Taking Organ Transplantation to 2020 A UK strategy

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AcknowledgementsWe 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)

A collaborative UK strategy between

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Taking Organ Transplantation to 2020: A UK strategy 03

Contents

04 Foreword

05 Taking Organ Transplantation to 2020: A UK strategy

07 What will organ donation and transplantation look like in 2020?

10 How will these outcomes be achieved?

15 Measuring success

18 Appendix 1: Background to organ donation and transplantation in the UK and the development of the strategy.

20 Appendix 2: Actions

Contents

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1OrganDonationTaskforce,Organs for Transplant. A report from the Organ Donation Taskforce.January2008.DepartmentofHealth.

04 Taking Organ Transplantation to 2020: A UK strategyForeword

Foreword

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.

Mark Drakeford MinisterforHealthandSocialServices

Edwin Poots MinisteroftheDepartmentofHealth,SocialServicesandPublicSafety

Michael Matheson MinisterforPublicHealth

Jeremy Hunt SecretaryofStateforHealth

John Pattullo ChairofNHSBloodandTransplant

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Taking Organ Transplantation to 2020: A UK strategy 05

Taking Organ Transplantation to 2020: A UK strategyThe UK can and must do more to save and improve lives through organ donation and transplantation. The NHS still does not support some people who want to donate and more can be done to ensure that donated organs are used.

The NHS needs to build on the excellent progress achieved in the past five years, pursue consistently excellent practice in the care of every potential donor and maximise the use of every available organ. Getting it right every time in hospital, however, will not be enough. Unless people in the UK are prepared to donate their organs when and if they can and families are proud to agree to donation when their relative’s wish is unknown, these aims cannot be achieved. The UK needs a transformation in donor and family consent to match the transformation already underway in NHS organ donation and transplantation services.

The aim is to match world-class performance in organ donation and transplantation.

Threegroups(societyandindividuals,NHShospitalsandstaff,NHSBTandCommissioners2)needtoactforthisstrategytobesuccessfulandachievethedesiredoutcomes.ActionfromGovernment,professionalbodiesandthevoluntarysectorinsupportwillbeessentialtoo.Shouldanyofthesegroupsfailtorespondtheaimsofthisstrategywillnotbefullyachieved.

Who Outcome

Society and individuals

Attitudestoorgandonationwillchangeandpeoplewillbeproudtodonate,whenandiftheycan.

NHS hospitals and staff (donation)

Excellentcareinsupportoforgandonationwillberoutinelyavailableandeveryeffortmadetoensurethateachdonorcangiveasmanyorgansaspossible.

NHS hospitals and staff (transplantation)

Moreorganswillbeusableandsurgeonswillbebettersupportedtotransplantorganssafelyintothemostappropriaterecipient.

NHSBT and Commissioners

Bettersupportsystemsandprocesseswillbeinplacetoenablemoredonationsandtransplantoperationstohappen.

2ThetermCommissionersisusedtocoverthosewhoareresponsibleforplanningandfundingtransplantation,recognisingthattherearedifferentsystemsacrosstheUK

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06 Taking Organ Transplantation to 2020: A UK Strategy

More needs to be done

Despitefiveyearsofprogressanda50%increaseinthenumberofdeceasedorgandonorssince2008,theUKstillfacesashortageofdonatedorgansandpeoplewaitingforatransplantstilldie.OverhalfamillionpeopledieeachyearintheUKbutfewerthanfivethousandpeopleayeardieincircumstancesorfromconditionswheretheycanbecomedonors.

Evolution in the NHS

GovernmentandtheNHSneedtoexplorewhethertherearepotentialdonorswhoareoverlookedorwhetherchangestoend-of-lifecaremightallowmorepeopletodonate.Althoughtherehavebeenbigimprovementsinhospitalswithrespecttoorgandonation,thereisstillconsiderablevariationinpracticebetweendifferentregionsandhospitals.Ifeveryregionperformedatthelevelofthebest,itisestimatedthattherewouldbeover500(45%)moredonorsthanthe1,212whoactuallydonatedorganslastyear.

Variation in organ usageOnceconsentfordonationisgiven,thereareconsiderablevariationsinhoworgansareused.Thedecisiononwhetheraparticularorganissuitableforaparticularrecipientisdifficulttomakeandinvolvesabalanceofriskandbenefitwithconsiderationgiventobothdonorandthepotentialrecipient.

Infuture,withmoresupportandinformation,surgeonsshouldbeconfidenttousemoreoftheavailableorgans.Sometimesdonationdoesnotgoaheadbecauseoftimingandlogisticalissues.Familiesofdonorswhodiefollowingcirculatorydeath3canfindthetimeittakestoevaluatethedonorandretrieveandimplanttheirrelative’sorganstoostressfulandsotheywithdrawconsent.Streamliningsystemsmayreducethedifficultiesfamiliesfaceandimprovesupporttoclinicianstoo.

ThisstrategyisintendedtoprovidetheUKorgandonationandtransplantationcommunitywithwhatitneedstomatchthebestintheworld.AnevolutionofNHSservicesandarevolutioninpublicbehaviourarerequiredtoachievethis.

A revolution in consent

Therevolutioninpublicbehaviourisneededinonekeyarea–consent4iftheUKistomatchthosecountriesthatperformbest–suchasSpain.Althoughmorepeoplehaveagreedtodonateorgansoverthepastfiveyears,thisisbecausemorepeoplehavebeenaskedtodoso.Theproportionoffamilieswhorefusetoallowtheirrelative’sorganstobeused,sometimesevenwhentheyareinformedthattheirrelativewantedtobeadonor,hasnotchangedinmostpartsoftheUK.MostpeopleintheUKwouldacceptanorganfromsomeoneelse,iftheyneededone,butthemajorityhavenotsigneduptodonatetheirownorgans.ThosewhodojointheNHSOrganDonorRegister(ODR)oftendonottelltheirfamilies,whothenmayfeelunabletosupportthatwish.

Althoughthereareover19.5millionpeopleontheODR,mostwilldieincircumstancesorfromconditionswhereorgandonationisnotpossible.Ideally,everybodyshouldbepreparedtodonateiftheyareabletodosoandfamiliesshouldsupporttheirrelative’swishes.

Without organ donation there can be no transplantationAsasocietyweneedtorecognisethatwithoutorgandonationtherecanbenotransplantation.Indeed,whenafamilyrefusestosupportarelative’swishtodonateorisunwillingtomakethedecisiononhisorherbehalf,someoneelsewilldie.Thisstrategyaimstoprovidetheleadership,educationandrecognitionthatwillmakeUKcitizensproudtodonate.ThisisparticularlyrelevantforpeoplefromBlack,AsianandMinorityEthnic(BAME)communities,whorepresent27%ofthoseonthewaitinglistbutonlyconstitute5%oforgandonors.

TheWelshGovernmenthasmadeaboldmovetointroducelegislationtobringinasoftopt-outsystemforconsenttoorgandonation.Underthenewarrangements,peopleinWaleswillhavethechoiceofeitherregisteringawishtobeadonor(optingin)ornottobeadonor(optingout).Thosewhodoneithermaybedeemedtohavegiventheirconsenttodonation.Thenewsystemwillbeprecededbyatwo-yearcommunicationscampaigntopromotethenewlawandchoicesavailabletopeoplelivinginWales.NHSBTiscommittedtoensuringtheoperationalchangesresultingfromthenewWelshlegislationareintroducedsafelyandeffectively.

Inaddition,theDepartmentforHealth,SocialServicesandPublicSafetyinNorthernIrelandisconsultingonattitudestowardsorgandonation,includingtheintroductionofanopt-outsystemfororgandonation.TheotherUKcountrieswillwatchthesechangeswithinteresttoseetheimpactontheconsentanddonationrates.5

3DonationmayfollowthedeclarationofdeathaccordingtoneurologicalcriteriaknownasDonationafterBrainDeath(DBD)oritmayfollowcirculatorydeathknownasDonationafterCirculatoryDeath(DCD).

4Wherethetermconsentisused,thisshouldalsobetakentoreferto‘authorisation’,thetermusedinthelegislationinScotland.5TheWelshGovernment’sviewisthatinternationalevidencesuggestsitcouldseea25%increaseinthedonationrate.

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Taking Organ Transplantation to 2020: A UK Strategy 07

What will organ donation and transplantation look like in 2020?Outcome 1

Action by society and individuals will mean that the UK’s organ donation record is amongst the best in the world and people donate when and if they can.

Societywillexpectthatdonationwillbethenaturaloutcomeforindividualswhodieincircumstanceswheredonationisapossibility.MorepeopleintheUKwillactivelysupportdonationandwillhavepledgedtodonatetheirorgansusingarangeofdifferentmechanisms(suchasjoiningtheNHSOrganDonorRegister,carryingacardandviapromptedchoiceschemessuchastheDVLA)andtoldtheirfamiliesandfriendsoftheirwishtodonate.Familieswillbebetterpreparedtoplaytheircrucialroleintheorgandonationprocess.Theywillbeawareoftheirrelative’swishes,expecttobeaskedaboutorgandonationifthisisapossibilityandbepreparedtosupporttheirrelative’swishtobeadonor.Itwillbeveryrareforafamilytooverrideapledgetodonate.Intheincreasinglysmallnumberofinstanceswheretheirrelative’sviewsareunknown,familieswillbeproudtodonateontheirbehalf.Asaconsequence,societyasawholewillbeproudofitsrecordandthelifechancesofferedtopatientswhopreviouslywouldhavedied.

AllUKcountrieswillhaveahigherrateofconsent.InWalestheGovernmenthasbroughtforwardlegislationtointroduceasoftopt-outsystemforconsenttoorgandonationfrom2015.TheexpectationoftheWelshGovernmentisthatthiswillincreasetheproportionofpeoplewhodonateorgans.Thischangewillbewatchedcarefullytoseetheeffectonthedonationandtransplantationprogramme.

PeoplefromBAMEcommunitieswillunderstandthattheyaremorelikelytoneedatransplantthanthewiderpopulation,willrecognisethebenefitsofdonationanddonationratesfromthesecommunitieswillmorecloselymatchthoseofthewiderpopulation.

Outcome 2

Action by NHS hospitals and staff will mean that the NHS routinely provides excellent care in support of organ donation and every effort is made to ensure that each donor can give as many organs as possible.

Everyhospitalwillroutinelyidentifyandrefereveryonewiththepotentialtodonate,regardlessofwheretheydieorwhetherdeathisdeterminedusingneurologicalorcardio-respiratorycriteria.Criticalcareclinicianswillbeprovidedwithclearstandardsofpracticethatunderpinanexpectationthataneurologicaldeterminationofdeathismadewhereverthisappearstobealikelydiagnosis,evenshouldthisrequireaperiodofstabilisationandobservationorancillaryinvestigation.FollowingaScottishpilot,morecentreswillbeabletoofferdonationfollowingunexpectedwitnessedcardiacarrestandfailedresuscitation.Eachpotentialdonor’seligibilitywillbeassessedrapidly,andwheredonationisanoption,allfamilieswillbeapproachedbyatrainedandskilledclinicalteamandprovidedwiththeadviceandsupporttheyneedtomakeaninformeddecisionaboutorgandonation.

Everyeligible,consenteddonorwillbecaredfortomakesurethattheirwishtodonatebenefitsasmanypeopleaspossibleandnoopportunitytousetheorgansislost.Coroners,ProcuratorsFiscal,theirofficersandthepolicewillsupportdonationwherethisdoesnotimpedetheirresponsibilities.

Therewillbegreaterclarityforhospitalstaffaboutwhatinterventionsarelegalandethicaltosupportgoodorganfunction.Wheredonorshavegivenexpressconsentfordonation,theirend-of-lifecarewillbemanagedtoenabletheirwishestobefulfilled.InWalesandanyotherUKcountrythatmayhaveintroducedanopt-outschemefororgandonationnewlegislationwillresultinmorefamiliessupportingdonationwheretheirrelativehadexpressedordeemedconsent.TherewillbegoodevidenceonwhichtodebatewhetherthelegalsystemshouldbechangedelsewhereintheUK.

What will organ donation and transplantation look like in 2020?

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08 Taking Organ Transplantation to 2020: A UK Strategy

Society and individualsAttitudes to organ donation will change and people will be proud to donate, when and if they can.

What will organ donation and transplantation look like in 2020?

Martyn was only 23 when his life ended suddenly in a road traffic accident. Yet in the middle of their tragedy, only hours after his death, his family decided to let others be helped through the donation of his tissues.

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Taking Organ Transplantation to 2020: A UK Strategy 09

Outcome 3

Action by NHS hospitals and staff means that more organs are usable and surgeons are better supported to transplant organs safely into the most appropriate recipient.

Retrievalwillbeplannedtomakesurethatasmanyorgansaspossibleareusedandretrievalsurgeonswillhaveabetterrangeofoptionsforpreservingorgansafterretrieval.

Transplantsurgeonswillhavemoreinformationandguidancetohelpthemdecidewhichorganscanbesafelyandeffectivelytransplantedintowhichrecipients.

Therewillbegreaterconsistencyintheacceptanceofoffersoforgansbetweentransplantcentresandsurgeons,agreaterproportionoforganswillbetransplantedsafelyandmoreliveswillbesavedordramaticallyimproved.TheUKwilltransplantmoreorgans,particularlymoreheartsandlungs,wherethisisthebestoptionforthepatient.

Patientselectionforthetransplantwaitinglistandorganallocationpolicies,underpinnedbyresearch,willsupportandenableareductioningraftfailureratestherebyreducingavoidableprematuremortality.

Outcome 4

Action by NHSBT and Commissioners means that better support systems and processes will be in place to enable more donations and transplant operations to happen.

TheNationalOrganDonationService,whichsupportsfamiliesandco-ordinatesorgandonation,willmeettheneedsofdifferenttypesofhospitalsandwillsupportdonorfamiliesseparatelyfromcaringforthedonor,whereappropriate.

ThelevelofservicetobeprovidedbybothhospitalsandNHSBTisclearandunderpinnedbycontractualarrangementswhichsupportperformanceimprovementandencourageallhospitalstoachievetheirfullpotentialfororgandonationandtransplantation.Informationaboutindividualhospitalperformanceinorgandonationandtransplantationisroutinelyavailabletobothhospitalsandthepublic.

Cliniciansandotherstaffinvolvedwithorgandonation,retrievalandtransplantationaretrained,skilledandmotivatedtoachieveexcellenceandreceiveregularfeedbacktoenablethemtomonitortheirachievements.

Anationalreferralservicewillsupportthedonationandtransplantprocess,throughaccessingdonorwishes,rapidtriagetodeterminewhetherapatientisapotentialdonorandco-ordinationofresources,includingspecialistnursesandretrievalteams.

Anefficientinformationtechnologyservicesupportingeveryelementoftheorgandonationandtransplantationpathwayisdesignedtomeettheneedsofcliniciansandotherusersandreduceinefficiencies.Thiswillincludeanewlybuiltregisterforrecordingorgandonationwishes.

Aco-ordinatedandsustainableprogrammeofresearchwillprovideanevidencebaseforcliniciansandpolicymakerstocontinuetoensurethatsuccessful,innovativetechniquesareidentifiedandusedtobenefitorgandonors,theirfamiliesandthoseonthetransplantwaitinglist.

What will organ donation and transplantation look like in 2020?

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10 Taking Organ Transplantation to 2020: A UK strategy

How will these outcomes be achieved?Outcome 1

Action by society and individuals will mean that the UK’s organ donation record is among the best in the world and people donate when and if they can.

OutsidetheNHS,knowledgeoforgandonationremainslowandwhilemostpeoplewouldacceptanorganiftheyneededatransplant,onlyathirdofthepopulationindicatesawishtodonateafterdeathbyputtingtheirnamesontheODR.AlthoughoverhalfamillionpeopledieeveryyearintheUK,fewerthanfivethousandpeopledieincircumstanceswheretheycanbecomeanorgandonor.TheUKneedsashiftinbehaviourcomparabletothechangesachievedinpreventingdrink-drivingorsmokingcessation.Thereisevidencethateducationandpublicitycampaignshighlighttheimportanceoforgandonationandincreasewillingnesstodonate.ThefourUKcountries,withthesupportofNHSBTandinthecontextoftheirownlegalframeworks,willdevelopstrategiesforchangingthebehaviouroftheircitizensandNHSBTwillregularlymonitorpublicattitudesineachcountry.

Making a positive decision to donateFamiliesofpeoplewhohavethepotentialtodonateorgansarefacedwithmakingdecisionsforwhichtheyareoftenunprepared.Wherepeoplehavemadeanexplicitdecisioninlifetobeadonor,itismucheasierfortheirfamilytoknowwhattodo.Educationprogrammescanencouragemorepeopletoconsentinlifebutitisnaivetoassumethateveryonewillmakeadecisionandtelltheirfamilywhattheywant.Iffamiliesaretobeconfidenttoconsentintheabsenceofknowledgeoftheirlovedones’wishes,thentheymustfeelthatthisisapositivedecision,onewhichtheycanbeproudofandoneforwhichtheircommunityandcountryhonoursthem.

InWales,theGovernmenthasbroughtforwardlegislationtointroduceasoftopt-outsystemforconsenttoorgandonationfrom2015.Theexpectationisthatthiswillincreasetheproportionofpeoplewhodonateorgans.Thischangewillbefollowedwithinteresttoseeiftheexpectedincreasesaredelivered.

Whereindividualshavegivenexpressconsent,itisimportantthatthisconsentishonouredandthatfamiliesaccepttheirrelative’sintention.In2012/13therewere115(13%)familieswhorefusedtosupportexpressconsentcomparedwith799familieswhosupportedtheirrelative’swish.TheUKwillreview,inthelightofAmericanexperience,systemswherefamiliesarenotpermittedtooverridepre-existingconsentsopeoplecanbeconfidenttheirpledgewillberespected.

BAME communitiesPeoplefromBAMEcommunitiesareuptothreetimesmorelikelytoneedatransplantthanthewiderpopulation.Theyalsowaitlongerfortheirtransplantandthosewaitingforakidneytransplantaremorelikelytodiebeforetherightorganmatchcanbefoundforthem.Agoodorganmatchisimportantbecauseitresultsinbetteroutcomesforthetransplantrecipient.TheseinequalitieswillonlybeaddressedwhenBAMEfamiliesroutinelyconsenttoorgandonation.InpartnershipwiththeNationalBlackAsianandMinorityEthnicTransplantAlliance(NBTA),aswellastargetedengagementintheotherUKcountries,workwillcontinuetoengagewithBAMEcommunitiestopromotetheimportanceandbenefitsofdonation.FurthertrainingandsupportwillbeprovidedforthosewhoapproachBAMEfamiliestodiscussdonation.

To achieve Outcome 1 the UK should:

• Develop national strategies to promote a shift in behaviour and increase consent.

• Ensure that it is easy to pledge support for organ donation and once a pledge has been given, to honour the individual’s wish.

• Increase Black, Asian and Minority Ethnic communities’ awareness of the need for donation to benefit their own communities and provide better support for people in these communities to donate.

• Learn from the experience of legislative change in Wales.

How will these outcomes be achieved?

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Taking Organ Transplantation to 2020: A UK strategy 11

Outcome 2

Action by NHS hospitals and staff will mean that the NHS routinely provides excellent care in support of organ donation and every effort is made to ensure that each donor can give as many organs as possible.

TheOrganDonationTaskforce(ODTF)madeitclearthateverypersonintheUKcanexpecttobeconsideredasapotentialdonoraspartofhisorherend-of-lifecarewhereitismedicallypossible.TheGeneralMedicalCouncil(GMC)hassetoutdoctors’responsibilitiestomakethishappen.Hospitalsidentifyandrefer68%ofthesmallgroupofpeople(fewerthanfivethousandayear)whodieincircumstanceswhichallowthemtodonatebutmorecanbedonetoincreasethetotalgroupofdonors.

Itshouldbepossibletoincreasethenumbersofpeoplewhoareabletodonatetheirorgansbyexploringthreeareas.Firstly,byreviewingtheimpactofend-of-lifecarepracticesonthepotentialfordonationafterbrain-stemdeath(DBD).TherearerelativelylownumbersofpotentialDBDdonorsintheUKcomparedwithothercountriesandthisappearstobeadirectresultofclinicaldecisionstolimitorwithdrawtreatmenttopatientswithnon-survivablebraininjurybeforedeathofthebrainhasoccurredorcanbediagnosed.Evenwherebrain-stemdeathtestingispossiblethisoftendoesnothappen.Clinicalpracticeinend-of-lifecareneedstobereviewedtopromotedonation,particularlyforthosewhohavepledgedtodonate.

Secondly,thereisasignificantproportionofpeoplewhomaybeabletodonateaftercliniciansdecidetowithdraworlimittreatment(DCDdonors).Currently,only63%ofthesepotentialdonorsarereferred.Morepeoplewillhavetheopportunitytodonatebymakingiteasierandquickertoassessthesepatients’eligibilityfordonation.

Thirdly,apilotinScotlandseekstogivetheoptionofdonationtopeoplefollowingunexpectedwitnessedcardiacarrestandfailedresuscitation–ashappensinSpain.Ifsuccessfulthisoptionshouldbedevelopedinothermajorcentres.

A planned approach to organ donationDonoridentificationandreferralisonlypartofthestory.TheNHSneedstoofferanexcellent,caringservicetopotentialdonorsandtheirfamilies.Thisinvolvesaplannedapproachtothesubjectoforgandonationwhichensuresthatfamiliesaresupportedbypeoplewiththerightskillsandknowledgeandgiventimetoconsiderthebenefitsofdonation.Goodpracticeinthisareaisessentialtoincreasingthenumbersoffamilieswhosupporttheirrelative’swishtoconsentorwhofeelabletoconsentontheirbehalfwhentheirwishesareunknown.

Thecareapersonreceivesattheendoftheirlifecanhaveasignificantimpactonthefunctioningoftheirorgansandwithouttherightsupport,otherwisetransplantableorgansmaybecomeunusable.Itwillbeimportanttoensurethatclinicianshavetheexpertiseandhelptomakesurethatasmanyorgansfromdeceaseddonorsaspossiblecanbeused.

Professionalbodieswilldevelopstandardsofcare,basedonexistingandemergingnationalguidance,whichwouldleadtoincreasingBSDtestingandthereforeincreasingnumbersofpotentialdonorsfollowingbraindeath.

Hospitalswillbeheldtoaccountforthequalityoftheirorgandonationpracticeusingavarietyofmechanisms.ComparativedatawillbepublishedshowingperformancebyeachTrustorHealthBoard.6NHSBTwilldevelopformalcontractswithmajordonorTrusts/Boardsestablishingwhatisexpectedandhowthiswillbefundedandperformancemanaged.PracticeshouldfollowtheNationalInstituteforHealthandClinicalExcellenceguidelineCG135.OrganDonationandOrganDonationCommitteeswillauditpracticeagainstthisguideline.

To achieve Outcome 2 the UK should:

• Increase adherence to national standards and guidance.

• Increase the number of people who are able to donate following circulatory death and learn from the Scottish pilot on donation after failed resuscitation.

• Provide hospital staff with the support, training, resources and information they need to provide an excellent organ donation service.

• Ensure every donor’s care, prior to retrieval, optimises organ quality.

6TheformatforpublicationwilldependonthedifferenttypesofhospitalorganisationacrosstheUK.

How will these outcomes be achieved?

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12 Taking Organ Transplantation to 2020: A UK strategy

NHS hospitals and staffExcellent care in support of organ donation will be routinely available and every effort made to ensure that each donor can give as many organs as possible.

How will these outcomes be achieved?

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Taking Organ Transplantation to 2020: A UK strategy 13

Outcome 3

Action by NHS hospitals and staff means that more organs are usable and surgeons are better supported to transplant organs safely into the most appropriate recipient.

Onceconsenthasbeengivenfortheuseofthedonor’sorgansfortransplantation,theorgansneedtoberetrievedexpertlyandtransportedefficientlytothetransplantcentreforimplantation.Thetimingofretrievalwilldependonthetypeofdonor(DBDorDCD)andwhichorgansaretoberetrieved.Afterbraindeath,thefunctioningofsomeorgans(suchasheartsandlungs)maybeimprovedbyextendingthecareofthedonorenablinganincreaseinthenumberoftransplantsandbetteroutcomesfortherecipients.OrganretrievalisaveryintricateprocedureandhastobeundertakenquicklyinDCDdonorssoastominimiseorgandeterioration.Anewtrainingandaccreditationprogrammewillensurehighlevelsofskillsaremaintained.

Newtechnologies,suchasspecialistperfusionmachines,whichaimtopreserveandimprovethequalityoforgansafterremovalandevaluatewhichorgansshouldorshouldnotbeusedarebeingexplored.Ifsuccessful,itisestimatedthat5%moreorganswhichcurrentlyprovetobeunusable,couldbetransplanted.

Opportunitiesfortransplantationarelostatallstagesoftheprocessfromofferingtoimplantationandwhilethereisavalidclinicalreasonforthisinmostcases,therearesomeinstanceswhenvariationinpracticeisunexplained.Arangeofmeasuressuchasevidence-basedriskassessmentguidance,peerreviewandcomparativedatawillsupportsurgeonstoassesstherisk/benefitofusinganorgan.Researchwillleadtobetterbiomarkersoforganfunctionandhelpcliniciansdecidewhichorganwillbebestforwhichrecipientandimprovegraftsurvival,reducingtheneedforre-transplantationlater.

To achieve Outcome 3 the UK should:

• Increase the number of organs that are retrieved from both DBD and DCD donors.

• Increase the number of organs that can be transplanted safely, and provide surgeons with the information and guidance to make decisions about organ suitability.

• Improve transplant recipient survival by improving understanding of the donor organ/recipient compatibility.

How will these outcomes be achieved?

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14 Taking Organ Transplantation to 2020: A UK strategy

Theentiredonationandtransplantationpathwayhasdevelopedovertimeandcanbeunnecessarilycomplexandlengthy.Learningfrom‘lean’techniquesthathavebeenusedsuccessfullyelsewhereintheNHS,itshouldbepossibletosimplifyandspeedupprocessesandimprovetheserviceofferedtocliniciansandfamilies.Advantageneedstobetakenofthebenefitsofrecenttechnologicaladvances,forexamplemovingfromlaptopstotabletsormobilephoneswherethesecanhelpstaffworkmoresafelyandefficiently.ITsystemsandapplicationswillbere-developedtomeetmodernstandards,makingsupportsystemsmoreefficient,effectiveandeasierfortheclinicianswhorelyonthem.

Overthelastfiveyears,NHSBThasprovidedtrainingtoClinicalLeadsforOrganDonation,DonationCommitteeChairsandSpecialistNursesforOrganDonation.Generaltraininginorgandonationnowneedstobeavailabletomorekeystaffworkinginintensivecareandemergencydepartmentsandtraininginplanningandapproachingfamiliesshouldbemorewidelyavailabletoconsultantstaffinhospitals(thismodelhasalreadybeenimplementedinScotland).Aspecialisttrainingschemeforretrievalsurgeonsisplannedtostandardiseandaccredittheirtraining.

To achieve Outcome 4 the UK should:

• Support Regional Collaboratives to lead local improvement in organ donation, retrieval and transplant practice and promote organ donation.

• Review and improve the workforce, IT, systems and processes which operate throughout the donation and transplant pathway.

• Build a sustainable training and development programme which can be tailored to meet local needs, so as to support organ donation and retrieval.

Outcome 4

Action by NHSBT and Commissioners means that better support systems and processes will be in place to enable more donations and transplant operations to happen.

TheUK’sorgandonationandtransplantsystemsandprocessesneedupdatingandimprovingsothereisgreaterclarityaboutwhatisexpectedandavailableandtheprocessworksmoresmoothly.

Hospitalswith40ormorepotentialdonorsannuallyreceiveasimilarorgandonationservicetohospitalswithfewerthantenpotentialdonorsayear.Specialistnursesworklonghourstryingtomeettheneedsofthedonorfamily,caringforthedonortoimproveorganquality,gatheringinformationaboutthedonorandofferingorganstothetransplantcommunity.ClinicalLeadsofOrganDonation(CL-ODs)andDonationCommitteeChairsworkhardtochangehospitalsystemsandpracticebutmayfindthemselvesdoingsowithlittlesupportfromwithintheirorganisation.LearningfromtheexperienceintheUS,systemswillbeestablishedtospecifythelevelsofservicethathospitalsandNHSBTshouldprovideinrelation.SubjecttoregionalvariationsinGovernmentpolicy,thiswillinvolvethedevelopmentofcontractswithhospitals,clarifyinghowthedonorservice,providedjointlybythehospitalandNHSBTstaff,willwork.

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

The Regional CollaborativesThedevelopmentoftwelveRegionalCollaboratives,ledbyRegionalClinicalLeadsandRegionalDonationServiceManagers,hasbeensuccessfulinprovidingasupportiveenvironmentforClinicalLeads,ChairsandSpecialistNursestoworktogetheronhowbesttoincreaseorgandonation.However,theyoftengainonlylimitedinvolvementwiththeretrievalteamsandtransplantcentresthatimplanttheorgans.Organdonation,retrievalandtransplantationteamsneedtoworkmorecloselytogether,soastobuildtrustandsupportimprovements,particularlyindonormanagementandorganoffering.RegionalCollaborativeswillnowbringeveryonetogethertofocusonimprovementsthroughouttheclinicalpathway.

How will these outcomes be achieved?

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Taking Organ Transplantation to 2020: A UK strategy 15

Measuring successFocus and sustained collaborative effort by individuals and organisations is required for the UK to achieve the aim of matching the best in the world. It is important 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 UK aspiration.

Measure 1 Consent/authorisation for organ donation

Aim for consent/authorisation rate above 80% (currently 57%)7

Improvingconsent/authorisationratesisthesinglemostimportantstrategicaimandfundamentaltothesuccessofthestrategyasawhole.Spainachievedan84%consentratein2011,basedprimarilyonpotentialDBDdonors.IntheUKithasprovedmoredifficulttoobtainconsentforDCDdonors,whomakeupanincreasingproportionofourdeceaseddonorpool.UsingSpainasabenchmarkbuttakingaccountofdifferencesbetweenUKandSpanishdonorpools,achievingameasureofatleast80%consentwouldcompareveryfavourablywithEuropeancounterparts.Itwillbeachallengetoachievethis,particularlyforBlack,AsianandMinorityEthniccommunitieswherefamilyrefusalratesare66%.Butthechallengecouldnotbemoreworthwhilegiventhattherewardsfordonors,theirfamiliesandfororgantransplantrecipientsareenormous.

Measure 2 Deceased organ donation

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

ThedeceaseddonorrateintheUKhasincreasedbysevendonorspmpoverthelastfiveyears.Anothersuchincreasewouldmeanadeceaseddonorrateof26pmpintheUKandwouldbringallregionsuptothestandardofthebestperformingteamintheUK.GiventheconsiderablechangesintheUKoverthelastfiveyears,thisaimisverychallengingandwillnotbeachievedwithoutachangeinpublicattitudesandbehaviourandanimprovementinconsent/authorisationrates.ThisratewouldcompareveryfavourablyagainstthebenchmarkcountriesofSpain,Portugal,Croatia,USAandFrance(thetopperformingcountriesin2011),andaimsfortheUKtobeamongthetopfiveofcomparatorcountries.

7FiguresforWalesshouldbemeasuredseparatelyaftertheimplementationoftheplannedWalesHumanTransplantationBillin2015.

Measuring success

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16 Taking Organ Transplantation to 2020: A UK strategy

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%),and

• 12%oflungsfromDCDdonorstobetransplanted(currently7%).

*Kidney,liverandpancreas.

Thesemeasureswillbekeptunderregularreview,andsubjecttochangeasimprovedtechnologiesandtechniquesfororganpreservationbecomeavailable.

Anefficientorganoffering,retrievalandtransplantsystemwilluse:(i)suitabletriagearrangementssothatthereareminimaloffersofunsuitableorgans;(ii)effectivedonoroptimisationandorganperfusionandpreservationtechniquessothatorganqualityismaximised,and(iii)efficientorgan-offeringprocessessothatorganscanbedirectedtosuitablerecipientsasquicklyaspossible.Transplantratesoforgansfromdeceaseddonorswillincreasefurtherassuchsystemsdevelop.However,theUK’srateoforganutilisationalreadycompareswellwithothercountriesand94%ofactualdonorsresultinatleastonetransplantcomparedwith86%inSpainand87%intheUS.Nevertheless,5%moreorganstransplantedmeansthat5%morepatientswouldreceiveatransplantratherthanriskdeathonthetransplantlist.

Measure 4 Patients transplanted

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

Theultimateaimofthisstrategyistoincreasethenumberofpatientswhoaretransplantedandgiveeveryoneonthetransplantlistarealisticchanceofreceivingthelife-savingorlife-enhancingtransplantthattheyneed.Ifallthestepsinthedonationandtransplantationpathwayworkaswellaspossibleandmorepeopledonatetheirorgansthendeceaseddonorratesof74pmpshouldbeachievable.

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

Itwillbechallengingtoaimfor74transplantspmpbutachievingthisfigurewouldprovidelife-savingtransplantsformanymorepatientsandwouldmeantheUKmatchesworld-classperformance.

Measuring success

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NHS hospitals and staffMore organs will be usable and surgeons will be better supported to transplant organs safely into the most appropriate recipient.

Measuring success

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18 Taking Organ Transplantation to 2020: A UK strategy

Background to organ donation and transplantation in the UK and the development of the strategyFive years of progressTheOrganDonationTaskforcewaschargedwithidentifyinghowtheUKshouldimproveitsorgandonationperformance,whichwaslaggingbehindmanyotherWesternnations.TheTaskforcereportedinJanuary2008andmade14recommendations.8Itsuggestedthatfullimplementationoftherecommendationsmightleadtoa50%increaseinthenumberofdeceasedorgandonors.Sincethen,alltherecommendationshavebeenimplementedanddeceaseddonornumbershaveriseninlinewithexpectations.Thisisagreattributetoallthedonors,theirfamiliesandthedoctorsandnurseswhomadethispossible.Therearepeoplealivetodayfollowingatransplantwhowouldotherwisehavedied.

OrgandonationintheNHShasbeentransformed:therearemoreSpecialistNursesinOrganDonationtosupportfamilies,everyhospitalhasaccesstoadedicatedClinicalLeadandissupportedbyaDonationCommitteeandtherearededicatedorganretrievalteamsservingtheentireUK,24hoursaday.Cliniciansnowhaveaccesstoethicalandlegaladvicetohelpthemfacilitatedonation,theNationalInstituteforClinicalEvidencehaspublishedbestpracticeguidelinesandtraininganddevelopmentprogrammeshaveimprovedknowledgeandskills.RegionalCollaborativesbringtogetherleadersinorgandonation,topromotetheneedfordonorsandprovidesupportforserviceimprovement.Cliniciansincreasinglyvieworgandonationasanormalpartofend-of-lifecare.

Organ donation in the UKAlthoughattitudestoandsupportfororgandonationintheNHShavechangedconsiderably,someoutcomeswereunexpected.TheTaskforceanticipatedthatmostdonorswouldbepeopleinintensivecareunitswhohadbeendeclareddeadaccordingtoneurologicalcriteria,thatis,donorsafterbraindeath(DBD).Infact,thenumbersofpeopledyinginthiswayhasfalleninmostpartsoftheUK.

Patientswithnon-survivablebraininjuriesareassessedinemergencydepartmentsandwhendoctorsdeterminethatfurthertreatmentisfutile,thesepatientsandtheirfamiliesarealsonowofferedtheoptionoforgandonationviaestablishedreferralpathways.UKhospitalsarenowabletoofferdonationtothisgroupofpeople,knownasdonorsaftercirculatorydeath(DCD).Atpresent,DCDdonorscannotdonatetheirheartsandthiscontributestothelowlevelsofhearttransplantationintheUK.IthastakentimetobuildconfidenceintheprocessforDCDdonationandthereforetransplantnumbershavenotrisenatthesamerateasdonornumbers.FurtherdevelopmentsinDCDdonationarelikely:Spain9forexample,nowoffersdonationtopeoplewhohavediedfollowinganunexpectedcardiacarrestwhereresuscitationhasfailed.ApilotinScotlandseekstoreplicatetheSpanishexperience.

TheUKhasdevelopedlivingdonationinparttoattempttomeetthedemandfortransplants.Livingdonationiswhenarelativeorfriendor,inexceptionalcircumstances,ananonymousindividual,givesakidney(andmorerarelypartofaliver)toanotherperson.LivingdonationisthesubjectofaseparatestrategylaunchedinJanuary2012.10

IntheUK58%ofalldeceaseddonorsareDBDand42%areDCD.ThiscompareswithSpainwherein2011,91%ofdeceaseddonorswereDBDand9%wereDCD.Unlesstherearesignificantchangestoend-of-lifecareintheUKthispictureisunlikelytochange.

Appendix 1

8 Organsfortransplants:areportfromtheOrganDonationTaskforce,DepartmentofHealth,January2008.

9 Spainhasthehighestnumberofdeceaseddonorspermillionpopulationandisusefulcomparator.

10The NHSBT UK strategy for living donor Kidney Transplantation 2010-2014.FormallylaunchedJanuary2012.NHSBloodandTransplant.

Appendix 1 Background to organ donation and transplantation in the UK and the development of the strategy

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Taking Organ Transplantation to 2020: A UK strategy 19

The demand for transplantationEvidencesuggeststhatchangesinUKlifestylesanddiseaseprevalencewillmeanthattheneedforcardio-thoracicandlivertransplantswillcontinuetoincreaseinthefuture.Therearewide-rangingpreventionprogrammesunderwayacrosstheUKtopersuadepeopletolivehealthierlivesandreducetheincidenceofdiseasessuchasdiabetesandheartfailurewhichleadtoorganfailure.Thesehealthimprovementmeasurestoreducelifestyle-relateddiseasearewelcomebutareunlikelytoreversetheincreasingtrendwithinthenextsevenyears.Evenifthiswerenotthecase,thenumberofpeoplewhowouldbenefitfromtransplantation,particularlyhearttransplantation,farexceedsthenumbersoforgansavailable.WecansaywithsomeconfidencethattheUKwaitinglistconsiderablyunder-representsthetruenumberofpeoplewhocouldbenefitfromanorgantransplant.Theprevalenceofrenaldisease,however,appearstohavestabilised,buttherearestillnotenoughdonatedorgansavailabletomeetthecurrentrequirements.

Resourcing the strategyAtatimeoffinancialausteritysomepeoplemaybeconcernedthatincreasingtransplantationwilltakeresourcesfromotherareasofNHScare.Onthecontrary,workundertakenin201011identifiedthatthetransplantprogrammedeliveredacostsavingtotheNHSof£316millionandthatsavingshavethepotentialtoincreasefurtherasthenumberoftransplantproceduresrise.

Initially,noadditionalfundingislikelytobeneededtomoveforward:theneedistoworkdifferentlyratherthanincreaseresources.However,lookingahead,therearetechnologicaldevelopments,pilotinitiativesandotherprogrammescapableofbringingimprovements.Anactionplantogetherwiththefundingofsuchdevelopmentswillrequireseparateconsideration.Detailed,costedimplementationplansforallsuchchangeswillbeproducedandfundingsoughtfromthefourUKHealthDepartments.Thiswillincludeplansforambitiouspublicitycampaignswhichwillworktoshiftpublicattitudesandgainsimilaroutcomestothoseachievedfrompublicinformationcampaignsaimedatstoppingdrink-drivingandsmokingcessation.

How the strategy was developedOrgandonationandtransplantationisacomplexprocessinvolvingdyingpatients,theirfamilies,clinicalstaffinmanyhospitals(uptoninehospitalsmaybeinvolvedinanysingledonationandtransplantationprocess)andlaboratorystaff.Manyotherpeoplehaveaninterest:thosewaitingfortransplantsandtheirfamilies,transplantrecipients,donorfamilies,voluntarysectororganisations,peoplewhohavepledgedtodonatebyjoiningtheODRandthegeneralpublic.

NHSBTisco-ordinatingthisstrategyonbehalfofthefourUKHealthDepartmentsandtheNHSandhasconsultedwithhundredsofpeopleaboutwhatshouldbedonetoaddresstheshortageoforgansfortransplantation.Aswellaslisteningtopartnersandstakeholders,aportfolioofevidence12aboutUKperformancecomparedwithothercountrieswasconsidered.Cliniciansalsoconsideredtheclinicalandtechnologicaldevelopmentsthatmightaffectdonationandtransplantationoverthenextsevenyears.AgroupofinternationalandnationalexpertsmettoassessthestrategicprioritiesandplannedactionsandtoassureNHSBTthattheproposalswoulddelivertheexpectedoutcomes.Ithasnotbeenpossibletoincludeeverysuggestionbutacompanionreportoutlinestheideasthatarenotbeingtakenforwardaspartofthisstrategy.

11WestMidlandsSpecialisedCommissioningTeam:OrgansforTransplants:ananalysisofthecurrentcostsoftheNHStransplantprogramme;thecostofalternativemedicaltreatments,andtheimpactofincreasingorgandonation,October2010.

12PortfolioofEvidenceavailableat:www.nhsbt.nhs.uk/to2020

Appendix 1 Background to organ donation and transplantation in the UK and the development of the strategy

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20 Taking Organ Transplantation to 2020: A UK strategy

Actions of the detailed planAim to match world-class performance in organ donation and transplantation

Outcome 1 Action by society and individuals will mean that the UK’s organ donation record is amongst the best in the world and people donate when and if they can.

•Developnationalstrategiestopromoteashiftinbehaviourandincreaseconsent.

•Ensurethatitiseasytopledgesupportfororgandonationandonceapledgehasbeengiven,honourtheindividual’swish.

•IncreaseBlack,AsianandMinorityEthniccommunityawarenessoftheneedtodonate,tobenefittheirowncommunitiesandprovidebettersupportforpeopleinthesecommunitiestodonate.

•LearnfromtheexperienceoflegislativechangeinWalesandelsewhere.

Specific Actions Responsibility

Developnationalstrategiestopromoteashiftinbehaviourandincreaseconsentandtestprogresswithregularpublicsurveys.

UKHealthDepartments,NHSBT

TherelevantGovernmentHealthDepartmentsshouldexplorewithEducationDepartmentsthepossibilityofincorporatingdonationandtransplantationissuesintoschoolscurricula.

AllUKHealthDepartments

AllGovernmentsshouldprovideregularreportstoParliament/AssemblyonprogressintheirnationandHealthMinistersshouldhaveadutytopromoteorgandonationandtransplantation,effectivelyleadingtoasignificantimprovementinpublicattitudesandconsentfororgandonation.

AllUKGovernments

Thereshouldbenationaldebatestotestpublicattitudestoradicalactionstoincreasethenumberoforgandonors.Forexample,whetherthoseontheOrganDonorRegistershouldreceivehigherpriorityiftheyneedtobeplacedonthetransplantwaitinglist.

UKGovernment,NHSBT

EnsurethattheintroductionofasystemofdeemedconsenttoorganandtissuedonationinWalesasdescribedbytheHumanTransplantation(Wales)Billisassuccessfulaspossibleandlearnfromthisexperience.

WelshGovernment,NHSWalesandNHSBT

DevelopacommunityvolunteerschemetosupportTrust/HealthBoarddonationcommitteestopromotethebenefitsofdonationinlocalcommunities,particularlyamongstgroupswithlittletraditionoforgandonation.

NHSBT,voluntarysector

FollowingtheexperienceintheUSA,ensureeveryonewhohasmadeadecisiontodonateduringtheirlifehastheirwisheshonourediftheydieincircumstanceswheredonationispossible.

NHSBT,NHS

Appendix 2

Appendix 2 Actions of the detailed plan

Susan Lee Clarke received a liver transplant in 2007, she is pictured here with her son Harry at the opening of the donor memorial wall at the Royal Free hospital, London.

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Taking Organ Transplantation to 2020: A UK strategy 21

Outcome 2 Action by NHS hospitals and staff will mean that the NHS routinely provides excellent care in support of organ donation and every effort is made to ensure that each donor can give as many organs as possible.

•Increasethenumberofpeoplewhoareabletodonatefollowingbraindeath.

•IncreasethenumberofpeoplewhoareabletodonatefollowingcirculatorydeathandlearnfromtheScottishpilotondonationafterfailedresuscitation.

•Providehospitalstaffwiththesupport,training,resourcesandinformationtheyneedtoprovideanexcellentorgandonationservice.

•Ensureeverydonor’scare,priortoretrieval,boostsorganquality.

Specific Actions Responsibility

End-of-lifecarestandardsshouldpromoteBSDtestingasthepreferredmethodofdiagnosingdeath,wherethiscanbeachievedandisinthebestinterestsofthepatient.

Professionalbodies,nationallegalandethicsorganisations

End-of-lifecarepracticesshouldbereviewedtoestablishwhethertheymightbeadjustedsoastopromotedonationafterDBD.

Professionalbodies,nationallegalandethicsorganisations

EstablishaNationalReferralServicetoimprovesupporttohospitals. NHSBT

ScopethepotentialfordonationfollowingunexpectedcardiacarrestintheUK,learningfromthepilotprogrammeinScotland. NHSBT,NHS

Familiesofpotentialdonorswillonlybeapproachedbysomeonewhoisbothspecificallytrainedandcompetentintherole,trainingpackagesandaccreditationwillbeprovidedtothosewhowishtodevelopthiscompetence.

Professionalbodies,NHS,NHSBT

WorkcollaborativelytoreduceinstancesofobjectiontoorgandonationfromtheCoronerandProcuratorFiscalserviceandthepolice.

Governments,NHSBT

Publishhospitaldatatoinclude:brain-stemdeathtestingrates,donorreferralrates,familyapproachrates,SpecialistNurseinvolvementandotherkeyareas.

NHSBT

Appendix 2 Actions of the detailed plan

Susan Lee Clarke received a liver transplant in 2007, she is pictured here with her son Harry at the opening of the donor memorial wall at the Royal Free hospital, London.

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22 Taking Organ Transplantation to 2020: A UK strategyAppendix 2 Actions of the detailed plan

Outcome 3 Action by NHS hospitals and staff will mean that more organs are usable and surgeons are better supported to transplant organs safely into the most appropriate recipient.

•IncreasethenumberoforgansthatareretrievedfrombothDBDandDCDdonors.

•Increasethenumberoforgansthatcanbetransplantedsafely,providingsurgeonswiththeinformationandguidancetomakedecisionsaboutorgansuitability.

•Improvetransplantrecipientsurvivalbyimprovingunderstandingofthedonororgan/recipientcompatibility.

Specific Actions Responsibility

Improvedonormanagementforpotentialcardiothoracicdonors,providinga24/7servicetoassistifpilotschemesproveeffective. NHSBT,NHS

Reviewwhatpre-morteminterventionscouldlegallyandethicallybeundertakentomaximisethepotentialfororgandonation(suchastheadministrationofheparin,electiveventilationetc.).

UKHealthDepartments,UKDonationEthicsCommittee,professionalbodies

EvaluatenewtechniquesandtechnologiesforthepreservationofretrievedorganswithaviewtotheiruseintheUK.

NHSBT,professionalbodies

Developasystemofpeerreviewthatisunderpinnedbyasetofagreedstandardsforretrieval/transplantcentres.

TransplantCommissioners,NHSBT,professionalbodies

Provideguidanceonlevelsofacceptableriskinrelationtoofferedorgans,particularlyfromextendedcriteriadonors,relevanttotheindividualrecipient’sneedsandwishes.

Professionalbodies,NHSBT

Publishcentre-specificrisk-adjustedpatientsurvivalfromlistingaswellasfromtransplantation. NHSBT

Ensurecliniciansareawareofandfollow,bestpracticetoincreasepatientandgraftsurvival.

Commissioners,NHSBT,professionalbodies

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Taking Organ Transplantation to 2020: A UK strategy 23

Outcome 4 Action by NHSBT and Commissioners means that better support systems and processes will be in place to enable more donations and transplant operations to happen.

•SupportRegionalCollaborativestoleadlocalimprovementinorgandonation,retrievalandtransplantpracticeandpromoteorgandonation.

•Reviewandimprovetheworkforce,IT,systemsandprocesseswhichoperatethroughoutthedonationandtransplantpathway.

•Buildasustainabletraininganddevelopmentprogrammetosupportorgandonationandretrieval.

Specific Actions Responsibility

Developaworkforcestrategyfortheorgandonationservicewhichwilltailortheservicetotheneedsofindividualhospitalsandseektoprovideaworkforcethatisfocusedonsupportingthepotentiallyconflictingdemandsofprovidingaservicetothedonorfamily,donormanagementanddonorco-ordination.Thismaybeconfiguredinoneormorerolesastheneedsoftheservicedictate.

NHSBT,NHS

SubjecttovariationsinGovernmentpolicy,agreeaformalcontractfororgandonationwithhospitalsspecifyinghowhospitalsandtheNHSBTdonationserviceworktogethertoachieveexcellence.

NHSBT,NHS,UKHealthDepartments/Commissioners

RegionalCollaborativestoleadlocalimprovementinorgandonation,retrievalandtransplantpracticesandinlocalpromotionofdonationandtransplantation.

NHSBT,NHS

Ensurethattransplantcentreshavethecapacityandsurgicalexpertiseandotherclinicalskillstomeetthedemandsfortransplantationasdonornumbersincrease.

Commissioners

Developtrainingprogrammestosustainandincreaseclinicians’organdonationunderstandingandexpertise. NHSBT

Optimisetheprocesses,timescales,resourcesandsupportingITateverystageofthepathwayfromdonoridentificationtolong-termsurvival.

NHSBT,NHS,Commissioners

Reviewthecurrentprocessesfordonorcharacterisation(especiallyformicrobiologyandtissuetyping).

NHSBT,Commissioners

Developandimplementatrainingandaccreditationprogrammeforallretrievalsurgeonsandextendthistosupportingpost-mortemtechnologieswhentheseareintroduced.

NHSBT,professionalbodies

Investigatethefeasibilityandimplicationsfortheprovisionofa24/7provisionofexperthistopathologyadvice.

Commissioners,NHSBT

Appendix 2 Actions of the detailed plan

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A collaborative UK strategy between

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