taking organ transplantation to 2020 · the uk organ donor rate and suggested that, if all the...

Taking Organ Transplantation to 2020A detailed strategy

26992_NHSBT_Organ Donor Strategy_LONG_AW_v11.indd 1 04/07/2013 12:03

A collaborative UK strategy between

Acknowledgements

We are grateful to all those who contributed to the development of this strategy.

Our particular thanks go to the following groups and individuals, for their advice and support.

Within the UK

• BritishTransplantationSociety

• CollegeofEmergencyMedicine

• DonorFamilyNetwork

• FacultyofIntensiveCareMedicine

• IntensiveCareSociety

• LiveLifeThenGiveLife

• NationalBlack,AsianandMinorityEthnicTransplantAlliance

• NationalKidneyFederation

• Transplant2013

• UKDonationEthicsCommittee

www.nhsbt.nhs.uk/to2020

International

• PJGeraghty,DonorNetworkofArizona(USA)

• BernadetteHaase-Kromwijk,directorDutchTransplantFoundation(TheNetherlands)

• LoriMarkham,MidwestTransplantNetwork(USA)

• KevinO’Connor,LifeCenterNorthwest(USA)

• AxelRahmel,EurotransplantInternationalFoundation(TheNetherlands)


Contents

Contents

04 Foreword

05 Section One Summary

09 Section Two Background

12 Section Three The detailed strategy

13 3.1 Increasingthenumberofpotentialdonors

15 3.2 Improvingdonorconversionrates

19 3.3 Makingthemostofdonororgans

20 3.4 Increasingretrievalandtransplantationoforgans

23 3.5 Resuscitationofretrievedorgans

23 3.6 Improvingsurvivaloftransplantrecipients

25 3.7 Systemstosupportorgandonationandtransplantation

29 Section Four Measuring success

Taking Organ Transplantation to 2020:Adetailedstrategy03


It is five years since the Organ Donation Taskforce published ‘Organs for Transplants’1, which set out a series of recommendations for increasing the UK organ donor rate and suggested that, if all the recommendations were implemented, then the deceased donor rates would increase by 50% by 2013.

TheTaskforcereportintroducedamajorprogrammeofworktomakesurethattherightsystemsandsupportwereinplacetoenableorgandonationtobecomeamoreusualpartofend-of-lifecare.Wewouldliketothankthedonorfamilies,theNHS,andtheprofessionalorganisationsforrisingtotheTaskforce’schallenge.Theirsupportandcommitmenthasledtodramaticimprovements:byApril2013,therehasbeena50%increaseinthenumberofdeceaseddonorsanda30.5%increaseintransplants.

However,thereisstillmorewecando.Currentlythereareover7,000peopleontheUKnationaltransplantwaitinglistand,duringthelastfinancialyear,over1,300peoplepeopleeitherdiedwhilstonthewaitinglistorbecametoosicktoreceiveatransplant.Itisthereforevitalthatwecontinuetobuildonthecurrentsuccessandcontinuetomakemoreprogress.

InimplementingtheTaskforcereportwelearnedmuchaboutwhatworkswellandwheretheobstaclesremain.Wehavealsospentthelastyeartalkingtoourstakeholdersaboutwhatmoreshouldbedonetoincreasethetransplantrate.Wewouldliketothankthehundredsofpeoplewhoprovidedtheirviewsonwhatstepsshouldbetaken.

Wehavebuiltontheirknowledgeandadvicetodevelopanewstrategy,whichaimstoenabletheUKtomatchworld-classperformanceinorgandonationandtransplantation.

Foreword

Foreword

1 OrgansforTransplants:areportfromtheOrganDonationTaskforce.

04 Taking Organ Transplantation to 2020:Adetailedstrategy

Mark Drakeford MinisterforHealthandSocialServices

Edwin Poots MinisteroftheDepartmentofHealth,SocialServicesandPublicSafety

Michael Matheson MinisterforPublicHealth

Jeremy Hunt SecretaryofStateforHealth

John Pattullo ChairofNHSBloodandTransplant


Section one

Summary

Five years of progressThe Organ Donation Taskforce published its report Organs for Transplant in January 2008, and made 14 specific recommendations that covered various aspects of donor identification and referral, donor coordination and organ retrieval. The five-year implementation programme for these recommendations, supported by all four health administrations, NHSBT and representatives of all relevant professional societies and Royal Colleges, has established a coherent UK-wide framework for deceased donation, and delivered the 50% increase in deceased organ donors called for when the Taskforce published its report. This achievement is a tribute to the commitment of healthcare professionals involved in the donation and transplantation pathway, but particularly to organ donors and their families.

ThesecombinedeffortshaveledtomajorchangesintheinfrastructurefororgandonationintheUK,mostnotablythe250-strongcentrallyemployedworkforceoftrainedSpecialistNursesinOrganDonation(SN-ODs),aUK-widenetworkofClinicalLeadsinOrganDonation(CLODs),andaNationalOrganRetrievalService.TheUKDonationEthicsCommitteeprovidesguidancetocliniciansonethicalconcernsregardingorgandonationandthefourUKHealthDepartmentshaveclarifiedlegalissuesregardingdonation.TwelveRegionalCollaborativeshavebeenestablished,whichbringtogetherintensivecareconsultants,SN-ODs,chairsofDonationCommittees,retrievalsurgeonsandrecipientco-ordinatorstoshareinnovativebestpracticeandworkouthowtoovercomelocalobstacles.TheworktodeliverchangewithintheNHSisalsosupportedbymanyinthevoluntarysectorandbyfaithleaderswhohavecommittedthemselvestoraisingawarenessandpromotingorgandonationandtransplantationinthecommunity.

Thesechanges,togetherwithotherinitiativessuchastheNHSBTlivingkidneydonorstrategy,havefurtherincreasedthetransplantrate.

However,despitetheseimprovements,therearestillnotenoughdonatedorganstomeetthecurrentneed.Therearecurrentlyover7,000peopleonthetransplantwaitinglistand,duringthelastfinancialyear,over1,300peopleeitherdiedorbecametoosicktoreceiveatransplantduetoashortageofavailableorgans.Withthechangingpopulationdemographics,itisexpectedthattheneedfortransplantswillincrease.

SummaryTaking Organ Transplantation to 2020:Adetailedstrategy05


Theincreaseinthenumberofdonorssince2008isalmostentirelyduetoexpansionofdonationaftercirculatorydeath(DCD)programmes,notanimprovementonfamilyconsentrates.Indeed,theUKcontinuestohaveoneofthehighestratesoffamilyrefusalintheWesternworld,with43%offamiliesdecliningpermissionfordonation.

It must be clearly understood: the UK will never have a world-class donation and transplantation service if more than 4 out of every 10 families say no to donation.

Thisisachallengeforthewholeofsociety,andrepresentsourgreatestopportunitytofurtherincreasedonorrates.

A new strategy for the UK

NHSBTco-ordinatedandoversawacomprehensivestakeholderengagementexercisetoseekadviceonwherethechallengesremainedandhowtobuildonthecurrentlevelsofsuccess.Aseriesofmeetingsandanonlinesurveyofferednationalandinternationalexpertsinthefieldoforgandonationandtransplantation,donorfamilies,transplantrecipients,thoseonthetransplantlist,religiousandcommunityleadersandthegeneralpublictheopportunitytogivetheirviewsonwhatmoreneedstobedonetoincreasetheUK’sratesofsolidorgantransplantation.

Thefeedbackfromstakeholdershighlightedtheremainingchallenges:

• TheshiftinmakingorgandonationausualpartofNHSculturehasnotbeenmirroredinsocietyasawhole,where43%offamiliesrefusetoallowdonationtogoahead,sometimesevenoverturningtherecordedwishesoftheirlovedone.AlthoughthisisparticularlyrelevantforpeoplefromBlack,AsianandMinorityEthnic(BAME)populations,whorepresent27%ofthoseonthewaitinglistbutonly5%oforgandonors,thisappliestothewholeofsociety.ThebiggestchallengeintheUKistoincreasethenumberofpeoplefromallpartsofsocietywhoconsent2toorgandonation,eitherforthemselvesoronbehalfofalovedone.

• Significantimprovementshavebeenmadetoend-of-lifecarepracticestoensurethatapatient’swishtodonateismet.However,opportunitiesfordonationarestillmissedonsomeoccasions.

• Thereisvariationinpracticewithinthemedicalcommunityregardingtheacceptanceandtransplantationoforgans.

TheOrganDonationTaskforceReportsetoutaseriesofrecommendationsthattogetherprovidedtheNHSwiththenecessaryinfrastructuretosupportorgandonationacrosstheUK.However,asoutlinedabove,therearestillchallengestobeovercome.ThisstrategybuildsonthesuccessoftheTaskforcewhich–ifitsaimsareachieved–willenabletheUKtomatchworld-classperformanceinorgandonationandtransplantation.

TheTaskforcerecognisedthatimprovementsindonationandtransplantationwereessentiallydependentuponchangingbehaviours.Thisnewstrategyre-affirmsthisview,andpresentsacalltoactiondirectedtowardsthefourkeygroupslistedbelow.Shouldanyofthesegroupsfailtorespond,thenthisstrategywillnotbefullyachieved.

Call to action

Who Outcome

Society and individuals

Attitudestoorgandonationwillchangeandpeoplewillbeproudtodonate,whenandiftheycan.

NHS hospitals and staff (donation)

Excellentcareinsupportoforgandonationwillberoutinelyavailableandeveryeffortmadetoensurethateachdonorcangiveasmanyorgansaspossible.

NHS hospitals and staff (transplantation)

Moreorganswillbeusableandsurgeonswillbebettersupportedtotransplantorganssafelyintothemostappropriaterecipient.

NHSBT and commissioners

Bettersupportsystemsandprocesseswillbeinplacetoenablemoredonationsandtransplantoperationstohappen.

Summary06 Taking Organ Transplantation to 2020:Adetailedstrategy

2 TheHumanTissueAct2004providesthelegalframeworkfororgandonationinEngland,WalesandNorthernIreland,andusestheterm‘consent’.TheHumanTissue(Scotland)Act2006coverspracticeinScotlandandusestheterm‘authorisation’.


3Thesemeasureswillbekeptunderregularreview,astheywillbesubjecttochangeasimprovedtechnologiesandtechniquesfororganpreservationbecomeavailable.

Summary

The strategy ThenewstrategyhasbeendevelopedbyNHSBTandthefourUKHealthDepartments.OrgandonationandtransplantationisdeliveredonacollaborativebasisacrosstheUKandorgansdonatedbydeceasedindividualsareconsideredaUK-wideresource.ThisensuresthemostappropriateuseofdonatedorgansandthatorgansandexpertisearesharedthroughouttheUK.AlthoughallUKGovernmentswillcontinuetotakeindividualapproachestoaspectsofpolicyandimplementationinspecificareas,strongcollaborationwillincreasethebenefitsforbothdonorsandrecipients.

A collaborative approach to organ donation and transplantation

ThisstrategybuildsontherecommendationsoftheOrganDonationTaskforce.Itisastrategyforthewholeofsociety–forthosewhoworkintheNHS,forrecipients,fordonorsandtheirfamilies.Itseekstoincreasethepoolofpeoplewhocananddodonatetheirorgansafterdeath.ItwillstrivetoensurethatclinicalpracticethroughouttheNHSmakesorgandonationhappenforeverypotentialdonorwheredonationisappropriate.Itwillseektoensurethatwhenconsenthasbeengivendonationwillhappenandthatallsuitableorgansaretransplantedandsurviveaslongaspossible–deliveringthegreatestbenefitforthegreatestnumberofpatients.

Butsocietymustalsoplayitspart.InsupportoftheNHS’sefforts,peopleneedtoacceptorgandonationasthenormalandexpectedthingtodo,bothforthemselvesandtheirlovedones.Workwillcontinuewithallmembersofsociety,includingpeoplefromthoseBlack,AsianandMinorityEthniccommunities(BAME)wheretheneedforkidneytransplantsishighandorgandonationisnotpartofcultureortradition.

Measure Aim Current level

Consent/authorisation for organ donation

Aimforconsent/authorisationrateinexcessof80%*

57%

Deceased organ donation

Aimfor26deceaseddonorspermillionpopulation(pmp)

19.1pmp

Organ utilisation3 Aimtotransplant5%moreoftheorgansofferedfromconsented,actualdonors

Aimfor:

•85%ofabdominalorgansfromDBDdonorstobetransplanted

•35%ofheartsandlungsfromDBDdonorstobetransplanted

•65%ofabdominalorgansfromDCDdonorstobetransplanted

•12%oflungsfromDCDdonorstobetransplanted

80%

30%

60%

7%

Patients transplanted

Aimforadeceaseddonortransplantrateof74pmp

49pmp

*FiguresforWalesshouldbemeasuredseparatelyaftertheimplementationoftheplannedWalesHumanTransplantationBillin2015.



Next steps

Theactionstosupporttheaboveprioritiesareoutlinedinthisstrategy.Theyarenoteasilyachievable.Allthosewitharoleinorgandonationandtransplantationneedtocontinuetoworktogether.PoliticiansandcivilservantswillneedtoensurethattheNHSsupportsorgandonationandtransplantationwhereverandwheneverpossible.Finally,andmostimportantly,societyasawholemustrecognisethatwithoutdonationtherecanbenotransplantation.Unlessindividualsandtheirfamiliesagreetodonation,transplantratescannotimprove.

ThefourUKHealthDepartmentswillworkinpartnershipwithNHSBloodandTransplant(NHSBT)andtherelevantprofessionalbodies,charities,commissionersandregulatorstodevelopaseriesofoperationalplans,whichwillprovidethedetailforeachaction.Namely:

• Whoshouldberesponsibleforimplementation

• Howthestrategywillbedelivered

• Whatresourcerequirements(funding,skillsandpeople)areneeded

• Howcurrentresourcescouldbebetterdeployed

• Whentheworkwillbecompleted.

ItisanticipatedthatworktoimplementthestrategywillcommenceinSeptember2013.

Initially,noadditionalfundingislikelytobeneededtomoveforward:muchofwhatneedstobedoneisaboutworkingdifferentlyratherthanincreasingresources.However,lookingahead,therearetechnologicaldevelopments,pilotinitiativesandotherprogrammeswhicharecapableofbringingimprovementsbutwhichwillrequireadditionalresource.Anactionplantogetherwiththefundingofsuchdevelopmentswillrequireseparateconsideration.Detailed,costedimplementationplansforallsuchchangeswillbeproducedandfundingsoughtfromthefourUKHealthDepartments.Thiswillincludeplansforanambitiouspublicitycampaignthatwillchangepublicattitudesandbehaviours,withsimilaroutcomestothoseintheareasofdrink/drivingandsmokingcessation.

Summary08 Taking Organ Transplantation to 2020:Adetailedstrategy


Background

Section two

Background

The Organ Donation Taskforce highlighted three areas as barriers to organ donation: donor identification and referral; donor co-ordination; and organ retrieval arrangements. Since the Taskforce report was published in January 2008, the UK’s approach to organ donation has been radically transformed – more donors are being identified and referred, donations are now co-ordinated by a centrally employed team of specialist nurses and organ retrieval is supported by a dedicated national organ retrieval service that is commissioned by NHSBT.

Asaresult,thenumberofpeopledonatingtheirorgansafterdeathincreasedby50%between2007/08and2012/13,astheTaskforcehoped.Consequentlyin2012/13,transplantrateshadincreasedby30.5%andmorepeopleintheUKreceivedanorgantransplantthaneverbefore.

However,moredonororgansareneeded.Thereremainover7,000peopleontheUKNationalTransplantWaitingListandtheUKstilllagsbehindmanyotherWesterncountries(seefiguresbelow),bothintermsofdeceaseddonornumbersandalsosometypesoftransplants,notablyheartandlungtransplantation.

Deceased donors, transplants and transplant waiting list

770 751 764 793 809 899 959 1010 1088 1212

23962241 2196

2385 23812552 2645 2695

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2003-04 2004-05 2005-06 2006-07 2007-08 2008-09 2009-10 2010-11 2011-12 2012-13

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Donors

Transplants

Transplant list



10 Taking Organ Transplantation to 2020:AdetailedstrategyBackground

Total deceased donor transplant rates for Europe and the USA, 2011(Transplantspermillionpopulation)

Thenumberofpotentialdonorsisalsodeclining.Peoplearelivinglongerandfeweraredyinginhospitalsincircumstanceswheretheycanbeorgandonors.IntheUKeveryyeararound1,200peopledieafterdeathhasbeendiagnosedonneurologicalcriteriawithafurther3,000peopledyingafterthewithdrawaloftreatmentincircumstanceswheredonationispossible.TheUK’spoolofpotentialbrain-stemdeaddonors–donorswhocandonatehearts–isverysmallcomparedwithsomeothercountries.Forexample,intheUK58%ofalldonationoccursfollowingcertificationofdeathusingneurologicalcriteria(referredtoasdonationafterbrain-stemdeath–DBD).Theremainingdonations(42%)occurfollowingcardiacarrest(referredtoasdonationaftercirculatorydeath–DCD).Unlesstherearesignificantchangestoend-of-lifecareintheUKthispictureisunlikelytochange.

IftheUKistoimprovetheavailabilityoforgansfortransplantation,thentransformingpeople’swillingnesstodonateorgansaftertheydiewillbecritical.Justover30%ofthepopulation–nearly20millionpeople–haverecordedtheirconsentfororgandonationontheNHSOrganDonorRegister(ODR)andalthoughmostfamilieswillsupporttheirrelative’swish,in2012/13115familiesoverruledtheirrelative’sconsent.4Evenworse,whenthewishesoftheindividualarenotknown,nearly50%offamiliessayno.ThisfigurecomparespoorlywithSpain,forexample,wherefewerthan20%offamiliesrefuse.

4DatafromNHSBTPotentialDonorAudit.

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75.3 73.9 71.5

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51.1 50.6 49.9 49.5 48.543.8 41.8

38.2 35.529.1 26.9

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Taking Organ Transplantation to 2020:Adetailedstrategy11Background

Family refusal rates, 2011(%)

Itmustbestressedthat,whilesolidorgantransplantationisexpensive,itsavestheNHSmoneyandimprovesthelengthandqualityofrecipient’slives.Economicanalysis5demonstratesthatthetransplantprogrammedeliveredanannualcostsavingtotheNHSof£316millionandthatsuchsavingshavethepotentialtoincreasefurtherasthenumberoftransplantproceduresrise.

5WestMidlandsSpecialisedCommissioningTeam:Organs for Transplants: An analysis of the current costs of the NHS transplant programme; the cost of alternative medical treatments, and the impact of increasing organ donation,October2010.

52.4

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28.7 28.3

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10.2 9.3

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UK Lithuania Italy Romania Norway Spain Slovakia Poland Hungary

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Section three

The detailed strategy

The new strategy, Taking Organ Transplantation to 2020, has been published as two documents. The first document, A UK Strategy, provides a very high-level explanation of what the UK should aim for in organ donation and transplantation. This document, Detailed Strategy, provides a more in-depth rationale for the strategy.

Thisdocumentisfocussedonaprimarilyclinicalaudience.Ratherthanfolloweachoftheoutcomesofthestrategy,itisdraftedtofollowtheclinicalcarepathwayandcovers:

• Increasingthenumberofpotentialdonors

• Improvingdonorconversionrates

• Makingthemostofdonororgans

• Increasingretrievalandtransplantationoforgans

• Resuscitationofretrievedorgans

• Improvingsurvivaloftransplantpatients

• Systemstosupportorgandonationandtransplantation.

Indoingso,itprovidesmoredetailregardingtheactionsthatneedtobetakenandthesupportinganalysisandrationale.Itisfocusedonaprimarilyclinicalaudience.

Thedetailedstrategy



3.1 Increasing the number of potential donors

Donation as part of end-of-life care

TheOrganDonationTaskforcewasclearthateverypersonintheUKshouldexpecttobeconsideredasapotentialdonoraspartofhisorherend-of-lifecarewheneveritismedicallypossible.TheGeneralMedicalCouncilhasclearlydefinedtheresponsibilitiesofdoctorsinthisregard.6Whiletherearemanycircumstancesinwhichdonationisnotpossible,thereisgoodreasontobelievethatthenumberofpeopleintheUKwhomightbeconsideredaspotentialdonorswhentheydie–thepotentialdonorpool–couldbeexpanded.Suchopportunitiesfallintotwobroadgroups,definedbythewayinwhichdeathoccurs:eitherfollowingadiagnosisofbrain-stemdeath(wheretheheartisstillbeating)orfollowingirreversiblelossofthecirculation.

End-of-life care practices and the potential of donation after brain-stem death (DBD)

Worldwide,deceaseddonationoccursmostcommonlyafterdeaththatisdiagnosedusingneurologicalcriteria(i.e.afterbrain-stemdeath).OneofthestrikingfeaturesofUKdeceaseddonationistherelativelylowrateofbrain-stemdeath.Thisisbelievedtobeadirectresultofclinicaldecisionstolimitorwithdrawtreatmentstopatientswithnon-survivablebraininjurybeforebrain-stemdeathhasevolvedorcanbediagnosed.Italsoremainsthecasethataroundaquarterofallpatientswhofulfilthepre-conditionsforbrain-stemdeathtestingdonothavesuchtestscarriedout.Inotherwords,end-of-lifecarepracticesintheUKappeartolimitthepotentialfordonationafterbrain-stemdeath.

Thereisapressingneedtoreviewtowhatextentthesepracticesmightbemodifiedsoastopromotedonationafterbrain-stemdeath,particularlyincircumstanceswhereindividualshavestatedtheirwishtodonateorgansafterdeath.

Actions to increase the potential for donation after brain-stem death

Specific Action Responsibility

End-of-lifecarestandardsshouldpromotebrain-stemdeathtestingasthepreferredmethodofdiagnosingdeath,wherethiscanbeachievedandisinthebestinterestsofthepatient.

Professionalbodies,nationallegalandethicsorganisations

End-of-lifecarepracticesshouldbereviewedtoestablishwhethertheymightbeadjustedsoastopromotedonationafterbrain-stemdeath.

Professionalbodiesnationallegalandethicalbodies

Publishhospitaldatatoincludebrain-stemdeathtestingrates. NHSBT

SupportRegionalCollaborativestoleadlocalimprovementinorgandonation. NHSBT,NHS

Developtrainingprogrammestosustainandincreaseclinicians’organdonationunderstandingandexpertise.

NHSBT,professionalbodies

Explorehowarequirementtoconfirmbrain-stemdeathwhereverpossiblemightbeincorporatedintorelevantprofessionalstandardsofpractice.

Professionalbodies,NHSBT

6GeneralMedicalCouncilguidance‘End-of-life Care: Organ Donation’. Availableat: www.gmc-uk.org/guidance/ethical_guidance/end_of_life_organ_donation.asp

Increasingthenumberofpotentialdonors


14 Taking Organ Transplantation to 2020:AdetailedstrategyIncreasingthenumberofpotentialdonors

Promoting donation after circulatory death

Whiledonationafterbrain-stemdeathisthemainstayofmanydeceaseddonationandtransplantationprogrammesworldwide,confirmedbrain-stemdeathisuncommonandaccountsforlessthan0.5%ofalldeathsintheUK.However,itisalsopossibletoretrievetransplantableorganswhendeathfollowscardiacarrest.Thisisreferredtoasdonationaftercirculatorydeath(DCD).ThewaysinwhichorganretrievalcantakeplacefollowingcirculatorydeatharedescribedintheMaastrichtClassification.

Maastricht Category Description

I/ II Organretrievalafteranunexpectedcardiacarrestfromapatientwhocannotorshouldnotberesuscitated.SometimesreferredtoasuncontrolledDCD.

III Organretrievalafterananticipatedcardiacarrestthatfollowstheplannedwithdrawaloftreatmentsthatareconsideredtobeofnooverallbenefittoapatientwhoiscriticallyill.SometimesreferredtoascontrolledDCD.

Maastricht III DCD

IncontrasttoDBD,theUKhascomparativelyhighratesofCategoryIIIDCD,possiblybecauseahighproportionofdeathsinUKintensivecareunitsfollowdecisionstolimitorwithdrawtreatmentsthatareofnooverallbenefittoagravelyillindividual.However,assessingadyingpatient’ssuitabilityforCategoryIIIDCDisnotalwaysstraightforward,particularlyinolderpatientsand/orthosewithcomplexmedicalhistories,andthiscanimposetimedelaysthatarenotalwaysacceptabletothepatient’sfamilyorthestaffcaringforthem.Asaconsequence,notallofthesepossibledonorsareidentifiedandreferred,andthereiswidespreadagreementthatthiswouldbepromotedbystreamliningthecurrentreferral,assessmentandofferingprocessesandbyimprovingawarenessofthepossibilityoforganretrievalfromthisgroupofpatients.

Actions to promote the identification and referral of more Maastricht Category III DCD donors:


Publishhospitaldatatoincludevariationindonorreferralrates.ThiswillincludethepublicationofvariationinreferralofpotentialDCDdonorsonahospital,regionalandnationalbasis

NHSBT

Establishanationalreferralservicetoimprovesupporttohospitalsandproviderapidtriageofpotentialdonors.ThismayincludeaservicetotriagepotentialCategoryIIIDCDdonorsrapidly.

NHSBT

Developasystemofpeerreviewthatisunderpinnedbyasetofagreedstandardsforretrieval/transplantcentres.


Developtrainingprogrammestosustainandincreaseclinicians’organdonationunderstandingandexpertise.


Maastricht Category I/II DCD

Severalcountries,mostnotablySpain,TheNetherlandsandFrance,supportdonationfrompatientswhodieafterasuddenandunexpectedcardiacarrestfromwhichtheycannotberesuscitated.ThisisreferredtoasMaastrichtCategoryIDCDwhendeathoccursoutsideofhospitalandCategoryIIwhenithappensinahospital.Althoughthenumbersofsuchdonorsaresmall,theyneverthelessrepresentanimportantsourceofdonororgans,principallykidneys.ThisformofdonationhasnotbeensupportedintheUKforseveralyears,althoughaprogrammehasrecentlybeenstartedinEdinburgh.IftheexperienceinEdinburghisfavourableitislikelythatseveralothertransplantcentresintheUKwouldfollowitslead.

Actions to re-introduce Maastricht Category I/II across the UK:


ScopethepotentialforMaastrichtCategoryI/IIDCDintheUK,learningfromthepilotprogrammeinScotland.

NHSBT,NHS


Taking Organ Transplantation to 2020:Adetailedstrategy15Improvingdonorconversionrates

3.2 Improving donor conversion rates

Theconversionratioisthefractionofpotentialdonorswhobecomeactualdonors.ForDBD,familyrefusalratesarethemostimportantdeterminantofwhetherapotentialdonorbecomesanactualdonor,althoughadditionalfactorsexistforDCD.Keyoutcomesthatwouldincreasetheproportionofpotentialdonorswhobecomeactualdonorsare:

• Animprovementinfamilyconsentrates

• AreductionintheobjectionstoorgandonationfromCoronersandProcuratorsFiscal

• StreamliningandgreaterconsistencyofotherelementsofthepathwayforpotentialMaastrichtCategoryIIIDCDdonors,including:–referral,assessmentandacceptance–decisiontocallofforganretrieval(stand-down).

Improving family consent

TheUKhassomeofthehighestfamilyrefusalratesfororgandonationintheWesternworld.Furthermore,theincreasesindonationandtransplantationreportedfollowingthepublicationoftheTaskforcereportin2008areaconsequenceofasignificantexpansionofDCDprogrammes,notbecauseofanysignificantincreaseinfamilyconsent.Putplainly,theUKwillneverachieveitspotentialfordonationandtransplantationwhenover40%offamiliesrefusedonation,sometimesagainsttheknownwishesofthepatient.

Therearetwofundamentalandcomplementaryapproachestoimprovingfamilyconsentrates.Firstly,asasocietyweneedtogettoapointwherewebelieveittobenormalforfamiliestobeaskedforconsentandnormalthattheywillgiveit.Secondly,familiesmustbegiventhebestpossiblesupportwhenaskedtoconsiderdonationonbehalfofalovedone.

The single most important objective of this strategy is to increase consent. Sustained and urgent attention must be given to improving the numbers of people in the UK who consent to donation. This will only be achieved if all key players – politicians, policy makers, healthcare professionals, professional bodies and the public – respond to the challenge.

Actions to increase society’s support for organ donation

EveryoneintheUKmustunderstandthatwithoutdonationtherecanbenotransplantation.Publicawarenesswithoutactionwillnotincreasethenumbers.Donationshouldbeseenasaresponsibilityandafeatureofgoodcitizenship,regardlessofbackgroundorcommunity.Donationshouldbesomethingofwhichpeopleareproud.

AlthoughtherehasbeenlittleimprovementinfamilyrefusalrateselsewhereintheUK,consentratesfordonationafterbrain-stemdeathinScotlandhaveimprovedsubstantiallyinrecentyears.ItishardtoescapetheconclusionthatthisisduetothesuccessoftelevisionandmediacampaignstopromoteScottishsociety’sresponsibilitiestowardsdonation,supportedbyanactiveandcomprehensiveschoolseducationprogramme.

MuchemphasishasbeenplacedontheNHSOrganDonorRegister(ODR)asameansofimprovingconsentrates,anditiscertainlythecasethattheknowledgethatsomeoneinlifehasconsentedtoorauthorisedorganretrievalafterdeathhelpsmanyfamilies.However,therehasbeennooverallimprovementinconsentsincetheintroductionoftheODRin1994.

LessthanathirdofactualdeceaseddonorsareregisteredontheODRandasaresultitisprobablybestviewedasabarometerofsociety’ssupportfordonationandtheeffectivenessofinterventionstoengagethepublic,ratherthanadirectmeansbywhichfamilyrefusalratesmightbereduced.

2012/13 potential donor audit (PDA)* Organ donor register

Nation DBD consent/ authorisation rate (%)

DCD consent/ authorisation rate (%)

Overall consent/ authorisation rate (%)

% of population registered as at 31 March 2013

England 68% 52% 58% 30%

NorthernIreland

61% 45% 54% 30%

Scotland 78% 51% 60% 41%

Wales 65% 41% 50% 32%

UK 68% 51% 57% 31%

*basedonPDAdataasat9May2013.



Actions to increase society’s support for deceased donation


Developnationalstrategiestopromoteashiftinbehaviourandincreaseconsentandtestprogresswithregularpublicsurveys.

UKHealthDepartments,NHSBT

TherelevantGovernmentHealthDepartmentsshouldexplorewithEducationDepartmentsthepossibilityofincorporatingdonationandtransplantationintoschoolscurricula.

UKHealthDepartments

AllGovernmentsshouldprovideregularreportstoParliament/AssemblyonprogressintheirnationandHealthMinistersshouldhaveadutytopromoteorgandonationandtransplantationeffectivelyleadingtoasignificantimprovementinpublicattitudesandconsentfororgandonation.

UKHealthDepartments

Thereshouldbenationaldebatestotestpublicattitudestoradicalactionstoincreasethenumberoforgandonors.Forexample,whetherthoseontheOrganDonorRegistershouldreceivehigherpriorityiftheyneedtobeplacedontheTransplantWaitingList.

NHSBT,UKGovernment

EnsurethattheintroductionofasystemofdeemedconsenttoorganandtissuedonationinWalesasdescribedbytheHumanTransplantation(Wales)Billisassuccessfulaspossibleandlearnfromthisexperience.

WelshGovernment,NHSWales,NHSBT

DevelopacommunityvolunteerschemetosupportTrust/HealthBoarddonationcommitteestopromotethebenefitsofdonationinlocalcommunities’,particularlyamongstgroupswithlittletraditionoforgandonation.

NHSBT,voluntarysector

IncreaseBlack,AsianandMinorityEthniccommunities’awarenessfortheneedofdonation,tobenefittheirowncommunitiesandprovidebettersupportforpeopleinthesecommunitiestodonate.

NHSBT,voluntarysector,professionalbodies,UKHealthDepartments

Improvingdonorconversionrates

Severalgroups,includingtheBritishMedicalAssociation,havelongadvocatedtheadoptionofan‘opt-out’systemofconsentfororgandonation.TheWelshGovernmentisthefirstUKcountrytointroducelegislationtobringinasoftopt-outsystemforconsenttoorgandonation.Underthenewarrangements,peopleinWaleswillhavethechoiceofeitherregisteringawishtobeadonor(optingin)ornottobeadonor(optingout).Thosewhodoneitherwillbedeemedtohavegiventheirconsenttodonation.Thenewsystemwillbeprecededbyatwo-yearcommunicationscampaigntopromotethenewlawandchoicesavailabletopeoplelivinginWales.NHSBTiscommittedtoensuringtheoperationalchangesresultingfromthenewWelshlegislationareintroducedsafelyandeffectively.

Inaddition,theDepartmentforHealth,SocialServicesandPublicSafetyinNorthernIrelandisconsultingonattitudestowardsorgandonation,includingtheintroductionofanopt-outsystemfororgandonation.

TheotherUKcountrieswillwatchthesechangeswithinteresttoseetheimpactontheconsentanddonationrates.NHSBTrecognisesitsvariousresponsibilitiesinsupportinglegislativechangeinWales,andotherpartsoftheUK,andiscommittedtofulfillingthem.



Actions to improve the support for families of potential donors


Developaworkforcestrategyfortheorgandonationservicewhichwilltailortheservicetotheneedsofindividualhospitalsandseektoprovideaworkforcethatisfocusedonsupportingthepotentiallyconflictingdemandsofprovidingaservicetothedonorfamily,donormanagementanddonorco-ordination.Thismaybeconfiguredinoneormorerolesastheneedsoftheservicedictate.

NHSBT,NHS

FollowingtheexperienceintheUSA,ensureeveryonewhohasmadeadecisiontodonateduringtheirlifehastheirwisheshonoured,iftheydieincircumstanceswheredonationispossible.

NHSBT,NHS

SubjecttovariationsinGovernmentpolicy,agreeaformalcontractfororgandonationwithhospitalsspecifyinghowhospitalsandtheNHSBTdonationserviceworktogethertoachieveexcellence.

NHSBT,NHS,UKHealthDepartments/Commissioners

Familiesofpotentialdonorswillonlybeapproachedbysomeonewhoisbothspecificallytrainedandcompetentintherole,andprovidetrainingpackagesandaccreditationtothosewhowishtodevelopthiscompetence.

Professionalbodies,NHS,NHSBT

PilotadditionalcommunitysupportinanumberofLondonhospitalstoaidSN-ODswhentheyapproachfamiliesfromthoseBlack,AsianandMinorityEthnic(BAME)communitieswheretherearelowlevelsofsupportfororgandonation,andifsuccessfulexpandtootherkeyhospitals.

NHSBT

Improving support for the families of potential donors

NHSBTdatademonstratesthatoverthelastthreetofouryears,consent/authorisationratesforDBDhavebeenfairlystaticatabout65%,whilethoseforDCDhavebeenstaticataround50%.FamilyrefusalratesintheUKareconsiderablyhigherthanthosereportedfrommanypartsofmainlandEurope,wheretheyareoftenlessthat20%.Theyarealsosubstantiallyhigherthanmightbeexpectedfromthereportedlevelsofpublicsupportfordonation.ItisparticularlyconcerningthatfamiliescontinuetoobjecttodonationeventhoughtheirlovedonehasgiveninlifeconsentforittohappenbyjoiningtheNHSOrganDonorRegister(ODR).

Thereisevidencethatthewayinwhichthepossibilityofdonationispresentedtoagrievingfamilycanhaveacriticalimpact–bothpositiveandnegative–uponthedecisionthattheymake.Familiesneedtobeapproachedattherighttime,intherightway,andbysomeonewiththerightskillstosupporttheirdecision-making.Fewcriticalcareclinicianshavespecifictrainingonhowtobringorgandonationintoanend-of-lifecarediscussion,andorgandonationwillalwaysbearelativelyinfrequentactivityforthemajorityofcriticalcareclinicians.However,itisacoreactivityoftheteamsofSpecialistNursesforOrganDonation(SN-ODs)whoco-ordinatedonationintheUK.

Internationalevidencewouldsuggestthatco-ordinator-ledapproachesachievehigherconsentrates,andthePotentialDonorAuditdemonstrateshigherfamilyconsent/authorisationrateswhenSN-ODsareinvolvedatanearlystage.TheNationalInstituteforHealthandClinicalExcellence(NICE)hasmadeaclearrecommendationthatasastandardofcare,SN-ODsshouldbeinvolvedasearlyasapossiblewhenapproachingthefamiliesofpotentialorgandonors.7WhilethisrecommendationfromNICEhasnoregulatoryforceinScotland,SN-ODsneedtobeabletoworkcloselywithhospitalteamsthroughouttheUKtoensurethatallfamiliesofpotentialdonorsaregiventhebestpossiblesupportwhendonationisbeingconsidered.

7NationalInstituteforHealthandClinicalExcellence(December2011).Organ donation for transplantation: improving donor identification and consent rates for deceased organ donation.Availablefrom:http://guidance.nice.org.uk/CG135




Reducing objections to organ donation from the Coroners and Procurators Fiscal

TherearemanyoccasionswhereapotentialdonordiesincircumstancesthatrequireinvolvementwiththepoliceandareferraltotheCoronerorProcuratorFiscal.Althoughpermissionfororgandonationisgrantedinthemajorityofcases,therearetimeswhenproceedingwithdonationmayimpedethepoliceandCoroner/ProcuratorFiscalintheirduties.Inthesecases,donationshouldnotproceed.

Despiteguidancebeingpublishedin2010,thereisstillvariationinpracticebetweenwhatcircumstancesshouldpreventdonationfromproceeding.Thisneedstobeaddressed.

Actions to reduce objections to organ donation from the Coroner and Procurator Fiscal


WorkcollaborativelytoreduceinstancesofobjectiontoorgandonationfromtheCoronerandProcuratorFiscalserviceandthepolice.

NHSBT,UKGovernments

Additional measures to increase the proportion of potential Maastricht Category III DCD donors who become actual donors

AlthoughMaastrichtCategoryIIIDCDmakessubstantialcontributionstoorgantransplantationintheUK,anumberoffactorslimititsoverallimpact,including:

• Thistypeofdonationrequiresthattreatmentwithdrawalcanonlytakeplaceafterinitialassessmentsfordonationhavebeenmade.Thiscantakemanyhours,particularlywhenthepatientisolderand/orhasacomplexmedicalhistory.Italsotakestimeforthesurgicalretrievalteamtoassembleandtraveltothedonorhospital.Familiesfrequentlycitethesedelaysandthestresscausedbythemasareasonfornotgivingtheirpermissionfordonationtoproceed.AsaresultfamilyconsentratesforMaastrichtCategoryIIIDCDintheUKareconsiderablylowerthanthoseforDBD.

• Therearevalidconcernsthatpotentiallytransplantableorganssufferexcessiveischaemicinjuryinthetimeintervalbetweentreatmentwithdrawalanddeath.Thiscanmeanthatevenwhenapatienthasbeenacceptedasadonorandfamilyconsentobtained,donationdoesnothappenbecausethetimeintervalbetweentreatmentwithdrawalanddeathistooprolonged.However,asnotedintheConsensusstatementonDCDpublishedin2010,thereisconsiderablevariationinhowlongretrievalteamswillwaitandthisunnecessarilyrestrictsthenumberofactualDCDdonationsthatoccur.

Actions to increase the conversion of potential Maastricht Category III DCD donors


ReductionintimedelaysexperiencedbythefamiliesofpotentialDCDdonorsthroughtheprovisionof:

1.Developaworkforcestrategyfortheorgandonationservice,whichwilltailortheservicetotheneedsofindividualhospitalsandseektoprovideaworkforcethatisfocusedonsupportingthepotentiallyconflictingdemandsofprovidingaservicetothedonorfamily,donormanagementanddonorco-ordination.Thismaybeconfiguredinoneormorerolesastheneedsoftheservicedictate.

2.AnationalreferralservicetotriageMaastrichtCategoryIIIDCDdonorsinamoretimelyfashion.

NHSBT

ContinueddevelopmentofMaastrichtCategoryIIIDCDretrievalandtransplantationprogrammestoimprovetheconsistencyindecision-making,includingdecisionstoacceptorrejectapotentialDCDdonor.Thiswillbeachievedby:

1.Providingguidanceonlevelsofacceptableriskinrelationtoofferedorgans,particularlyfromextendedcriteriadonors,relevanttotheindividualrecipient’sneedsandwishes.

2.Developmentofpeerreviewsystems,underpinnedbyasetofagreedstandardsforretrieval/transplantcentres.

NHSBT,professionalbodies,Commissioners



Taking Organ Transplantation to 2020:Adetailedstrategy19Makingthemostofdonororgans

3.3 Making the most of donor organs

Improving the function of donor organs prior to retrieval

Peopledonatetheirorgansinordertosaveandtransformthelivesofthosewhoreceivethem.Itisreasonabletoassumethatdonorswouldwishthebestpossiblegoodtocomefromtheirdonation,anditisvitalthereforethatasmanyorgansaspossibleareretrieved,andthattheyareretrievedinthebestpossiblecondition.

However,otherfactorsmustalsobeconsidered.Theneedforsuitableorgansmustbebalancedagainstthepossibleriskstotherecipient,suchastransplantinganorganthatdoesnotworkproperlyortransmittingaseriousdiseasefromthedonortotherecipient.Whileasignificantriskoftransmissionofaseriousdiseaseusuallycontra-indicatestheuseofanyorgan,itisanxietyoverthelikelyfunctionofanorganthatlargelyexplainswhyitisonlyinaminorityofcasesthatallthepossiblesolidorgansareused.Althoughthereareusuallyvalidclinicalreasonsforthis,internationalcomparisonssuggestthatthereisroomforimprovementinUKpractice.

Beforeacceptinganorgan,thetransplantationteammustbeconfidentthattherisksofimplantingaspecificorganintoaparticularpatientarelessthantherisksofhimorherremainingonthetransplantwaitinglist.Thisdecisioninturndependsupontheteam’sassessmentofthefunctionofthatorgan.Sometimes,actionsthatcouldhavebeentakentoimprovethefunctionofaretrievableorganarenottaken,andtheorganisdeclined.Onotheroccasions,organsthatweredeclinedonthegroundsof‘poor’functionshouldhavebeenacceptedandimplanted.

Improving the function of organs retrieved from DBD donors

Brain-stemdeathcanresultinsignificantphysiologicalinstabilityinthedonorandalthoughthisinstabilityisoftenreversible,suchchangesinterferewithorganassessmentandmayresultinorgansbeingunnecessarilyturneddown.Thesedifficultieshavethegreatestimpactonheartandlungretrievalbecauseitistheseorgansthatsuffermanyoftheadverseeffectsassociatedwithbrain-stemdeath,andtheirfailureaftergraftingwouldhavecatastrophicconsequencesfortherecipient.Itisnecessarythereforetocontinueoreventoescalatecriticalcareinthetimebetweenthediagnosisofbrain-stemdeathandorganretrieval,soastocorrectanyphysiologicaldamageordisturbancetopotentiallyretrievableorgans.Thisiscurrentlytheresponsibilityoftheclinicalteamcaringforthepatientinthedonorhospital.

Thereisclearandreadilyavailableguidanceonhowdonormanagementshouldbeundertaken,includingtheguidanceinNHSBT’s‘donorcarebundle’8(clinicalguidelinesfordonoroptimisation).However,thisguidanceisnotalwaysappliedaswellasitmightbe,largelybecauseitisanelementofcarethatfewICUcliniciansarerequiredtodeliverfrequently.Incontrast,cardiothoracicretrievalclinicianshavesuchexperienceandcompetence,butareonlyrarelyinvolvedinthecareofthebrain-stemdeaddonorwhilethedonorisontheICU.ThereisconsiderableevidencethatthenumberofheartsandlungsretrievedfromDBDdonorscouldbeincreasedif:

• ICUcliniciansinitiatethecoreelementsofdonoroptimisationquicklyandeffectively

• Cardiothoracicretrievalteamsbecomemorecloselyinvolvedinthecareoftheconsentedcardiothoracicdonorsbeforetheyaretransferredtotheoperatingtheatre.

Actions to increase organ retrieval from DBD donors


ThepromotionandsupportofearlyandeffectivephysiologicaloptimisationofthepotentialDBDdonorthroughadoptionofthe‘donorcarebundle’byhospitalICUstaff,andsupportthisprocessthroughauditandtraining.

NHSBT

Improvedonormanagementforpotentialcardiothoracicdonors,providinga24/7servicetoassistifpilotschemesproveeffective.Thiswillbepartofaconcertedefforttoincreasethenumberofthoracicorgansretrievedfrombrain-stemdonors,andwillincludeareviewofthedurationofdonorcare,inlightofevidencethatbettercareofthedonor’sphysiologicalhealthwillleadtotheretrievalofmorethoracicorgans,particularlyhearts.

NHSBT,NHS

8Availableat:www.odt.nhs.uk/donation/deceased-donation/donor-optimisation/resources/



Improving the quality of organs retrieved from Maastricht Category III DCD donors

InMaastrichtCategoryIIIdonors,organretrievalfollowsdeaththatisdiagnosedaftercardiacarrest.Thepotentiallytransplantableorgansmaysufferischaemicinjuryasthepatientdies,andforthisreasonitisessentialthateverylegitimateeffortismadetolimittheinjurytowhichtheretrievableorgansareexposed.Theoreticallyatleast,thismightbeachievedinvariousways:

• Whereminutescount,itisessentialthatallunnecessarydelaysinthedonationprocessbeavoided.

• Itispossiblethatsomedrugtreatments(e.g.heparin)mightlimitmicrovascularinjury.However,thesewouldneedtobeadministeredtothepotentialdonorbeforedeathandthisisprohibitedbycurrentUKguidance.

• Itispossiblethatdeteriorationmightbereversedafterdeathbyre-perfusingtheorganswithoxygenatedbloodbeforetheyareretrieved.

Actions to increase organ retrieval from DCD donors


Reviewwhatpre-morteminterventionscouldlegallyandethicallybeundertakentomaximisethepotentialfororgandonation(suchastheantemortemadministrationofheparin).

UKHealthDepartments,Nationalethicsorganisations,professionalbodies

EvaluateandeffectivelyimplementnewtechniquesandtechnologiesforthepreservationofretrievedorganswithaviewtotheiruseintheUK.


3.4 Increasing retrieval and transplantation of organs

Onceconsentfordonationhasbeengiven,organsareofferedtothetransplantunitsaccordingtothepublishedprotocols.9FromApril2013,offerswillbemadeelectronicallytospeeduptheofferingprocessandreducethepotentialforerrorintransmissionofessentialinformation.

Weknowthatopportunitiesfortransplantationarelostduringallstagesofthepathwayfromofferingtoimplantation.Inmostcases,thereareclearlydocumentedandvalidclinicalreasonsforthislossofopportunity(suchasabrain-stemdeathtestingthatcannotbedonebecausethepotentialdonorremainshaemodynamicallyunstable,orhasreceivedsedation,ortheorganmaybeunsuitablesuchasafattyliverthatwouldnotfunction).However,insomecases,reasonswhythesurgeondeclinessomeofferedorgansarenotclear.Thereissomevariationintheacceptanceratesofofferedorgansbothbetweenandwithinunits.Forexample,transplantunitshavedifferentcriteriaforacceptancebasedondonorcharacteristics(suchasdonorage).Inmostcases,thereasonsfordeclineareclearandappropriate(wheretherecipientisunwellforexample),butinothercasesthereasonsforthisvariationinacceptanceratesarenotfullyunderstood.Refusalofanofferleadstodelayandsocontributestothelikelihoodofpoorgraftfunctionorevennon-use.

Theretrievalteamisresponsibleforretrievingthoseorgansforwhichconsenthasbeengivenandforwhichasuitablerecipienthasbeenidentifiedor,whenappropriate,forclinicalresearch.Thereisvariationinthenumberoforgansretrievedfromeachdonor.Themediannumberoforgansretrievedfromadonorafterbraindeath(DBD)is3.9withameanof2.6organsbeingretrievedfromadonoraftercirculatorydeath(DCD)fortransplantpurposes.Itisalsoevidentthatsomeorgansthatareretrievedfromadonorarenottransplanted.Again,therearemanypotentialreasonswhynotallorgansareretrieved,includingperceivedpoorfunctionofthegraftiftransplantedordiseaseintheorganand,rarely,nosuitablerecipientintheUKorelsewhere.

9Availableat:www.odt.nhs.uk/transplantation/policies

Increasingretrievalandtransplantationoforgans



Reduce the rates of decline of organs where consent has been given

Organsmaybedeclinedbecauseofdonorororganfactors.Donorfactorsthatmayprecludeorgandonationincludebacterialorviralinfectionormalignancyinthedonorthatwouldbetransmittedtotherecipient,withahighprobabilitythattheinfectionorcancerwouldjeopardisetherecipient’ssurvivalfollowingtransplant.Guidanceonrisksassociatedwiththeacceptanceofdonorscomesfromavarietyofsources,includinginternationalbodies(suchastheCouncilofEurope),nationalbodies(suchastheAdvisoryCommitteeontheSafetyofBloodTissuesandOrgans{SaBTO})andprofessionalbodies(suchastheBritishTransplantationSociety{BTS}).However,nationalandinternationalguidelinesarenotalwaysconsistent.

Therecipienttransplantsurgeonmakesthefinaldecisiononthebasisoftheevidenceavailableandshouldensurethattherecipienthasgiveninformedconsent.Thesurgeonhastobalancetherisksofproceedingwiththetransplantagainsttherisksofdecliningtheoffer(whichincludestheriskofthepatient’sdeathwhileawaitinganotherofferedorgan).Asthenumberofmarginaldonorsincreases,surgeonsareworkingincreasinglyattheextremesofwhatisacceptableandwherethereislittleornoevidencebasedonwhichtomakeaninformeddecision.

Supporting the surgeon on understanding donor risk

Thereisvariationbothbetweenandwithincentresaboutthosedonorcharacteristicsthatmayprecludetransplantationforagivenrecipient.Inmanycases,thisvariationisaconsequenceofthelackofarobustevidencebase.Clinicians(transplantsurgeonsorphysicians)willusetheirjudgement,basedonthecurrentnationalandinternationalevidence,todrawupcriteriafornon-acceptance.Itshouldberecognisedthatthosecentresthathavefewerexclusionsdonotinvariablyacceptalltheextendedoffersandwideracceptancecriteriamaynotalwaysbeassociatedwithbetteroutcomes.

Actions to support the surgeon to take appropriate risk assessment


Provideguidanceonlevelsofacceptableriskinrelationtoofferedorgans,particularlyfromextendedcriteriadonors,relevanttotheindividualrecipient’sneedsandwishes.


Reducing risk-averse behaviour

OneofNHSBT’srolesistomonitoroutcomesaftertransplantation.Whenoutcomesfromacentrefalloutsideacceptedranges,NHSBT,workinginconjunctionwithexpertcliniciansandarepresentativewhoactsonbehalfofthecommissionersoftransplantservicesandtherelevantGovernmentHealthDepartmentwillinvestigatefurther.StudiesintheUSandelsewherehavesuggestedthattoomuchfocusonoutcomescanencouragerisk-aversebehaviourincliniciansandleadtoworseoutcomesforthepatient.

WhileitisacceptedthatNHSBT,inpartnershipwithCommissioners,willcontinuetomonitoroutcomestoensurequalityandsafety,cliniciansmustbesupportedtotakeappropriaterisks.Patientslistedforadeceaseddonorkidneytransplantatthosecentreswhichhaveahigherrateofdeclineofkidneysthatarethenusedelsewhere,havetendedtohavelongerwaitingtimes.Therearemanyvalidpotentialreasonsforthevariationinacceptancerates,includingtherisk/benefitbalancefortherecipientaswellastheexperienceoftheteam.

Improving utilisation of retrieved organs

Retrievalsurgeonswillremoveappropriateorgansdeemedsuitablefortransplantation.However,itisnotalwayspossibletotransplantretrievedorgans.In2012/13,approximately250kidneys,100livers,200pancreasesand50lungswereremovedbutnottransplanted.10Allretrievedheartsweretransplanted.Failuretouseretrievedorganscouldbeduetooneormoreofseveralfactors,including:

• Uncertaintythattheorganwillfunction

• Risk-aversebehaviour

• Damagetoorgansduringretrieval,transportation,preparationorimplantation

• Failuretoresuscitatetheretrievedorgan

• Recipient’sdecision.

Action to reduce risk-averse behaviour and improve utilisation


Publishcentre-specificrisk-adjustedpatientsurvivalfromlistingaswellasfromtransplantation.

NHSBT

Provideguidanceonlevelsofacceptableriskinrelationtoofferedorgans,particularlyfromextendedcriteriadonors,relevanttotheindividualrecipient’sneedsandwishes.


Ensurecliniciansareawareofandfollow,bestpracticetoincreasepatientandgraftsurvival.

Commissioners,NHSBT,professionalbodies

10Exactnumbers:272kidneys;212pancreas;107livers;43lungs.




Improving certainty about organ function

Whiletherearesomevalidatedmodelsthatcanbeusedtopredicttheorganfunction,thesemodelsarerelativelycrudeandsurgeons’confidenceinthemvaries.Donorandorgancharacteristicsthatareassociatedwithpooroutcomesarewelldescribedbutmuchstilldependsonthejudgementandexperienceofthesurgeon.Moreandclearerinformationwouldhelpthesurgeondecidehowbesttousedonatedorgans:forexample,whethertoimplantbothkidneysintothesamerecipientiffunctionislikelytobeinsufficientiftransplantedseparately,orwhethertosplitalivertoallowonedonatedorgantohelptworecipients.

Biomarkers11andhistological12characteristicsareofhelpbuttherearefewvalidandeasilyaccessiblebiomarkerscurrentlyavailableandhistologicalassessmentofretrievedorgansisnotreadilyaccessibletosurgeons.

Greaterunderstandingoftheprobabilityofthegraftfunctioningwillnotonlypreventinappropriateriskofharmtotherecipientbytransplantinganorganthatwillnotfunctionbutwillreducetheriskofsurgeonsinappropriatelydiscardinganorganthatmightwellfunction.Criteriathatwillhelpthedecisionwhetherornottograftanorganwillhelpreducetheinappropriatevariationindeclineratesamongstsurgeonsandsoleadtogreaterequityofaccess.Inmanycases,knowledgeofthehistopathologywillhelpthesurgeondecidewhethertouseakidney,transplantbothkidneysintoonerecipientoruseorsplitaliver.Arobust24/7histopathologyservicewithexperthistopathologistsupportwouldalsoallowaccurateidentificationofincidentaltumoursthatmayprecludetransplantation.

Action to improve certainty about organ function


Researchissupportedthatwillleadtobetterbiomarkersthatwillidentifyorgansthatareassociatedwithgoodorpoorfunctionandleadtonewpharmacologicalapproachestoimproveorganfunction.

NHSBT,UKHealthDepartments,professionalbodies

Investigatethefeasibilityandimplicationsfortheprovisionofa24/7provisionofexperthistopathologyadvice.

NHSBT,Commissioners,HealthAdministrations

Reviewthecurrentprocessesfordonorcharacterisation(especiallyformicrobiologyandtissuetyping).

NHSBT,Commissioners

Damage to organs during retrieval, storage, preparation and implantation

Asmallproportionoforgansaredamagedpriortoorduringtheretrieval,transport,andpreparationorimplantingprocesses.Insomecases,thedamageisaresultoftheillnessorincidentthatledtothedonor’sdeathortopoordonorperfusion.Theretrievalprocessiscomplexanditmustbedonespeedily(withinminutesfororgansfromDCDdonors).Inmostcases,whendamagedoesoccur,itisminorandcanbereadilycorrectedbysurgicaltechniques.However,veryrarelythisdamagecanresultinlossofanorgan.Everycasewheretherehasbeensurgicaldamagethatresultsinnon-useoftheorganorharmtotherecipientislistedasaSeriousAdverseEvent(SAE).ThesearereportedundertheEUOrganDonationDirective(EUODD),investigatedbyNHSBTandtheappropriatecorrectiveactiontaken.

Actions to reduce damage to donated organs


Developandimplementatrainingandaccreditationprogrammeforallretrievalsurgeonsandextendthistosupportingpost-mortemtechnologieswhentheseareintroduced.

NHSBT,Professionalbodies

11Anindicatorofabiologicalstate.12Themicroscopicanatomyofcellsandtissuesofplantsandanimals.




13TA165http://guidance.nice.org.uk/TA165/ReviewProposal14Survival after liver transplantation in the United Kingdom and Ireland compared with the United States.

DawwasMF,GimsonAE,LewseyJD,CopleyLP,vanderMeulenJH.GUT,2007Nov;56(11):1606-1315A comparison of disease severity and survival rates after liver transplantation on the United Kingdom, Canada and the United States.

StellDA,McAlisterVC,ThorburnD.LiverTransplant.2004Jul;10(7):898-902

3.5 Resuscitation of retrieved organs

Inthepastdecade,therehavebeenadvancesinthepreservationoforgansfollowingretrieval.Theseapproachesarebeingincreasinglyused,includingimprovementinthepreservationfluidandtechnologiestoimproveorganfunction.AnanalysisbyNICEin200913didnotformallyrecommendmachineperfusion.Sincethennewdatahasbeengeneratedandnewapproachesintroducedtoimproveorganfunction.Newerdevicesallowassessmentoforganfunctiontobemadebeforedecidingwhethertoimplant.

Actions to improve resuscitation of retrieved organs


EvaluatenewtechniquesandtechnologiesforthepreservationofretrievedorganswithaviewtotheiruseintheUK.


Lack of suitable recipient

Inaveryfewcases,thereisnosuitablerecipientintheUK(usuallybecauseofaninabilitytomatchrecipientsizeorbloodgroup)sotheorganisexportedtoanothercountry.Rarely,organshavebeendeemedtoohighriskforuseintheUKbutusedeffectivelyelsewhere.ItshouldbenotedthattheUKsharesunusedorganswithothercountriesandthereisafairbalanceofexchange.Nonetheless,itispreferablethattheorganisretrievedandusedintheUKtokeepthewaittimeshortandsomaintaingraftfunction.

Action to address lack of suitable recipient


Increasethenumberoforgansthatcanbetransplantedsafely.

NHSBT

3.6 Improving survival of transplant recipients

OutcomesaftertransplantationintheUKareasgoodasorbetterthaninotherEuropeanandNorthAmericancountries,whichreflectswellontheclinicalservicesintheUK.14,15Tenyearsafterdeceaseddonortransplant,over70%ofkidneytransplantrecipientsand60%oflivertransplantrecipientsarealivewithfunctioninggrafts.NHSBT,incollaborationwithpartners,alsomonitorsandreportsoutcomesbycentre.Anycentrewithunusualadverseoutcomesisinvestigatedandremedialactionidentifiedandimplemented.

However,intheUK,aselsewhere,bothgraftandpatientsurvivalmaybelimitedbyfactorsthatcouldinsomecasesbemitigated.Improvedoutcomesofretrievedorganswillnotonlyimprovethelengthandqualityoflifeofrecipientsbutwillalsoreducetheneedforre-graftsandsomakethoseorgansthataredonatedavailableformorerecipients.

Survivalaftertransplantationisimprovingbothinqualityandinquantity.However,despitedevelopmentsinsurgical,medical,anaestheticandmicrobiologicalpracticeandintroductionofnewdrugstoinduceandmaintainimmunosuppressionandpromotetoleranceinrecipients,survivalaftertransplantationislessthanthatexpectedinanotherwisehealthyindividual.Recipientdeathand/orgraftlossmaybeduetomanyfactors,includingimmune-destructionofthegraft,recurrentdiseaseandprematuredeathfromsomeinfections,somemalignanciesandcardiovasculardisease.Onceimplanted,graftsmayfailforoneormoreofseveralreasons.

Patientandgraftsurvivalmaybeincreasedbyseveralapproaches:

• Bettermatchingofdonorwithrecipient

• Reductioninprematuregraftfailurerates

• Reductioninprematuremortality.

Resuscitationofretrievedorgans;Improvingsurvivaloftransplantrecipients



Better matching of donor with recipient

Thereremainsongoingdiscussionamongstboththelaycommunityandhealthcareprofessionalsaboutthemostappropriateuseofthelimitednumberoforgansfromdeceaseddonors.Therationaleforbothselectionandallocationisbasedonacombinationofutility,benefitandneed.Therelativeimportanceofthesedifferentfactorswillvaryfordifferentorgans.NHSBThasdevelopedmodelstopredictoutcomesaftertransplantationforkidneyandforliver.Withchangingdonorandrecipientdemographics,betterimmunosuppressiveagentsandinterventions,allocationpoliciesneedregularreview.

Reduction in graft failure rates

Graftsmayfailforoneormoreofseveralreasons,includingtechnicalproblems,non-function,immune-mediatedmechanismsandrecurrenceofdisease.Reductioninratesofgraftfailurewillnotonlyimprovethelengthandqualityoflifefortherecipientbutalso,byreducingtheneedforare-graft,makedonatedorgansavailabletomorepeople.

Actions to improve matching of donor with recipient to reduce graft failure rates


Improvetransplantrecipientsurvivalbyimprovingunderstandingofthedonororgan/recipientcompatibility.


Reduction in premature mortality

TheUKmaintainsacomprehensiveregistryoftransplantrecipients.UseoftheregistrydatahasdrivenupstandardsandledtotheUK’spositionasaninternationalleader.Analysisoftheregistryprovideshugebenefitforpatients,professionalsandhealthcaremanagers.Potentialtransplantrecipientsaregiventherightinformationtomakeafullyinformedchoice,whiledonorfamiliescanbereassuredthatdonatedorganssaveorimproveasmanylivesaspossibleandclinicianscanensuregoodoutcomesandlearnfromexperience.

StudiesintheUKandelsewhereshowthatthelifeexpectancyoftransplantedpatientsarebetterthanifthepatienthadnotreceivedanorgantransplant.However,lifeexpectancyisstillshortenedincomparisonwiththegeneralpopulation.Causesofprematuredeathincludeanincreasedriskofsomeinfections,somecancers,cardiovasculareventsandrecurrent(orpersisting)disease.

Actions to reduce premature mortality


Ensurecliniciansareawareofandfollow,bestpracticetoincreasepatientandgraftsurvival.Thiscouldincludeappropriatemonitoringandtreatmentofcardiovascularriskfactorsandscreeningformalignancies,toincreasepatientandgraftsurvival.

Professionalbodies,Commissioners,NHSBT

Improvingsurvivaloftransplantrecipients



3.7 Systems to support organ donation and transplantation

TheUK’sorgandonationandtransplantsupportsystemsneedupdatingandimproving,sothereisgreaterclarityaboutwhatisexpectedandavailableandtheprocessworksmoresmoothly.

Itisanticipatedthatthedemandforintensivecareresourceswillincreaseduringthelifetimeofthestrategy,regardlessoftheexpectedincreaseindonation.Commissionersshouldkeepthedemandforintensivecarebedsunderreviewand,ifnecessary,takestepstoensurethatICUcapacityisnotabarriertodonation.Otheroptionsforresourcingthemanagementofdonorsmayneedtobeidentified,suchasgivinghospitalsflexibilitytoincreasestaffingtocareforadonor,includingananaesthetistonretrievalteamsorcreatingdedicateddonorcapacityinmajorcities.

Excellence in organ donation and transplantation

Improvementsneedtobemadethroughoutthetransplantpathwaysothatthedesiredoutcomescanbeachieved.TheIT,whichtheorgandonationandtransplantationprocessdependson,isoutofdateandmakingchangesistime-consuming,expensiveandrisksdestabilisingtheprocess.

Recentimprovementshaveincludedthedevelopmentofwebpagestomakeinformationmorereadilyavailabletohealthcareprofessionals,patientsandotherinterestedparties(www.odt.nhs.uk),andelectronicofferingthroughtheelectronicofferingsystem(EOSmobile).

NHSBTwillintroduceanationalofferingsystemforbowelsinmid-2013andforkidneysfromDCDdonorsfromlate2013.Themovetonationalallocationschemesforothersolidorgansisbeingdiscussedbycliniciansincollaborationwithprofessionalandlaygroups.

Actions to deliver excellence in organ donation


Optimisetheprocesses,timescales,resourcesandsupportingITateverystageofthepathwayfromdonoridentificationtolong-termsurvival.

NHSBT,NHSCommissioners

Reviewthecurrentprocessesfordonorcharacterisation(especiallyformicrobiologyandtissuetyping).

NHSBT,Commissioners

Developing the workforce

Aworkforceofupto251wholetimeequivalentSpecialistNursesinOrganDonation(SN-ODs)aretrainedtoprovidethedonorservicetoover300hospitalsacrosstheUK.TheSN-ODsspendover60%oftheirtimeinthehospitalstheysupport,coveringfourmainareasofwork:approachingfamiliesaboutdonation;managingandco-ordinatingthedonationandofferingprocess;hospitaldevelopment(supportingtheclinicalleadanddonationcommitteeinimprovinghospitalprocesses);andcarryingoutthepotentialdonoraudit.

However,thevisibilityoftheSN-ODsontheintensivecareunitsandinemergencydepartmentsistoolow:thelargenumberofcliniciansintheseunits,theirshiftpatterns,theclinicalprioritiesandtheprimacyoftheneedtospendtimewiththepatients,allmeanthattheabilityoftheSN-ODstoengagewiththecliniciansislimited.ThedonationprocessmaytakemanyhoursandtheSN-ODneedstobalancethesupportofthefamilywithmanagingandco-ordinatingaverycomplexdonationandofferingprocess.Thiscanbechallengingandleadtoconflictingdemands.

Currently,everyhospitalreceivesabroadlysimilarlevelofservice.However,hospitalneedsvaryconsiderablyanditiswidelyfeltthatthedonorservicewillbemoreeffectiveifitisbetteralignedtotheindividualneedsofthehospital.

TheNationalOrganDonationService,whichsupportsfamiliesandco-ordinatesorgandonation,willbeamendedtomeettheneedsofdifferenttypesofhospitalsandwillsupportdonorfamiliesseparatelyfromcaringforthedonor,whereappropriate.

Actions to develop the workforce


Developaworkforcestrategyfortheorgandonationservicewhichwilltailortheservicetotheneedsofindividualhospitalsandseektoprovideaworkforcethatisfocusedonsupportingthepotentiallyconflictingdemandsofprovidingaservicetothedonorfamily,donormanagementanddonorco-ordination.Thismaybeconfiguredinoneormorerolesastheneedsoftheservicedictate.

NHSBT,NHS

Systemstosupportorgandonationandtransplantation


26 Taking Organ Transplantation to 2020:AdetailedstrategySystemstosupportorgandonationandtransplantation

Developing Donation Committees and Regional Collaboratives

EachUKhospitalappointsitsownDonationCommitteeChair(sometimesthesearesharedbyseveralhospitals)anditsownClinicalLeadforOrganDonation(CLOD).NHSBTranaprofessionaldevelopmentprogrammeforChairsandClinicalLeadsandcontinuestoprovidetraininganddevelopmentthroughRegionalCollaborativemeetingsandannualrefreshertraining.ItisapparentthatDonationCommitteeChairsandCLODsstillhavedifferentexpectationsabouttheirrolesandtheexpectationsanddistinctionsneedtobemademuchclearerifthefullpotentialoftheserolesistobemet.

Overthelasttwoyears,NHSBThassupportedthedevelopmentoftwelveforumsacrosstheUK–knownasRegionalCollaboratives–whoseroleistosupportthelocalDonationCommitteesandorgandonationteams.TheseforumsbringtogetherClinicalLeads,SpecialistNursesinOrganDonation,andDonationCommitteeChairsandincreasinglyinvolvecliniciansfromtheretrievalserviceandlocaltransplantsurgeons.LedbytheRegionalClinicalLeadandRegionalManager,theCollaborativesreviewauditdata,sharelearning,providesupporttopeopleleadingchangeinhospitalsanddriveimprovement.

RegionalCollaborativeswillbethefocalpointfortranslatingmuchofthestrategyintoactionandwillincreasinglyinvolvecliniciansfromthetransplantservice,toenablethemtodeveloplocalsolutionstotheinterfacebetweendonationandtransplantation.Collaborativeswillbeprovidedwithidentifiedhospitaldatatohelpthemunderstandlocalandnationalvariationsinperformance.Someregionsarealreadymatchinginternationallevelsofdonationandbyreducingvariationmorecanbeachieved.Asafirststepallhospitalsshouldbeseekingtoimprovetothelevelthatthetop25%arealreadyachieving.

Action to support Regional Collaboratives


SupportRegionalCollaborativestoleadlocalimprovementinorgandonation,retrievalandtransplantpracticesandinlocalpromotionofdonationandtransplantation.

NHSBT,Commissioners,professionalbodies

Transplant capacity and surgical expertise

Transplantservicesarecommissionedbythecommissioningbodies(ortheirequivalents)ofthefourUKnations.Renaltransplantservicesareprovidedby26UKhospitals,thereare7livertransplantcentresand6cardiothoracictransplantcentres.Eachcountryorganisesitsprovisionoftransplantservicesdifferentlybutasthenumberoftransplantscontinuetorise,thefourcountrieswillneedtoworktogethertomakesurethatthereissufficientcapacityandsurgicalexpertisetomeetdemands.ArecentexaminationofcardiothoracictransplantationacrosstheUKco-ordinatedbyEnglishCommissionershasprovidedausefulmodelforplanningforfuturetransplantservices.

Action to meet transplant capacity and expertise requirements


Ensurethattransplantcentreshavethecapacity,surgicalexpertiseandotherclinicalskillstomeetthedemandsfortransplantationasdonornumbersincrease.

Commissioners

Commissioning a shared donation service – NORS

TheNationalOrganRetrievalService(NORS)wasdevelopedfollowingtheOrganDonationTaskforce(ODTF)recommendations.TheservicehasbeencommissionedsinceApril2010andensurestherearefullystaffedretrievalteamswhoareavailable24/7toretrievedonatedorgansfromanyhospitalwithintheUK.Thecurrentserviceconfigurationworkswell,but,asthenewstrategyisimplementedthereisaneedtocontinuetocommissionaneffectiveandcost-efficientservicethatisresponsivetotheneedsofthedonorhospitalsandtransplantcentres.Itwillbeimportanttoensurethattheretrievalservicecanrespondtoincreasingnumbersofdonorsbutdoesnotincludeunderutilisedcapacity.Theservicewillbereviewedtoensureitremainsfitforpurpose.

Actions for configuration of NORS


ImplementtherecommendationsfromtheforthcomingCardiothoracicExaminationofIssues.

Commissioners,NHSBT

ReviewtheNORSservicetoensurethatthereissufficientcapacityandflexibilitywithintheretrievalteamstomeetanyincreaseindonation.

NHSBT


Taking Organ Transplantation to 2020:Adetailedstrategyv27Systemstosupportorgandonationandtransplantation

Research and Development

Aswitheveryaspectofhealthcare,bestpracticeshouldbebasedonarobustevidencebase.TheUKisverycompetitiveinmanyaspectsofresearchinbothorgandonationandtransplantation.Muchresearchisdonebyscientistsandcliniciansworkingintheirrespectiveuniversityandclinicaldepartmentsandsupportedbylocal,nationalandinternationalfunding.However,NHSBThasbeenactivelyinvolvedinbothinitiatingandsupportingclinicalresearchand,since2008,staffatNHSBThavebeenauthorsinpublicationsinpeer-reviewedjournals.

Overthepastfiveyears,NHSBThasactivelysupportedresearchthroughprojectfundingandclinicaltrials,andhasfundedclinicalresearchfellows,andsupportedhonoraryfellowstoworkonprojectsthataredirectlyalignedwithNHSBT’sstrategicaims.Furthermore,inthelasttwoyears,NHSBThasfundedQUOD(QualityinOrganDonation,abioresourceandbasiclaboratorysupport,basedintheUniversityofOxford)whichwillprovideauniqueresourcetosupporttranslationalresearchfocusingonqualityinorgandonation.NHSBThasalsofundedaClinicalTrialsResourcethatwillprovideadviceandpracticalsupportforclinicaltrialsthatwillnotonlyhelpclinicianswithspecialistknowledgeintransplanttrialsbut,becauseofthecloselinkswiththeRegistry,provideanefficientandcost-effectivetrialsunit.

Despitethesedevelopments,NHSBTneedstodomoretoincreaseorgandonationandtransplantationresearchanddevelopment,withintheresourcesavailable,toidentifybestpractice,andsupportnewresearchinitiativesthatareinlinewithourstrategicaims.

Actions for improvement in Research and Development


Developaprogrammeofsponsoringsystematicreviewstoassessthecurrentevidencebaseinaspectsofdonoridentification,consent,donorandorgancharacterisationandretrieval.

NHSBT

Reviewandfurtherimproveabilitytosupportclinicalresearchstudiesthatareinlinewithstrategicgoalsofincreasingtheavailability,qualityandoutcomesofdonatedorgans.

NHSBT

Developanintegratedprogrammetosupportclinicalfellowsinhealthcaretoundertakeorsupportclinicalstudiesandreviews.




Contracts

Hospitalswith40ormorepotentialdonorsannuallyreceiveasimilarorgandonationservicetohospitalswithfewerthantenpotentialdonorsayear.SpecialistNursesworklonghourstryingtomeettheneedsofthedonorfamily,caringforthedonortoimproveorganquality,gatheringinformationaboutthedonorandofferingorganstothetransplantcommunity.ClinicalLeadsforOrganDonation(CLODs)andDonationCommitteeChairsworkhardtochangehospitalsystemsandpracticebutmayfindthemselvesdoingsowithlittlesupportfromwithintheirorganisation.LearningfromtheexperienceintheUS,systemswillbeestablishedtospecifythelevelsofservicethathospitalsandNHSBTshouldprovideinrelationtoorgandonation.SubjecttoregionalvariationsinGovernmentpolicy,thiswillinvolvethedevelopmentofcontractswithhospitals,clarifyinghowthedonorservice,providedjointlybythehospitalandNHSBTstaff,willwork.

ThecontractwillbedevelopedwiththeRegionalCollaborativesandindividualhospitalsand,utilisingfundingcurrentlyavailabletothehospitalthroughdonorreimbursement,wouldbeavehicleforarangeofperformancemanagementtargetsandincentives,suchas:

• Fixedlevelsoffundingforpredicteddonoractivity

• Marginalratesoffundingfordonationsabovetarget

• ImplementationofNICEguidelinesandotherappropriatestandardstoensuretimelyidentification,referralandassessmentofpotentialdonors.

ThisapproachwouldmeanthatthelevelofservicetobeprovidedbybothhospitalsandNHSBTisclearandunderpinnedbycontractualarrangementswhichsupportperformanceimprovementandencourageallhospitalstoachievetheirfullpotentialfororgandonationandtransplantation.Informationaboutindividualhospitalperformanceinorgandonationandtransplantationisroutinelyavailabletobothhospitalsandthepublic.

Action to improve contractual arrangements


Subjecttovariationsinregionalpolicies,establishformalcontractsbetweenNHSBTandhospitals,specifyinghowhospitalsandtheNHSBTdonationserviceworktogethertoachieveexcellence.

NHSBT,NHS,UKHealthDepartments/Commissioners

Systemstosupportorgandonationandtransplantation



Section four

Measuring success

Achieving the aim of the strategy for the UK to match the best in the world will require focus and sustained collaborative effort by both individuals and organisations. It is important to be able to understand whether the sum of these actions is having the expected impact. A number of measures will be used to track improvements in performance and to compare with international benchmarks. It is likely to take longer than seven years to achieve these measures fully, but they represent world-class performance and should be the aspiration for the UK.

Measure 1 Consent/authorisation for organ donation

Aim for consent/authorisation rate in excess of 80% (currently 57%)16

Rationale:Improvingconsent/authorisationratesisourmostimportantstrategicaimandisfundamentaltothesuccessofthestrategy.Spainachievedan84%consentratein2011,basedprimarilyonpotentialDBDdonors.IntheUKithasprovedmoredifficulttoobtainconsentforDCDdonors,whichmakeupanincreasingproportionofourdeceaseddonorpool.UsingSpainasabenchmarkbuttakingaccountofdifferencesbetweenUKandSpanishdonorpools,achievingameasureofatleast80%consentwouldcompareveryfavourablywithEuropeancounterparts.Thiswillbeverychallengingtoachieve,particularlyforBlack,AsianandMinorityEthniccommunitieswherefamilyrefusalratesare66%butrewardsfordonors,theirfamiliesandfororgantransplantrecipientsareenormous.

Measuringsuccess

16FiguresforWalesshouldbemeasuredseparatelyaftertheimplementationoftheplannedWalesHumanTransplantationBillin2015.


30 Taking Organ Transplantation to 2020:AdetailedstrategyMeasuringsuccess

Measure 2 Deceased organ donation

Aim for 26 deceased donors per million population (pmp) (currently 19.1 pmp)

Rationale:ThedeceaseddonorrateintheUKhasincreasedbysevendonorspmpoverthelastfiveyears.Anothersuchincreasewouldmeanadeceaseddonorrateof26pmpintheUKandwouldbringallregionsuptothestandardofthebestperformingteamintheUK.GiventheconsiderablechangesintheUKoverthelastfiveyears,thisaimisverychallengingandwillnotbeachievedwithoutachangeinpublicattitudesandbehaviourandanimprovementinconsent/authorisationrates.SucharateshouldcompareveryfavourablyagainstthebenchmarkcountriesofSpain,Portugal,Croatia,USAandFrance(thetopperformingcountriesin2011),withtheUKaimingtobeoneofthetopfiveofcomparatorcountries.

Measure 3 Organ utilisation

Aim to transplant 5% more of the organs offered from consented, actual donors

Aimfor:

• 85%ofabdominal*organsfromDBDdonorstobetransplanted(currently80%)

• 35%ofheartsandlungsfromDBDdonorstobetransplanted(currently30%)

• 65%ofabdominalorgansfromDCDdonorstobetransplanted(currently60%)

• 12%oflungsfromDCDdonorstobetransplanted(currently7%).

*Kidney,liverandpancreas.

Thesemeasureswillbekeptunderregularreview,astheywillbesubjecttochangeasimprovedtechnologiesandtechniquesfororganpreservationbecomeavailable.

Rationale: Anefficientorganoffering,retrievalandtransplantsystemwilluse:(i)suitabletriagearrangementssuchthatoffersofunsuitableorgansareminimised;(ii)effectivedonoroptimisation;perfusionandpreservationtechniquessothatorganqualityismaximised,and(iii)efficientorgan-offeringprocessessothatorganscanbedirectedtosuitablerecipientsasquicklyaspossible.Transplantratesoforgansfromdeceaseddonorswillincreaseassuchsystemsdevelop.5%moreorganstransplantedineachofthesegroupsmeansthat5%morepatientswouldreceiveatransplantratherthanriskdeathonthetransplantlist.

Measure 4 Patients transplanted

Aim for a deceased donor transplant rate of 74 pmp (currently 49 pmp)

Rationale:Theultimateaimofthisstrategyistoincreasethenumberofpatientswhoaretransplantedandgiveeveryoneonthetransplantlistarealisticchanceofreceivingthelife-savingorlife-enhancingtransplantthattheyneed.Ifallthestepsinthedonationandtransplantationpathwayworkaswellaspossibleandmorepeopledonatetheirorgansthendeceaseddonorratesof74pmpshouldbeachievable.

Currently,intheUKthereare39deceaseddonortransplantsforevery100patientsonthetransplantlistatyearend.Anincreaseinthetransplantrateto74pmpwouldmean58transplantsper100patientsonthetransplantlistatyearend(basedoncurrenttransplantlistfigures).Thisfigurecomparesmuchmorefavourablywithcurrentinternationalbenchmarks:70per100inSpain,45per100inFranceand32per100intheUS,althoughdifferentratesofunderlyingdiseaseanddifferentlistingpracticesmakeitdifficulttoachieveameaningfulcomparison.

Aimingfor74transplantspmpischallenging,butachievingitwillprovidelife-savingtransplantsformanymorepatientsandwouldmatchworld-classperformance.


Taking Organ Transplantation to 2020:Adetailedstrategy31Measuringsuccess


A collaborative UK strategy between


taking organ transplantation to 2020 · the uk organ donor rate and suggested that, if all the...

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