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ulletinUK TransplantThe newsletter for everyone involved in organ transplantation and donationIssue 47 Summer 2003In this issue: UK’s first non-heartbeating lung transplant. Six-year high fororgan transplants. Pioneering liver surgery. How do we get new registrationsto the NHS Organ Donor Register? National potential donor audit.Investigation into the experiences of bereaved adults.


CHIEFLYThe end of financial yearperformance turned outto be even better than Ihad predicted in the lastBulletin. In facttransplants increased by6% across the UK on theprevious year, whichincluded a 5% increase inkidney transplants – thehighest number for fiveyears, a 6% increase inliver transplants – thehighest number of livertransplants ever and a12% increase in corneatransplants.Whilst this is excellentnews andcongratulations are dueto all those who haveworked so hard tocontribute to thisimprovement, the list ofpatients on the nationaltransplant waiting listincreased by 1% andthere remains a chronicshortage of donatedorgans. There istherefore much more todo and continuing hardwork for us all.From 1 April 2003 UKThas now funded 35donor liaison schemesand three more nonheartbeatingschemes inOxford, Cambridge andNewcastle, taking thetotal to nine.The Department ofHealth has published theresults of its consultationon Human Bodies,Human Choices. The fulldocument is available onthe DoH website:www.doh.gov.uk/tissue/and I would recommendreading it in detail assome of the keymessages that willinform new legislationare fundamental totransplantation. Verybriefly they are:• the views of the donorin relation to theirwishes about donationshould be paramount• it should be lawful topreserve the function ofan organ, after death hasbeen pronounced, with aview to donation inadvance of the wishes ofthe deceased or thoseclose to them beingascertained• altruistic and pairedlive donation should bepermitted• all live donation shouldreceive formal oversight,scrutiny and approval• donation shouldcontinue to be anunconditional gift• “next-of-kin” has beensignificantly broadenedto take account ofmodern day relationships• it might be permissibleto allow people toconsent to electiveventilation prior to theirdeath in accordance withstrict codes of conduct• it should be acceptablefor non-medicalregistered practitionersto retrieve organs andtissue.These recommendationswill be discussed in detailby UKT’s advisory groupsand we will continue towork closely with DoH asthe timetable for newlegislation emerges.Sue SutherlandChief ExecutiveUK TransplantbulletinIS PUBLISHED QUARTERLYISSN 1472-0507Copy date for Autumn 2003editionFriday 25 JulyContributions should be sentto the EditorClare Hanson-Kahn,Communications DirectorateUK TransplantFox Den Road, Stoke GiffordBRISTOL BS34 8RRTel: 0117 975 7562Fax: 0117 975 7515E-mail:bulletin@uktransplant.nhs.ukDesigned byWasley Knight CommunicationsPrinted byLeckhampton Printing CompanyFront cover picture:Signing the NHS OrganDonor Register. Seefeature on page 10NEWSJane is London’s new Regionaltransplantation as possible.ManagerJane Griffiths will bejoining UK Transplant asthe new RegionalManager for London. Shehas worked as a donortransplant co-ordinatorfor the past eight yearswithin the North ThamesRegion, more latterly asthe team leader.Jane is delighted to betaking up the post and said:“I have been privilegedthroughout my time as aco-ordinator to work withcommitted and drivenJane Griffiths… bringingexperience as a donortransplant co-ordinator toher new roleindividuals who believe inchoices for the acutelybereaved and of ensuring asmany patients lives aretransformed by“In my new role I will bebringing with me myexperience of organdonation and the pertinentissues, as well as theexpertise to affect andimplement policies andstructures that will trulymake a difference.”Jane will be joining the UKTransplant team later in theyear when she returns frommaternity leave.Jane gave birth to a babyboy, Alexander, in May – abrother for four-year oldOlivia. Congratulations Janeto you and your family!2Bulletin Summer 2003


NEWSNew Director of Statisticsand Audit for UKTDr Dave Collett has beenappointed to the newposition of Director ofStatistics and Audit atUK Transplant.Dave will join UKT from theUniversity of Reading,where he is a SeniorLecturer in AppliedStatistics. Dave has a PhDfrom the University of Hullwhere he lectured beforemoving to Reading.In the mid 1980s, he spenta two-year sabbaticalperiod at the NationalUniversity of Malaysia.During this time, hecollaborated with scientistsat the Institute of MedicalResearch in Kuala Lumpuron modelling thetransmission of malaria,and exploring the likelyimpact of differentintervention policies.Dave was appointed Headof the Department ofApplied Statistics atReading in 1994. Hisresearch interests arefocussed on the medicalapplications of statistics,and he has an internationalreputation for his expertisein the analysis of rates andproportions, and data inthe form of survival times –areas of particular relevanceto the work of UKT.Dave, who will take up hisnew post in August, said,“This position at UKTprovides an irresistibleopportunity to collaboratewith the transplantcommunity on a widerange of problems. I amparticularly looking forwardto working with UKT’sbiostatisticians to helprealise the full potential ofthe National TransplantDatabase.”Dave and his wife, Janet,will move to Bristol at theend of July. He shares hiswife’s interests in the foodof different countries andcultures, and enjoyscooking. Dave is also anenthusiastic gardener, andenjoys walking holidaysspent above the tree line inthe Swiss alps.E-mail:Dave.Collett@uktransplant.nhs.uk (from August)UK’s first non-heartbeating lung transplantIn December 2002 Professor JohnDark and his team at the FreemanHospital carried out the UK’s firstlung transplant from a nonheartbeatingdonorAfter surgery, the lung functionedvery well, but there were a number ofother complications and, sadly, thepatient died.There have been a number of groupsaround the world, notably in Swedenand the USA, who have carried outlaboratory research in this area. Theessence of this work is that you cankeep a lung inflated under warmischaemic conditions (without bloodcirculating) for about one hour.“This transplant” said John “is veryexciting. The lung may be an evenmore suitable organ for nonheartbeatingdonation than thekidney and donor teams need tothink about the potential for nonheartbeatinglung donation.”There is a huge shortage of lungs fortransplant with a high mortality rate,of about 30% – increasing to 40%for some groups of people – for thoseon the waiting list.This donor organ shortage, coupledwith the increasing realisation thatbrain stem death injures the lung,stimulated the team to begin researchin this area. The existing successfulnon-heartbeating kidney transplantprogramme at the hospital, led byDavid Talbot, was a furtherdemonstration of what might beachieved.John explains: “We started thelaboratory work about three yearsago with the idea of confirming thatthe lung could tolerate warmischaemia if inflated and devising ameans of assessing the lung afterremoval from the donor.“Then we had a visit from Dr RobertLove, Lung Transplant Surgeon atMadison, Wisconsin where they havea very active non-heartbeatingprogramme and had already donefive lung transplants. He confirmedthat what we were doing wouldwork.”This experience led the team tobelieve that in the right circumstances(with elective “Maastricht” Category3 donors) doing an assessment of thelung wasn’t necessary, as in thissetting information about thefunction of the lung could beobtained before the donor has died.As a result the non-heartbeating lungprogramme at the Freeman Hospitalbegan at the end of last year and,with the qualified success of the firsttransplant, the team are available toretrieve lungs from anywhere in thecountry.This arrangement is supported by UKTransplant’s Cardiothoracic TransplantAdvisory Group (CTAG) and all nonheartbeatingschemes in the UK havebeen contacted to say that theFreeman Hospital team are keen toretrieve suitable lungs from any“Maastricht” Category 3 nonheartbeatingdonor.For more information contactProfessor John Dark, FreemanHospital, Newcastle tel: 01912231450; e-mail:j.h.dark@ncl.ac.ukBulletin Summer 2003 3


NEWSSix-year highfor organtransplantsThe UK has seen thehighest number of organtransplants in six years.Last financial year (1 April2002 to 31 March 2003)2,780 patients had theirlives saved or dramaticallyimproved through thegenerosity of 1,166 donors.This equated to a 6%increase compared to theprevious 12 months (1 April2001 to 31 March 2002).During 2002-2003:• 75 more people receiveda kidney transplant• 38 more people receiveda liver transplant• the highest number ofpatients for six yearsreceived a kidneytransplant• more people received aliver transplant than everbefore• more people received apancreas transplant thanever before• the highest number ofpeople benefited from acornea transplant in fiveyears• 243 more people hadtheir sight restored thanthe previous yearSue Sutherland, ChiefExecutive of UK Transplant,said: “This is a significantimprovement – reversingwhat has been a steadydecline in organ donationthroughout the 1990s inthis country.”The dramatic turnaroundfollows UK Transplant’s£3.15m investment inhospital-based schemes.Since September 2001, UKTransplant has invested inthe recruitment of moredoctors and nurses workingin 25 living donorprogrammes, six nonheartbeatingdonorschemes, and 24 donorliaison nursing schemes. Inaddition, an extra 11transplant co-ordinatorshave been recruited.Sue links the increase indonation directly with thisinvestment, saying:“We are raising awarenesswith the general public andwe have more nurses outthere asking familieswhether or not their lovedone would have wanted todonate.”Weaknesses in the Human Tissue ActThe government is planning a new human tissue bill forEngland in response to the Isaacs report published in May2003. The report stated that thousands of brains hadbeen removed during postmortem examinations over thepast 30 years without prior family consent and kept formental health research.The Isaacs report is available atwww.doh.gov.uk/cmo/isaacsreportBoots support Transplant WeekBoots are promoting National Transplant Week, 7-14July, on their in-store Advantage Card screens. Thescreens will display a message encouraging customersto join the NHS Organ Donor Register with their BootsAdvantage Card in 250 stores around the UK. TheAdvantage Card initiative with Boots has been hugelysuccessful since it was launched in August 2000. Morethan 500,000 people have applied to join the registerdirectly as a result of the Advantage Card link-up.Telephoneregistrations go liveA pilot telephoneregistration scheme viathe Organ Donor Linewas launched in May.The Organ Donor Linealready takes over30,000 calls each yearhandling everythingfrom general queries toliterature orders.Now, in response to publicdemand, UK Transplant istrialling telephoneregistration in the hopethat sign-ups will increase.“It’s reasonable to assumethat most people phoningthe Organ Donor Linealready feel positive aboutdonation,” says Angie0845 60 60 400Burton, UK Transplant’sMarketing and CampaignsManager.“So by giving them theopportunity to join the NHSOrgan Donor Register thereand then we hope that asignificant number ofcallers will decide to signup.“It’s important that peoplecan register in whicheverway that suits them best.Online registrations are alsoproving to be a success.Over 1,500 have takenadvantage of this schemesince it was launched inDecember 2002.”4Bulletin Summer 2003


NEWSVote forLife pleato 300councilsThe Vote forLife packgives councilsall theinformationthey needto join thescheme.Hot on the heels of last year’ssuccessful Vote for Lifecampaign, which finally resultedin more than 412,000 responsesto join the NHS Organ DonorRegister, councils across the UKare being invited to participatein this year’s scheme.UKT’s Chief Executive, SueSutherland, and Cllr John Meikle,who originally masterminded theidea of sending organ donor formswith council electoral registrationmailings, have jointly written toover 300 local authorities.“Although councils don’t send outelectoral registration forms until theautumn, we decided to write earlierthis time to give them moreopportunity to consider takingpart,” says Maxine Walter, UKT’sMedia and PR Manager. “We’vealready had 40 requests forinformation packs and six councilshave agreed to run the full scheme.“Vote for Life enables councils toplay a key role in promoting healthand enhancing the lives of peoplewithin their own community.”Last year, Vote for Life became thethird highest source of newregistrations to the NHS OrganDonor Register.Lyn McLean meets Dave Clarke, a kidney recipient who won a silver medal forbadminton in the British Transplant Games last August, and is going for gold inthe World Transplant Games in France, in July 2003. The international competitionhas grown from just 100 participants at the first games in Portsmouth in 1978 to3,000 in its 14th year.Good things comeout of a tragic deathA mix-up over a phone number in anewspaper revealed the identity ofa kidney recipient, Dave Clarke. Heowes his life to Lyn McLean whodecided to donate her partner’sorgans.Lyn’s partner, Justin, died suddenlyfrom a brain haemorrhage just beforeChristmas 2001. The following Marchshe was surprised to receive athankyou note from the kidneyrecipient, Dave Clarke, who madecontact via his transplantco-ordinator.Then, last Christmas she receivedanother card from Dave, but this timewith a newspaper cutting about Dave’saim to compete in the WorldTransplant Games.Lyn explains: “I decided to raise somemoney to help him on his way. Iwanted to find out some more so Irang the phone number in the paper,which was supposed to be for theHeart and Kidney Foundation. Icouldn’t believe it when it turned outto be Dave’s mobile.“We talked for about two hours and itwas very emotional. I broke down intears and he did the same.”After the call, Lyn went on to raise£400 and their transplant co-ordinatorsarranged for Lyn and Dave to meet.She said: “I want recipients recognisedin the same way as donors are and toraise public awareness that there aregood things that come out of a tragicdeath.“I’ll definitely keep in touch with Dave.I want to know how he does and howhe’s keeping. And I want to make surehe comes home with a gold medal!”Bulletin Summer 2003 5


NEWSFour recipientsset for worldyacht challengeRichard in his bid to be the first transplantee to sail aroundthe world.UK Transplant has joined forces withthree Swindon companies –Nationwide Building Society, Zurichand Cellular Operations – to make iteasier for staff to sign up to the NHSOrgan Donor Register.Following a request from Julia Drown, MPfor South Swindon, the companies sentan e-mail about organ donation to alltheir staff and allowed them work time toclick onto UK Transplant’s website andregister online.Sue Sutherland, UK Transplant’s ChiefExecutive said: “This is a great way forbusinesses and their staff to supportorgan donation. Giving staff theopportunity to think and talk about organdonation and join the register could savemany lives in future.”Four transplantrecipients are taking partin one of oceanyachting’s biggestchallenges – the Clipper2002-03 Round theWorld Yacht Race.Liver transplant recipientDanny Walsh, kidneyrecipients Richard Ayresand Ben Bryant togetherwith David Barrett, whohas received a hearttransplant, are competingin the race.Ben and Richard, whosigned on for the whole11-month 35,000-milevoyage, are racing eachother to be the firsttransplantees to sailSwindon companies help save livesZurich director, Vyv Attwood, commented:“Organ donation is a very personalchoice. As a responsible employer wehope that by raising awareness of thissensitive issue and making it easier toregister, colleagues will be able to makean informed choice rather than leavingthis difficult decision to their nearest anddearest.”A Zurich employee who was one of thefirst people to register online said: “Whatan excellent idea. This was something I’dalways meant to do, but never seemed tofind time. In the end it took less than twominutes, and I didn’t feel a thing.Thoroughly recommended.”To find out more e-mail:Angela.Burton@uktransplant.nhs.uk ortelephone 0117 975 7495.around the world.Richard was part of a teamof kidney transplantrecipients who successfullycompleted the legendaryFastnet Race in 1989. Hesaid: “I hope to be the firstkidney and cornea recipientto race around the world.“By taking part I hope tocontribute to improvingorgan and tissue donationby raising awareness. Forthose still waiting for atransplant, I hope thevoyage will be inspirationaland show there is light atthe end of the tunnel.“For those families andfriends who in the pasthave agreed to thedonation of a loved one'sorgans, or for those whomay even at this momentbe tragically facing thatdecision, I hope the voyagegives them the courage tomake that difficult decisionand show the beneficialeffect a transplant can haveon another person’s life.”The fifth leg of the journeystarted in June fromMauritius and goes viaCape Town to Salvador,before the sixth and finalcrew leg takes the fleetback to the UK inSeptember via New Yorkand Jersey in the ChannelIslands.For information on therace: www.clipperventures.com6Bulletin Summer 2003


NEWSHospital policy publishedUnited Kingdom Hospital Policyfor Organ and Tissue DonationUK Transplant has published a hospital policy to provide guidelineson organ and tissue donation throughout the UK. The policy,United Kingdom hospital policy for organ and tissue donation, hasbeen written in conjunction with the Transplant Co-ordinators’Advisory Group.The policy has been written to reflect existing legislation andamalgamate codes of practice and current policy in the UK. Thepolicy aims to provide information and support for healthcareprofessionals to ensure that all families are approached by skilledand experienced personnel, in a sensitive manner and at anappropriate time.The policy document will be launched in the coming weeks andcirculated to chief executives of acute hospital trusts, donortransplant co-ordinators and donor liaison nurses. Once launchedit will also be available on the UKT website.Pioneers of life-savingliver surgeryDoctors at King’s CollegeHospital in London haveachieved two world firsts inliver research.The team, based at the Hospital’sInstitute of Liver Studies, havecarried out pioneering hepatocyte(liver cell) transplants on threebabies, in which healthy cells fromdonor livers were injected directlyinto the patients’ livers. The livercells then regenerate and eventuallythe dysfunctional liver cells arereplaced with new healthy ones.If the technique can be applied toother patients, hundreds of livescould be saved and fewer donororgans would be needed as cellsfrom a single donor could be usedfor many recipients.The team at King’s also claims aworld first in the exclusive use offrozen cells for the correction of arare congenital clotting disorder.Previously, success in treatinginherited metabolic disorders hasonly been achieved with a mix offresh and frozen cells. Freezing cellsgives the potential for thedevelopment of a “cell bank” foruse as and when they are needed.Dr Anil Dhawan, leader of theresearch team, commented: “This isan extremely exciting time for liverresearch. These first trials areshowing every sign of beingsuccessful. All three babies aredoing very well and without thehepatocyte injections one of thechildren would certainly have died.“If the technique does providelong-term success then 20 – 40children could avoid livertransplantation each year in the UK.This will free up more donor liversand therefore increase the overallnumber of people who could beoffered liver replacement.”The cell isolation laboratory was setup in 2000 with funding from theChildren’s Liver Disease Foundationthe Community Fund (NationalLottery) and Diabetes UK.King’s College Hospital Liver Unit isworld renowned. It operatesEurope’s largest liver transplantprogramme and last year celebrated2,000 liver transplants for 1,500adults and 500 children.For further information contactJacqueline Green, corporatecommunications, King’s CollegeHospital NHS Trust, tel: 020 73463257 e-mail:Jacqueline.Green@kingsch.nhs.ukBulletin Summer 2003 7


RESOURCESHelpingget themessageacrossPoster reference: DF000029Poster reference: DF000030UK Transplant hasproduced two newposters to promote organdonation. The postersecho the design of therecently revised OrganDonation. Your questionsanswered booklet.Copies will be distributedto transplant centres andcharities in time forTransplant Week.Transplant centresthroughout the UK havenow received newexhibition materials fromUK Transplant. Theexhibition panels aim tohelp transplant coordinatorstake theirmessage to bothcolleagues within theNHS and to the generalpublic.To order additionalposters, contact:Nicole.Sutherland@uktransplant.nhs.ukPlease quote the posterreference number whenordering.Organ donation and religious beliefsAn information pack has beenproduced to support the religiousperspectives on organ donation leafletseries. The leaflets cover the religiousbeliefs of Christians, Hindus, Sikhs,Muslims, Jews and Buddhists onorgan donation. They are a guidelineto the main views of each faith andare a discussion tool for use withpotential donor families in intensivecare units.The pack, compiled by Rachel Howitt,Nursing Sister at the renal unit as StLuke’s Hospital, Bradford, gives moredetailed information on each religionwhich may not be covered in theleaflets. The pack should helptransplant co-ordinators and othersincorporate religious aspects intoeducation programmes or withgeneral awareness raising.All the information in the pack hasbeen reviewed and agreed by wellrespectedreligious leaders frominterfaith organisations in the UK.The pack is being distributed totransplant centres and will beavailable on the UKT website.A national conference on organdonation and religion is beingorganised by UK Transplant and theHospital Chaplaincies Council inBirmingham on 10 September 2003.Web additionsGraphical reproductions of tables and figures relating to transplantactivity during 2002 have been placed within the General Statisticssection of the website. This includes donor, transplant and waiting listactivity in the UK from 1 January to 31 December 2002. The contentsof each figure or table can be downloaded as .gifs for use inpresentations.The conference is aimed at hospitalchaplains, religious leaders,bereavement liaison workers and othersupport staff working in the NHS.For a registration form contactMaureen Scargill, e-mail:Maureen.Scargill@uktransplant.nhs.uk8Bulletin Summer 2003


APPOINTMENT WITH……Rob GinsburgDr Rob Ginsburg is a Consultant Anaesthetist at King’s College Hospitaland has a sub-specialty interest in colorectal, hepatobiliary and livertransplant anaesthesia.Rob helped set up the King’s liver transplant programme. Shortly after hisappointment to King’s in 1988 he became College Tutor, a position he held forsix years, and in 1995 he became the Royal College of Anaesthetists RegionalAdvisor (RA) for South East Thames.In 2001, he was appointed Associate Dean of Postgraduate Medicine to theLondon Deanery and is responsible for managing postgraduate training inGeneral Surgery and in other medical and surgical specialties within theLondon Region.Q What prompted you tobecome an anaesthetist?A I worked in a number of medicalspecialties after I finished my housejobs, but it was only when I triedanaesthetics that I realised wheremy true interests lay. While there isincreasing reliance on the use of“high-tech” devices in modernanaesthetic practice, there remainsa reassuring need for practitionersskilled in the “art” of anaesthesia. Ithink that anaesthetics provides mewith an eclectic mix of intellectual,physiological, medical, technicaland organisational challenges. Eachpatient is different and has differentneeds: the anaesthetist must alwaysbe prepared to deal with theunexpected.Q What else might you havedone?A Probably something completelyoutside medicine. I’ve alwayswanted to restore vintage aircraft.Q What aspect of your currentrole gives you most satisfaction?A I very much enjoy visiting mypatients “before” and “after” theiroperations. Thorough pre-operativeassessment is a fundamentalcomponent of safe anaestheticpractice. But it also provides anopportunity to get to know thepatient, to discuss the operationfrom a perspective different fromthat of the surgeon and to allayanxieties in some small way. Visitingthe patient after surgery can bevery rewarding – particularly if thesurgery has been complex and, as aresult of your care, the patient hascome through well and suffered nopost-operative pain or othercomplications.Q What aspect do you leastenjoy?A I find staying up all night,particularly if I have already workedall day, increasingly difficult. Itseems that the sickest and neediestpatients always present at night.Q What is your mostmemorable moment?A Anaesthetising one of the veryfirst living-related liver transplantsin the UK. I first anaesthetised themum who was donating her leftlobe and then her son, who wasan unbearably ill little scrap, barelythree months old. I’ll never forgetlifting him across from his cot onto the operating table beforestarting the anaesthetic. I had onehand under his torso and onehand supporting his head. As Ilifted him across, his skull, whichat that age should be rigid andpartly ossified, dimpled on myfingers under its own weight. Theseverity of his liver failure meantthat his bones were failing todevelop normally.The surgery was successful and ayear later I was amazed to see he’dbecome a normal toddler intent onwreaking havoc and generatingmaximum noise.Q What has been the mostradical change since you havebeen involved with thetransplant community?A All sorts of technical advances,of course, but the recognition inthe wider medical community thattransplantation is an effectivetherapeutic modality and not justsome expensive, headline-grabbingprocedure wasted on a fortunatefew. The establishment of UKTransplant as a health authority inits own right was timely andunderlined this transformation.Q If you were made Secretaryof State for Health tomorrow,what would you do?A I’d seek to divorce the runningof the NHS from all political control,in much the same way as setting ofinterest rates now rests solely withthe Bank of England.Q How do you relax?A I married late and my childrenare relatively young. Bouncy castlesseem quite effective in limitingdietary intake on sunny days andendless discussions about the slugregurgitating spells of Mr H Potteret al, help on others. I find a subhepatotoxicdose of single maltcombined with a good novel amore effective relaxant, however.Bulletin Summer 2003 9


FEATURESHow do we getNine out of every ten people inthe UK support organ donation inprinciple. The overwhelmingsupport is revealed in anationwide survey for UKTransplant.Yet less than one in six people – 17%of the UK population – has registeredtheir wishes on the NHS Organ DonorRegister (ODR).Ninety-two per cent of people whotold researchers they supported, orwere unsure about organ donation,favoured the existence of a centralregister. But 36% of them wereunaware the ODR existed; 26% hadnever thought about joining; 17%“hadn’t got round to” registering and10% didn’t know how to join.The survey was commissioned in a bidto identify the key barriers to joiningthe ODR and the key messages andtriggers which might encouragesupporters to discuss their wishes withthe families and add their names tothe ODR.The Government has set UKT thetarget of increasing the number ofpeople on the register to 16 million by2010. The results of the survey will beused to inform the future direction ofcampaign and publicity work.One in 20 (5%) of people whosupported organ donation but werenot on the ODR said they feltuncomfortable thinking about, letalone discussing, their death. Onlyone in 25 (4%) of the peoplequestioned said they were opposed toorgan donation.Sue Sutherland, Chief Executive ofUKT said: “This is an overwhelmingvote of support for organ donationand transplantation – it gives us faithin each other and hope to thethousands of people waiting for atransplant.”The survey was carried out by RBA ofThere needs to be a catalyst for families to talk about organ donationLeeds. Researchers held groupdiscussions in Bristol, Birminghamand Newcastle and two interactivemarketing sessions with year 12students at schools in Bradford andLeeds. Telephone interviews wereconducted with 1,206 people acrossEngland between 13 January and 12February 2003 to get the view of awide cross section of the community.The qualitative research involved ninefocus groups, two with peoplealready on the ODR; two with peoplewho supported organ donation buthad not registered; two with peoplewho did not support organ donationand three family groups. Resultswere weighted by age, gender,working status and geographicallocation.UKT is commissioning research in theNHS, to be carried out in theTALKING ABOUTORGAN DONATIONWITHIN THE FAMILY• Not something that comes up ineveryday conversation• Must be a catalyst for discussion,eg TV programme, somethinghappened at school, death in thefamily• Parents likely to avoid subject toprotect children from anxiety• Children a lot more open mindedand more comfortable aboutdiscussing and learning aboutdeath and organ donation• Children influenced by theirparents• Mother most influential butwants children to make theirown decision10Bulletin Summer 2003


more to register?ORGAN DONATION- in favour• 90% of people in favour of organ donationin principle• No significant difference between ages,gender, working status, ethnicity or socioeconomicgroupings- because• “You’re letting someone else live”• “If I’m dead it doesn’t matter”• “You could be that person and if you’re notprepared to do the same for someoneelse…”• “You might as well get something positiveout of something so tragic”• “I know someone who needed a kidneytransplant”- against• 4% of people opposed organ donation- because• “Don’t know” (30%)• “Don’t like the idea of being cut up/it will bereally painful” (18%)• Religious reasons (12%)• Distrust of medical professionalsDISTRUST OF MEDICALPROFESSIONALS• One in seven (15%) disagreed with thestatement “I trust health professionals tomake the right decision”• Lack of trust was highest in the WestMidlands and amongst those aged 25-59and lowest in the north east- why?• “Will my organs be sold to the highestbidder?”• “Won’t try and save you if they know you’rea potential donor”• “Won’t treat your body with respect (before,during and after transplant)• Organs will be used for researchCard holders had owned their card for an average of14 1 ⁄2 years.DONOR CARDWhen asked about donor cards, the research found:• 36% of people who support organ donation had, or thoughtthey had, a donor card• card holders had owned their card for an average of 14 1 ⁄2 years• men were less likely than women to have a card• card ownership was highest in the East Midlands and lowest innorth east England• 39% of people felt there was no need for a donor card if theregister existed, but 54% disagreed• the research showed confusion around the difference betweenthe card and the register• one in 16 (6%) of cardholders had not told anyone close tothem they wanted to donate.HOW WOULD YOUPREFER TO REGISTER?People who had not registered but were willing to said:• collect a form from my GP (62%)• online (37%)• form from a pharmacy or with driving licence/GPregistration/passport/electoral roll/council tax (31-24%).Bulletin Summer 2003 11


FEATURESHow do we getmore to register?Continued from page 11Students gave these suggestions for messages to encourage registrationKEY TRIGGERSTO ACTIVATEREGISTRATIONParticipants identified the followingtriggers:• more information about the registerand organ donation (46% raised this)• if someone they knew needed atransplant (7%)• more reassurance that medicalprofessionals can be trusted ie theywill try to save you even if you are aregistered donor and will treat yourbody with respect at all times (2%)• some form of payment/reward (2%)• make it easier to register with tickboxes on other forms• while shopping, eg street canvassers inshopping centres, supermarkets (28%)• register over the phone, through blooddonor centres or face-to-face with GP• TV advertising• advertising/visiting in schools• relevant and real case studies ofpeople who have helped or who havedied, particularly children.NHS ORGAN DONOR REGISTERKey findings about the registerwere:• 92% of those who supportedorgan donation were in favour ofthe register• 53% said they woulddefinitely/probably register in thenext six months (however, thisawareness was raised by thesurvey and so is notrepresentative of the population)• women and people aged 25-59were more likely to say theywould join• average length of time on theregister was 3 1 ⁄2 years• there was strong disagreementthat next of kin’s consent wasneeded. 61% agreed with thestatement that “if there is nodoubt that someone wants todonate their organs, it should notbe necessary to get permissionfrom the next of kin”• only 14% of people said theyhad seen any information aboutregistering. Awareness ofinformation about the registerwas highest in the north westand north east and lowest in thesouth east and south west• just over one in five (22%) ofpeople over 60 said they couldn’tregister as they were too old.Reasons given for joining theregister:• “You can be sure that peopleknow your wishes, as you mightnot always have your card withyou”• “Don’t have to carry a cardaround”• “It makes it easier for my familyto deal with the dilemmabecause they know it’s what Iwant for sure”• “It takes the responsibility awayfrom your family” (this is a keymisunderstanding).Reasons given against joining theregister:• Don’t know about it (38%)• Personal/religious reasons (20%)• “What’s the point if you have adonor card?” (15%)• Fear of commitment – card canbe thrown away• Mistrust of medical professionals.Only 9% of people interviewedthought they were on the register.This suggests people had ticked abox and forgotten they’d registered.12Bulletin Summer 2003


Greatpotentialin auditIn January 2003 UK Transplant’snational potential donor audit(PDA) began, as part of a seriesof measures to improve organdonation. No large-scale donoraudits have been undertaken inthe UK since the late1980s/early 1990s, and,although various local exercisesare being carried out to assessthe numbers of brain stem deadpatients, it was felt that anational approach was required.UK Transplant’s PDA aims toprovide an up-to-date assessmentof the potential for organ donationfrom Intensive Care Units (ICUs)throughout the UK. The audit willidentify the number of patientswho could be heartbeating or nonheartbeatingdonors and willestablish the obstacles to donation.Pilot of the PDAA pilot of the PDA began in May2002 using an audit formdeveloped by UK Transplant incollaboration with members of theTransplant Co-ordinator’s AdvisoryGroup, other transplant coordinatorsand ICU link nurses. The21 donor liaison nurses (DLNs)funded by UK Transplant completedone form for each death in eachICU that they covered. Severaldonor transplant co-ordinatorteams also participated in the pilotstudy with a total of 130 ICUsinvolved. The pilot study continueduntil 31 December 2002.An evaluation of the first threemonths of data collected from thepilot study (June-August 2002) tookplace during September 2002 andreports of each unit’s activity weresent to the ICU itself and to theEvery ICU in the country has been invited to take part in the national auditrelevant donor transplant coordinatorsand DLNs. Furtherreports of each unit’s activitycomprising summaries of sevenmonths of pilot data (June-December 2002) have beenproduced and are currently beingcirculated to the appropriatepersonnel.The results from the national reportof the pilot of the PDA over theseven months audit period (June-December 2002) showed that atthe time of the analysis, 104hospitals (130 ICUs) had reportedat least one patient death.Of the 3,926 audited deaths, brainstem death was confirmed in 296(8%) patients. Moreover, for 258patients the possibility of solidorgan donation was suggested torelatives and consent for donationwas given for 152 (59%) patients.131 (51%) of the 258 patientsbecame solid organ heartbeatingdonors. In 38 (13%) of 296 familieswas there no discussion ofdonation with relatives.It is important to note that theseresults are based on completedPDA forms returned to UKTransplant by 7 February 2003, iethey are based only on auditeddeaths and not on all patientdeaths in ICUs. However, it isintended that further reportsproduced using data collected fromthe national PDA will be morecomplete and comprehensive, andit is hoped that all ICUs in the UKwill take part in this national study.National PDAThe PDA is currently being carriedout using the UK Transplant formamended in light of experiencegained from the pilot study. Theforms are being completed by DLNsin the ICUs where they are in post(35) and by donor transplant coordinatorsand/or link nurses in allother units. Completed forms arebeing sent to UK Transplantfortnightly with the ICU DirectorContinued on page 14Bulletin Summer 2003 13


FEATURESPotentialdonorauditFrom page 13After they’veBy Tracy Long, Research Fellow,School of Nursing and Midwifery, University of Southamptonhaving every opportunity to confirmthe accuracy of the data. As withthe pilot study the results from theaudit will be made available to eachunit and the relevant donortransplant co-ordinator teams andDLNs. To date, approximately 250ICUs have commenced the nationalPDA.UK Transplant hopes that the PDAwill continue to raise the profile oforgan donation and heightenawareness of donation issuesamongst all critical care staff. Inaddition it will allow a realisticestimate to be made of the truepotential for organ donation in theUK and will allow both local andnational obstacles to reaching thepotential to be identified.Chris Rudge, Medical Director ofUK Transplant, said: “At this stagewe can’t draw too manyconclusions from the pilot data,although we can say that theresults from the pilot arecomparable with previous studies.“This is a huge and very ambitiousstudy and the first time such anaudit has been done on a nationalbasis for many years. It is a reallypowerful tool that will enable us toidentify precisely the potential fororgan donation. We really hopethat every unit in the country willtake part in the PDA so that theinformation is as complete aspossible.”UK Transplant is very grateful to allthose who have taken part in thepilot studies and to the IntensiveCare Society and Critical Carenetworks for their ongoing supportfor the introduction of the nationalPDA.For further information e-mail:Kerri.Burbidge@uktransplant.nhs.ukA new report has beenpublished following a threeyearinvestigation into theexperiences of bereaved adultswith whom organ and tissuedonation was discussed.Impact of care in hospitalSudden death makes specificdemands of the next-of-kin at atime when they are emotionallyand cognitively ill-equipped torespond. External demands, such asreceiving complex information,responding to requests from healthprofessionals, the needs of otherfamily members and the tasks ofdaily living, are competing withinternal demands such as theunreality of the situation, thephysical pain of loss, thinking aboutthe deceased, the need to fulfil thewishes of the deceased and theneed to make decisions aboutorgan donation.Findings from interviews withfamilies at three to five monthsOrgan and tissue donation:Exploring the needs of familiesAuthors: Dr. M. Sque, T. Longand Prof. S. PayneCommissioned by: British OrganDonor Society (BODY)Funded by: National LotteryCommunity Fund.post-bereavement indicated thatinitial information given to familiesabout the critical injury sustained bytheir loved one will have lastingpositive impact if it is correct, givenin complementary ways and isresponsive to individual needs. Forexample, discussion supported bywritten information appeared tohave an impact on the quality ofinformation remembered. Theadditional use of visual informationaids made a lasting impression onparticipants. What the next-of-kinsaw, heard and experiencedremained with them and was stillavailable for discussion two yearspost-bereavement.To facilitate bereavement that isuncomplicated by questions aboutthe brain injury and subsequentdeath, participants needed TAC:Time – to understand and absorbthe nature of the brain injury thatkilled their loved one; time torealise the inevitability of death;time to discuss this with otherAims of the studyTo identify the impact of initial care offered torelatives in terms of decision-making aboutdonation and subsequent grief.To identify ways of enabling relatives to makechoices about organ and tissue donation thatare right for them.To assess the need for bereavement supportand the effectiveness of any support received.MethodFace-to-face interviews and two, selfcompleted,psychometric measures were usedto gather information about the bereavementexperiences of 46 family members who choseto donate their deceased relative’s organs andthree who declined donation. Donatingfamilies were interviewed at 3-6, 13-15 and18-26 months post-bereavement. Singleinterviews were carried out with participantswho declined donation.Copies of the report are available for £18.50from BODYTel/fax: 01223 893636, e-mail:body@argonet.co.ukYou can read a summary of the report on theweb:http://www.argonet.co.uk/body/Report.htmlFor further information about theresearch contact Dr. Magi Sque, School ofNursing and Midwifery, University ofSouthampton. E-mailm.r.sque@soton.ac.uk14 Bulletin Summer 2003


gone…family members and to seekreassurances for any concerns.Attention – to the special role thatthey had as next-of-kin; attentionto their inner turmoil and theunderstanding, by healthprofessionals, that this will impacton how they process information.Care – in the way, and the where,that information is presented andthe understanding that this will“live” on in the minds of the nextof-kinfor years to come.Recommendations• Assessment of individualinformation needs, availablesupport and emotional responsesto the ongoing situation.• Development and greater use ofvisual information aids eg CTscans, x-rays, anatomical modelsof the brain and leaflets to helpexplain the critical injury; possiblyusing a video to explain brainstem testing.• The offer of the opportunity forfamily members to watch brainstem testing if they wish to doso.• Education of all healthprofessionals regarding thebereavement needs of families.Helping families make the rightdecisionEnd of life decisions remain withthe living long after the death of aloved one and have beenimplicated in abnormal andcomplicated grief. As families havea time-limited opportunity toconsider organ donation, it isimperative that the approach anddiscussion about organ donationfacilitates a decision that will not beregretted later.The findings of this study, thatfamilies did not feel that beingasked about organ donationAvril Wilson talks to a patient’s relative about organ donation. Avril spendshalf her time as a ward sister and half as a donor liaison sister at UlsterHospital in Dundonald. She talked about how hard it is to ask recentlybereaved families about organ donation. She explained: “It’s always painfuland you never get used to it. But it’s the best outcome from a bad situation –so that life can go on. A lot of support is given to relatives. In my position I canbe with relatives throughout. There’s a bond of trust and it’s such a privilege tobe there with them.”increased their distress, or thatorgan donation should not havebeen raised by the healthcare team,should provide health professionalswith compelling evidence tosupport their practice. Families mayhave felt that the timing was pooror that the manner in which theywere approached and donationdiscussed was unsatisfactory, butthey recognised that healthprofessionals had a responsibility toraise the topic.The study highlights the necessityfor health professionals to discussorgan donation, focusing on thepossible consequences to the familyof a decision that may be regrettedlater. It also confirms theimportance of raising awarenessamongst the general public so thatfamilies have thought about organdonation before they are involved inthe situation of a sudden death.Recommendations• The discussion about organdonation should be carried out,and restricted to, those staffmembers who are comfortableand knowledgeable about thistopic.• Greater publicity about theprocess of organ donation, usingthe media to stimulate discussionand acknowledge the impact oforgan donors in society.Bereavement supportAll but one family who met withtransplant co-ordinators during thehospital experience wereunanimously positive about thisexperience. Whilst someparticipants had to wait “too long,too long” to meet with transplantco-ordinators, those who did waitto meet with them were impressedwith the care offered.One area of bereavement supportthat transplant co-ordinators werevery aware of was the need forcontact with, and mementoes of,the deceased. These ranged fromthe opportunity to “lay down withthe deceased” to offers of hand orfootprints and locks of hair. Theseoffers were all potentContinued on page 16Reproduced courtesy of Belfast TelegraphBulletin Summer 200315


FEATURESFrom page 15acknowledgements of therelationship shared and the personlost.Receiving information regarding theuse of the donated organs andtissues became an increasinglystrong theme in interviews.Participants and family memberswanted to hear from recipients andalso wanted to hear about the useof tissue such as eyes, heart valves,skin and bone. Unlike the swiftinformation about organs familiesoften waited months andsometimes did not receive anyinformation about the use ofdonated tissue.Bereavement support for familieswho have been asked to considerdonation should begin at thebedside and continue for as long asnecessary. This places a requirementof care on transplant co-ordinators,as they are the link between thehealth service and the family. Theywere often one of the last peopleto see the loved one beforedonation and the person who tookresponsibility to carry out lastoffices.‘‘There is a myth that if youapproach families it mightactually make their griefworse. But it doesn’t get anyworse than to be told thatyour loved one has died.Whether they say yes or no, itdoesn’t make the situationworse.Fiona Wilkinson, ” donor liaisonnurse, Bolton Hospital.Recommendations• ICUs should seek early referral ofdonation opportunities totransplant co-ordinators so thatfamilies do not have to waitaround for long periods and sothat transplant co-ordinators canmeet face to face rather thancontacting families by telephone.• Regular updates to donatingfamilies on progress of therecipient, even if no letters fromrecipients are forthcoming.• Contact by transplant coordinatorsat or near the firstanniversary of the death or atChristmas time.• Home visits in the case where aspouse dies and there is limitedfamily contact.• Specific consideration of theneeds of bereaved children andtheir parents.• The establishment of abereavement service that canwork with transplant coordinatorsto provide support.• Development of referral systemswith bereavement supportorganisations.The ability to donate human organsand tissue introduces a relativelyunexplored dimension to grievingthat requires specific attention.Donating families are grieving thedeath of their loved one, while partof that person “lives on”elsewhere, contributing to the lifeof the recipient. This introduces aspectrum of needs that can only befulfilled by a clear understanding ofhow critical injury, sudden deathand organ donation can impact oninitial and subsequent grief. Thisreport indicates that these needsmay not be met by present supportsystems.BRIEFLYICUs are usingthe ODR moreDuring the last three months there has been a 70%increase in the use of the NHS Organ Donor Register bymedical professionals. Last year (May 2002) access to theregister was extended to senior medical and nursing staffin ICUs and donor liaison nurses as well as transplantco-ordinators.Ocular tissue transport chargesThe transport charges for ocular tissue will remainunchanged for 2003-04.BulletinJudges of a recent Communicators inBusiness award congratulated UKT onBulletin‘s design: “Bulletin’s design hasthe feel of a professional journal.“Each page has a clear focus, and clarityas to which is the most important story.“The tone of Bulletin’s design reflects wellon the organisation and theprofessionalism involved in this complexand life-saving work.”I hope you agree!16Bulletin Summer 2003


WORKSHOPSEthnicity & renal failure:disparity or diversityBy Sue Woodcock, Lead forRenal Education at SouthWest Thames Renal &Transplantation UnitThis was the firstnational symposium onethnicity and renalfailure, held in London inMay 2003. It highlightedthe three to five foldincrease in the risk ofdeveloping end stagerenal failure (ESRF)amongst Indo Asian andAfrican Caribbeancommunities in the UKand the resultingdisproportionaterepresentation of thesegroups on dialysis andtransplant waiting lists.Geographical inequalities,genetics, the environmentand styles of life wereidentified as causal factors,along with the onset ofESRF occurring, on average,ten years earlier in theethnic population (in their50s) as opposed to theCaucasian population.This led to the suggestionthat we are about toexperience a potential“epidemic of renal failure”in the Asian and AfricanCaribbean population. Itwas argued that if theplanning and funding forthe provision of renal care,particularly in cities andconurbations with highethnic minorities, does nottake this demographic factinto consideration, then asevere mismatch of theprovision of unmet needsDaljit waited for ten years for a kidney transplant. Theaverage (median) wait for a kidney transplant if you arewhite is one and a half years. The average wait if you areAsian is about four and half years.could occur in the comingyears. This would affect allpatient groups requiringrenal replacement therapyand not only minoritygroups.In discussingtransplantation, thesymposium highlighted thelack of organ donors fromthe ethnic population;despite the fact ethnicpatients aredisproportionately overrepresentedin the dialysispopulation as a whole.Causal issues wereidentified as cultural andreligious beliefs andpractices, poor awarenessand a general lack of healtheducation with regard todiabetes, hypertension andrenal failure. As a result offewer ethnic donors andsignificant diversity in bloodgroup and tissue type,ethnic patients are likely tostay on the transplantwaiting list for a suitableorgan for two to threetimes longer than someoneof European extract.A number of local initiativeswere showcased including ablack awareness raisingprogramme in south eastLondon and a screeningprogramme in Brent. Bothof these initiativesdemonstrated some successin beginning to tackle theissues at large.The most impact, however,was delivered by two OrganProcurement Specialists,Tina LeVert and DollieGentry from the LifeGiftOrganisation, USA. Theydemonstrated how aculturally sensitiveprogramme, that combinesin-house development andeducation of hospital staff,with a proactive butempathetic approach todonor families really canresult in a significantincrease in consent ratesand donor organs.Dr Donal O’Donaghueconcluded the day byrecognising that patientnumbers from minoritygroups are on the increaseand that transplant activityremains static. However,the way forward seems torequire an improvement inthe availability and deliveryof health promotionservices and awarenessprogrammes and a freshlook at the way we procureorgans.For more informatione-mail:Sue.Woodcock@epsomsthelier.nhs.ukSee also the series ofreligious leafletsproduced by UKTransplant, which aim todispel some of the mythsaround religion. Thesehave been endorsed bykey religious leaders andare being made availableto ICUs throughout thecountry. They are alsoavailable on the UKTwebsite.Bulletin Summer 2003 17


WORKSHOPS500 attend sixth BTS CongressBy Philip Dyer, President,British TransplantationSocietyThis year’s Congress inApril covered all aspectsof transplantation frombasic science to organdonation and clinicaltransplantation. Almost500 delegates attended,the highest number ofany Society meetingsince its formation in1972.A highlight was thepresentation by ProfessorLeslie Brent, on the 50thanniversary of the originalpaper, describing inductionof tolerance to allogenicskin grafts. This work,which is central toexperimental and clinicaltransplantation, waspublished in 1952 byBillingham, Medawar andBrent. Following anappreciation by ProfessorSir Roy Calne, Fred Fandrichfrom Kiel described hisprotocol for cessation of allimmunosuppressive drugsafter kidneytransplantation; results areeagerly awaited later thisyear.A second invited speakerwas Barry Kahan from Texaswho reviewedimmunosuppressionprotocols which do not usea calcineurin inhibitor withthe aim of avoidingunwanted side-effects ofthose drugs.For younger members, acentral part of eachCongress is the competitionfor the Medawar Medal,presented in memory of SirPeter Medawar, who wasthe founding chairman ofthe Society. This year thecompetition was as keen asever with the winner beingMahzuz Karim from theOxford Transplant Centrewho presented data on therole of CD25+CD4+regulatory T cells in amouse transplant model.Further information aboutthe Society, details ofmembership and adiscussion group can befound at www.bts.org.ukA copy of the Congressabstracts is available fromwww.bts2003.org.ukNext year’s Congress willbe held at the ICC inBirmingham in April 2004and details can be found atwww.bts2004.org.ukDiaryNational TransplantWeek7 – 14 JulyNational Donor DayWednesday 9 JulyInformation: Sue Johnstoneat TIME Tel. 0117 931 4638British Transplant Games27 – 30 July, Stoke-on-TrentInformation: Mike Wixey01527 577101Road to RecoveryConference17 September, BirminghamOne-day BrakeCareconference forprofessionals, including ICUand A&E managers andnurses, looking at theprovision of care for thosebereaved or seriouslyinjured through roadcrashes. Information:aheath@brake.org.uk.TransplantationImmunotherapy5 – 6 September, BasleMeeting to review recentclinical outcomes intransplantation and clinicalareas posingparticular challenges forimmunosuppression.Information:www.ictdmct2003.chDonation and Religion10 September, BirminghamConference organised byUK TransplantEmergency Contact Telephone NumberIn the event of the main UK Transplant system failing, there is analternative telephone number that can be used - 0117 931 4777.During office hours this number will be answered by the UKTransplant receptionist but out of office hours the numberis automatically directed to the Duty Office.0117 931 4777 should only be used if you are unable to obtain aresponse from the0117 975 7575 telephone number.UKT and the HospitalChaplaincies Councillooking at the role andperspectives of religion andorgan donation.Information:Maureen.Scargill@uktransplant.nhs.ukBritish TransplantationSummer School17 – 19 September,Manchester. Information:kpoulton@mint.cmht.nwest.nhs.uk13th Congress of theEuropean TransplantCo-ordinatorsOrganisation20 – 21 September, VeniceInformation:arianna@keycongress.comCopyright and Liability7th Annual symposiumin Organ Donation andTransplantation8 October, ManchesterOrganised by the Liverpool,Manchester and Leedsoffices transplantco-ordinators.Information:Maria.Walsh@leedsth.nhs.ukVOICE RECORDERTELEPHONE CALLS TO THEUK TRANSPLANT DUTY OFFICEThis notice is to inform usersthat all telephone calls to theDuty Office are recorded. Oftelhave agreed that this statementis an appropriate safeguardpermitting the recording warntone to be suppressed.2003 UK Transplant. All rights reserved. No part of this publication may be reproduced ortransmitted in any form or by any means, including photocopying and records, without thewritten permission of the publishers or, where appropriate, the author of an article. Such writtenpermission must also be obtained before any part of this publication is stored in a retrievalsystem 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 responsbility or liability inrespect thereof or any other information contained in this publication.18 Bulletin Summer 2003


ADVISORY GROUPSOcular Tissue Advisory GroupOTAG met on 22 January 2003• Centre specific summary information – the group werekeen that each consultant should receive this report onan annual basis.• Pilot scheme for registration/request form for non-HLAmatched ocular tissue – four units had been involved in apilot scheme to fax completed registration/tissue request(OT2) forms to UKT’s Duty Office. The pilot scheme hadgone well and now the new form has been issued to allophthalmic transplant units as the new format in whichall future requests for tissue should be made.• Transplant record and follow-up form return ratescontinue to improve, but there is still variation betweencentres.• Research study – a grant application has beensubmitted with the support of Professor John Armitageand Mr Chris Rudge to quantify the true need for corneatransplantation in the UK.• HTLV Testing – members agreed it was not necessary totest ocular tissue donors for HTLV. However, if a multiorgandonor was found to be positive for HTLV then theocular tissue would not be used. MSBT will review thisadvice and issue guidance later this year.Renal Transplant ServicesmeetingRTSM met on 28 February 2003• A national scheme for the allocation of kidney/pancreasorgans was agreed and will be implemented in midAugust 2003.• Waiting list criteria for transplantation were approvedand will shortly appear on the UKT website. All renalunits and tissue laboratories will be issued a copy of thecriteria.• Strategic issues for consideration for Kidney andPancreas Advisory Group (KPAG) were raised andcolleagues are encouraged to bring issues for KPAG tothe attention of their KPAG representative.• Potential use of kidneys from blood group A 2 donors inblood group O and B transplant patients. It was agreedthat after provision of further simulations a new schemewould be piloted. The scheme would initially be restrictedto blood group B recipients.• Four year review of the national allocation scheme –there have been significant improvements in HLAmatching for all adults, paediatrics and for adult regrafts.Cardiothoracic Advisory GroupMeetingCTAG met on 12 March 2003• Cardiothoracic zones – a revision to the zones hasbeen implemented.• A new core data set will be developed by a groupworking on behalf of the Royal College of Surgeons.• UK Fast Track Scheme – the scheme is not being usedexcessively and it has enabled six recipients to benefitfrom transplants that may not have otherwise beenpossible.• A three month retrospective review of the reasons fornon-use of cardiothoracic organs was conducted inOctober to December 2002. A variety of reasons wereidentified and steps have been proposed to improve thesituation.• Survival of urgent heart transplants – the schemeappears to be working well.• The use of O donor hearts for urgent transplants – itwas agreed to stay with the current system and debatethe issue again at the next meeting.Pancreas Task ForcePTF met on 2 May 2003• An application for National Specialist CommissioningAdvisory Group (NSCAG) funding for pancreastransplantation will be submitted in June 2003.• A national protocol for assessment of patients forkidney/pancreas transplants has been agreed and will beposted on the UKT website. All kidney/pancreastransplant units will be issued with a copy of theprotocol.• Members discussed HLA-DR matching for solitarypancreas transplants. It was agreed at present that thetransplant numbers were insufficient to allow a practicalHLA matching scheme to be introduced.Liver Advisory Group MeetingLAG met on 7 May 2003• The annual review of documentation on the use andallocation of livers from cadaveric donors is underway.• A new core data set will be developed by a group onbehalf of the Royal College of Surgeons.• Auditing the 50% survival criterion for registering liverpatients – UKT aim to develop a suitable method ofauditing the registration of patients onto the nationaltransplant waiting list according to the guideline agreedby LAG with particular reference to the “at least 50%probability of survival at five years after transplant”.Bulletin Summer 200319


AROUND THE COUNTRYGivelife kicks off in north-westGivelife is a new initiative forthe north-west region whichaims to raise public awarenessand improve communicationbetween those with an interestin organ and tissue donation.The group is lead by donorliaison sisters and donorco-ordinators at Royal BoltonHospital, Wythenshawe Hospital,Royal Preston Hospital andManchester Royal Infirmary.The initial launch meeting was heldat the Reebok stadium in Bolton inFebruary, with 45 delegates from allover the north-west includingtransplant surgeons, eye bankpersonnel, transplantco-ordinators, coroners,ophthalmology surgeons, linknurses, consultant nurses,recipient patients and donorfamilies.Fiona Wilkinson, DonorLiaison Sister at Royal BoltonHospital reports: “It wasamazing. We hadbrainstorming sessions, whichgot everyone thinking andfocusing. It was anachievement to get all thosepeople together in one placeand there was a real sense ofcommitment and workingtogether.”Awareness postersacknowledging a local donor, ZoëGreenhalgh, have been designed forthe campaign. Zoë died last year ofa rare cancer and donated hercorneas. In the final months of herlife she contacted Fiona Wilkinsonas she was determined to helpothers after she died. Zoë recentlywon the Bolton Charter of HumanityWoman of The Year award for herservice in promoting organ andtissue donation.For more information seewww.givelife.info or E-mail:Fiona.Wilkinson@boltonh-tr.nwest.nhs.ukAn organ donation stand willappear at the Glastonbury Festivalfor the first time ever, this year (27 -29 June). Becky Smith, DonorLiaison Sister at Hull Royal Infirmaryand Christian Brailsford, DonorLiaison Nurse at Northern GeneralHospital in Sheffield will hand outinformation about donation, talk tofestival goers and encourage themto join the NHS Organ DonorRegister.The poster for the Givelife campaign features ZoëGreenhalgh who died last year.Becky says, “Glastonbury is thebiggest event of its kind and Ithought this would be a greatopportunity to talk to 18 - 35 yearolds who may miss out on otherorgan donation promotions.Traditionally, the festival has a verytolerant, community-mindedaudience so we hope people will beinterested in what we’ve got to sayand think carefully about becomingdonors.”Colleagues from Bristol will joinBecky and Christian. UK Transplantis funding the stand, providingsupport and much-needed showerfacilities on the way home!In Belfast, the transplantco-ordinator team has set up arolling education programme forstaff in the ICU so that everymember of staff attends a study dayon organ donation.At the end of the day a short quiz iscarried out to see how much staffhave learned and, so far, theevaluations from the training havebeen excellent.In addition, a living donortransplant assessmentclinic has been set up twicemonthly. Referrals comefrom consultants, potentialdonors and renal nurseswho have been asked tomake enquiries on behalf ofpotential donors.Heather Savage, the newlyappointed living donortransplant co-ordinator, said:“The clinics appear to be asuccessful initiative and arespeeding the process up. Wealso held our firstinformation evening and thistoo appeared to besuccessful in bringingforward potential live donors.”The Belfast team is also planning tomake an educational video onapproaching the family. They plan touse a local drama group acting outreal life scenarios.For more information contactAndrea McCook, transplantco-ordinator, tel: 028 9026 3846.Organ Donor Line 0845 60 60 400www.uktransplant.org.uk20Bulletin Summer 2003

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