bulletin - microsoft...on organ donation in a wide-ranging study this autumn, healthcare...

In this issue: Ten-year plan for transplant services. World’s first artificialintelligence model for liver matches. British team strikes gold in WorldTransplant Games. National Transplant Week. Bid to stop “transplant tourism.”Black and Asian campaigns.Teaching pack for Scottish schools.

The newsletter for everyone involved in organ transplantation and donationIssue 48 Autumn 2003

bulletin UK Transplant

NEWS

There have beencomplete changes toMinisterial appointmentsin England since I lastwrote. However, bothJohn Reid, Secretary ofState for Health andRosie Winterton, Ministerfor Health who hasspecific responsibility fortransplantation hadintroductions to theimportance of organdonation andtransplantation veryearly in their newministerial appointments.

John Reid launchedTransplant Week duringhis first week in post andRosie Wintertonpublished Saving Lives,Valuing Donors – ATransplant Frameworkfor England.

UKT warmly welcomesthe TransplantFramework for England.It sets out very clearlythe Government’scommitment to donationand transplantation andclarifies the role that theNHS, UK Transplant andthe public and private

sectors can take inincreasing organdonation.

UKT has since issued theUK Hospital Policy forOrgan and TissueDonation to all acutehospitals in the UK. Co-ordinators will work withall acute trusts in theirpatch to discussimplementation of thepolicy in an attempt toensure that all familiesare given theopportunity fordonation. I am delightedthat this has alreadystruck a chord with someChief Executives who areasking for presentationson the whole issue oforgan and tissuedonation for their TrustBoard.

However, as I sayrepeatedly, there is muchmore to do. Thesepolicies are only as goodas the people behindthem working hard toensure that they areintegrated into practiceand deliver real results.On that score currentperformance is justsatisfactory but withnoticeable and welcomeimprovements in the livekidney transplant rate.UKT continues to begrateful for everyone’shard work and support.

Bulletin Autumn 20032

CHIEFLY

bulletinIS PUBLISHED QUARTERLY

ISSN 1472-0507Copy date for Winter 2003

editionFriday 31 October

Contributions should be sentto the Editor

Clare Hanson-Kahn,Communications Directorate

UK TransplantFox Den Road, Stoke Gifford

BRISTOL BS34 8RRTel: 0117 975 7562Fax: 0117 975 7515

E-mail:[email protected]

Designed byWasley Knight Communications

Printed byLeckhampton Printing Company

Front cover picture:Pedalling together, Gareth Pons(left) aged 11 who is waiting fora kidney transplant, with cousin

Kathy and brother Marcus, takingpart in Bristol’s “Life Cycle” bike

ride as part of NationalTransplant Week (see pages 6-7)Credit: Barbara Evripidou/Bristol

Evening Post

Sue Sutherland Chief Executive UK Transplant

Donor mother’s pleaRona Raphael (second right) joined forces with UK Transplant at the NHS ConfederationExhibition in June. Her message to NHS chiefs was that relatives who are not given thechance to donate are being denied the comfort that can come from knowing that, throughtheir own tragedy, they have helped someone else to live. Rona’s daughter Nicola died twoyears ago and Rona was not asked about organ donation. She approached hospital staff tocarry out her teenage daughter’s wishes to donate her organs after her death.

Bulletin Autumn 2003 3

NEWS

Saving Lives, ValuingDonors – A TransplantFramework for Englandis the Government’slong-awaited ten-yearplan for transplantservices, launched in July2003.

The framework sets out keyaims for organ and tissuetransplantation anddescribes good practicebased on national andinternational evidence.

It states: “Our vision is of apatient and donor-centredservice which achievesstandards of excellencebuilt on a genuinepartnership between thepublic, charities, the NHSand commercialorganisations – apartnership between thosein need and those who canhelp.”

The framework identifiesthe part the Government,individuals, the NHS andother stakeholders can playin:

• encouraging people todonate organs and tissue

• raising the quality andeffectiveness oftransplant services

• improving the clinicaloutcomes and quality oflife of people whoreceive the gift of anorgan or tissue

• increasing the supply ofviable organs and tissuefor transplantation

• accrediting tissue banksto ensure high-qualitytissue fortransplantation.

Its aims are to encouragethe NHS, commercial,voluntary organisations andthe general public to playtheir part in:

• ensuring at least 16 million people areregistered on the OrganDonor Register by 2010

• developing a transplantservice that respects thedignity of donors and issensitive to the needs ofdonor families, friendsand transplantrecipients

• optimising the numberof potential organ andtissue donors and thenumber of high-quality,safe organs and tissuefor transplantation

• increasing transplantrates to save lives andimprove the quality ofthe lives saved.

Health Minister RosieWinterton said: “Organ andtissue transplantation is oneof the major medicalsuccess stories of ourtime… our vision is of asociety which values thebenefits of transplantation,in which people are willingto donate and tell thoseclose to them of their wish.We aim to provide apatient-centred NHS whichvalues people and enablesall those who wish todonate to do so, andprovides first rate transplantservices to make the bestpossible use of all donated

organs and tissue.”

Saving Lives, ValuingDonors is atdoh.gov.uk/transplantframework

Ms Winterton MP wasappointed Minister of Stateat the Department ofHealth in June 2003, andher responsibilities includetransplants and organdonation.

Ms Winterton worked as apublic affairs consultant andas the office manager forJohn Prescott’s Westminsteroffice before being electedMember of Parliament forDoncaster Central in1997.Between 2001 and June2003 she was ParliamentarySecretary at the LordChancellor’s Department.

Saving Lives, Valuing Donorssets out key transplant aims

Rosie Winterton meets transplant patients at Guy’s Hospital in London at the launch of theten-year plan.

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An artificial intelligenceexpert from Finland hasbeen recruited by aBirmingham hospital todevise a unique systemto match up liver donorsand recipients.

Yrjo Hiltunen will beadapting technology used inmobile phones to create thefirst programme of its kindin the world at the QueenElizabeth Hospital inBirmingham.

It will rapidly process 80different factors measuringthe condition of both thedonor and patient receivingthe liver. This informationwill then be analysed inorder to calculate thesurvival rate followingtransplantation.

By ensuring patients anddonors are better matched,it is hoped that the systemcould provide a majorbreakthrough, ensuringmore transplants aresuccessful.

Liver transplant patientDavid Redwood, who hasraised £24,000 for thedepartment at theUniversity HospitalBirmingham NHS Trust,which runs the QueenElizabeth Hospital, hasfunded the initiative.

Doctors know that thesuccess of a transplantdepends on the health ofboth the recipient and thedonor. But once a donor isidentified, the organ mustbe transplanted within

hours, leaving doctors littletime to complete athorough assessment.

Currently, doctors matchdonors to recipients basedon blood groups and thesize of the liver.

Professor James Neuberger,consultant liver surgeon,said: “The programme hasenormous implications if itis valid. Most systems forpredicting survival are basedon the condition of thepatient. This will additionallyconsider the condition ofthe donor, as we know thishas a very significant impacton the outcome.

“Once we are told a donorhas been identified, wehave a very short period oftime to work in. For

example, we may benotified in the afternoon,the organ is retrieved in theevening and the transplanttakes place at 8am thefollowing morning.”

Mr Hiltunen will spend sixmonths at the QueenElizabeth Hospital usingneural networking – acomponent of thetechnology, which is used inmobile phones – to devisethe new system.

The different factors underconsideration include theage and gender of both thedonor and the recipient, awide range of laboratorytests and the intensivesupport required for bothdonor and recipient up tothe day of the transplant.

NEWS

World’s first artificial intelligence model for liver matches

Staff views soughton organ donation

In a wide-ranging study thisautumn, healthcare professionalswill be asked about theirattitudes to organ donation.

Public research (see Bulletin Issue47, Summer 2003) shows us that90% of people support organdonation in principle but how dohealth professionals feel? The newresearch will give us a betterunderstanding of views about organdonation amongst NHS staff – andif their professional roles have anyimpact on those views.

The researchers, Research Quorum,will talk to hundreds of staff inhospitals with and withouttransplant units. A wide range ofpeople including chief executives,nurses, doctors, GPs, transplant unitstaff, intensivists and support staffsuch as bereavement officers,receptionists and porters will beasked about:

• their views on organ donation• how their work environment

affects their views

• how they find out informationabout organ donation.

The research will build up a pictureof attitudes amongst staff and thebest ways to encourage positivefeelings about donation. This willpave the way for an awarenesscampaign in 2004, which willhopefully increase staff support fororgan donation. This could alsoresult in more families beingapproached about donation andhelp increase donor rates.

Angie Burton, UK Transplant’sMarketing and Campaigns Managersays: “It may sound strange but wereally have no idea how the majorityof NHS staff feel about organdonation. As individuals and as aworkforce they are potentiallypowerful advocates for organdonation. This research will help usget a better understanding of theiropinions and help us find the rightway to encourage positive attitudesright across the NHS.”


NEWS

The British team tookhome more medals thanany other country at thisyear’s World TransplantGames in France in July.The team won anamazing 143 medals (foradult competitors): 62gold, 39 silver and 42bronze. Ranked second,the USA won 91 medals.

As many as 1,500 athletes,including 100 children,participated from 64countries and the gameswere a real celebration ofthe success oftransplantation. This is thefirst time that a junior teamwas entered from GreatBritain.

Some of the British team

barely touched the groundas they flew back to theUK and then travelled onto Keele to take part in thisyear’s British TransplantGames. More than 700athletes, including 200children, took part.

The British TransplantGames have been stagedsince 1978 in 13 hostcities. Kaylee Davidson, aheart recipient, was thefirst child competitor in1989 when she was justtwo years old.

Now 16, Kaylee competedin both the World andBritish Transplant Games. InFrance, Kaylee won a silvermedal for ten-pin bowling

and a jointsilver medal inthe badmintondoubles withher partnerHannah Swift– also a heartrecipient fromthe FreemanHospital.

Her mother,Carol, is thechildren’stransplantteam leader for theFreeman Hospital. She said:“Participation in the BritishTransplant Games is theultimate achievement forthese children. Whetherthey are first or last, it

simply doesn’t matter –these children are allwinners.”

British team strikesgold in WorldTransplant Games

Silver medal winner Kaylee Davidson.

Full speed aheadHelen Mawdsley, who had alife-saving liver transplant justseven years ago, is beingsponsored by UK Transplant inthe New Era Novice, Open andPowerbike Championship.

UKT has provided Helen with alarge tent emblazoned withgiant organ donor card symbolsas a team HQ, pit and organdonation information centre.

Helen said: “The tent is a realeye-catcher. I'm gettingfantastic feedback from peopleand I'm hoping we canencourage thousands of racefans to talk about organdonation and join the NHSOrgan Donor Register.”

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NEWS

This year’s TransplantWeek held in July, thethirteenth organised byTransplants in Mind(TIME), was a greatsuccess according to SueJohnstone, TIME’sadministrator.

“The response” said Sue“has been really fantastic.Donor liaison nurses andtransplant co-ordinators allover the country haveorganised events and thedemand for publicitymaterials was far higherthan any other year.”

John Reid, the HealthMinister, launchedTransplant Week at theLondon Eye. Healthofficials, healthprofessionals, transplantrecipients and two specialguests attended the event- Louisa Harrington, whowas waiting for a heart,and Hannah Pudsey, whohad a heart transplant in2001.

Sadly, Louisa, who wonaffection and respect fromso many of us, died at theend of July. Louisa wasborn with a defective heartand, after waiting for 13

months, had her transplantat Great Ormond StreetHospital but died followinga difficult post-operativeperiod.

At the launch of TransplantWeek, Louisa had asked MrReid the simple but veryimportant question – did hecarry a donor card? Mr Reidhad to admit he didn’t, buthe signed up to the NHSOrgan Donor Register thenand there.

During Transplant Week,awareness-raising events,that both celebrate thesuccess of transplantationand stress the urgent needfor more organ donors,were organised up anddown the country byhospitals, transplant co-ordinators, charities,transplant patients, andfamilies.

Brave Louisa made special markon Transplant Week launch

One hundred white balloons were released at Royal BoltonHospital on National Donor Day, as a tribute to all thepeople who have donated at the hospital. Little AlexGreenhalgh, whose mother Zoe died last year and donatedher corneas, was the guest of honour, and he was heard tosay: “They’re all going to the stars to my mummy.”

Louisa Harrington with John Reid, the Health Minister, at the launch of Transplant Week.

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Freedom ofInformationIn line with all otherpublic bodies UKT isadopting and maintaininga Freedom of Information(FOI) publication scheme.

This will be available onthe website as well as inprinted form by 31October 2003.

For further informationcontact Judy Watt tel:0117 975 7555.

TeamworkThe article in SummerBulletin “After they’vegone” was written byMagi Sque, Tracy Longand Sheila Payne.


NEWS

Helen Aldridge (above, second left),of Salisbury District Hospital,spends half her time as critical careoutreach sister and half as donorliaison sister, so she was able torecruit the rest of the outreachteam to promote Transplant Weekalong with staff from the MedicalAdmissions Unit.

Helen said: “We attracted a greatdeal of interest and we found thata large proportion of the visitors tothe stands were card carriers buthad not registered, which theywere sent off to do!

“Several people returned onfollowing days to inform us thatthey were impressed with thewebsite, especially the facility to e-mail their wishes to friends.”

Royal stamp of approvalA set of commemorativestamps to celebrate the successof organ donation andtransplantation is on the cards.

Royal Mail has included thesuggestion on their list of possiblestamp subjects for 2005, afterbeing approached by Penny Hallett,UKT’s Communications Director.

The idea is one of a numberreceived by the Royal Mail to markanniversaries, themes and events.The year marks the centenary ofthe world’s first cornea transplant,the 40th anniversary of the firstcadaveric kidney transplant in theUK and the 35th anniversary ofthe introduction of the organdonor card.

Penny said: “Royal Mail will nowcarry out market research involvingfocus groups and a telephone pollamongst a cross-section of the UKpopulation to determine thepotential popularity of organdonation and the other subjectson this list. A shortlist will then bedrawn up and submitted to theRoyal Mail Executive Board forapproval following consultationwith the Stamp AdvisoryCommittee, an independent body.The selected designs are thensubmitted to the Queen for finalagreement.

“We should know early in 2004whether we have beensuccessful.”

Outreach teamhelps promoteTransplant Week

Donor liaisonsister trainingA second UKT-organisedtraining course was held duringMay and July for the ten newdonor liaison nurses appointedin this financial year.

The training covered practical,theoretical, legal and ethicalissues. This included learningto identify potentialheartbeating, non-heartbeatingand tissue donors; analysingand discussing the needs ofthe donor family and thosecaring for the potential donor;and investigating the ethicaldilemmas involved in organand tissue donation.

Fiona Wellington, DonorTransplant Co-ordinatorRegional Manager at UKT, whoorganised the course said: “Animportant part of the course isall about networking. Thecourse was residential and wasa really good way for thenurses to get to know eachother. They were a greatgroup, who made livelycontributions and asked lots ofquestions.”


Several large companies have used UKT’s organ donation e-mail, speciallydesigned to load onto company e-mail systems. At the simple click of a buttonstaff can open up the e-mail and go directly to the registration form on UKT’swebsite. The e-mail is cheap, easy to use and very effective. If you know alarge organisation who might be interested in supporting organ donation thisway, contact Angie Burton, UKT’s Marketing and Campaigns Manager on0117 975 7495 for details.

NEWS

Visits to the UKT website continue to increase. The number of visits tothe site was 46,720 during the quarter April-June 2003, an increase of57% (up from 29,816) compared to the previous quarter. The maximumnumber of visits per day is over 1,300.

The “Sign me up” pages are receiving their fair share of visits, and severalmodifications have been made as a result of feedback from visitors. Over2,000 people actually registered via the website during the quarter.

All the information from the old nhsorgandonor.net website has now beenincorporated into the UKT site so please check that all the links you use are tothe registration pages on the UKT site. The recommended link is:

http://www.uktransplant.org.uk/how_to_become_a_donor/how_to_become_a_donor.htm

Publications added to the website, in addition to the religious leaflets, includeHospital Policy for Organ and Tissue Donation, the quarterly Renal Balance ofExchange and annual points scoring poster for the national kidney allocationscheme.

We are always happy to encourage organisations to link to our website, withor without a reciprocal link from our site. We have standard text that can beused when a link is made. Please contact [email protected] forfurther information.

Huge rise in UKTwebsite ‘hits’

Truckfesthauls insupportScottish truckers drove home themessage that organ donation saveslives at a weekend Truckfest inEdinburgh in August.

Chairman of the Scottish Truckers’Club, Gordon Sutherland, took theinitiative and other club membershave rallied round to promoteorgan donation.

Gordon said: “Truckers are bighearted people and I knew wecould count on their support.Truckfest is a huge event withthousands of visitors and the idealtime to talk to people abouthelping someone else. I put thedonor campaign idea to the clubmembers and everyone agreed toback it.”

Vote for LifeNew guidance recently issued bythe Electoral Commission has dealta blow to this year’s Vote for Lifecampaign.

The Commission circulated a legalopinion to all councils suggestingthat participating in the life-savingscheme risked breaching theRepresentation of the People Act. Itsuggested that inclusion ofanything other than materialrelating to the electoral registrationprocess could be unlawful.

Thirty-seven councils have told UKTthat they feel unable to participatebecause of advice received from theElectoral Commission including 16that withdrew having initiallyundertaken to run the full scheme.

Vote for Life was piloted in 1999.Last year it was the third largestsource of new registrations to theODR, with over 412,000 responsesfrom 57 councils.

Companies adopt organ donation e-mail


UK Transplant runs severalmajor campaigns as well asproviding support where it canto local and regionalpromotional activities. A keytarget for 2003-04 is to get moreblack and Asian people toregister on the NHS OrganDonor Register.

Black and Asian people are threetimes more likely to suffer fromconditions that can lead to the needfor a transplant but they currentlyrepresent less than 1% of peopleon the NHS Organ Donor Register.Two separate campaigns arerunning this year, specificallydesigned to encourage more peoplefrom each community to register.

Comedian Curtis Walker fronts the“Be part of the solution” blackcampaign for the second yearrunning. Well-known and well likedby all age groups he is an effectiveadvocate for more black people toregister. Focused amongst the largeblack populations in London andthe West Midlands, the campaignwill feature:

• radio advertising on stations withmany black listeners

• an “infomercial” on MTV Base, aspecialist black music channel

• posters in hair salons, barbershops, hospitals, clinics, libraries,community centres, cafés and atgrass roots roadshows

• an outdoor poster campaign inJanuary and February 2004

• postcards distributed at cinemasin cities with large blackcommunities

• newsworthy activity such aschildren’s BBC (CBBC) regularsDevin and Reggie wearing T-shirts specially designed byfashion designer Wale Adeyemiand a record sleeve featuring

FEATURES

Reggie (left) and Devin, CBBC Smile presenters, support the black campaign.

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Curtis Walker sent to DJs toencourage them to talk aboutorgan donation on air.

For the first time ever, the Asiancampaign is visiting Asian festivalsand melas around the country in aneffort to tell more people aboutorgan donation and the NHS OrganDonor Register.

Anjna Raheja from Media Mogulswho are organising the stands atthe melas says: “These grass roots,community events are a greatopportunity to talk to Asian peopleabout the issues facing them inmore detail, answer their questions,give out leaflets in communitylanguages and encourage more

people to register.”

Later in the year the campaign will:

• visit freshers fairs at 12universities around the UK withlarge numbers of Asian studentsand run promotions in studentunions and at student eventsthroughout the autumn andspring

• run specially organised nights atclubs popular with young Asianpeople in London.

If you want to find out more aboutthese campaigns contact AngieBurton at UK Transplant.

E-mail:[email protected]

Black and Asian campaignsbreaking new ground


FEATURES

British MEP Robert Evans iscalling for a ban on Europeancitizens from buying organsabroad and prosecution for thosethat do. Buying or selling organsis banned in Britain, but over thepast few years there has beenincreasing concern over“transplant tourism”, wherepeople travel abroad and pay fororgans outside the EuropeanUnion.

Mr Evans, vice-chairman of the EUassembly’s justice and home affairscommittee, is involved innegotiations to draw up legislationin the European Parliament to closethis “legal loophole”. Legislationwould set out common rules andpenalties for all EU citizens whoattempt to buy organs both withinthe EU or elsewhere.

Proposals will be discussed andvoted on in the European Parliamentat the end of October, but not allmember states are in support.Imogen Sudbury, Mr Evan’sParliamentary Officer, explained:“Although the UK is keen, some ofthe member states have reservationsbecause they want to be able to fixtheir own penalties”.

In a memo to the EuropeanParliament Mr Evans said:

Trafficking in organs

Increasingly, reports are appearing inthe media alleging that criminalgangs are trafficking, murdering and

even “breeding” human beings fortheir organs. These reports, whiledisturbing, are often sensationalisedand there is little conclusive evidenceabout the extent and nature of theillicit organ trade.

“However, a number of seriousstudies indicate a growing problemin many parts of the world,especially in Eastern Europe, Indiaand China. A recent Council ofEurope report refers to the situationin Ukraine, Russia, Bulgaria, Romaniaand Georgia, where trafficking inorgans appears to be extremely wellorganised and extremely mobile,involving a network of “brokers”,

qualified medical doctors andspecialised nursing staff.1

Transplant tourism

“On the other hand, the practicewhereby wealthy patients travelabroad to developing countries tobuy organs from living donors is welldocumented. Since the 1980s, thenumber of cases of ‘transplanttourism’ has continued to rise andfurther growth is expected as thedemand for organs outstrips supply,and the internet makes it easy toidentify potential donors. Althoughthis type of commercial transaction isvery different from the use ofviolence, fraud, threats or abductionto obtain organs, it still poses bothmoral and practical concerns.

“The removal of an organ from adonor living in extreme poverty, whohas invariably been persuaded togive his or her consent by the falsepromise of a better life, can only beviewed as a gross violation of humanrights and dignity. The health of thedonor usually deteriorates rapidlyafter the operation, as does that ofthe recipient, who then representsan added strain on the medicalservice of his or her home country.

“Furthermore, there is clearly a linkbetween ‘transplant tourism’ andorganised crime, since it would benaive to suppose that a patientcould identify and buy and organisethe transplant of a matching organwithout the help of a network ofintermediaries and medicalprofessionals.

Bid for Europeanlegislation to stop“transplant tourism”

Robert Evans MEP, who is workingon legislation to stop transplanttourism.

“


National legislation

“Whilst organ trafficking is illegal in14 out of 15 European Unionmember states, significant loopholesstill remain. In all member states,with the exception of Austria,payment for organs beyondreasonable compensation is strictlyforbidden. However, penal law inthis area varies from country tocountry. Moreover, there is nothingto stop most European citizens fromtravelling abroad to purchase organsfrom living donors in countrieswhere the practice is not illegal.Germany is the exception, havingintroduced an extra-territorialityclause, which makes it illegal forGerman citizens to purchase organsanywhere in the world.

Action at European Union level

“Currently, organised criminalnetworks are able to exploit thedifferent legislation in member statesand the forthcoming enlargementsof the EU in 2004 and thereaftercould potentially open a lucrativetrading route. European level actionis therefore urgently needed toharmonise the definition of relatedoffences and the sanctionsapplicable.

“The Hellenic Republic has set outproposals for new legislation withcommon definitions of offences andpenalties for criminal action. Theproposals also introduce an elementof extra-territoriality, so thatindividuals who seek to purchaseorgans from third country nationals,even outside the EU, would becommitting an offence under EUlaw.

Mr Evans hopes that new legislationwill deter would-be transplanttourists and will also tackle thecriminal networks and intermediariesinvolved. In a press release Mr Evanssaid: “Due to poor medicalstandards, inadequate nutrition andpoverty in their countries of origin,donors’ health inevitably deterioratesrapidly after the operation, forcingthem either to live on dialysis for therest of their lives or themselves beginthe unending wait for a transplant in

far worse conditions. Urgent actionis needed to stop this outrage toequality and human dignity.”

He added: “Legislation can only beseen as one part of the solution.Transplant tourism is driven by thecritical shortage in organs availableand in order to tackle the problem itis essential to address its rootcauses…we must do more to raiseawareness of the need for people tocome forward as potential donors.”

UK Transplant’s recent nationalsurvey revealed that nine out ofevery ten people in the UK supportorgan donation in principle. Yet lessthan one in six people – 18% of theUK population – has registered theirwishes on the NHS Organ DonorRegister (ODR).

Although “transplant tourism” hasbeen hitting the headlines it is notknown how many people pay fortransplants abroad. Earlier this yearThor Andersen travelled to India to

buy a kidney and he is the firstBritish resident who has admittedpublicly to doing this.

Last October, UKT contacted anumber of kidney transplant centresto find out how many patients hadpresented following a kidneytransplant outside of the UK. Theywere asked to report all cases fromthe past and to notify all futurecases. The figures show that since1974 a total of 90 people who hadkidney transplants abroad are beingfollowed up in the UK. The majorityof patients told doctors that theyhad had their transplants in India(35) and Pakistan (16).

A report from the EU assembly’shealth committee: Trafficking inorgans in Europe can be found atwww.coe.int

1 Trafficking in organs in Europe, Doc.9822.Report by Mrs Ruth-Gaby Vermot Mangold,Council of Europe. June 2003

”


RESOURCES

Living kidneydonation studyResults of a two-year study tocollate information on thepractice of living kidney donationhave been published. This studycompared practice at all renaltransplant centres in the UK andIreland in 2000 and 2002.

The study found that there iswidespread application of livingkidney donation in the UK.Minimal access donornephrectomy is offered at a smallnumber of centres, but manyhave plans to introduce this intotheir practice.

The results showed that 27 (outof 28) centres performed livingkidney donation in the year 2000,falling to 24 in 2002.Consultants reported 356operations were carried out in2000, representing 19% of allkidney transplants, and 403 in2002, representing 23% of allkidney transplants. Three centresoffered laparoscopic donornephrectomy in 2000, and fivedid so in 2002.

For further information contact:Nicholas Brook, Division ofTransplantation

The University Department ofSurgery, Leicester GeneralHospital. E-mail:

[email protected]

A new resource, OrganDonation Teaching ResourcePack, is being launched for usein secondary schools in Scotlandthis autumn.

The pack is designed for teachers touse in Personal and Social Educationand Religious and PhilosophicalStudies. It has attracted strongenthusiasm and support from thetransplant community.

John Forsythe, Chairman of ScottishTransplant Group, said: “The packhas been welcomed by teacherswho wish to have a subject whichdemonstrates the value ofdiscussion and informed argumentin arriving at important decisions.

“It aims to inform young peopleabout many of the subjectssurrounding transplantation and itwill allow them to make up theirminds regarding these difficultissues. We also hope that they willextend the discussion to otherswithin their families.”

Scotland’s Health Minister, MalcolmChisholm, who launched the pack,said: “This is a remarkable

initiative. Scotland appears to bethe first country in the world todevelop such a resource pack foruse in schools. All those involved init should be very proud.

“Apart from its intrinsic value as ateaching resource, the developmentof this pack has the potential, intime, to create a generation whocan make informed choices aboutorgan donation. These materialshave been specifically written tocreate awareness, impartinformation, and to encouragediscussion on the ethical issuesaround organ donation andtransplantation.

“It is then for young adults to makeinformed choices. Knowledge andinformation should also reduce anypossible fears and confusions whichmay persist around these issues.”

The Scottish Executive HealthDepartment, UK Transplant and theBritish Transplantation Society havefunded the pack. For a copy of thepack [email protected]: 0131 244 2573

A new information booklet about hearttransplantation, aimed at patients and carers, is dueto be launched in September 2003. The bookletgives information to support them through thetransplantation process.

It has been produced by a project group of transplantnurses and co-ordinators representing the six hearttransplant centres in the UK: Birmingham, Glasgow,Harefield, Manchester, Papworth and Newcastle.

Sharon Beer, Recipient Co-ordinator for the UniversityHospital of Birmingham NHS Trust, heart/lung transplantprogramme, said: “The members of the project grouphave been hugely enthusiastic and motivated. We havebeen working on the booklet for six months. It’s a unique

collaboration and the publication is a ‘first’ in the UK”.

Sharon explained that recipient co-ordinators andheart/lung transplantation nurses rarely have a forum tomeet and network. She added: “We thought that puttingtogether a generic handbook would allow representativesof the six centres to get together and share our individualexperiences and also, with just six programmes nationally,consolidate our knowledge to enhance patient care.”

The booklet will be available for distribution from earlySeptember 2003 via the six heart transplant centres andhas a tailored foreword for each centre. It has beensupported with an educational grant from Fujisawa Ltd(UK).

For more information contact: [email protected]

New teaching packbeing launched forScottish schools

Launch of heart transplantation booklet


APPOINTMENT WITH…

…David Mayer

Q What prompted you tospecialise in liver surgery?A Chance and opportunism! I readmathematical physics at SussexUniversity before switching tomedicine. One of my physicsteachers was Professor Thompson –the guy who actually discovered theneutron whilst working withRutherford in Cambridge. We askedwhat flash of genius had led to thisdiscovery and he replied: “Anyphysics graduate could have doneit. I just happened to be in the rightplace at the right time.” As part of my senior registrarrotation I was sent to work withPaul McMaster who had started theliver programme in Birmingham afew years earlier. This opened myeyes to a challenging new branch ofsurgery – I was in the right place atthe right time and never lookedback.

Q What else might you havedone?A I considered cardiac surgery. Iwas working as a cardiothoracicSenior House Officer (SHO) at Guy’swhen I first met my wife, Helen.The rota was one in two, operationswent on until 10 or 11pm eachnight and the on-call SHO slept onthe ITU. Helen put her foot down –little did she know…

Q What aspect of your currentrole gives you most satisfaction?A Patients in liver failure aretransformed by their transplant.Many who return to the outpatientclinic are unrecognisable – they look

years younger. If you are lookingfor an “elixir of life” then a livertransplant is the answer.

Q What aspect do you leastenjoy?A We are forced to cancel electiveoperations at short notice, often incancer patients, because livertransplantation takes priority.

Q What has been the greatestsuccess so far in your career?A Development of a successfulpaediatric small bowel transplantprogramme. This was prompted bya child who was sent to Pittsburghfor a bowel transplant in the early1990s. After careful planning, weestablished a team in Birminghamto provide a national service for theUK.

Q What one piece of advicewould you give to someone newto liver surgery?A Teamwork is crucial.

Q What has been the mostradical change since you havebeen involved with thetransplant community?A Liver transplantation hasdeveloped into a routine procedure.We lose very few livers fromrejection. Our major problem is tofind enough donors to satisfy theincreasing demand for transplants,especially with the current epidemicof hepatitis C. We now transplantlivers from much older and lessstable donors. When I started, we

only used livers from young donors,usually trauma victims, becauseolder livers did not function so well.Improvements in road safety havereduced the number of traumadeaths which, of course, is goodnews – unless you are waiting for atransplant.

Q If you were made Secretaryof State for Health tomorrow,what would you do?A I would get health serviceworkers out of offices and on to thewards and other clinical areas. Manyof our best nurses have been turnedinto full time managers and are outof touch with the “coal face”.Senior medical staff combine clinicalduties with management; seniornurses should do the same.

Q What is your mostmemorable moment?A The first time I attended a donoroperation. After we had broughtthe liver back and transplanted itinto our recipient (a young mandying from fulminant liver failure) Irealised the magnitude of thedecision that the relatives had made– an unparalleled act of generosity.

Q How do you relax?A I cycle every morning, read everyevening and spend as much timewith the family as I can.

Q What would you choose foryour epitaph?A He’s in the right place at theright time!

David Mayer is a Consultant Liver Transplant and Hepatobiliary Surgeonat the Queen Elizabeth and Children's Hospitals in Birmingham.

Shortly after his appointment in 1990, he helped to introduce the technique ofliver splitting, allowing one donor liver to be divided and transplanted into twoindividuals. Working with colleagues at Birmingham Children's Hospital hesubsequently established the small bowel transplant programme.

He is currently Chairman of the Liver Advisory Group to UK Transplant,President-elect of the Section of Transplantation of the Royal Society ofMedicine and Chairman of the Training Sub-Committee of the BritishTransplantation Society.

In April 2004 he is hosting the 7th Annual Congress of the BritishTransplantation Society at the International Convention Centre in Birmingham.

14 Bulletin Autumn 2003

ADVISORY GROUPS

Kidney and Pancreas AdvisoryGroupKPAG met on 14 May 2003• KPAG representatives attended a British TransplantationSociety two-day forum in June held to consider guidelinesfor immunosuppression.

• Paediatric patients – letters of non-compliance with thenational Kidney Allocation Scheme will be issued to thosecentres transplanting patients as “easy to match” withnon-favourably matched kidneys.

• A pilot scheme will be set up to trial the use of bloodgroup A2 kidneys in blood group B patients to improvethe waiting time of blood group B patients. The trialshould start in November 2003.

• National Transplant Database data collection – allcentres will be asked to sign up to the agreed data setand to work with UKT towards electronic transmission ofdata within five years.

Patients’ ForumPatients’ Forum met on 21 May 2003• Members of the Patients’ Forum now sit on each ofthe other advisory groups although it is still necessary tofind a cornea representative for the Patients’ Forum.

• As potential spokespeople, members were presentedwith an overview of the UKT media protocol andguidance.

UK Transplant Advisory GroupUKTAG met on 11 June 2003• New terms of reference were agreed, the main changebeing to meet as and when necessary but at least onceper year.

• Brain stem death testing – there is currently nonational code of practice for management of non-heartbeating donors in ICUs. The Chief Medical Officerhas been approached to recommend a review by theAcademy of Medical Royal Colleges.

• Donation practice – members agreed a TCAG paper onthe procedure for dealing with positive virology testresults on potential donors. Members also consideredwhether all female potential organ donors ofchildbearing age should be tested for pregnancy. UKTAGconcluded it was not necessary but that UKT shouldproduce a protocol for national guidance.

Ocular Tissue Advisory GroupOTAG met on 25 June 2003• Increases in corneal transplant numbers were notedalthough these are still well short of the activity levels ofthree to four years ago.

• The number of corneas issued but not used wasreported and was consistent with figures for previousperiods. The main reason for non-use was the recipientbeing unfit.

• Members noted a decrease in the number of corneasreceived by Bristol Eye Bank as UKT had been activelyencouraged to send corneas to Manchester. However, thetotal number of corneas issued has increased despitefewer being received.

• Data relating to indications for graft – this informationwas agreed to be of a high standard and approaches arewelcomed from surgeons in training if they wish toconsider collaborative research with UK Transplant.

• Electronic data – a digital database has been developedbased on UKT forms and discussion took place onpiloting the software. Regional representatives agreed toraise the matter with their surgeons to check if theywished to take part in the pilot study.

• Members were asked to comment on a revised list ofcodes for the ordering of ocular material, which identifiesthe type of tissue required.

Organ Retrieval Working GroupORWG met on 27 June 2003• Length of time of the organ donation process – datawas received from units on referral times to co-ordinatorsand variations in practice were noted. Further informationon timing was requested to highlight where the problemsare.

• Retrieval team – the principles of a self-sufficientretrieval team were discussed and the four integratedretrieval team models supported. This would potentiallymean a team for Scotland, the North of England, theMidlands and the East, and the South. Further workneeds to be carried out on problems with multi-organretrieval and travel times.

• A document is being produced on the one-stageabdominal retrieval process, which will effectively becomea multi-organ manual.

A formal national allocation scheme forkidney/pancreas blocks and for pancreas alone hasbeen introduced.

Until now there has been no agreed mechanism foroffering on a pancreas that could not be transplantedlocally. This scheme formalises sharing between centres,making access to pancreata more equitable and ensuresthat, where no local pancreas transplant centre exists, a

New allocation schemefor pancreata

Continued on page 15

15Bulletin Autumn 2003

Copyright and Liability2003 UK Transplant. All rights reserved. No part of this publication may be reproduced or

transmitted in any form or by any means, including photocopying and records, without the

written permission of the publishers or, where appropriate, the author of an article. Such written

permission must also be obtained before any part of this publication is stored in a retrieval

system of any nature.

Opinions expressed by a contributor to this Bulletin are not necessarily those of the Editor or of

UK Transplant and neither the Editor nor UK Transplant accepts any responsbility or liability in

respect thereof or any other information contained in this publication.

In the event of the main UK Transplant system failing, there is analternative telephone number that can be used - 0117 931 4777.

During office hours this number will be answered by the UKTransplant receptionist but out of office hours the number

is automatically directed to the Duty Office.

0117 931 4777 should only be used if you are unable to obtain aresponse from the

0117 975 7575 telephone number.

UK TransplantEmergency Contact Telephone Number

Diary

Second South WestTransplant Symposium23 - 24 September, StMellion, CornwallInformation:[email protected]

7th InternationalXenotransplantationCongress30 September - 4 October2003, GlasgowInformation:www.ixa2003.co.uk

7th Annual symposium inOrgan Donation andTransplantation8 October, Manchester.Organised by the Liverpool,Manchester and Leedsoffices transplant co-ordinators.Information:[email protected]

National Kidney ResearchFund Conference21 October, LondonPredict and Prevent. Is this anew approach in renalcare?Information:[email protected]

Skin Cancer in OrganTransplantation6 November, London Royal College of Physicians’conference.Information:[email protected]

South West TransplantRegional Symposium11 November, PlymouthCovers increasing andmaximising organ andtissue donation, controllednon-heartbeating donation,living donation.

Information:[email protected]

Organ/Tissue Donationand TransplantationStudy Day12 November, BristolAimed at health careprofessionals/alliedprofessionals forBristol/North Devon regionorganised by the BristolTissue & Transplant Co-ordinators.Information:[email protected]

National PaediatricOrgan Donation andTransplantation Seminar24 November, NottinghamInformation:[email protected] Congress of theInternational TransplantCo-ordinators Society

29 November - 1 DecemberWarsaw, PolandInformation: [email protected]: www.itcs.org

Open meeting of the UKXenotransplantationInterim RegulatoryAuthority1 DecemberInformation: Jennie Mullinstel: 020 7972 4824

VOICE RECORDERTELEPHONE CALLS TO THE

UK TRANSPLANT DUTY OFFICE

This notice is to inform usersthat all telephone calls to the

Duty Office are recorded. Oftelhave agreed that this statement

is an appropriate safeguardpermitting the recording warn

tone to be suppressed.

pancreas can still be offeredthrough UK Transplant’scentralised system.

The scheme was agreed bythe Kidney and PancreasAdvisory Group and ratifiedat the Renal TransplantServices Meeting inFebruary 2003.

The scheme will work in thesame way as that forallocation of livers for

routine transplant, ie theretrieving centre can retainthe organ(s) for local use,but if they do not wish totransplant, the organ(s) willbe offered to other centresin a priority order based on“balance of exchange” (inthis case, pancreas exportsminus pancreas imports),giving preference to centreswho are net exporters.Offers will not be made forindividual patients as in theKidney Allocation Scheme;rather they will be made toa centre for use in a patientof their choice.

The current order of prioritywith regard to allocation ofkidneys will be maintained.That is, that kidney/pancreaspatients take priority over allkidney only patients withthe exception that if two ormore 000 mismatchedchildren are identified forkidney only transplant, thekidney/pancreas operationwill be called off whereverpossible so that a child doesnot miss out on a 000mismatched kidneytransplant. Only if apancreas cannot betransplanted as a whole

organ will it be offered firstfor islet transplantation andthen for research (withappropriate consent).

The pancreas transplantcentres involved are:

Addenbrooke’s Hospital,CambridgeChurchill Hospital, OxfordFreeman Hospital,NewcastleGuy’s Hospital, LondonManchester Royal InfirmaryRoyal Infirmary ofEdinburghRoyal Liverpool UniversityHospitalSt Mary’s Hospital, London

New allocationscheme forpancreataFrom page 14


AROUND THE COUNTRY

Becky Smith and ChristianBrailsford, both donor liaisonnurses, took an organ donationstand to the GlastonburyFestival. On reporting back,Christian was full of enthusiasm:

“Becky and I have both been to thefestival before but this was probablythe best one yet! Our stall had agreat position in the Green Futuresfield with a constant stream ofpeople passing by. Nearly 900 peoplecame to the stall and 314 signedonto the NHS Organ Donor Registerthere and then. Most people wereaged between 18 and 30 and toldus they had always meant to registerbut never had the opportunity. Sothey were very glad to see us there!”

Becky and Christian distributedleaflets at other stalls and promptedthe Muslim and Buddhist forums todebate organ donation. Theybecame regulars on Radio Avalon,the festival station, talking aboutdonation and put organ donationstickers on everything they could.However their pièce de resistancewas a balloon release in front of thePyramid stage during oneperformance. The balloons stayed onstage all evening and made anational TV appearance!

Tracey Dudley, former donortransplant co-ordinator, and ValButler, a donor liaison nurse atMerthyr Tydfil, spoke on the role ofthe donor liaison nurse at theInternational Transplant Nurses’Society. Tracey said: “Our audiencewas predominantly recipient nursebased, so we were able to introducethem to the reasons for the need fordonor liaison, the donor shortage,European strategies for improvingdonor rates, the importance of ourdonor families, and the need toidentify and approach fordonation.”

Helen Challand, donor liaison sisterat Royal Berkshire Hospital Reading,has been involved in developing anon-heartbeating donorprogramme (NHBD). Helen carried

out a retrospective audit to highlightif there was any NHBD potentialwithin the ITU then arrangedteaching sessions for consultantsand sisters to explain the plans ofthe programme and the principles ofNHBD.

Helen recalls: “The teaching wasmet with a mixture of excitementand apprehension. However withmore teaching arranged for bothnursing and medical staff thisapprehension soon turned toenthusiasm. So much so, that thefirst referrals came from wards andA & E, rather than the ITU.”

Helen added: “The programme hasreally taken off in the last sixmonths and there have beensuccessful NHBDs from the A & Edepartment, the ITU and one of the

oncology wards.”

Helped by a crew of volunteers anda bevy of children, Helen Bradley,Donor Liaison Sister at RoyalPreston Hospital, took part in aCaribbean Carnival in Preston. Theteam paraded the streets of Prestonwith giant donor cards and posters.Helen said: “We distributedthousands of leaflets, and raised£230 for Transplants in Mind(TIME). I can’t thank the volunteersenough! It was good fun andhopefully the message of donationreached a lot of people.”

In August, transplant and dialysispatients took part in a seven-hourhike up Lochnagar near Aberdeento highlight organ transplantation.The event was organised bytransplant co-ordinators at theAberdeen Royal Infirmary and theRoyal Edinburgh Infirmary and wasled by transplant surgeon MrJetmund Engeset.

In June, kidney patients from theQueen Elizabeth Hospital,Edgbaston, celebrated 35 years oflife-saving transplants. More than2,500 kidney transplants have beenperformed and thousands of peoplehave undergone dialysis treatmentat the hospital.

We’re in tune with festival

Leading the carnival procession in Preston.

Signing up at Glastonbury.

bulletin - microsoft...on organ donation in a wide-ranging study this autumn, healthcare...

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