-
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
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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.
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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.
Phot
ogra
ph:
Chr
isto
pher
Woo
ds
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Bulletin Autumn 20034
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.”
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Bulletin Autumn 2003 5
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.”
Phot
ogra
ph:
Tony
Col
ling,
Sun
derla
nd E
cho
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Bulletin Autumn 20036
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.
Cre
dit:
Ben
Tur
ley,
Bol
ton
Hos
pita
ls M
edic
al Il
lust
ratio
n D
ept.
Cre
dit:
Rac
hel H
odge
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.
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Bulletin Autumn 2003 7
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.”
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Bulletin Autumn 20038
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
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Bulletin Autumn 2003 9
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.
Phot
ogra
ph c
ourt
esy
of t
he B
BC.
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
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Bulletin Autumn 200310
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.
“
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Bulletin Autumn 2003 11
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
”
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Bulletin Autumn 200312
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
-
Bulletin Autumn 2003 13
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
-
Bulletin Autumn 200316
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.