bulletinThe newsletter for everyone involved in organ transplantation and donationIssue 65 Spring 2008

In this issue: UK Transplant welcomes the Taskforce report. New adcampaign makes an impact. Improved cornea transplant techniques. My LifeMy Gift letter box drop reaches 50% of the population. Coronation Streetstars offer their support. Appointment with Alison Gane.

UK Transplant is part of NHS Blood and Transplant

CHIEFLY

2 Bulletin Spring 2008

The Report of the Organ DonationTaskforce has now been publishedand, more importantly, has beenaccepted in full by the Secretary of State. The Department ofHealth, in association with thedevolved administrations, hasagreed funding for the first yearand indicated a commitment towork to identify funding forsubsequent years. Detailed articles on therecommendations and their potential impact are inthis edition of Bulletin and I would only wish to addthree comments.

Firstly, to quote from the Report itself, “To overcome(these issues) will require leadership, boldness andwillingness to change established practice. The prize fordoing so is considerable.” This statement throws downa challenge to all of us – clinicians and scientists, co-ordinators, commissioners, NHS management andcritical care clinicians, and of course to UK Transplantand NHSBT. Change can be uncomfortable but withoutchange the prize – a significant increase in organdonation and transplantation – will not be achieved. We have an unprecedented opportunity to make realimprovements and we must not waste this opportunity.

Secondly, the Taskforce report emphasises the crucialimportance of each and every one of the 14recommendations and the need to implement themall - not to “cherry-pick” some over others.Responsibility for implementation of the individualrecommendations lies with a number oforganisations, although it is clear that NHSBT isexpected to make a significant contribution.

The Department of Health is working to put togethera broadly based group with clear leadership that willbring together all parts of the UK's HealthDepartments and the NHS to ensure that progress ismade in implementing all the recommendations.

Finally, the subject of presumed consent. The launchof the Taskforce Report was to some extentovershadowed and confused in the media by thePrime Minister's call for a debate on the merits of achange in legislation. Not all the reporting was strictly

accurate – no immediate change in policy wasannounced.

The Taskforce has been asked to continue its workand to review the evidence as to whether a change topresumed consent would have an impact on organdonation. This is a complex question and one thatproduces very strongly held views both in favour of,and against, a change. I'm sure that the appropriateresponse is to welcome the debate and the ongoingwork of the Taskforce but to await its next reportbefore reaching any conclusion.

The Taskforce has identified six areas that needinvestigation. These are the clinical implications, the practical issues, ethical concerns, legal aspects,cultural concerns and the media. The Secretary ofState has asked for a report on progress by thesummer and, until then, I feel that it is important notto prejudge the evidence.

Moreover, it should be emphasised that the Secretaryof State, in accepting the Taskforce report on 16January, endorsed the view that whatever changes are or are not made to the law they will not beeffective without the right organisationalinfrastructure. More donor co-ordinators, strengthenedretrieval teams, support for the changes within criticalcare that will ensure that donation is seen as the norm and appropriate monitoring and oversight are pre-requisites and I hope that we can all rise to thechallenge of putting these recommendations from theTaskforce into practice as soon as we can.

The widespread support for the recommendations isextremely encouraging and everyone will have a roleto play in making them happen. The increase of 50%in organ donation that the Taskforce believes ispossible within five years will be a very majorachievement.

Chris RudgeManaging & Transplant Director – UK Transplant

Organ Donor Line 0845 60 60 400 www.uktransplant.org.uk

bulletinIS PUBLISHED QUARTERLY ISSN 1472-0507

Copy date for Summer 2008 edition 30 April 2008Contributions should be sent to Henny Fordham

UK Transplant, Fox Den Road, Stoke Gifford, BRISTOL BS34 8RRTel: 0117 975 7562

Fax: 0117 975 7515 Email: bulletin@uktransplant.nhs.ukDesigned by Bob Design and Marketing www.meetbob.co.uk

Front cover picture:The Street’s Platt family

Copyright and Liability2008 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 thewritten permission of the publishers or, where appropriate, the author of the article. Such writtenpermission 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 ofUK Transplant and neither the editor nor UK Transplant accepts any responsibility or liability in

respect thereof or any other information contained in this publication.

NEWS

Bulletin Spring 2008 3

A new approach The shortage of donated organs fortransplants has been highlighted ina national press advertisingcampaign featuring eye-catchingbody art organised by UKTransplant Campaigns team.

The images feature a male and femalemodel with a picture of a heart paintedon their bodies under the message:'You've got what it takes to save a life'.

UKT's Marketing and CampaignsManager, Angie Burton explains “Whilethe heart symbolises kindness andgiving, the underlying message focuseson the need for all types of organtransplant which rely mainly on thegenerosity of an anonymous stranger tooffer the gift of life.”

The advertisements appeared in nationalnewspapers in England, Scotland, Walesand Northern Ireland throughoutFebruary and it is estimated that everyadult individual in the UK will have hadthe opportunity to see the image atleast three times during this period.

“These are strong images thatchallenge us to think about what wewant to happen after our death.Currently, 1,000 people die every yearbecause they do not get the transplantthey need,” said Chris Rudge, UKTransplant's Managing and TransplantDirector.

The campaign follows the recentpublication of the Organ DonationTaskforce report which highlighted thatthe UK has one of the lowest donorrates in Europe.

Health Minister Ann Keen said: “Therecent publication of the OrganDonation Taskforce report signals thebeginning of a new era for donationand transplant services across the UK.

“It presents the opportunity to savehundreds more lives each year. However,carrying out more transplants relies onmore of us being willing to donate.

“There is a great deal of support fororgan donation and this campaign aimsto motivate people into taking action toexpress that support. The more peoplewho join the NHS Organ DonorRegister, the more lives can be saved.”

Chris Rudge added: “The publication ofthe Taskforce report and the PrimeMinister's call for a public debatesurrounding the issue of presumedconsent have helped to focus publicattention on the need for moredonated organs.”

The campaign will also appear inpublications aimed at black and Asianreaderships to highlight the particularneed for more organ donors from theseethnic backgrounds.

We’re more used to seeing themshouting and screaming on ourtelevision screens than talking as afamily, but the stars behindCoronation Street’s most turbulent

bunch The Platts are urging moreof us to talk about our organdonation wishes.

“I just wanted to do my bit,” saidHelen, who has joined the NHS Organ Donor Register and isencouraging fellow Corrie castmembers who want to help to do so too.

“I think more of us need to starttalking about our donation wisheswith our families. By doing so evenmore lives can be saved and yourfamily won't have to make that difficultdecision on your behalf should thetime ever come.”

Jack Shepherd, Gail's tearaway son David,joined the NHS Organ Donor Registerwhen he applied for his driving licence.

“It just felt like the right thing to do,” he remembers. “There are so manypeople who need a transplant and bymaking that tick I could help savesomeone's life one day. There's nobetter gift.”

Jack's co-star Michelle Keegan added: “It must be awful knowing your life ison hold when you need a transplant. Yet that's the reality for more than9,000 people across the UK. By joiningthe NHS Organ Donor Register you'repledging the greatest gift of all – thegift of life, which I think is an amazingthing to do.”

Corrie stars sign up to save lives

NHS Choices, the national website for the NHS, hasdeveloped a comprehensive section on organ donationwhich sets out to challenge some of the myths thatsurround transplants and improve understanding of thewhole process of organ donation.

Mark Pownall, editor of NHS Choices said "We want tocontribute to improving public understanding of organdonation, and to encourage people to sign up online."

The website includes an interactive online tool which sets outthe history of organ and blood donation. The timelineincludes videos and case studies relating to key milestones inorgan donation. You can see it by visiting www.nhs.uk/tools

NHS was launched last June and is gradually assimilatingcontent from NHS Direct to become the most comprehensive

health information website in the country. The purpose of the site is to place more emphasis on the individual inhealth care and to act as the front door online service for the NHS.

NEWS

4 Bulletin Spring 2008

All-tooled up

The annual British Transplant Gamesis one of the biggest annual multi-sports events in the UK andwill take place in Sheffield from 7 to 11 August 2008. Nearly 1,000recipients of life-saving organtransplants will be taking part agedbetween two and 82.

Some participants come to win medals,training well in advance of the eventand hoping to be chosen to representthe UK at the World Transplant Gamesin Australia in 2009. But manyparticipants come to renew oldfriendships, participate in sportingevents at their own pace and enjoy afew days of fun. All the athletes haveexperienced life threatening illness andare now fit and well as a result of asuccessful transplant.

In support of the games, the SheffieldStar newspaper has launched their 'Giftof Life' campaign – they are trying toget 25,000 readers to sign up to theorgan donor register before August.

The games are sponsored by Westfield, a not for profit health insurance provider.

Games athletes with Andrew Raftery (left kneeling) Chairman of theGames Local Organising Committee and far right (kneeling)WestfieldHealth Chairman Graham Moore.

British Transplant Games 2008

More than 400 delegates fromEurope, Asia and North America are to attend a top-level conference in London on organdonation and transplantation aftercardiac death.

The 4th International Meeting onTransplantation from Non-Heart Beating Donors brings together expertsand key-players in this field from aroundthe world.

Aimed at transplant doctors, nurses,surgeons and coordinators, the bi-annual conference has in the pastattracted 400 delegates from Europe,the USA and Asia.

It will take place from 15-16 May at the Mermaid Conference & EventsCentre in London and has beenorganised by the Liver TransplantProgramme at King's College Hospital, London.

John Richardson, team leader of NorthThames Transplant Co-ordinators andone of the conference organisers, said:“Since its origin in 2002, this meetinghas brought together specialists with acommon interest in transplantation ofabdominal and thoracic organs and ofcell transplantation from donors aftercardiac death.

“NHBD 2008 aims to bring together allspecialists in transplantation, includingtransplant physicians, surgeons, ethicists interested in transplantation,intensive care physicians and transplantco-ordinators.

“The aim of the meeting is to highlight the key developments andinitiatives globally which are of vastbenefit to those people on thetransplant waiting lists.”

For further information seewww.nhbd2008.org

NEWS

Bulletin Spring 2008 5

Emma Thirlwell is a donor andrecipient transplant co-ordinatorworking in the Renal Unit, RoyalLiverpool Hospital. Over Christmasshe became one of the legendarybox openers on Deal or No Deal.

Emma was asked by one of the donorfamilies she keeps in touch with. Liz Phillip's husband died seven yearsago and became a multi-organ donor.Emma has put Liz has in touch with theliver recipient and they have kept inclose contact ever since through Emma. Sadly, Liz's youngest daughter Jade was diagnosed with autoimmune liver

disease about two years ago and has been in and out of hospital eversince. It looks likely that Jade may need a liver transplant in the future. Liz is in the rare position of experiencingboth sides of the transplant story. She has worked tirelessly to promoteorgan donation and is now anambassador for the Children’s LiverDisease Foundation.

Liz's sister nominated her to appear on a Deal or No Deal Christmas special.Liz was shortlisted and asked to prepare 22 box openers. “She asked me if I would be one as I'd played animportant part in her life since herhusband died. She also asked some ofthe nurses who had looked after Jade”said Emma.

“We filmed the show in November2007. In the video clip that was playedat the start of the programme, organdonation was mentioned and the factthat her husband’s organs had helpedother people. I hope that this will raiseawareness.”

The UK's oldest motoring clubis supporting UK Transplant'slatest campaign to encouragemore drivers to join the OrganDonor Register (ODR). TheMidland Automobile Club –founded in Birmingham on 11January 1901 – has joined thecampaign which will see almost10 million motorists receiveinformation about the ODRalong with their annual DVLAvehicle tax reminder.

Club secretary, Roger Thomas, ofStockton-on-Teme, near Worcester,said: “Midland Automobile Club isproud to support NHS UKTransplant's partnership with theDriver Vehicle Licensing Agency(DVLA) as this is a positive way ofaddressing the national organdonor shortage.”

A total of 9.6 million leaflets, titled We've signed up. Have you?,are being sent out over a three-month period in a joint campaign by the DVLA and UK Transplant to encourage more people to jointhe register.

The leaflets are included formotorists whose car tax is due forrenewal at the end of February,March and April. As well as urgingmotorists to discuss their wisheswith their loved ones and families,the leaflets also include a simpleform for joining the ODR.

Liverpool's Emma lifts the lid

NHBD Meeting 2008

Motoring club drivesmembers to ODR

Midland Automobile Clubmember, Simon Durling, 64,from Shelsley Walsh, who hascome fourth twice in the pasttwo years in the NicholsonMcLaren Motor SportAssociation British Hill ClimbChampionships.

NEWS

6 Bulletin Spring 2008

David Morrissey, most recently seen on our TV screens as Colonel Brandonin Jane Austen’s Sense and Sensibility, is the voice behind a new radioadvert produced by UKT. Similar to the TV “fillers”, it will be played forfree by local and national independent radio stations when they have gapsin their advertising schedule.

Pensioner donates kidney

Grandfather Patrick Graham, aged73, became Scotland's oldest livingorgan donor when he gave one ofhis kidneys to his nephew, RichardFoley, aged 38.

He said: "I thought I was going to betoo over the hill to help him. When Ifound out I could, I was over themoon." The retired HGV driver fromGlasgow, was put through his paces bydoctors at Glasgow's Western Infirmaryfor more than a year to make sure hewas fit enough to be a donor.

Richard's health started to deteriorate in1996 when he began suffering severeback pain, nosebleeds and weakness.

Tests revealed his kidneys had started to shrink but doctors didn't know why. His mother was able to give him akidney but this began to fail in 2006.

"What gets me is neither of themthought twice about it” says Richard. “We did think my uncle might havebeen too old to help out and I felt sobad he had to go through so manytests to make sure he was healthyenough to donate. When the doctorstold us it was a goer, we both justwelled up. I was getting more andmore ill. He saved my life."

Patrick, a father of five, said: "The onlything I wanted was to see Richardhappy and healthy and he's doing justgreat. That's the only thanks I need. Ireally don't see what the big deal is –anyone would do what I did to helpsomeone in their family who is sick.

"If I'm honest, I am just gratefulsomeone so young wasn't worriedabout having a 73-year-old kidney.When I found out I was the oldestliving donor, it was a bit of a shock. I don't feel that old. It made me wonder why more pensioners like medon't do it."

Patrick Graham (right) withnephew Richard

© t

he D

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The final phase of the My LifeMy Gift door drop rolled out inthe Midlands during February.Nearly three million homesreceived a specially designedleaflet with their household mailinviting them to join the NHSOrgan Donor Register (ODR).

This brought the total number ofhouseholds receiving the leaflet to11.6 million since the initiativebegan in October 2007. Thecampaign has been targeted atareas of high population in UKregions with the lowest sign-uprates to the register - London,Northern Ireland, the North Westand North East and the Midlands.The leaflet drop reached nearly halfthe UK population.

The door drop leaflet encouragedresidents to join the organ donorregister by either completing theregistration form in the leaflet, bycalling the Organ Donor Line or byvisiting www.mylifemygift.org, theunique internet address speciallycreated for the campaign.

The mass mail drop has beensupported by radio advertising ineach area and a bus advertisingcampaign in the Midlands whichhas the lowest rate of organ donorregister membership. The initiativewas enhanced through cinemaadvertising in target areas and byother local PR initiatives. Celebritiessuch as Helen Worth (who playsGail Platt in ITV's 'CoronationStreet') and Channel 4's Richard andJudy also came out in support ofthe campaign.

Responses are still coming in butmore than 65,000 people havealready responded to the appealand applied to join the ODR.

Bulletin Spring 2008 7

Stakeholders who attended aspecial pre-launch briefing at theDepartment of Health in Londonbacked the Organ DonationTaskforce Report.

Representatives welcomed the report's 14 recommendations andwere keen to see them implementedas soon as possible.

One said the implementation wouldrequire a significant increase inresources, not just in donor teams,but a doubling of surgical and support staff.

Another said the aims and objectiveswould be a challenge as, currently,

there isn't sufficient NHS capacity tomeet the report's recommendations.

Another congratulated the Taskforceon its report and said the hoped-forincrease in transplantations wouldprovide more opportunities for trainee surgeons.

Some donor families have a need for recognition and plans for anational memorial would bewelcomed, said another.

One medical expert said the key now“is how to make this happen”, whileanother pointed out that there wascurrently a shortage of nursing staffto fill the new roles. The new job

opportunities would require fully-qualified nurses with critical care training.

The groups attending included:Advisory Groups to UK Transplant;British Association for Critical CareNurses; BMA Medical EthicsCommittee; British Society forHistocompatibility andImmunogenetics; BritishTransplantation Society; Donor FamilyNetwork; Human Tissue Authority;Intensive Care Society; NationalKidney Federation; NationalSpecialised Commissioning Group;Medical Director, NHS; NHS Blood andTransplant; Royal College ofAnaesthetists; Royal College ofNursing; Royal College of Surgeonsand Transplants in Mind.

Now the dust is beginning to settleafter the launch of Organs fortransplants: a report from theOrgan Donation Taskforce, Bulletinspoke to Elisabeth Buggins CBE,chair of the Organ DonationTaskforce about how she felt thereport has been received.

“The whole experience has beenremarkable. I have received numerousletters and emails from clinicians andother interested people and everyone I'vespoken to has been unequivocallysupportive. There has been some anxietyexpressed about the ability to use all ofthe organs that may result from animproved system of organ donation butthis is not a major barrier, just somethingto ensure doesn't happen.

“One of the lessons we learnt fromother countries we spoke to whenputting the report together was theimportance of political support. So Iwas delighted that Alan Johnson,Secretary of State for Health and I were

standing side by side when heannounced the report. The Departmentof Health and NHSBT have been fullysupportive too which makes the wholeexercise much more achievable.”

Although Prime Minister GordonBrown's press statement about his views regarding presumed consent pre-empted the publication of thereport, Elisabeth Buggins' view on this is positive. “He created aconversation out in the public arenawhich is always good for organdonation. Discussion about our wishes is what is needed now and would stillbe needed, even if the UK did switch to an opt-out system.”

All in all, it couldn't have gone betterfrom Elisabeth's point of view. “When Ifirst began working on the report inDecember 2006 I saw how manyattempts at making changes had beenmade and how little had actuallyhappened, for donor families inparticular. There is now the backing andsupport that is needed for real improvements to be made.”

“One of the greatest things to comeout of the Task Force report for me hasbeen the opportunity to see how muchcomfort families can receive from theirloved ones becoming donors. It is thesefamilies who need to be recognised andappreciated.”

Elisabeth Buggins

Stakeholder support

8 Bulletin Spring 2008

The Organ Donation Taskforce wasset up in December 2006 to examinethe obstacles to organ donation and suggest solutions which wouldlead to an increase in the number of transplants.

This is a summary of the 14recommendations made by theTaskforce that have been agreed by theGovernment. The plan forimplementation will be agreed andcarried forward during the nextfinancial year 2008/9.

1. Donation organisationA UK-wide organ donation organisationis to be established.

2. Organisation responsibilityThe establishment of an organ donationorganisation will be the responsibility of NHSBT.

3. EthicsAn independent donation ethics group is to be established to resolvepotential legal, ethical and professionalissues in order to ensure that allclinicians are supported and able towork within a clear and unambiguousgood practice framework.

4. A national approachAll parts of the NHS must embraceorgan donation as a usual rather thanunusual event. Local policies,constructed around national guidelines,need to be put in place. Discussionsabout donation should be part of allend-of-life care, when appropriate.

Each trust should have an identifiedclinical donation champion and adonation committee to help achieve this.

5. Notification criteriaMinimum notification criteria for potentialorgan donors should be introduced on aUK-wide basis. These criteria should bereviewed after 12 months in the light ofevidence of their effect, and thecomparative impact of more detailedcriteria should also be assessed.

6. MonitoringDonation activity in all trusts is to be monitored. Rates of potential donor identification, referral, approach to the family and consent to donation need to be reported. The trust donation committee shouldreport to the trust board through theclinical governance process and themedical director, and the reports should form part of the assessment of trusts through the relevanthealthcare regulator.

7. Brain-stem testingBrain-stem testing is to be carried out in all patients where brain-stem death is a likely diagnosis even if organdonation is an unlikely outcome. The report highlights the importancenot only of measuring organ donationin numbers of actual donors, but alsoof recording the proportion of thosepatients suitable for donation who areidentified and whose personal wishes,or those of their family, are ascertainedand fulfilled.

Data collection should be routine and extended to all areas where critical care is provided, includingaccident and emergency. Data is to be made publicly available and reviewedby the trust donation committee.Donation monitoring informationshould be incorporated into the dataused by the relevant healthcareregulator in its assessment of trusts.

8. ReimbursementFinancial disincentives to trustsfacilitating donation will be

removed through the development and introduction of appropriatereimbursement.

9. Donor transplant co-ordinatorsThe network of donor transplant co-ordinators (DTCs) is to be expandedand strengthened through centralemployment by a UK-wide organdonation organisation. There is to be aclose and defined collaborationbetween donor co-ordinators,clinical staff and trust donationchampions. Electronic online donorregistration and organ-offering systemsare to be developed.

To resolve the unacceptable situationwhereby DTCs sometimes have to workfor 24 hours or more without a break,the Taskforce has recommended that up to three individuals could attendeach organ donor: one for discussionswith the donor's family, one to obtainclinical information, register the donorwith UK Transplant and makearrangements for the retrieval team andone to join the retrieval team and takeresponsibility for continuing liaison withUK Transplant, organ allocation and allassociated documentation.

10. Organ retrieval teamsA UK-wide network of dedicated organretrieval teams should be established toensure timely, high-quality organ removal from all heartbeating and

The 14 step programme

Rafael Matesanz from Spainpresenting evidence to Taskforce

Bulletin Spring 2008 9

non-heartbeating donors. The organdonation organisation should beresponsible for commissioning theretrieval teams and for audit andperformance management.

The Taskforce says that organ retrievalteams should be virtually self-sufficientand not require anaesthetic, theatre orsurgical staff from the donor hospital.They should be available 24 hours a day

without other elective commitmentsduring their time on call. They shouldbe able to respond if there is more than one donor on the same day and be able to provide opportunities for training.

11. TrainingAll clinical staff likely to be involved inthe treatment of potential organ donors should receive mandatorytraining in the principles of donation.Organ donation is an infrequentoccurrence in all but the largest trustsand many critical care staff may gothrough their training without beinginvolved in the care of a potential organdonor. This can lead to lack ofexperience among professionals.

12. Public recognitionAppropriate ways should be identifiedof personally and publicly recognisingindividual organ donors, where desiredby families. These may include national

memorials, local initiatives and personalfollow-ups to donor families.

13. 'Gift' promotionThere is an urgent requirement to identifyand implement the most effectivemethods through which organ donationcan be promoted to the general publicand, specifically, to the BME population.Research should be commissionedthrough the Department of Health (DH)and development funding.

14. Coroner guidelinesThe DH and the Ministry of Justice are to develop formal guidelines forcoroners on organ donation. If a potential organ donor dies incircumstances that require coronernotification, it is necessary to obtaintheir agreement before donation can take place, even when the donor hasexplicitly stated a wish to donate. There is currently some variation in thepractice of individual coroners.

Taskforce Committee members inconference

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NHS Trusts are being urged towork with UK Transplant topromote organ donation to staff,patients and visitors.

The move comes after latest figuresshow the Taskforce report has had asignificant impact on interest in organdonation and NHS Organ Donorregistration figures.

Calls to the organ donor line andregistrations have rocketed since theTaskforce report was launched on 16January.

Graph 1 shows the number of callsreceived by the Organ Donor Line andGraph 2 shows those who haveregistered online.

It has enabled UK Transplant to chartsignificant interest over the three-month period from November 2007 toJanuary 2008.

Now the Report has prompted manyNHS Trusts to enquire how they canhelp to swell the number of potentialorgan donors registered in their area.

Kate Munglani, UK Transplant webresearcher, said: “All most peopleneed is a little prompt and an easyway to sign up. Many NHS trusts haveset up a web link on their websitehome pages and also on the frontpage of their intranets.”

To find out more about these andother ways to promote the NHS Organ

Donor Register, please emailkate.munglani@uktransplant.nhs.uk

The Newcastle-upon-Tyne Hospitals NHS Foundation Trust homepagewww.newcastle-hospitals.org.uk

NHS Trusts keen to promote the NHS Organ Donation Register

John Baker, the newest recruit toUKT's Media and PR team, foundhimself in at the deep end on hisfirst day. He arrived just after thePrime Minister's Sunday Telegraphannouncement calling for a publicdebate into presumed consent fororgan donation. Final preparationswere also taking place for NHSBT'sresponse to the publication ofOrgans for Transplant. Here he takes a look back over his first few days.

The launch of the Taskforce report and the endorsement it has received by UK health departments has clearlyopened the door to tremendousopportunities for the transplant service in the UK.

Coupled with Prime Minister GordonBrown's call for a debate surroundingpresumed consent, publication of therecommendations served to raise organdonation to the front of people's minds– and to many people's lips.

Mr Brown argued that the UK shouldadopt an “opt-out” system similar tothat used in Spain and other countries,whereby organs would be automatically available for use afterdeath unless the deceased hadpreviously registered an objection.

Switching to a system of 'presumedconsent' could make a huge differenceto patients and would help to close thegap between those needing transplantsand the acute shortage of organdonors, he said.

While many chose to express their own views on this through the mediaincluding a number of people waitingfor transplant, charities and patientgroups, other politicians and religiousleaders, it was interesting to see howmany more were prompted to take thestep of opting in to the current system.The week beginning Sunday 13 Januarysaw over three times the usual numberof sign-ups to the NHS Organ Donor

Register through the 0845 Organ DonorLine and UKT website.

Meanwhile, the Taskforce continues itswork into gathering evidence of thepotential impact a presumed consentsystem would have on organ donationin the UK. We can only wait for theoutcome of its research anddeliberations to tell us which way theUK wants to go on this.

For us working at UKT's press office, we continue to respond to mediaenquiries and generate coveragewherever possible to increaseunderstanding about organ donationand the benefits of transplantation.Interest in the opt-out debate remainshigh among the media and regularlyfeatures in their lines of questions butthe opportunity is never lost toencourage people to use the system we currently have to help give hope tothe 9,000 who need an organtransplant in the UK.

The Taskforce has stated that it willreport back to the Health Departmentlater this year. There is moreinformation about this part of its workat http://www.dh.gov.uk/en/Healthcare/Secondarycare/Transplantation/Organdonation/DH_081593

10 Bulletin Spring 2008

Task Force: What the papers saidTaskforce Recommendation No. 9

Work is already under way todevelop a system for electronicdonor registration and organoffering. It will provide a centralrepository of information to beused by all parties involved inthe process of organ donation.

The organ donation andtransplantation system today islargely paper and telephony basedwith donor co-ordinators and UKT'sDuty Office spending a large part oftheir time communicatinginformation to recipient co-ordinators, in real time by faxand telephone.

It has long been recognised that the use of paper forms, although easyto use, has a number of issues,including the potential fortranscription errors, as informationis often communicated via thetelephone. The amount of paperwork that donor co-ordinators haveto carry around is substantial. Extrawork is required to enter data ontothe National Transplant Databasewhen it is eventually received at UKTransplant, and there is extra effortrequired to update forms.

The Electronic Offering System(EOS) addresses these issues from atechnology point of view but alsoenhances the current process,considers communications methods,is designed to reduce the ischaemictime for organs, makes offers oforgans more efficient and frees uptime for the donor co-ordinatorsthat should be spent caring for thedonor and their family.

History was made when BarbaraRyder, a nurse from Cornwall,became the first altruistic donor togo public. She is one of four peoplein the UK who have been approvedby the Human Tissue Authority(HTA) to make a non-directedaltruistic kidney donation – alsoknown as stranger donation. Herkidney was transplanted into AndyLoudon, a retired carpenter fromBedfordshire who had beenreceiving dialysis for two years.

She has one son, Jefferson, who lives inBerkshire, and a grandson, Jack, who is18 months old. “I know it sounds weird,but I was brought up in the sort offamily where we tried to help others.We had nothing and we were quitepoverty stricken. My parents andgrandparents were brought up to helpothers. That's how we lived. You do tryand pay back to society as you getolder. Everybody does.

“What prompted me to donate mykidney was that I heard something onthe radio about dialysis and howghastly it was. Eventually, I read theywere trying to legalise matters threeyears ago. I rang Sarah Stacey, theliving donor co-ordinator at DerrifordHospital in Plymouth and she said itwould be possible.

“My mother died very young. I wasalways aware of illness and sufferingand she had problems with her kidney,and a blood disease which affected herkidneys. When you nurse, you seethings happen to people and wish youcould cure it all.

“The kidney was literally a spare partwhich you can do without. I thought:'Good. At last I can do somethingphysically useful.'

“I was analysed and asked over andover again how I felt about the process.There were various tests to go through,and blood tests. The actual procedurewas painful immediately afterwards,

but the worst thing was I felt very tired.The tension was building and theemotion was building up, too. I justwanted it to be over and done with.

“They wondered whether I could cope.I am on my own, and if I could cope,someone else could. If you had apartner and supportive family aroundyou it would be a lot easier. I knew Iwould have a brilliant anaesthetist anda surgeon.

“On September 18 2007 I went into theoperating theatre at 9am. I wanted toget home. I went in on Tuesday andcame home on the Friday. I wanted toget home because I have rescued catsand dogs to look after.

“I was up and about straight away andwent straight to the supermarket but ittakes around ten days for the woundsto start to knit together. I was walkingwith the dogs after a week.

“What you get from giving the kidney isprobably more than the recipient. Thefeeling you get is better than thefeeling you get at Christmas. It's just thejoy of giving. You get a lot more funand happiness out of giving something to someone. It's something that canchange their lives.

“I had a lovely letter from Andy Loudonand his wife and it made all thedifference in the world. They wroteabout how they are now able to visittheir family in Scotland and theycouldn't before because of the dialysis.They said they would never forget me.It did make a lot of difference.”

Barbara's son Jefferson Ryder“I don't think I was 100 per centconvinced at first, but then I realisedshe was doing it because it was theright thing. Her father was a similar sortof person, so she was doing what hewould have done. She hasn't had thebest life, but she has a new grandson,Jack, who is eighteen months old, andhe brings a lot into her life. She wantedto give something back. She fullyappreciates that other people need toknow about this process.

“It was a relief after surgery, and it'sworth noting she went back to nursingquite quickly. That's the sort of personshe is.”

Andy's StoryAndy, 68, originally from Scotland, said“My father had polycystic kidneys anddied at 48. His father died at 38 of thesame disease, and since I wasdiagnosed with the same genetic

FEATURES

Bulletin Spring 2008 11

Giving brought joy for altruistic donor

Barbara Ryder and Andy Loudon

John

Stil

lwel

l/PA

FEATURES

12 Bulletin Spring 2008

Transplantation of the small intestineis a life saving operation for acarefully selected number of patientswith intestinal failure. There arecurrently approximately 600 patientsin the UK with irreversible smallintestine failure who arepermanently dependent onparenteral nutrition (PN). Long termPN can result in serious and life-threatening complications insome patients, including impairedvenous access, line related sepsis andPN-related liver disease. During thelast two decades, small intestinetransplantation has emerged as aviable alternative to PN for a selectedgroup of patients, and can offersignificant improvements in thelongevity and quality of their lives.

The first long-term successful humansmall intestine transplants wereperformed in the 1980s. Since then over

1,000 small intestine transplantshave been performed in more than 30countries. So far, 18 adult patients havereceived a small intestine transplant inthe UK. This number is likely to increaserapidly, and two patients weretransplanted in 2007 at Addenbrooke'sHospital, Cambridge, which is one ofonly two centres with an active adultsmall intestine transplant programme.Oxford has recently been designated asthe second UK centre for intestinaltransplants in adults (for those patients not requiring simultaneoussmall bowel and liver transplantation).Additionally, there is an active paediatricsmall intestine transplant programme atBirmingham Children's Hospital.

Current indications for small intestinetransplantation in adults are related tocomplications of parenteral nutrition inthe setting of irreversible intestinalfailure. Common causes of adult

intestinal failure include short gutsyndrome (following surgical removal of all or most of the small intestine) due to interruption of the blood supply,Crohn's disease, trauma, Gardner'ssyndrome (characterised by presence of gastrointestinal polyps and otherbone and soft tissue tumours), desmoid disease (presence of multiplebenign abdominal tumours) andmotility disorders.

Indications for small intestinetransplantation

Irreversible intestinal failure and:• Failing venous access• Severe recurrent line sepsis• Parenteral nutrition-related

severe liver disease• Extensive evisceration

(desmoid tumours)

Small Intestine Transplantation in Adults

problem, I've been living on borrowed time.

“What Barbara has done for me really is amazing. I've felt overwhelmed andhonoured by what she's done, and it'srestored my faith in human nature. The operation's given me my life backand given me freedom.”

For two years, Andy underwent dialysisthree times a week which limited whathe could do. The new kidney nowallows him to travel freely, and visit hisdaughter in Scotland. Andy and his wifeHilary are planning a trip to Florida next year.

Andy has benefited from a new form of donation that gives more flexibility in who can donate to whom, whilstensuring that key ethical principles are maintained.

Before the new Human Tissue Actbecame law, organ donations fromliving people could only be made to people who were related or who had close personal relationships or ties.

Shirley Harrison, Chair of the HTA, said: “This is a truly selfless act and a magnificent gift. Barbara is a shining example to us all of whataltruism means in practice. I'mdelighted that she and Andy have 'gone public' so that people can seewhat it means to donate an organ inthis way.”

Adrian McNeil, Chief Executive of theHTA, said: “Since September 2007, theHuman Tissue Authority has approvedfour altruistic kidney donations.Ultimately, we hope to be able toapprove around 10 donations of thiskind each year. We regulate alltransplants from living donors in theUK, and have recently approved our1,000th transplant - another majormilestone.

“Most organs for transplants aredonated from people who have died,but every year, more people receiveorgans from living donors. New ways ofdonating organs, such as altruisticdonation, provide opportunities for thisfigure to increase.”

The Department of Health hasannounced the appointment of a Chair and 18 Members to theAdvisory Committee on the Safetyof Blood Tissues and Organs.

Mr John Forsythe, consultantTransplant Surgeon at the RoyalInfirmary of Edinburgh, is Chair ofthe new Committee and said: "I welcome this opportunity to workwith so many eminent colleagues inorder to secure the best scientifictechnical and operational advice onthe safety of blood, tissues andorgans. The independent advicewhich we give will enabledepartments, blood services andtransplant professionals to managethe risks in this important area andcontinue to provide a first classservice to the NHS and the public.Communicating our findings to thepublic, to donors and to healthprofessionals, throughout the UK,will be one of our key priorities."

SaBTO Committeeannounced

FEATURES

Bulletin Spring 2008 13

Transplantation of the small intestine,with or without the large intestine, can be performed in Cambridge as anisolated graft or as part of a multi-visceral transplant in combination with other abdominal organs including duodenum, stomach, liver, pancreas and kidney. While organs for multi-visceral transplants are alwaysfrom cadaveric donors, there is someexperience of isolated small intestinetransplants from living donors,including one transplant betweenidentical triplets in Cambridge.Currently approximately 40% ofpatients remain on the small intestinetransplant waiting list for at least oneyear, or longer if composite grafts arerequired. Therefore, it is very importantthat suitable cadaveric multiorgandonors are considered for potentialsmall bowel donation where possible.

Small intestine transplantation istechnically challenging and is oftencarried out in patients with multipleprevious abdominal operations, addingto the complexity. Multivisceraltransplants can be performed 'en bloc'or as isolated organs, and necessitatethe availability of sufficient space in the peritoneal cavity to allow thesurgical closure of the abdomen. Full thickness abdominal walltransplantation as an adjunct to smallbowel transplantation has been used to

facilitate the closure of the abdomen incertain circumstances.

Patients are likely to remain in hospitalfor approximately two months after asmall intestine transplant, during whichtime dependence on PN is graduallyreduced to total oral nutrition. A highdegree of immunosuppression isrequired postoperatively since intestinalgrafts are more susceptible to rejection.Additionally, they carry a high load oflymphoid tissue and the donor lymphocytes may mount an immuneresponse against the recipient (graft versus host disease). Nonethelessrejection has become less commonfollowing the introduction of powerfullymphocyte depleting monoclonalantibodies such as Campath(alemtuzumab). The intestine is a non-sterile organ and the intestinalmucosal barrier may become permeableto bacteria in the setting of rejection.Sepsis thus represents the mostcommon cause of transplant-relateddeath in small intestine andmultivisceral recipients.

While the overall five year survival ofpatients on permanent PN isapproximately 70%, there is a largevariation depending on the primarydisease and the mortality rate is muchhigher in patients with complications ofPN. The early outcome of small

intestine transplantation hasdramatically improved over the last fewyears and is now similar to that of lungand heart transplantation. One yeargraft and patient survival approach 80% in the recent series, with a 5-yearpatient survival of approximately 50%.Therefore, while transplantation can stillnot be considered as an alternative forpatients on trouble-free PN, it represents a significant potentialsurvival benefit for patients withcomplications of PN who meet the criteria. Importantly, there is a significant additional quality-of-life advantage for the patient, as it offersthe prospect of a life withoutdependence on the daily intravenousinfusions of water and nutrients. Finally, small intestine transplantation is cost-effective, with an approximatecost of £80,000 in the first year (and approximately £5,000 per yearthereafter) to the NHS compared withan approximate cost of £40,000 peryear for PN.

The assessment of patients for smallintestine transplantation is performed ina multi-disciplinary setting: in our unitpatients are assessed in conjunctionwith the UK referral centre for PN at StMark's Hospital (Harrow, London).Clinicians wishing to refer patients tothis forum may attend the meetings orsend details to either Addenbrooke's orSt Mark's hospitals. Historically, smallintestine transplants were performedwhen there was a danger to thepatient's life from the complications ofPN. Importantly, there is now anemerging philosophy of earlierintervention and reports of transplantsperformed at an earlier stage haveshown encouraging results. It is hopedthat this life-saving treatment will beavailable to an increasing number ofsuitable patients in the near future.

Mr Kourosh Saeb-Parsy Clinical Lecturer and Specialist RegistrarProf. Andrew BradleyHead of DepartmentMr Neville JamiesonConsultant Transplant Surgeon andAssociate LecturerTransplant UnitAddenbrooke's HospitalCambridge

The small intestine can be transplanted as an isolated graft (A), or ‘en bloc’as part of a multivisceral transplant with other organs such as the liver (B)or liver, stomach, duodenum and pancreas (C).

A. B. C.

14 Bulletin Spring 2008

FEATURES

Progress in cornea transplantationApproximately 2,500 corneatransplants are undertaken eachyear in the UK. Over 90% ofrecipients have a clear functioningtransplant at one year. Report byStephen Kaye, ConsultantOphthalmologist and Mark Jones,Statistician UKT.

Over the past five years, there havebeen significant advances in the type of surgery offered for corneatransplantation. These advances have reduced the potential for rejection-accelerated visual recovery.

Penetrating KeratoplastyThe cornea, which is usually between0.5 and 1mm in thickness, can becomeexcessively thickened if the cells liningthe back of the cornea are no longerworking. The cornea then becomes'waterlogged' as if looking through amisty windscreen. This indicationaccounts for approximately 40% ofcorneal transplants.

Conventionally the treatment is toreplace all of the layers of the cornea,known as a Penetrating Keratoplasty or

PK. The results for this type of surgery are good, with approximately80% of transplants clear andfunctioning. The visual recovery periodmay however, be prolonged, oftentaking between six months to one year.

Attempts to address this problem have led to only transplanting the back layerof the cornea, the endothelial layer,through a small incision.

Endothelial KeratoplastyThis method was first carried out byCharles Tillett in 1956. Ten years ago, following animal experiments by Ko et alsome four years earlier, Mellesdemonstrated that the donor tissuecould self-adhere to the back of thecornea. This type of surgery, calledEndothelial Keratoplasty (EK), potentiallyleads to a much quicker visual recovery,usually within a few weeks and the eyeis more structurally intact.

The technique has been furthermodified with the addition of amicrokeratome for donor preparation,which has made the procedure fasterand easier for the surgeon, and has also

opened the door to eye banks preparingthe donor tissue before distribution.

Endothelial keratoplasty surgery hasevolved dramatically over the pastdecade, and with changes to make thesurgery faster and easier, the procedurehas the potential to become mainstream.Endothelial keratoplasty now accountsfor 10% of all cornea transplants and isexpected to continue to increase.

KeratoconusThe condition keratoconus accounts forapproximately 25% of corneatransplants. In this condition, the anteriorlayers of the cornea become thin so thatthe cornea bows forwards assuming aconical shape, hence the name'keratoconus'. These patients are usuallyyoung and have a healthy endotheliallayer lining the back of the cornea.

Because keratoconus affects theanterior layers of the cornea, surgeryhas been developed to only replacethese layers. This involves an intricatelathe or lamellar dissection removingthe anterior layers, leaving the patient'sendothelium intact, and replacing theanterior layers with healthy donorcornea. This procedure is known asDeep Anterior Lamellar Keratoplasty orDALK and accounts for 13% of allcorneal transplants.

As with all new techniques there is alearning curve and these techniques arecontinually evolving to improveoutcomes. With both DALK and EK thepatient's vision may not be as sharp aswith conventional penetratingkeratoplasty and the initial failure rate is higher.

In 2007/08 to date, EK and DALKaccounted for 29% of corneatransplants compared to 10% in2002/03. It is expected that as thetechniques improve, this percentage will continue to increase and maybecome the norm.

0

500

1000

1500

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Progress in Cornea Transplantation.

30-year age difference in sight for cornea recipients

Recent increasesin the age of eyedonors havemeant that fewercorneas areavailable for

transplantation. This is of particularconcern for younger recipients.Analysis of age-matching showedthat younger recipients receivingcorneas from donors aged morethan 20 years older were not at ahigher risk of graft failure at fiveyears and this was still the casewhen comparing corneas fromdonors where the age differencewas greater than 30 years. There was also no difference in post-operative visual outcomes atfive years between the two donorage groups. As a result of thisanalysis, the Ocular Tissue Advisory Group has agreed thecriterion for age-matching andsurgeons may now receive corneasfrom donors up to 30 years olderthan their patients.

Efforts have been made to increasethe number of cornea donors byproviding eight centres with fundingto retrieve 450 corneas per year.The National Blood Service alsoprovides funding to three othercentres. This has resulted in a slightincrease in the number of corneasretrieved and placed into the eyebanks; from 3,821 in 2005/06 to4,021 in 2006/07. However, theaverage age of cornea donors hasalso increased from 68 to 70 in thesame period.

There has also been a reduction inthe number of solid organ donorswho donate corneas. This hasmeant that fewer tissue typedcorneas are available from younger donors. Work is under way to understand why numbershave fallen.

Bulletin Spring 2008 15

FEATURES

Time

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Total recruited to Study

Potential donors for the Study

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Recruitment rate nationally.

Heart transplants in declineThe Heart Study by Heather Small,Vamsidhar Dronavalli and RobertBonser at University HospitalBirmingham, is looking into theidentification of heart donors usingbiochemical probes.

UK heart transplantation (HTx) activity isdeclining as fewer optimal donors areavailable. There is a need to re-examinethe pool of donor hearts currentlyrejected for HTx with the view of utilisingsome of these organs for transplantation.Current methods of donor heartevaluation are poorly validated and somehearts that appear unacceptable oninitial data may in fact be satisfactory fortransplant. The Heart study has beendesigned to address the need for donorheart organs, a way of identifying thosedonor hearts associated with a goodtransplant outcome and those associatedwith a poor transplant outcome.

In essence this is a multi-centred BritishHeart Foundation funded study beingrun in close collaboration with UKTransplant, with unprecedented levels ofsupport from donor transplant co-ordinators, tissue typing laboratoriesand heart transplant centres nationwide.A series of physiological parameters,echocardiograms, (ECHOs),Electrocardiograms (ECGs) and currentlya panel of eight blood markers will beassessed in all heartbeating donorsenrolled on the study. This informationwill be corroborated with outcome datain the recipients to design a scoring

system consisting of point of use testsfor donor hearts.

Since the last update in December 2006,several key steps have been achieved.Compliance with the Human Tissue Actof 2004 and approval from 190 acutetrusts across the UK have been secured.In addition, we are grateful for thesupport of almost all Histocompatibilityand Immunogenetics (H&I) laboratories,donor co-ordinator teams and transplantrecipient teams. The study was rolled outin a staged manner across the UK withmajority of the country recruiting by theend of July 2007.

Due to outstanding enthusiasm amongstall donor co-ordinator teams, therecruitment rate is in the order of 70%,which for a national study is exemplary.

Analysis of donor clinical data, ECGs andECHOs is underway, with the analysis ofbiochemical markers due to commencein early 2008. We anticipate pilot data tobe ready for the spring of 2008.

The study continues to evolve andexpand. We now have ethical approvalto use data collected for the heart studyto look at the outcomes in lung, kidneyand liver transplants in the cohort ofpatients recruited to the heart study.Mechanisms are now being put in placeto facilitate this. The ultimate goal is tohelp improve solid organ transplantoutcomes across the board.

16 Bulletin Spring 2008

APPOINTMENT WITH...

Alison Gane is Head of Data Services at UK Transplant. Before coming towork here, Alison was the Information Governance Manager for Bath &North East Somerset PCT providing support for the PCT, GPs andPharmacists in the area.

Alison has worked for the NHS for 18 years beginning as a PA to theInformation Manager in Frenchay Hospital. While in this position she wasinvited to take on the role of Data Protection Manager and undertooktraining while in post. In 2000 she was responsible for implementing thenew Data Protection Act across General Practices in the Avon Area.

Q You started working at UKTransplant in August 2007. What was the first thing you didwhen you got here?A I looked at the training needs of staff to try and see what policies and guidance the organisation had inthis area.

Q What are your work priorities?A I would say there are two that standout. My first priority is ensuring thatpeople's data held, used and shared atUKT is as safe and secure as I wouldlike my own to be. My second priority isensuring clear standards of informationhandling are set and that all staff areaware of what their responsibilities arein this complex area.

Q What impact has the DataProtection Act had on the NHS?A The Data Protection Act has ensuredthat the NHS only collects information itneeds to deliver the best possible careand treatment to people. It also ensuresthat people are informed about whatinformation we collect and why – it hasprovided a framework to ensure thatthe NHS complies with the law onholding, obtaining, recording, using andsharing information.

Q What are your short term aims?A Ensuring all staff understand theimportance of the data protectionagenda and are not afraid to changepractices if there is a need.

Q What are your long termobjectives?A To make sure everyone's personalinformation continues to be dealt withlegally, securely, efficiently and

effectively and that everyoneunderstands how confidentiality andsecurity applies to their role.

Q What is your greatest success?A Passing my examination on DataProtection and successfully getting GPsto understand the importance of thisagenda in their everyday role.

Q What is your greatest fear work-wise?A I am confident that the data held at UKT is safe and secure but I wouldhate to have a breach of security like the recent one in HM Revenue and Customs!

Q How does the Freedom ofInformation Act work alongside theprotection of personal data?A The Freedom of Information Act isonly applicable to public bodies andensures we are open and honest aboutthe way the organisation spends publicmoney. It applies only to businessinformation. Data Protection is relevantto personal data about people and isapplicable to any business which holdsinformation about you.

They are similar in the fact they requireus to ensure all information is managedappropriately, rules are set on how westore, retain, and dispose of informationand are governed by the InformationCommissioner.

Q Do you think electronic data canever be truly safe?A I do believe that as long as anorganisation keeps their policy procedureand guidance up to date and providesregular training and staff awareness that

data can be protected. If there is ever any uncertainty then staff must alwayscome to someone in my position to clarify how to store or send confidentialinformation. As an organisation we really do all we can to ensure data isprotected. This is a legal requirement and the level of security we use and thecost and effort involved reflects the nature of the information and the harm that might be caused from theunauthorised disclosure or loss of that data.

Q In what way does the Taskforcereport impact on what you arerequired to do?A The legal and ethical issuessurrounding the report may have abearing on my work, more staff to train, wider exchanges of informationwill probably occur and we need toensure that is in line with the DataProtection Act.

Q What is the most important thingon your agenda now?A I need to make sure that information is kept secure and all dataexchange with other organisations isjustified; only the minimum data isexchanged to fit the purpose and that it is sent securely.

Q What job might you have done instead?A I always wanted to work as a hotelmanager in a sunny country!

Q What do you do to relax?A Travel. Listen to music and go to thegym – although that not quite asrelaxing!

...Alison Gane

Bulletin Spring 2008 17

ADVISORY GROUPS

Cardiothoracic Advisory GroupCTAG met on 12 September 2007

An independent review of MSBTO has resulted in theestablishment of the new Advisory Committee on the Safetyof Blood, Tissues and Organs (ACSBTO).

A national organ sharing scheme for sensitised patientswill be piloted initially for hearts only. Donor hearts will firstbe offered to any urgent patients registered. Adult donororgans will only be offered for adult sensitised patients andpaediatric donor organs will only be offered for paediatricsensitised patients. Sensitised patients will be categorisedinto bands according to their reaction frequency with thosepatients in the higher band taking priority over those inlower bands. Work on this scheme is ongoing.

As an interim measure to support the national organsharing scheme for sensitised patients a payback scheme forthe exchange of donor hearts will be developed.

Centres are encouraged to specify a height/weight foreach urgent patient when a registration is submitted for theurgent heart allocation scheme.

Comments are awaited on draft inclusion criteria forurgent and non-urgent heart allocation schemes. The current position of not transplanting patients withinthree months of a previous cardiothoracic transplant willremain unchanged.

Centres were reminded of the need to comply with newrequirements for additional documentation to accompany allregistrations onto the urgent heart allocation scheme.

The current arrangement for organ reciprocation betweenthe UK and the Republic of Ireland will continue into 2008 inorder to recognise the number of Irish patients on theNewcastle transplant list.

Revised Cardiothoracic National Protocols and Standardshave been issued and are on the UKT website.

Pancreas Advisory GroupPAG met on 19 October 2007

A national islet transplant scheme, funded by the NationalCommissioning Group (NCG) is to be established from 1April 2008. The detail of data collection and the transport ofislets have yet to be agreed.

Work is underway to amalgamate the pancreas transplantlists at Newcastle and Edinburgh. The Duty Office at UKThas implemented an interim measure to allow a sharedbalance of exchange for these two centres, effectivelytreating them as one centre for this purpose.

When considering pancreas and kidney retrieval from non-heartbeating donors there is no obligation for a centreto give up a kidney for combined transplantation. If centreswish to come to a local agreement to allow this they may do so.

Ministers have now formally de-designated Liverpool as apancreas transplanting centre.

Co-ordinators to offer all pancreata not suitable for solidorgan transplantation to Expolink for consideration for islet transplantation.

A separate research group has been established to identifywhat research activities are appropriate in relation to kidneyand pancreas donation and transplantation. Any suggestionsfor research projects will be reviewed by this group whichwill meet quarterly.

Monitoring of 30-day patient mortality and graft failurewill be carried out for all pancreas transplants, but not re-transplants, multi-organ or multi-visceral transplants.

Blood group 'O' donor pancreata should only be used forblood group 'O' recipients unless as part of the plannedsensitised pancreas allocation scheme when blood group 'B'recipients may also receive a blood group 'O' pancreas.

In order to track waiting list mortality, centres shouldadvise UKT of patient death. In addition, centres shouldinform UKT when patients are removed from the list due toa kidney transplant from a live donor.

A new system of rotating allocation for pancreata is to beimplemented. This will only apply to imported pancreata, ie for pancreata offered outside of zone. In this caseNewcastle and Edinburgh will be considered as one centre(with a local balance of exchange between themselves forlocal organs). In addition, this system of rotating allocationwill also apply to the pancreas fast-track scheme. Further work will need to take place on this new systembefore it can be implemented so in the interim the balanceof exchange will be zeroed at a date to be confirmed by theDuty Office Manager at UKT.

The nationally acceptable lower donor age limit forpancreata is eight years (until such time as agreement is reached by KAG to the removal of the lower limit). The national guidelines will change to raise the upper agelimit for donors to 60 years. All pancreata from donors 60years or less must be considered for transplantation andretrieval in accordance with current arrangements. Any centre wishing to consider pancreata from donors over60 years of age should record this with the UKT Duty OfficeManager. Offers will still be made according to the currentoffering protocol, allowing for the fact that the number ofcentres offered the pancreata will differ should the donor beover 60 years of age.

A new form developed to collect deceased donor pancreasinformation should be completed in all cases where there isintent to retrieve even if the organ is subsequently seen andnot retrieved. The retrieving team complete sections 1 – 12,including details of damage. The form should thenaccompany the organ and the transplanting team completesections 13 - 16.

By including multiple referring units, the second pilot ofthe patient consent scheme had demonstrated that all renalunits are able to set up the required scheme in their

18 Bulletin Spring 2008

ADVISORY GROUPS

particular setting. National implementation of the schemefor renal and pancreas units will take place over a period ofsix to nine months beginning in January 2008.

Donation Advisory GroupDAG met on 5 November 2007

Work is ongoing to produce standard guidelines fortesting for pregnancy in potential deceased organ donorstaking into account the situation of heartbeating and non-heartbeating donation.

Work is ongoing towards a pilot for completion ofPotential Donor Audit forms via a web based system.

An update on the Assessment of Collaborative Requesting(ACRE) Study confirmed that 44 sites had now been signedoff to take part in the study with a further 26 going throughthe approval process.

The ICS had developed a framework and guidelines toprepare acute hospitals for a flu pandemic. Blood andassociated services, and the supply of tissue products andgrafts may become compromised due to the potentiallyreduced donation rates associated with a pandemic threat.It may be possible for elective living related donation tocontinue if the infrastructure is in place to support this. In those scenarios where patients spend a significant time inan ICU ie after undergoing liver transplantation, there islikely to be limited capacity to care for these patients. Inaddition, the availability of donor organs is likely to beaffected and, in all probability, Trusts would experience a six to eight week period during a pandemic when notransplants could be undertaken. The expectation is thatmost forms of transplantation would cease during this time.

The Human Tissue Authority is reviewing the Codes ofPractice that underpin the Act and revised publications areexpected to be circulated for consultation in 2008. The HTAhave issued interim guidance, for inclusion in the revisedcodes, on a final cut-off point for withdrawal of consent todonation. The guidance will state that once the donor is intheatre consent to donation cannot be withdrawn.

The ICU consultants in one unit have taken the view thatnon-heartbeating donation and heartbeating donationshould either be offered simultaneously or not at all in allbrain stem dead potential donors. Due to the difference inboth the quality and quantity of organs betweenheartbeating and non-heartbeating donations DAGmembers agreed that the option of non-heartbeatingdonation should only be given if the family expresses a wishfor the donation to take place after the heart has stopped.The consultants in this unit will be asked to reconsider theirdecision in light of this. Any clinician working within an ICUin the UK should have the right to opt out of organ donationissues if they wish but it should be the responsibility of theTrust to ensure that there is another clinician available todeal with these situations.

Instances of autorescuscitation in non-heartbeating donors are believed to be extremely rare but in light ofconcerns expressed by some sections of the intensive carecommunity a prospective audit will be carried out during2008 to identify any instances where autoresuscitationoccurs and indicating the local policies in place to deal with this situation.

Liver Advisory GroupLAG met on 14 November 2007

Guidelines for the assessment and management ofpatients with liver disease as a result of drug/substanceabuse have been agreed and circulated to UK liver centres.

The Liver Selection and Allocation Steering Group will, in future, consider all proposals relating to innovativetechniques in transplantation prior to their submission to theLiver Advisory Group.

A proposal from the Pancreas Advisory Group on anational protocol for liver and pancreas retrieval was agreed.

In the priority sequence for offering for multi-visceralrecipients a paediatric multi-visceral recipient should takepriority over an adult multi-visceral recipient.

New selection criteria for patients onto a transplant list for adult orthotopic liver transplantation were introduced on 1 September 2007. Data on newly-listed patients usingthese criteria are being captured in all centres over a six-month period to enable the size of the donor pool for each centre or region to be calculated taking into accountthe number of new patients registered at each centre.

For elective patients, blood group O donor livers can nolonger be given to blood group B patients without first being offered to all blood group O patients in the UK,although blood group B patients can be considered for liverleft lateral segments from blood group O donors.

Those liver centres with outstanding consent data for thepatient consent scheme will be followed up to ensure thatconsent is received from all transplant patients in order tocomply with the requirements of the Patient InformationAdvisory Group (PIAG) on the use of personal data. All centres will receive a monthly report on the number ofcurrent outstanding consent forms from January 2008.Visits will be offered to centres that are having difficultieswith implementing the scheme.

Where a local designated liver retrieval team receives twodonor referrals at the same time and is only able to attendone, the retrieval team for the next centre in the offeringsequence should be approached to carry out the retrievalfrom one of the donors and the liver should then be offeredto that retrieving centre to enable the organ to be utilisedwithin an appropriate period of time.

Bulletin Spring 2008 19

ADVISORY GROUPS

Kidney Advisory GroupKAG met on 5 December 2007

An oversight group for paired donation has beenestablished to give advice on clinical issues relating to a rangeof one-off situations.

A Kidney and Pancreas Research Group has beenestablished to focus the direction and improve the quality of UKT's research activities in kidney and pancreas donationand transplantation.

A proposal is to be developed for pooled donation byincorporating two-way or three-way exchanges to increasethe number of transplants identified.

The current safeguards for the 2006 Kidney AllocationScheme (KAS) will be retained for a further six months, then at that time these will be reduced with a view tophasing them out completely in 18 months' time. Paediatric patients in Tier E, if on the waiting list for two ormore years, will be prioritised within the scheme.

Since 2003/04 the number of registrants to the UK active kidney transplant list each year has increased markedly.Data show that this is linked to an increased number ofregistrations in patients aged 40 years and older, and toincreased listing of patients not yet requiring regular dialysis.

A paediatric sub-group of the Kidney Advisory Group wasestablished to consider specific paediatric issues.

A pilot programme is to be established at King's CollegeSchool of Medicine to use a left lateral liver lobe and renaltransplantation in highly sensitised renal transplant recipients. Potential donors will be identified using theaccepted national criteria for split livers. Selection criteria forpotential recipients would include being highly sensitised,being on the deceased transplant list for a minimum of threeyears, and having no obvious potential live kidney donors.Edinburgh renal unit is also to be approached to take part inthis study.

Implementation of a full patient consent scheme in allrenal units will take place during 2008. This scheme onlyapplies to new patients and the provision of posters andleaflets in the units/clinics will be classed as informedconsent for existing patients.

The collection of UKT living donor follow up data will change to years one, two, five, ten and every five years thereafter.

When the UKT computer system is unable to carry out amatching run for the allocation of kidneys the default positionis that they are to be allocated locally. On occasions where thedonor is suitable as a kidney/pancreas donor and there is asuitable recipient, then one kidney should be offered with thepancreas. The allocation of the second kidney is theresponsibility of the local renal unit. If the kidney matchingrun subsequently becomes available before the agreed cut-offpoint for confirmation of the kidney/pancreas offer, then anypriority kidney patients will be offered the kidney as normal.

The NHS is 60 on 1 July this year. Here aresome highlights from over the years.

1948 The birth of the NHS brings healthcareprofessionals together in one all encompassingorganisation for the first time, to realise the aim ofproviding services that are free for all at the point of delivery.

1952 A one shilling (five pence) charge forprescriptions is introduced.

1954 Daily hospital visits are introduced for childrenwho were previously able to see their parents at theweekends only.

1960 The first kidney transplant takes place atEdinburgh Royal Infirmary, involving identical twins.

1953 DNA's structure is unveiled by two Cambridgeuniversity scientists, James D Watson and Francis Crick,revolutionising the study of disease caused by defective genes.

1958 Polio and diphtheria vaccinations programmeensures that everyone under the age of 15 isvaccinated.

1954 Smoking is linked to cancer for the first time bythe British scientist Sir Richard Doll.

1961 The contraceptive pill is made widely available,resulting in the number of women taking the pill rising from approximately 50,000 in 1962 to onemillion in 1969.

1978 The world's first test-tube baby, Louise Brown, is born as a result of in-vitro fertilisation (IVF),developed by Dr Patrick Steptoe.

1983 The Griffiths Report on NHS management ispublished. This leads to the introduction of generalmanagement in the NHS.

1980 MRI (magnetic resonance imaging) scans are introduced.

1987 The world's first heart, lung and liver transplant is carried out by Professors Sir Roy Calne and JohnWallwork at Papworth Hospital in Cambridge.

1979 The first successful bone marrow transplant on a child is carried out by Professor Roland Levinsky atGreat Ormond Street Hospital.

1986 The first Aids health campaign uses shock tacticsto raise awareness.

1980 Keyhole surgery is used successfully for the firsttime to carry out the removal of a gall bladder.

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The National Assembly forWales has agreed to funda multi-million poundrenal transplant centre inCardiff that could doublethe number of transplantsperformed at the city'sflagship hospital by 2012.

The announcement wasmade by the Assembly'sHealth Minister Edwina Hart in January and the firstphase of the developmentcould be ready by as early asthis spring.

The Assembly will invest£4.2m into the state-of-the-art 21-bed facility, whichofficials estimate could leadto 160 kidney transplantsbeing performed annually by 2012.

Just 89 were performed atthe hospital last year, whilein Wales alone more than400 people are waiting for akidney transplant. The firstphase of the developmentwill allow for up to 115transplants every year.

The new centre is also beingsupported by the KidneyWales Foundation, which isaiming to raise £100,000towards the project. Itsrecent People Like Uscampaign helped raiseawareness of the plight ofkidney patients in Wales andwas praised by Mrs Hart.

Roy J. Thomas, the charity'sexecutive chairman, said:“This is wonderful news forthe many hundreds of peopleacross Wales who need atransplant. We have longcampaigned for a facility ofthis kind and through thegenerosity of donors andtheir families hope that it willlead to hundreds moretransplants being performedover the coming years.

“In March, we will be holdingour annual Walk For Lifeevents throughout Wales.Last year, hundreds of peopletook part helping raise£80,000. We are hoping thisyear, with more than 40fundraising walks planned,we can increase that figure to£100,000, which will ofcourse go a long way tohelping support the newkidney transplant centre.”

Louise Collar, team leader of the donor transplant co-ordinator team at theUniversity Hospital for Wales,said: “This is an excitingannouncement for all thosewho work withintransplantation in Wales andthose needing a kidneytransplant.”

For more information about the new kidneytransplant centre and WalkFor Life events visitwww.kidneywales.com

AROUND THE COUNTRY

20 Bulletin Spring 2008

Kidney Transplant Centre in Cardiff

University Hospital of Wales at night

1988 Free breast screening is introduced to reduce breastcancer deaths in women over 50.

1962 Enoch Powell's hospital plan approves thedevelopment of district general hospitals, laying out apattern for the future.

1962 The first full hip replacement is carried out byProfessor John Charnley at Wrightington Hospital in Wigan.

1968 The first heart transplant is carried out by SouthAfrican-born surgeon Donald Ross at the National HeartHospital in London.

1967 The Abortion Act makes abortion legal for up to 28weeks of pregnancy.

1967 The Salmon Report sets out major developments in nursing staff structure and the status of nurses inhospital management.

1972 CT scans revolutionise the way doctors examine thebody, allowing three dimensional images to be producedfrom a large series of two dimensional X-rays.

1968 A British woman gives birth to first sextuplets afterfertility treatment.

1975 Morphine-like chemicals in the brain (endorphins) arediscovered in Scotland by John Hughes and Hans Kosterlitz.

1990 The NHS Community Care Act introduces budgetsfor health organisations, creating the concept of an 'NHS trust'.

1991 The first 57 NHS trusts are established, with the aimof increasing the focus on services in the community.

2004 'Patient choice' pilots trial methods of offeringeveryone requiring treatment a choice of both hospitaland time of appointment.

1998 NHS Direct is launched, later becoming one of thelargest single e-health services in the world.

2007 The national smoking ban makes smoking illegal in virtually all enclosed public places across England and Wales.

1994 The NHS Organ Donor Register is set up for peoplewishing to donate their organs.

2007 Introduction of the robotic arm leads to groundbreaking heart operations for patients with fast or irregular heartbeats.

2000 NHS walk-in centres are introduced to offer easyaccess to a range of services.

2008 Lord Darzi publishes his final report into the futureof the NHS; Our NHS, our future sets out a future visionfor a new world-class NHS.

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