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Taking Organ Transplantation to 2020A detailed strategy
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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)
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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
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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
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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
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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’.
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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.
Taking Organ Transplantation to 2020:Adetailedstrategy07
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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
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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
29123113
763678007997
7219
6698
6142
5673
76557877
7336
0
1000
2000
3000
4000
5000
6000
7000
8000
2003-04 2004-05 2005-06 2006-07 2007-08 2008-09 2009-10 2010-11 2011-12 2012-13
Nu
mb
er
Donors
Transplants
Transplant list
Taking Organ Transplantation to 2020:Adetailedstrategy09
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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.
91.4
82.879.2
75.3 73.9 71.5
59.1
51.1 50.6 49.9 49.5 48.543.8 41.8
38.2 35.529.1 26.9
16.5
0
10
20
30
40
50
60
70
80
90
100
Croati
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ain
Norway
USA
Portu
gal
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en
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yIta
ly UK
Finlan
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Denmar
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The N
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Slova
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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
43.4
38.2
28.7 28.3
21.6
15.9
10.2 9.3
5.3
0
5
10
15
20
25
30
35
40
45
50
55
TheNetherlands
UK Lithuania Italy Romania Norway Spain Slovakia Poland Hungary
refu
sal r
ate
(%)
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12 Taking Organ Transplantation to 2020:Adetailedstrategy
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
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Taking Organ Transplantation to 2020:Adetailedstrategy13
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
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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:
Specific Action Responsibility
Publishhospitaldatatoincludevariationindonorreferralrates.ThiswillincludethepublicationofvariationinreferralofpotentialDCDdonorsonahospital,regionalandnationalbasis
NHSBT
Establishanationalreferralservicetoimprovesupporttohospitalsandproviderapidtriageofpotentialdonors.ThismayincludeaservicetotriagepotentialCategoryIIIDCDdonorsrapidly.
NHSBT
Developasystemofpeerreviewthatisunderpinnedbyasetofagreedstandardsforretrieval/transplantcentres.
NHSBT,professionalbodies
Developtrainingprogrammestosustainandincreaseclinicians’organdonationunderstandingandexpertise.
NHSBT,professionalbodies
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:
Specific Action Responsibility
ScopethepotentialforMaastrichtCategoryI/IIDCDintheUK,learningfromthepilotprogrammeinScotland.
NHSBT,NHS
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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.
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16 Taking Organ Transplantation to 2020:Adetailedstrategy
Actions to increase society’s support for deceased donation
Specific Action Responsibility
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.
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Taking Organ Transplantation to 2020:Adetailedstrategy17
Actions to improve the support for families of potential donors
Specific Action Responsibility
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
Improvingdonorconversionrates
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18 Taking Organ Transplantation to 2020:Adetailedstrategy
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
Specific Action Responsibility
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
Specific Action Responsibility
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
Improvingdonorconversionrates
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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
Specific Action Responsibility
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/
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20 Taking Organ Transplantation to 2020:Adetailedstrategy
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
Specific Action Responsibility
Reviewwhatpre-morteminterventionscouldlegallyandethicallybeundertakentomaximisethepotentialfororgandonation(suchastheantemortemadministrationofheparin).
UKHealthDepartments,Nationalethicsorganisations,professionalbodies
EvaluateandeffectivelyimplementnewtechniquesandtechnologiesforthepreservationofretrievedorganswithaviewtotheiruseintheUK.
NHSBT,professionalbodies
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
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Taking Organ Transplantation to 2020:Adetailedstrategy21
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
Specific Action Responsibility
Provideguidanceonlevelsofacceptableriskinrelationtoofferedorgans,particularlyfromextendedcriteriadonors,relevanttotheindividualrecipient’sneedsandwishes.
Professionalbodies,NHSBT
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
Specific Action Responsibility
Publishcentre-specificrisk-adjustedpatientsurvivalfromlistingaswellasfromtransplantation.
NHSBT
Provideguidanceonlevelsofacceptableriskinrelationtoofferedorgans,particularlyfromextendedcriteriadonors,relevanttotheindividualrecipient’sneedsandwishes.
Professionalbodies,NHSBT
Ensurecliniciansareawareofandfollow,bestpracticetoincreasepatientandgraftsurvival.
Commissioners,NHSBT,professionalbodies
10Exactnumbers:272kidneys;212pancreas;107livers;43lungs.
Increasingretrievalandtransplantationoforgans
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22 Taking Organ Transplantation to 2020:Adetailedstrategy
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
Specific Action Responsibility
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
Specific Action Responsibility
Developandimplementatrainingandaccreditationprogrammeforallretrievalsurgeonsandextendthistosupportingpost-mortemtechnologieswhentheseareintroduced.
NHSBT,Professionalbodies
11Anindicatorofabiologicalstate.12Themicroscopicanatomyofcellsandtissuesofplantsandanimals.
Increasingretrievalandtransplantationoforgans
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Taking Organ Transplantation to 2020:Adetailedstrategy23
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
Specific Action Responsibility
EvaluatenewtechniquesandtechnologiesforthepreservationofretrievedorganswithaviewtotheiruseintheUK.
NHSBT,professionalbodies
Lack of suitable recipient
Inaveryfewcases,thereisnosuitablerecipientintheUK(usuallybecauseofaninabilitytomatchrecipientsizeorbloodgroup)sotheorganisexportedtoanothercountry.Rarely,organshavebeendeemedtoohighriskforuseintheUKbutusedeffectivelyelsewhere.ItshouldbenotedthattheUKsharesunusedorganswithothercountriesandthereisafairbalanceofexchange.Nonetheless,itispreferablethattheorganisretrievedandusedintheUKtokeepthewaittimeshortandsomaintaingraftfunction.
Action to address lack of suitable recipient
Specific Action Responsibility
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
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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
Specific Action Responsibility
Improvetransplantrecipientsurvivalbyimprovingunderstandingofthedonororgan/recipientcompatibility.
NHSBT,professionalbodies
Reduction in premature mortality
TheUKmaintainsacomprehensiveregistryoftransplantrecipients.UseoftheregistrydatahasdrivenupstandardsandledtotheUK’spositionasaninternationalleader.Analysisoftheregistryprovideshugebenefitforpatients,professionalsandhealthcaremanagers.Potentialtransplantrecipientsaregiventherightinformationtomakeafullyinformedchoice,whiledonorfamiliescanbereassuredthatdonatedorganssaveorimproveasmanylivesaspossibleandclinicianscanensuregoodoutcomesandlearnfromexperience.
StudiesintheUKandelsewhereshowthatthelifeexpectancyoftransplantedpatientsarebetterthanifthepatienthadnotreceivedanorgantransplant.However,lifeexpectancyisstillshortenedincomparisonwiththegeneralpopulation.Causesofprematuredeathincludeanincreasedriskofsomeinfections,somecancers,cardiovasculareventsandrecurrent(orpersisting)disease.
Actions to reduce premature mortality
Specific Action Responsibility
Ensurecliniciansareawareofandfollow,bestpracticetoincreasepatientandgraftsurvival.Thiscouldincludeappropriatemonitoringandtreatmentofcardiovascularriskfactorsandscreeningformalignancies,toincreasepatientandgraftsurvival.
Professionalbodies,Commissioners,NHSBT
Improvingsurvivaloftransplantrecipients
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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
Specific Action Responsibility
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
Specific Action Responsibility
Developaworkforcestrategyfortheorgandonationservicewhichwilltailortheservicetotheneedsofindividualhospitalsandseektoprovideaworkforcethatisfocusedonsupportingthepotentiallyconflictingdemandsofprovidingaservicetothedonorfamily,donormanagementanddonorco-ordination.Thismaybeconfiguredinoneormorerolesastheneedsoftheservicedictate.
NHSBT,NHS
Systemstosupportorgandonationandtransplantation
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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
Specific Action Responsibility
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
Specific Action Responsibility
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
Specific Action Responsibility
ImplementtherecommendationsfromtheforthcomingCardiothoracicExaminationofIssues.
Commissioners,NHSBT
ReviewtheNORSservicetoensurethatthereissufficientcapacityandflexibilitywithintheretrievalteamstomeetanyincreaseindonation.
NHSBT
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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
Specific Action Responsibility
Developaprogrammeofsponsoringsystematicreviewstoassessthecurrentevidencebaseinaspectsofdonoridentification,consent,donorandorgancharacterisationandretrieval.
NHSBT
Reviewandfurtherimproveabilitytosupportclinicalresearchstudiesthatareinlinewithstrategicgoalsofincreasingtheavailability,qualityandoutcomesofdonatedorgans.
NHSBT
Developanintegratedprogrammetosupportclinicalfellowsinhealthcaretoundertakeorsupportclinicalstudiesandreviews.
Professionalbodies,NHSBT
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28 Taking Organ Transplantation to 2020:Adetailedstrategy
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
Specific Action Responsibility
Subjecttovariationsinregionalpolicies,establishformalcontractsbetweenNHSBTandhospitals,specifyinghowhospitalsandtheNHSBTdonationserviceworktogethertoachieveexcellence.
NHSBT,NHS,UKHealthDepartments/Commissioners
Systemstosupportorgandonationandtransplantation
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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.
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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.
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A collaborative UK strategy between
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