols/guidelines?

Yes 10%

No 90%

*3) If you are or have been involved in collaborative requesting in any way (even if your current unit does not practise it) what organisational aspects would you view as essential? (n=105 responses)

Availability of DTC – rapid, easy 37%

Relationship with DTC – communication – team approach – roles 19%

Experience – guidelines/policies for DTCs and clinicians 12%

Early referral – involvement DTC to check the organ donor register 8%

Separation of clinician and DTC for organ donation 7%

Organisation and availability of ICU staff 5%

Nurse to be present for family 3%

Quiet environment for interview 3%

Other 7%

ADVISORY GROUPS

Bulletin Spring 2007 1918 Bulletin Spring 2007

ADVISORY GROUPS

A simulation-facilitated course on end of life and organdonation was piloted in December 2006.

It is recognised that UK Transplant cannot fulfil its currentrole unless significant changes are made to the way in whichtrusts take responsibility for organ donation. The currentissues surrounding organ donation in the UK include:

family refusal ratesdiffering models for organ procurementacceptance of responsibility by the wider NHSmanagement of patients within emergency departmentslack of ICU bedsbrain stem death testingfinancial costs of treating patients with end stage organdisease.

The Department of Health has established an OrganDonation Task Force to identify barriers to organ donationand transplantation and recommend solutions withinexisting frameworks.

A collaborative requesting pilot in two units in theBirmingham area resulted in the consent rate increasingfrom 35% to 75% over the nine-month period of the pilot.

There is a growing problem within some of the smallerdistrict general hospitals, which are having difficulty inproviding anaesthetic cover at night, when most retrievalstake place. A pilot project is underway at Papworth Hospitalusing donor care physiologists rather than anaesthetists toovercome this problem.

DAG members approved the proposal that Dr Danburyand Miss Richards serve as DAG representatives on theIntensive Care Society Assessment of CollaborativeRequesting (ACRE) Steering Committee (see page 16 forACRE report).

Liver Advisory GroupLAG met on 15 November 2006

A recommendation was made to amend the wordingwithin the National Standards for Live Donor LiverTransplants with regard to composition of the DonorAdvocate Team to state that the team would be led by 'aconsultant hepatologist or surgeon with a background inliver transplantation'. The suggested amendment would be re-submitted to NSCAG.

A suitable statement acknowledging the possibility of adonor death occurring from the use of live liver donors is tobe produced by NHSBT in liaison with LAG representativesand the British Transplantation Society.

Transplant co-ordinator teams should emphasise that allnon-heartbeating donors should be considered as multi-organ donors. In addition, all non-heartbeating donorreferrals will be audited to assess whether offers are madeand if not, why not and, if offered, the reasons why they arenot accepted. In many instances the facilitation of a non-heartbeating donor is beyond the control of the donorco-ordinator team due to time limits set by intensivists withregard to the withdrawal of treatment.

A 'top band' of patients will be introduced on the basis ofa three-region system as currently used in the Northern Liver

Alliance. All top band patients will be reviewed on a weeklybasis. A steering group has been established, co-chaired byDr Gimson and Professor Neuberger, to review otherselection criteria and the consequences of a top band interms of the remaining patients on the transplant list.

Split livers can now be offered to top band patients forsplitting.

Before a liver is split, a child should first be identified forthe left lateral segment. Following this the right lobe will beautomatically offered to the same centre/region. Splittingshould not take place at this stage for a full left or full rightsplit. The offering sequence in relation to split livers shouldbe reviewed to take account of these changes.

The allocation principles for split livers will be amended inorder to maximise the potential of liver splitting within theUK. If a liver is not used for a super-urgent patient and issuitable for splitting it will be offered to a centre. Splitting ofthe liver would not be mandatory but the centre accepting itwill be encouraged to split it, if suitable. UKT must beinformed whether or not the split has taken place and,where appropriate, the reasons for non-splitting. If the liveris split the centre has the option to transplant or offer partof the liver on. Left lateral segments should only be offeredto paediatric centres. Further work is underway to producean algorithm showing the sequence for offering livers forsplitting.

Amendments were agreed to the UKT split liverinformation form. The team that splits the liver should beresponsible for returning the form to UKT therefore therecipient co-ordinator should advise the Duty Office at UKTof the nominated splitting surgeon.

Liver splitting activity will, in future, be reported by centreover a calendar year to show those centres that are splittingfor paediatric patients.

The Pancreas Task Force requested the view of LAGmembers on the influence of variations in liver arterial supplyon pancreas retrieval in whole liver versus split livertransplantation. Pancreas Task Force members felt that thatthere would be very few anatomical variants in the liverwhich would preclude retrieval and transplantation of bothorgans but if there were then the liver should take priority.LAG members agreed that the liver should take priority butrecognised that, in most cases, it should be possible todivide a right hepatic artery originating from the superiormesenteric artery with subsequent reconstruction in therecipient centre, even for split liver transplants. This wouldusually enable the superior mesenteric artery to be retrievedwith the pancreas. In difficult cases requiring potentialreconstruction of very small arteries, then this should bedecided after discussion between the consultant pancreaticsurgeon and the consultant liver surgeon. Concerns wereexpressed over the practicalities of using aorta onlyperfusion when using split livers. Once sufficient data isavailable UKT will carry out an analysis to compare thosesplit livers and whole livers retrieved with the pancreas usingaorta only perfusion.

Discussions are ongoing with Transport for Transplants toexplore options to resolve the problem of procuring transportfor organs and recipients as well as for retrieval teams.

ADVISORY GROUPS

Approximately 40% of highly sensitised patients (HSPs)with uncommon HLA types cannot receive a kidneytransplant using acceptable mismatches and these patientsrequire either de-sensitisation therapies or auxiliary livertransplantation. It has been shown that kidney allografts canbe successfully transplanted to HSPs receiving combinedliver/kidney transplants in the presence of donor specific anti-HLA antibodies and a positive cross-match. LAG agreed inprinciple to support a pilot study into auxiliary livertransplantation using orthotopic domino grafting of the leftlateral segment. Before this procedure is undertaken everyeffort should have been made with up-to-date desensitisationtechniques to ensure that auxiliary liver transplantation wouldbe the last resort for these patients. Agreement would besought from KPAG on this basis.

A group has been established to review the evidence baseto develop guidelines for LAG on the indications and contra-indications for liver transplantation for those patientswith liver cell cancer.

Concern was expressed at the increase in deaths on thepaediatric transplant list and the fact that fewer paediatricliver transplants were being performed. There was particularconcern that a higher proportion of paediatric donor liverswere being transplanted into adult patients. An investigationwill be carried out into the classification of paediatric donorsand recipients and whether these should be based onbodyweight and/or age. The offering rules for paediatricpatients will be amended so that a left lateral segment froma blood group O donor will be offered to a blood group Bpaediatric recipient before being offered to blood group Aand AB patients. This change does not apply to adult wholelivers or lobes.

Representatives from Leeds, Kings and Newcastleexpressed an interest in having access to the storage ofvessels for liver transplantation using cryopreservation.

Work is taking place to set up a national organ retrievalimaging system (NORIS) supported by a grant from AstellasPharma Ltd. NORIS will be accessible to every liver unit.

Kidney & Pancreas Advisory GroupKPAG met on 29 November 2006

Although it is generally accepted that mismatchingcommon HLA antigens should, where possible, be avoided inpaediatric patients, this decision should be made locally andon an individual basis for individual patients.

KPAG formally endorsed the recommendation from theEquity of Access Working Party that waiting time should startfrom the date on which the patient started dialysis ratherthan the date on which they went on the transplant list. Thisdata will be collected in the new data sets. Those patientswho refuse a transplant due to social or personal reasonsshould still accrue waiting time from the date of dialysis.Currently, if a graft fails within 90 days then waiting timeincludes the waiting time prior to the transplant. Thequestion of how to calculate waiting time if a graft failsbetween 90 and 180 days will need further consideration.

The Human Tissue Authority Transplantation Working

Group had been trying to resolve ongoing issues. It wasclarified that for uncontrolled non-heartbeating donation it ispossible to take minimum steps, including taking blood, topreserve donor organs whilst awaiting consent. However, theblood cannot be tested until consent is given. Due toinconsistency between the Human Tissue Act and theCoroners Act members requested national guidelines,endorsed by the BTS, UKT and the Coroners Society on theprocedures to be undertaken at the time of death.

The Regulatory Authority for Tissues & Embryos is unlikelyto be established by April 2008. When in place it is likely toestablish an advisory group structure for consideration oftransplantation issues.

Centre outcomes are currently monitored in order toidentify changes in performance in an individual centre.In future, UKT will send each centre regular reports on theiroutcomes.

The 2006 national kidney allocation scheme (NKAS) isworking in line with simulation results and early results areencouraging. However, the scheme is still causing difficultiesfor some centres. To minimise the consequences ofintroducing the new scheme it was previously agreed tophase it in and to incorporate some priority for local/allianceretention. Unfortunately this has distorted the transplantrates and it was agreed that the extra priority for centres toretain kidneys within Tier E locally or within alliances (ie thephasing-in process) should be withdrawn and replaced with adifferent method to help those centres affected. Work isunderway to identify an alternative method.

A minimum requirement for reporting donor and recipientHLA types was introduced to coincide with theimplementation of the 2006 NKAS. During the first sixmonths of the scheme, 87% of deceased donor offer HLAtypes achieved full compliance whilst 77% of living donorswere fully compliant. In addition 54% of recipientregistrations since 3 April 2006 were fully compliant.In future, this information will be de-anonymised andlaboratories will be asked to report on the timescale in whichthey are able to become 100% compliant.

It may be necessary to increase the resolution of HLAdonor typing to meet the needs of patients waiting for atransplant. The national database has therefore beenmodified to accept DPB unacceptable antigens andlaboratories have been asked to enter locally held patients'DPB unacceptable antigens to allow the extent of theproblem to be assessed. A report will then be drawn up forconsideration by KPAG.

A proposal for a national matching scheme for paireddonation was agreed. The matching scheme will use acombination of scoring for local exchange, HLA mismatch,sensitisation and allocating minimal points for donor-donorage match. Points for local matches can be modified ordiscontinued, by agreement at KPAG, at any stage in order toachieve better HLA matching and a slight increase in thenumber of transplants for sensitised patients. The firstmatching run will be carried out ideally with a minimum of30 pairs. Subsequent runs will then take place when thereare either 50 pairs on the list or after six months.

Overall results of living donor transplantation were

ADVISORY GROUPS

20 Bulletin Spring 2007

excellent and better than the results for deceased donorkidneys. Living unrelated donor transplants were significantly less well HLA matched than living related donortransplants. Whilst graft survival was better in livingunrelated donor transplants compared with living relatedgrafts, three-year patient survival was significantly poorer.Further analyses are needed to understand the inferiorpatient survival in the poorly matched living unrelated donortransplant recipients.

A proposal for a UK registry for antibody incompatibletransplantation was endorsed and it was agreed that UKTwould carry out further work on this and report back to KPAG.

At a recent Liver Advisory Group meeting a proposal wasdiscussed to undertake auxiliary partial liver transplants at thetime of kidney transplantation for highly sensitised kidneytransplant recipients. In particular, these would be thosepatients who don't have a living donor and have not beendesensitised. There was deemed to be an impact of thisprocedure on liver transplantation but the general feelingfrom LAG was that this was manageable. In view of the factthat this is likely to affect only a limited number of patientsthe proposal was endorsed by KPAG. This would be reportedback to LAG to ask if representatives from King's and fromEdinburgh would liaise to agree a joint protocol to put this inplace in these two units only.

KPAG considered reinstating the option of listing patientsfor 'clinically urgent' national kidneys for those patients whohave significant HLA sensitisation and who are unlikely toreceive an offer of a 000 or very well matched kidney from alocal non-heartbeating donor. UKT will analyse sensitisationdata for the current transplant list and deaths on thetransplant list by degree of sensitisation to considerestablishing a desensitisation protocol.

Occasionally a patient may be disadvantaged in terms oftheir wait for a kidney transplant either through atranscription error in data relating to them or in terms of anadministrative error such as a failure to reactivate a patienton the waiting list after temporary suspension. KPAG agreedthat the loss should be redressed and a mechanism has beenimplemented by which lost waiting time is reinstated for thepurposes of allocation. In addition, if the patient misses anoffer as a result then they should be prioritised to the top ofthe Tier in which they appear for suitable donors until theyreceive an offer of a kidney. Once an offer has been madethey will lose the additional advantage, regardless of whetherthe offer resulted in that patient being transplanted. In casesof transcription error this will be applied automatically,however losses resulting from administrative errors should beconsidered on an individual basis by the Chairman of KPAG.

Current operating principles state that non-heartbeatingdonor kidneys should be offered via the national schemeonce the retrieving unit declines them. However thetransplanting units in the North Thames alliance requestedthat the kidneys should, instead, be offered to other centresin the alliance before being offered out nationally. With theintroduction of the 2006 allocation scheme UKT can nolonger produce an alliance list. In view of the small numbers

involved and the fact that the national scheme gives priorityfor local areas it was agreed that these should be offerednationally. It was, however, accepted that this system wouldnot result in all of these kidneys being offered locally. In addition, North Thames would be classed as one centre asthey operate as one single retrieval centre.

The transplant community should be encouraged to workto current guidance on the retrieval of organs from high-riskdonors such as those with a recent past history ofintravenous drug abuse and to retrieve all kidneys unless theyare completely untransplantable. There are centres that willaccept organs from high-risk donors for specific patients inthe knowledge that there is a high risk involved.

Currently kidneys from donors over 50 years are notoffered to paediatric units. St James's University Hospital,Leeds has requested that this maximum donor age is raisedto 55 years. All paediatric renal units will be consulted toobtain a consensus opinion based on the best evidenceavailable. If a change is required the British Association ofPaediatric Nephrologists will advise UKT so that anassessment can be carried out of the effect on the adultunits.

Due to the abnormal nature of a horseshoe kidney, it wasagreed that, if split, the second kidney should stay at theaccepting centre and not be exported.

The unsuitable kidney scheme is instigated when a kidneyis declined five times for the same clinical or anatomicalreason. However, in the kidney allocation scheme used priorto April 2006 there was an exception to the rule wherebyoffers would be made to all '000' matched patients shouldthere have been more than five present on the kidneymatching list. It was agreed that, to keep this in line with theprevious scheme, the Duty Office should exhaust the nationalmatching run of Tiers A to D before offering through theunsuitable scheme (even when there are more than fivepatients in Tiers A to D). Unit directors would be contactedto ask if they wished to consider unsuitable kidneys for Tier Epatients.

It is unlikely that testing to obtain the Epstein-Barr virus(EBV) status of all donors, rather than just those offered to apaediatric recipient, could be undertaken as the majority ofcentres would not be able to provide this service out ofhours. The recording of EBV status would be included on therevised datasets forms in the future although for this purposethe data would not be available pre transplant. The onlyalternative would appear to be that the recipient centre teststhe blood samples that accompany the organ, as there is noalternative reliable way of recording EBV in the donor at themoment.

The Department of Health will be asked for clarification onwho should be funding microbiology/virology testing ofdonors and to emphasise that syphilis testing is becomingmore relevant for prospective testing.

A pilot in the North Thames area to allow blood group Bpatients to receive blood group A2 donor kidneys isunderway. However, to date none had been transplanted asthe five blood group A donor kidneys received so far had allbeen blood group A1.