bulletin...bulletin the magazine for everyone involved in organ transplantation and donation issue...

bulletinThe magazine for everyone involved in organ transplantation and donationIssue 67 Autumn 2008

In this issue: Sally Johnson joins NHSBT as Director of Organ Donation andTransplantation. We catch up with our Superhero campaign as a new onlineapplication is launched. Gold all round at this year’s Transplant Games inSheffield. Donor co-ordinators report back on a trip to Brussels. And AnAppointment with Paul Murphy, the new Clinical Lead for Organ Donation.

CHIEFLY

2 Bulletin Autumn 2008

Hello, this is my first Chiefly as theDirector of the newly createdOrgan Donation andTransplantation Directorate of NHS Blood and Transplant. I'd liketo introduce myself by telling yousomething about my pastexperience, why I'm doing this joband what my plans for the futureof this part of the organisation are.

I have worked in the NHS for 18 years in a variety ofroles, most recently as Programme Director for ClinicalReconfiguration across four acute hospital trusts inSouth East London. I worked principally withclinicians, gaining agreement to change clinicalpractice to deliver safer, better quality care forpatients.

Prior to this I was Chief Executive of Enfield PrimaryCare Trust for six years. Here I created the neworganisation and led a staff of 1,000. We providedcommunity and primary care services andcommissioned acute hospital services for a populationof 270,000. Much of my focus was on changing andimproving the way services were delivered so patientsgot better care and a better experience.

I am really excited to be joining NHS Blood andTransplant in this new role at such a pivotal time forOrgan Donation and Transplant services. My job is todeliver the recommendations of the Organ DonationTaskforce which are the responsibility of NHSBT: I know that we can only be successful if NHSBT andthe wider NHS work together to increase the numbersof donors by 50% and so reduce the number of peoplewaiting in hope for a transplant.

Of course a lot of work is already underway: the project to transfer existing Donor Transplant Co-ordinators to NHSBT employment and to employnew Co-ordinators will transfer the first team inOctober and new staff will be joining the organisationin the autumn. The first payments to reimbursehospitals for caring for donors have been made.

Lynda Hamlyn, Chief Executive of NHSBT has alreadywritten to the Chief Executive and Medical Directorsof all acute hospital trusts drawing their attention to

the Taskforce recommendations and asking them toestablish donation committees and organ donationChampions. This should make sure that the wider NHShas a greater focus on organ donation.

We are also taking forward work to commission organretrieval teams and we expect to publish ourcommissioning strategy shortly. This will take intoaccount the helpful advice we have received fromexperts in the transplant community.

I am delighted by the appointment of Paul Murphy(see page 16) as the new Clinical Lead for OrganDonation. Paul will lead work on reaching out toclinicians throughout the NHS to help implement therelevant recommendations of the ODTF. His longexperience and personal contacts will proveinvaluable to our task of working with hospital truststo deliver more organs for transplantation.

As I write, I am coming to the end of day two in thejob. So far I have shortlisted for the roles of AssociateMedical Director and Clinical Lead for Organ Retrieval,met a range of colleagues both in Bristol and Watford,gained valuable insight on the issues from ChrisRudge and as part of my induction, got a date in thediary to view a live donor transplant next week. I look forward to meeting many more members of thetransplant community over the next weeks andmonths.

My early priorities are ensure four teams of transplantco-ordinators join NHSBT this year, to make sure weget our first organ retrieval contracts in place by April2009 and working with Paul Murphy, develop andbegin implementation of a plan to engage the widerNHS. I look forward to working with you all to get thedonor numbers up and the waiting list numbersdown: then I will know that we are making a realdifference to the many people waiting for that vitaltransplant.

Sally JohnsonDirector Organ Donation and Transplantation

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

bulletinIS PUBLISHED QUARTERLY ISSN 1472-0507

Copy date for Winter 2008 edition 28 Nov 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: [email protected] by Bob Design and Marketing www.meetbob.co.uk

Front cover picture:Freestyle swimmer at this summer’s Transplant

Games in Sheffield

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 Autumn 2008 3

Medical experts from the bonemarrow, organ and blood donationservices gathered in Huddersfield toraise awareness of the need formore donors.

They met on Sunday, 27 July at theGalpharm Stadium, home ofHuddersfield Town FC, at a clinicorganised by the Huddersfield DailyExaminer and NHS Blood andTransplant as part of the 'Sign Up For Sudders' campaign.

The campaign was fronted by AdrianSudbury, aged 27, a reporter with theHuddersfield Daily Examiner who hadbeen fighting leukaemia for 18 months.Adrian had been writing a blog abouthis experiences, both medical andpersonal, that found international

recognition. Adrian lost his battleagainst lueukaemia on Wednesday 20August. His dying wish was to educateas many people as possible about theneed for more donors and to persuadethe Government to include 40-minutetalks about organ, bone marrow andblood donation on the NationalCurriculum for 17 and 18 year olds.

“At a regular blood donation session,mainly we have repeat donors who wehave invited to come. Everyone here today had been inspired by Adrian'scampaign and so they are extra to ourusual donors. I would say it was anabsolutely fantastic result.”

As well as talking to experts at theclinic, 30 or so visitors who attendedthe event were able to give blood and

sign up to the British Bone MarrowRegister and the NHS Organ DonorRegister. A total of 19 people were ableto donate - eight of them brand newdonors. Eight people signed up to theBritish Bone Marrow Register.

Jason McCartney, prospectiveparliamentary Tory candidate for theColne Valley, signed up as a bonemarrow donor and gave blood. He said:“I was motivated by reading aboutAdrian's story. It is such a simple thingto do. Adrian has done such a fantasticjob of highlighting the need for morepeople to go on the register.”

NHSBT chief executive, Lynda Hamlyn,who also attended the event, said:“Adrian has been fantastic in promotingnot just the bone marrow register butalso all the work we do. Only fivepercent of people regularly give bloodand every day we need 7,000 units ofblood to save lives and improve livesthrough treatment.

For more information about Adrian Sudbury's campaign, visithttp://baldyblog.freshblogs.co.uk.

To find out more about giving blood or being a bone marrow donor, call0845 771 1711, visit www.blood.co.ukor www.anthonynolan.org.uk

To join the NHS Organ Donor please call the Organ Donor Line on 0845 60 60 400, or log ontowww.uktransplant.org.uk, or text theword 'GIVE' to 84118. Standard textrates apply.

NHSBT goes to Huddersfield

Donor Carer Elaine Shackleton with Wayne Baker and his partner Rebecca Gray

Baldy's Blog -Huddersfieldjournalist AdrianSudbury's award-winning blog - isto be captured ina new book.

All his Baldy's Blog entries - and manyof the fantastic comments of supporthe received - will be included in Baldy'sBook, due to be published this month.Adrian Sudbury died on Wednesday,

20 August after fighting a long battle against leukaemia. He used his daily internet blog to launch anational education campaign to raise awareness of bone marrowdonation.

As well as the blog, there are alsomany family photographs of Adrian“Sudders” and pictures from his timeas a reporter on the Huddersfield Daily Examiner.

Prime Minister Gordon Brown - whohas vowed to back Adrian's bonemarrow campaign - has written a

personal foreword to the 144-pagepaperback.

In it he says: "My father told me whenI was young that everyone has thechance to make their mark on thisworld, whether for good or bad.Adrian has left his mark for good."

All profits from the book will go to theAnthony Nolan Bone Marrow Trust.

Baldy's Book is priced £7.99 plus £1.50P+P (UK) and is available fromwww.merseyshop.com or call 0845143 0001 to place your order.

Baldy’s Book

From 1 September, UK Transplant has been renamed the Organ Donation and Transplantation Directorate of NHS Blood andTransplant. Many of the articles in this issue of Bulletin were written before 1 September so will still refer to UK Transplant.

Back row, Emma Harris (LLTGL Chairman); Front row (from left to right),Holly Shaw (LLTGL North West Advocate), Emily Thackray (LLTGL Vice-Chair), Paula Tighe (Stephen Tighe's mother).

NEWS


Footballers unite to remember a lifesaver

The Advisory Committee on the Safetyof Blood, Tissues, and Organs (SaBTO)is a Non-Departmental Public Body, withan independent Chair and membersselected by the AppointmentsCommission for their specific areas ofexpertise. SaBTO provides independent advice to the UKGovernment and the Devolved

Administrations on the most appropriate ways to ensure the safety ofblood, cells, tissues, and organs fortransfusion/transplantation. SaBTO alsoprovides advice on the microbiologicalsafety of gametes and stem cells, andconsiders both risk assessment and riskmanagement options for Ministers andUK Health Departments to consider. Attheir inaugural meeting, SaBTO decidedthat a public meeting should be held

every year, focusing on a particular issue within the committee's remit. It has been decided that this year'smeeting on 21 October will focus onissues surrounding variant CJD andblood.

Further detailed information aboutSaBTO and its remit can be found atwww.advisorybodies.doh.gov.uk/acsbto/index.htm.

On 22nd June 2008 a very special five-a-side football tournament tookplace in Thornton, Liverpool, raisingthousands of pounds to increase thenumbers of life-saving transplantscarried out in the UK.

The annual tournament, now in its third year, is held in loving memory of23 year old Stephen Tighe, a formerEverton Youth player and junior leagueteam manager who was attackedduring a night out in Bootle on 3 June2006 and tragically died later inhospital. Despite their shock and grief,Stephen's family made the generousdecision to donate his organs and as aresult three adults’ and two children'slives were saved when his heart, liverand kidneys were transplanted.

On the 1st anniversary of his death hisformer workmates at Shop DirectGroup organised a five-a-side charityfootball tournament in Stephen'smemory, it was such a success that ithas now become an annual event,raising thousand of pounds to date forthe organ donation charity Live LifeThen Give Life.

The atmosphere on the day was electricwith 40 teams competing to win theStephen Tighe Memorial Cup and manymore coming to watch and cheer themon. The Live Life Then Give Life teamregistered lots of people onto the UKorgan donor register and there was evena personal message of support fromEverton captain, Phil Neville, who said:

"I'd like to wish everybody all the verybest for the tournament. It's fitting thatsuch an enthusiastic football fan likeStephen should be remembered in this way. I hope everyone taking partenjoys themselves and I hope that themessage Live Life Then Give Life getsacross."

Chairman of Live Life Then Give Life,Emma Harris, said

“The Tighe family inspire us all at Live Life Then Give Life; not only didthey allow Stephen's organs to bedonated to save the lives of others, but they continue to work to save the lives of countless more throughtheir fundraising and awareness raising. They are such a special familyand we feel honoured to work withthem.”

Stephen's Mum, Paula (44) said“Stephen was such an integral part ofour lives and so many others. He livedlife to the full, always wanting to helpeveryone, and then he gave life in hisdying - how special is that? We are soproud of him and the tournament andthe funds it raises to save lives are themost fitting tribute of all to hisgenerous nature.”

The winning team with Marty Tighe(Stephen's Dad) and Paula Tighe(Stephen's Mum) i.e centre left andcentre right.

SaBTO meeting

The significant role that organ,tissue and blood donation haveplayed in improving healthcare washighlighted in a special DVDproduced by NHSBT to mark the60th anniversary of the NHS.

Among those watching the short filmto coincide with the milestone birthday on 4 July were staff at UK Transplant inBristol, where the occasion was alsomarked by the cutting - and consuming- of a specially-baked cake.

UKT's Director of Donor Care and Co-ordination, Sue Falvey, was on hand

to cut the cake, as well as take theopportunity to highlight some of theachievements of the transplantationservice and the wider NHS.

Facts and figures she focused onincluded how life expectancy has risen over the last 60 years, whileincidence of some diseases has declined, while others - in particularcancer - has increased.

Some things, however, have been thesame throughout the life of the NHS.Sue quoted the observation by AneurinBevan, the Labour Health Minister who was instrumental in setting up theNHS in 1948, who ruefully andaccurately remarked at the time that“expectations will always exceedcapacity”.

Sue concluded by saying that despitethe problems and ever-growingdemands faced by the NHS, the 60thbirthday was an opportunity to remindeveryone - patients and staff - that as a healthcare system it is still the envy of the world.

NEWS


Australia Post has released a 50cent stamp to highlight the issue oforgan donation andtransplantation Down Under.

The stamp was dedicated to raisingawareness of the need for organ andtissue donation in Australia, whichcurrently has one of the lowest organdonation rates in the developed worlddespite having one of the highesttransplant success rates with around90 per cent living after one year.

The stamp is credited with helping toincrease the number of registrationson the Australian Organ DonorRegister during Australia's NationalTransplant Week from 17 February to24 February.

The highly colourful graphic design bynoted Australian illustrator Nigel

Buchanan of the 50 cent stamp showsthe interface between life and death,with the giver's extraordinary act ofgiving depicted through a figureholding out their heart in the palm oftheir hand.

Noel Leahy, Group Manager Philatelicfor Australia Post, said: “The gift of anorgan or tissue donation can mean asecond chance of life for up to 10different people.

“Through these stamps, Australia Posthopes that more people will beencouraged to join the AustralianOrgan Donor Register and makeavailable the greatest gift of all.”

By donating their organs, over 200remarkable people gave the gift of lifeto hundreds of fellow Australians in theyear to January 2007. More than

30,000 Australianshave receivedtransplants in thelast 60 years.

In the year toJanuary 2007,Australia had1,780 people onthe transplant waiting list, while thenumber of people who require tissuetransplants was even greater.

More than 710,000 Australians haveregistered their legal consent tobecome organ and tissue donors, butthere is a desperate need for more.

The special organ donation stamps are available from selected AustraliaPost outlets and via mail order on 1800 331 794. Overseas customers can purchase online atwww.auspost.com.au/stamps

Australian stamp licks awareness

NHS turns 60 - with a big smile In October, the ManchesterEye Bank will be celebratingits 20th anniversary. The EyeBank processes donated eyesfrom across the country andprepare corneas for graftsurgery. In the last year theEye Bank issued 1,409 corneasand 259 sclerae for transplant.

On the 15 October the Eye Bankis organising a series of lectureson eye banking by past andpresent members of the eye bankand eye hospital staff. A speakerfrom the Cornea Bank inAmsterdam will also be talking.

For more information pleasecontact: Zambrano Isaac on Tel:0161 276 5623 or email:[email protected]

UKT staff celebrate.

Royal Manchester Eye Bank.

Music lovers at this summer's V Festivalswere given the chance to become a'superhero' and pledge to save a life bysigning up as an organ donor.

For the first time, the UK Transplant'Superhero' roadshow visited the twofestival venues, at Weston Park inStaffordshire and Hylands Park nearChelmsford to encourage music fans tojoin the NHS Organ Donor Register(ODR).

Organ donation supporters include theStereophonics bass player, RichardJones, who played with the group atthe festivals.

Visitors to UK Transplant's speciallybranded festival tent and gazebo were

invited to become 'caped crusaders' fororgan donation and learn how bysigning up as an organ donor theycould one day save a life. Staff woresuperhero t-shirts and handed outbadges and retro sweets while talkingto festival-goers about organ donationand enabling them to join the organdonor register.

The Superhero campaign continueswith a Freshers' Fair Roadshow visiting15 universities during September andOctober. Tens of thousands of students from Durham to Exeter will be encouraged to visit the Superhero-me site to spread the word to friendsand family.

www.superhero-me.co.uk

As part of UK Transplant's summer'Superhero' campaign a new viralinternet marketing application hasbeen launched to encourage morepeople to pledge to save a life bysigning up as an organ donor. Theviral gives users the chance to'superhero themselves' online with afun photo applicationwww.superhero-me.co.uk

UK Transplant marketing andcampaigns manager, Angie Burton,said: “The viral gives users theopportunity to upload their picture tomake themselves a superhero andpass the results onto friends andfamily.

“It is designed to be fun with aserious message that we hope peoplewill pass on. The beauty of a viralcampaign is that as people get

involved and send their superheropictures to their contacts the organdonation message spreads out tothousands of people.”

This is the first time that UKTransplant has used viral marketing topromote organ donation and it hasbeen chosen specifically to reachyoung adults,

Angie added “Young people arealready fantastic supporters of organdonation, 30% of people on theregister were aged between 16 and25 when they joined. This age groupoften go online to communicate withtheir peers so we hope they will passon the viral and be powerfulambassadors for organ donationamongst their friends and families.”

Although the superhero campaign is targeted at young adults anyone can turn themselves into a life-saving superhero by visiting www.superhero-me.co.uk

UK Transplant has also set up a Facebook page where people canbecome organ donation campaignsupporters and click to join the NHSOrgan Donor Register. You can seethe Facebook page by logging on tohttp://www.facebook.com/pages/UK-Transplant/26728571815

The Superhero campaign will continue with a tour of 15 universityFreshers' Fairs in the early autumn.

NEWS


One of UK Transplant's V Festivalstand staff members awaits asuperhero!

In a summer when everyone is celebrating the success of Great Britain's Olympic heroes, UK Transplant haslaunched its own 'Superhero' campaign designed to encourage young people to become real-life superheroes byjoining the NHS Organ Donor Register.

Superhero summerTurn yourself into avirtual superhero!

Superhero roadshow rolls up to summer music festivals

Visitors to UK Transplant's V Festivalstand are superheroes.


NEWS

UK Transplant has met the first ofseveral Government deadlines forthe Cabinet's Office mandatoryrequirements to improve thehandling of personal data.

The move requires a range of measuresto be implemented across the publicsector in the wake of the HM Revenueand Customs incident in November2007 when sensitive financial recordsof 25 million people on a compact diskwent missing.

Prime Minister Gordon Brownimmediately launched a review ofHRMC's handling of data and orderedCabinet Secretary Gus O'Donnell andsecurity experts to ensure everyGovernment department and agencychecked its own procedures forprotecting personal data.

Tightening up the rules and regulationsrelating to information handling anddata protection was given furtherimpetus following a number of otherinformation security incidents at theDVLA, the Ministry of Defence and atNHS Trusts in 2007/2008.

Since the HMRC security breach lastNovember, the InformationCommissioner's Office has beennotified of almost 100 data breaches bypublic, private and third sectororganisations. Of those in publicservices, 20% came from NHSorganisations.

As a result, says UKT's informationmanager, Alison Gane, all governmentdepartments, including NHSBT, havehad to review their compliance with theCabinet Office requirements to manageinformation and identify anyfundamental gaps by March 2008.

She said: “Arms length bodies areresponsible for managing their owninformation in line with legislation andNHS standards. Ultimate responsibilityrests with the Chief Executive Lynda,Hamlyn, with support from Alan

McDermott as Senior Risk InformationOwner.”

“It is essential that all staff employed orworking for UKT are aware of whatthey can and cannot do with personaldata and policies, procedures andtraining are the fundamental buildingblocks to keeping information safe”,Alison said.

A number of the actions required had adeadline date of 1 July and ourcompliance will be monitored. From 1July onwards, a number of furtheraction will be required to ensure we areprotecting the personal information wecollect and some of the requirementsare listed below:

• Accredit ICT systems handlingprotectively marked information to theGovernment standard and re-accreditwhen systems undergo significantchange or at least every five years.

• Ensure all organisations that work forus comply with the same rules andregulations.

• Keep a record of all staff andcontractors with access to or involved inthe handling of individual recordscontaining protected personal data.

“Clive Mangan, Acting Head of ICTServices, and I are the UKTrepresentatives within NHSBT who areresponsible for making sure that thiswork is completed at the UKT divisionby the Government's target dates andthere is a lot to do,” Alison said.

The first of these new policies andprocedures have already beenimplemented in the form of new ICTsecurity measures and encryption of allportable equipment, including laptops,Blackberry mobile phones and USBkeys.

All laptops and desktops PCs now havetighter security controls to ensureNHSBT polices are adhered to.

Staff are being informed of the newmeasures on sharing of personidentifiable information through a neworange and white guidance leaflet andrecent advice has been sent out abouthow to safeguard the paper documentsas they are equally important.

Alison added: “We have to implement apolicy for reporting, managing andrecovering from information riskincidents, including losses of protectedpersonal data, or ICT security incidents,defining responsibilities and makingstaff aware of them.

“We must be particularly careful whenwe handle information which can beused along with information in thepublic domain to identify an individualand to protect personal data whoserelease or loss could cause harm ordistress to individuals.”

Data protection

Give and Let LiveFor the second year running,more than 3,700 secondaryschools in the United Kingdomwill be offered a free educationresource to raise awareness ofblood, organ, bone marrow andtissue donation.

Building onpositivefeedback thepack has beenadapted todeliver aspectsof the Science,RE, PSHE/PSD& Citizenshipcurriculum.

The educationpack is a joint project between theNational Blood Service and UKTransplant and has proven verypopular with teachers, with over35% requesting the pack in its firstyear.

PSHE teacher Julia Linsley ofShaftesbury School said “I foundthis resource to be all that I neededto enhance teaching of medicalethics. It has enabled me to broacha sensitive subject with young adultsin a thoughtful and positivemanner.”

Schools can order the pack through the website:www.giveandletlive.co.uk

A Yorkshire mother whose three-year-old son is facing a thirdliver transplant is making rag dolls toraise funds for the Leeds Little Liversteam at St James's Hospital.

Rebecca Bowens has made a rag dollcalled 'Mary' for her son Theo andcreated six others for healthprofessionals at the St James's HospitalLiver Disease Unit in Leeds to help otherchildren to cope with their condition. The rag dolls are intended to act as acomforter and to help Theo and otherchildren to understand the life-savingtransplant operation they will eventuallyrequire.

Rebecca said: “Every hospital has playspecialists who use special dolls to showto children who are having transplantoperations. But there is only oneavailable at the hospital and it isn't verycuddly, so I decided to sew Theo a'Mary' doll, which he now takeseverywhere with him.”

Just like Theo, Mary has an operational'scar'. The doll also has a liver madefrom velvet, which can be pushed intoits tummy through a velcro opening toshow what a transplant is like. “It's partof helping him to understand what'shappening to him,” said Rebecca who isan environmental and ethical consultant.

Rebecca has also made a male dollcalled 'Billy' and a story book for Theo'schildminder to use with Theo and hisfriends to help them to understand whyhe isn't always able to come and playwhen he needs to have hospitaltreatment.

At the age of only 13 months, Theo wasdiagnosed with liver failure in February2006 after suffering from a mysteryvirus. He hit the headlines afterundergoing two life-saving livertransplants in the space of just 48 hours.

The two procedures took surgeons at StJames's Hospital a total of 19 hours tocomplete. Doctors later discovered aproblem with the second organ andTheo is now on the waiting list for athird transplant.

Rebecca and Theo's father SimonBowens say their son is “fantasticallybrave” for enduring so much at such ayoung age and taking his illness in hisstride. His mother added: “He's veryeasygoing and generally very happy.”

Theo enjoys everything a normal childdoes, including playing in the gardenand swimming. But he's prone topicking up infections because of theimmuno-suppressive drugs that he hasto take.

Catherine Arkley, at the nationalChildren's Liver Disease Foundation,which is supporting the Bowens, said:“At least two children are diagnosedwith liver disease every day. “It can be afrightening experience, not just for thechild but for siblings too. Anyeducational tool which can promote abetter understanding, particularly forchildren, is commendable.”

Rebecca is taking orders for the ragdolls and says “I can adapt the dollpattern for different sorts of transplantssuch as hearts, lungs and kidneys.” All profits from the dolls are going tothe Leeds Little Livers team andRebecca has already handed over a£3,000 cheque for funds raised from afancy dress sponsored walk in April.

If anyone wishes to order a rag doll,Rebecca may be contacted [email protected].

LORD Mayors from eleven towns and cities in northern England wereamong more than 2,000 people whojoined the NHS Organ Donor Registerduring The Transplant Trust's 2008Torch Relay tour.

The tour began in Carlisle on 29 July,heading north to Edinburgh thefollowing day for the presentation ofthe Donor Bus Replica Trophy. The busthen toured Newcastle, Durham,Middlesbrough, Scarborough, York,Harrogate, Leeds, Doncaster andRotherham. It also visited the openingceremony of the 31st annual WestfieldHealth British Transplant Games, whichtook place 7-10 August in Sheffield.

“It was the wettest relay ever, rainingevery single day,” said the Trust'sOutreach Manager, Sue Pearson. “One minute it was warm and sticky and the next there was torrential rain.People came onto the bus just to staydry and we worked hard to gain justover 2,000 registrations. If it hadn't beenraining, we would have got a lot morethan that.”

The Transplant Trust's next tour is in theSouth of England during October. Thedonor bus will be visiting Oxford on 14October, Reading on 15 October,Brighton Racecourse on 16 October,Southampton on 17 October andSwindon on 18 October.

If you wish to organise a donor bus tourin your region, please contact RayPearson, Donor Bus Manager, on 07833976834 or email [email protected].


NEWS

Transplant Rag Dolls

Transplant Week / Torch Relay

Theo Bowens.

Peter Lawson, Donor Bus volunteerand Lord Mayor of HarrogateCouncillor John Fox.

Dr Glenn Smith has beenresearching into the issuessurrounding ethnic attitudes toorgan donation.

The aim of the study was to explorehow people from three ethnicbackgrounds who were either positiveor at least, ambivalent about organdonation integrated that concept into their lives. We wanted to

understand how they overcame their fears, assimilated their beliefsabout organ donation within theirethnic identity and what issuesconcerning organ donation theycontinued to struggle with. To do this, we undertook oral historyinterviews with 50 participants (18 -68 years) from a white British/Irish,African Caribbean and South Asianethnic background.

We can only briefly touch on ourfindings here, but by exploring thesocial contexts and processes by which people integrated the idea oforgan donation into their lives thisstudy has shown that it is often poorsocial resources rather than individualfeelings or cultural traits that is thecentral issue as to why people do notembrace the idea of organ donation.

Participants of South Asian andAfrican Caribbean descent who wereable to integrate organ donation intotheir lives frequently risked social

isolation because the concept of organ donation was sometimes inconflict with beliefs about whatconstitutes a particular ethnic identity.Moreover, those participants from anAfrican Caribbean ethnic backgroundfelt that the issue of racism within themedical system continued to makethem uneasy about the organdonation process. However, we alsofound that participants from a whiteBritish/Irish ethnic background, sincethe inception of transplantation, hadmore social and cultural resources todraw on than their counterparts ofSouth Asian and African Caribbeandescent.

This is only a brief synopsis of ourresearch which will be published in fulllater on in the year.

The team at Imperial College andKidney Research (UK) undertaking thestudy consisted of: Dr Glenn Smith(Research Fellow), Neerja Jain ofKidney Research (UK), Dr SoniaSaxena, Dr Josip Car and Dr AnthonyWarrens (Principal Investigator).


NEWS

In July, Alan Johnson launched the new End of Life CareStrategy, backed with £286million to provide quality carefor all adults approaching the end of their life. The aim isto help more people to die in the setting they choosewhich is mainly at home surrounded by loved ones.

There is specific reference to organ donation in the strategywhich calls for the carers' care plan to “include discussionabout the patient's wishes for organ donation and practicalarrangements at the time of death and support afterwards.”

This is a great result for organ donation to become part ofthe end of life procedure and is a direct result of therecommendations laid out by the Organs for Transplantreport by the Organ Donation Taskforce.

The good practise model cited by the End of Life CareStrategy comes from Bolton Hospitals NHS Trust. The service,which is jointly funded by Bolton Hospitals NHS Trust and UKTransplant, promotes best practice in bereavement care.

The bereavement team has been running since 2004. Eachhospital ward has two designated end of life nurses whoensure that organ donation is part of the normal end of lifediscussions with relatives. Bolton Hospital Trust website alsohas a statement by the Chief Executive, David Fillingham,linked to from the home page which says:

Trust Statement on Bereavement & Donor SupportBolton Hospitals NHS Trust actively supports that choicesmade in life be facilitated in death by providing patients andfamilies with holistic, quality end of life care, ensuring therights of patients wishing to donate their organs and tissuesat the time of their death, are met in a positive andsupportive manner.

All staff will be educated and supported to ensure all aspects ofend of life care will be provided with efficiency and empathy.

End of Life care strategy

The End of Life Care Pathway.

Ethnic views on organ donation


NEWS

National Kidney Allocation Scheme - two year reviewThe rules for the prioritisation ofpatients to receive deceased-donorkidneys (and hence the scheme forputting those rules into practice)are regularly monitored andreviewed.

A new scheme was introduced in July1998, it was modified two years laterand again after another two years. In April 2006 the scheme wassignificantly revised with further tweaksa year later. These modifications weredesigned mainly to:1) extend the emphasis on prioritisingchildren2) increase the chances of(histologically) 'difficult to match'patients3) reduce cold ischaemic times (the time delay before the kidney isgrafted into the recipient can have adetrimental effect on its survival)4) prioritise patients who have been

waiting a long time5) maximise the outcome potential oftransplanted kidneys.

Monitoring the first 2 years of thisscheme has shown:a) the proportion of perfectlymatched transplants (ie those with thebest survival times) has increasedfrom1 in 5 before the new scheme toabout 1 in 3 in the second year of thenew schemeb) 28% of transplants are now inpatients who have waited at least 5years compared with 10% beforec) the percentage of transplants in'difficult to match' patients hasincreased from 17% before the newscheme to 23% afterd) while the number of paediatric (< 18 years old) transplants has notincreased there has been an increasein access to transplant for the 18-39year group: 30% of transplants

compared to 25% of registrationsonto the liste) the average cold ischaemia timehas fallen by about an hour to 16hours since the new schemef) there has been an increase intransplants for non-white patientsfrom 17% to 19%.

This shows that the introduction ofthe new scheme has very largely hadthe desired effect with no detrimentalconsequences on survival. Howeverwork to balance all these (sometimesconflicting) requirements and optimise the allocation of donatedkidneys is ongoing.

The details of the scheme can be seenon the UK Transplant website at:http://www.uktransplant.org.uk/ukt/about_transplants/organ_allocation/kidney_(renal)/kidney_(renal).jsp

More than 16,000 people in Waleshave joined the NHS Organ DonorRegister since the launch of acharity-led campaign aimed atgetting more people talking abouttheir organ donation wishes.

The Donate Wales - Tell a Loved Onecampaign was launched in May and led by the Kidney Wales Foundation in Cardiff, with a little help from someof its celebrity supporters includingRadio 1's Aled Jones from the ChrisMoyles Show.

Aled features alongside nine otherWelsh stars in a special TV advert beingscreened in Wales promoting organ

donation as part of the campaign. He joined the Donate Wales team atthe Wakestock music festival in NorthWales in May to tell music fans why hehad signed-up and told his family abouthis wishes.

“I'd carried a Donor Card for years, butwhat got me really thinking was 'Whatif I died wearing the wrong trousers?'It's difficult knowing and rememberingif you've got the card on you, but withthe Organ Donor Register you just haveto sign-up once and you've made asecure and lasting pledge.

“We had such a great time atWakestock and it was great to see somany people signing-up. I had greatfun giving away the Donate Walesbeach balls; despite the odd bit of rainthey seemed to go down really well!”said Aled.

More than 350 people signed up at thetwo-day music festival in Abersochheadlined by Welsh singing star Duffy,while at the National Eisteddfod inCardiff in August nearly 800 peoplemade their pledge at the Donate Walesstand during the week-long Welshcelebration.

Supporters have also been using theDonate Wales website to help spread

the campaign message among friendsand family with hundreds sending e-cards to their loved ones saying theyhave signed-up.

Billboard adverts featuring Aled's fellowcampaign supporter Colin Jackson willbe displayed across Wales throughoutSeptember promoting ways people canjoin the Register - including by text -while the Donate Wales campaign teamwill be reaching out to students as partof their freshers' fair tour fromSeptember 22.

Yet, despite the campaign'sencouraging start with thousands ofpeople taking that extra vital step byjoining the Register, the number ofpeople needing a transplant in Walescontinues to soar. At the start of thecampaign 474 people were listed for atransplant, but by the end of Augustthat figure had increased to 518.

Roy J. Thomas, Chairman of the KidneyWales Foundation, said: “More peoplein Wales are talking about organdonation and that is sure to have apositive affect upon the number ofdonors and transplants performed inyears to come.

Visit www.donatewales.org for moreinformation about the campaign.

Radio 1 DJ Aled Jones joins festival-goers in North Wales to supportorgan donation.

Tell a Loved One


NEWS

UK Transplant representatives gaveseveral presentations at the 2008International Congress of TheTransplantation Society in Sydney,Australia.

A number of talks covered aspects ofdonation, corneal and solid organtransplantation on which UK Transplanthas been working.

UK Transplant Managing and TransplantDirector, Chris Rudge, highlighted thesuccess of the UK Kidney AllocationScheme, in terms of transplanting manylong-waiting patients while ensuringwell-matched transplants for patients inwhom HLA matching is important. Twoposters provided supporting details onthe scheme's rationale.

Rachel Johnson gave a presentation onrenal function following hearttransplant in the UK, showing that 11%of these patients reached ChronicKidney Disease stage 4 or 5 within ayear of transplant, with older, femalepatients faring worse.

Rachel also presented the UK's earlyexperience of paired and altruistic donation. There were similar reports from the US and the Netherlands,mostly showing similar difficulties with

identifying suitable paired exchanges,but also demonstrating the benefits of'chain' paired donation wherebyaltruistic donor kidneys are allocated toa patient registered for paired donation,with their donor giving a kidney to thedeceased donor pool, or even on toanother paired donation patient andlengthening the chain. This will be thenext step in UK developments.

David Ansell presented joint work withthe UK Renal Registry on the survivalbenefit of kidney transplantation indifferent recipient age groups.

Chris, Rachel and Dave Collett alsoparticipated in a workshop involving theUSA Scientific Registry of TransplantRecipients (SRTR), the Australian/NewZealand registry (ANZdata) and UKT. Itsaim was to take forward work on thecomparison of kidney transplantoutcomes between the three countries.The group's initial work showed thatgraft and patient survival rates in theUSA, UK and Australia/New Zealandwere similar in the year followingtransplantation, but thereafter, those for the UK and Australia/New Zealandwere higher than the USA.

For the first time, patient level datafrom each country was shared so that

factors related to the recipient, donorand transplant could be accounted for.The differences in graft and patientsurvival rates after one year persisted.These results have stimulated manyquestions and further work is planned.

Bob Merion, of the SRTR, presented the analyses and UKT representativeswere delighted that Professor Sir PeterMorris, in the Congress’ closing session,described this work as being veryimportant for the understanding ofgeographical variation in transplantoutcomes.

Note: Chris Rudge is now the NationalClinical Director for Transplantation atthe Department of Health.

Statistical success at Sydney

12th Annual OrganRetrieval WorkshopTuesday 4 and Wednesday 5November 2008University of BirminghamConference Centre, Birmingham

A two-day workshop designed tooptimise the quality of organs offeredfor transplant by improving the quality of retrieval practice between time ofidentification of the donor to retrieval,storage and preparation forimplantation. The course is aimed atretrieval team members involved insingle organ or multi organ surgicalretrieval of organs intended fortransplant and includes lectures backedby video presentations together withpractical demonstrations of retrievaltechniques. The course fee of £130includes all training and one night’s hotel accommodation and meals.

Contact:Kathy ZalewskaCorporate ServicesOrgan Donation and TransplantationDirectorateTel: 0117 975 7589Email:[email protected]

Sydney Opera House.


FEATURES

The Manchester Donor Co-ordinatorteam have implemented a requiredreferral scheme that is showingresults after only three months.

Preston, Chorley and Bolton hospitalsoperate a system where every patienthaving treatment withdrawn or is beingbrain stem tested is referred to thetransplant co-ordinators. The patient'ssuitability for organ donation is thenassessed by the transplant teams. These particular intensive care unitshave 100% referral rates and requiredreferral is trust policy.

When the 14 recommendations fromthe UK taskforce were released inJanuary this year our team decided thatin order to be able to increase donornumbers by 50% over the next 5 yearswe needed to look carefully at thereferral rates from our other hospitals.

We have 20 hospitals within our regionwith approximately 200 level 2/3intensive care beds. The Potential DonorAudit that we carry out on the intensivecare units showed that missed potentialwas on the increase and that weneeded to introduce a system thatwould trigger medical and nursing staffinto making the referrals to us.Although it is fine for families to declinethe option of organ donation weneeded to be able to offer the option tofamilies in order to allow them to maketheir own choices.

The team decided that we needed asimple easy to understand document for hospital staff to use. We are all

nurses ourselves and wanted to makethe policy user friendly and explain itself in a clear and concise way. We collectively sat down and wrote a 9page document. The document itself is very transparent and very easyto understand. It is a document abouthow to make referrals, which patientsto refer and when to involve theTransplant Co-ordinators.

We decided to approach one of ourlarger trusts (Pennine Acute HospitalsTrusts) which has 4 hospitals as part ofits organisation. Our theory was that ifwe could pilot a Required Referral TrustPolicy at some of the hospitals withinPennine it could be monitored andaudited over 6 months to see if wecould achieve a 100% referral rate. If itwas successful then we would be ableto roll it out across the rest of theregion. If every one was in agreementthen we provisionally set a launch datefor the policy to be the 1st July 2008.

We had set ourselves an enormous taskand needed to meet with all theappropriate staff and Trust boardmembers.

Our first meeting was at the divisionalnurse managers meeting where wepresented our proposal. From thismeeting it was decided that NorthManchester and Fairfield hospitalswould be our pilot sites with the othertwo sites able to join in the pilot schemeif they so wished. Rochdale Infirmarydecided to launch on the 1st as well.We then met with the Trust’s MedicalDirector, Ruth Jameson and then theChief Executive, John Saxby. We couldnot have asked for a more positiveresponse to this proposal. Our simplebut direct policy was seen by the TrustBoard and given the green light tolaunch as a pilot policy on the 1st July2008. Obviously we were delighted.

In order for this concept to work wenow had to make sure that all the staffwere fully updated about organ

donation and what required referralactually was. Lists of all the staff on thethree sites were forwarded to us andthe reality of almost 200 staff to teachseemed enormous.

But, throughout the month of June we managed to go to the relevantIntensive Care Units every day anddelivered 30 minute teaching sessions to170 medical and nursing staff. It wasreally hard work juggling the on calls andother work that we do but our diary wasfull. We had to be ready for the 1st!!

The teaching sessions really helped usget to know the staff on the units andthey in turn welcomed us in as part oftheir extended teams. Our mainemphasis in the teaching sessions was toexplain that although organ donation isa very personal decision we should notdecide if a person is suitable fordonation based on our own opinions.We don't have a right to take awayoffering a family the option of organdonation. The sessions in turn generatedmuch discussion around organ donationand we in response hopefully cleared upany issues or concerns that medical andnursing staff had.

Following this pilot scheme our othertrusts are now also working towardshaving required referral policies and thehope is that eventually the wholeregion will adopt this method.

In the first six months of this year the pilot sites referred four patients with no successful donors. Since the pilot atthe beginning of July, six patients withtwo successful multi organ donors have been referred. If this rate continues then the forecast is that bythe end of the six month pilot schemethere will be a 700% increase in referralsand a 200% increase in organ donorsfor the site.

Jane Monks, Greg Bleakley, LeeAlexander, Dawn Lee, Sue DuncalfManchester Transplant Co-ordinator team.

Required Referral within Pennine Acute Hospital NHS Trust

Manchester DTC team.

Transplant co-ordinators from theSouth West are planning a newtransplantation website following a fact-finding educational trip bythree transplant co-ordinators from Derriford Hospital, Plymouth to Leuven Hospital, outside Brussels.

Christian Chalker, Donor Transplant Co-ordinator, South West, said theywere invited to Leuven, to see how theLife Port (kidney perfusion machine)works and meet Frank Van Gelder, thehospital's transplant co-ordinator teamleader.

Christian said: “We spent part of thetime with Dirk, the computer whiz ofthe Leuven team, who designed theirwebsite with an area for the generalpublic and a restricted area for medicalpersonnel.

“This allowed the public to access somedetails on organ donation, a who's whoof the team and the legal aspects oforgan donation. The restricted areacovers aspects of the procedures anddetails relating to donation.

“We thought that a website sharingrelevant information was an excellentidea and we are now in the process ofproducing a similar site, which webelieve will promote and increase organdonation.”

On arrival in Belgium, the team visitedthe Organ Recovery Systems Europeanlaboratories, where they were shownhow to set up the Life Port machines.

The labs had just taken a delivery offresh pigs' kidneys acquired from one of the local farmers. Christian said: “We were shown how to dissect downto the major vessels and ureters,identify left from right, perfuse thekidneys and attach specific clamps forthe perfusion machines. A procedure I'll leave to the surgeons, but if theyneed my expert help I'm available! The hands-on approach certainly gaveme some appreciation of the surgeon's role and how to connect up the LifePort machines.”

The following morning, the team met the five-strong Leuven Hospitalteam, who were predominantlyperfusionists from operating theatrebackgrounds prior to their transplantco-ordination roles.

Christian said “Frank explained theteam's dynamics, the challenges facedin the last five years and the solutionsthey had reached. Their roles were splitduring the day with organ specificrecipient co-ordinators, IT development,managerial and specific programmedevelopment, that is non-heartbeatingfor lung. They all took part in the on-callaspects but recognised that somecolleagues were not as comfortable inthis role as others”.

He added: “There were some obviousdifferences from the current UK practice,including 'opting out'. Also donation isculturally accepted as all organ andtissue not specified. There were somemore subtle differences encouraging alldonor management to be instigated andled in the critical care areas.

“Frank's tour included a visit to the twotransplant wards, one for abdominaltransplants which includes liver,pancreas, kidney and small bowel, theother a cardiothoracic unit. Havingthese specific wards allowed the nursesto specialise in transplantation as awhole not solely on one organ.

“We visited the many critical care areaswhich, in total, held 90 beds. Thepatients were being monitoredelectronically using a paperless system,Frank told us his team were trying toinstall a flagging system within themonitors, which would highlight thepotential donors. The referring personwould then complete a referral formand send it to the co-ordinator.

“The ICU nurses are taught by the co-ordinators that donor care is a part of their basic intensivist course and the role of the co-ordinator is toconsent and offer specialist adviceallowing the nurse providing the care to be empowered. To me, it seemedthat donation was the norm for thishospital the way it should be in theUK.”

Christian concluded: “In the hospitalcanteen, there was a mixture of staffand patients, which is no different fromthe UK, but in Belgium you can have abottle of beer or wine. Obviously, mycolleagues and I remained professionalat all times!”


FEATURES

Rachel Stoddard Murden andJonathan Vercruysse dissecting pigskidneys.

Andrew Broderick taking on a renalchallenge.

TC's fact finding trip to Brussels


The Organs for Transplants reportfrom the Organ Donation taskforceRecommendation No. 9, identifiedthe need to improve the organoffering system. This has resulted inthe creation of EOS, or ElectronicOffering System. EOS will enableDonor Co-ordinators (DCs) to inputdonor data and allow Recipient Co-ordinators to see onscreen what organs are available fortransplant.

The challenge has been to create aprogramme that mirrors the paper, pen,fax and telephone method that ispresently used by the Duty Office.Intuitively designed web based screenshave been developed which translateexisting business processes presentingthem in a logical and user friendly way.

Many Donor and Recipient Co-ordinators have been consultedduring the development phase andfurther feedback is sought throughonline web demonstrations that aretaking place fortnightly (see below fordetails).

EOS is entering a period of simulatedtesting this month (September). DonorCo-ordinator teams from Scotland,Cambridge, London, Leeds andManchester, Recipient Co-ordinatorsand the Duty office will all be inputtingreal but historical data to enable thesoftware to practise on a range ofgenuine scenarios.

In December, two DC teams will beginthe phased implementation of EOSusing real data. This will gradually rollout to the rest of the country. EOS isenvisaged as an evolving project withfunctionality being added over a periodof several months.

Sapient, the company behind thedevelopment of EOS, recognises thatthe electronic system has to be veryflexible to cope with the various needsof the clinical users, many of whomwork on other transplant businesswhilst on call and are often on the roadtravelling between locations.

EOS promises to:

• Reduce time taken for organ offering and transport

• Reduce paper work • Reduce time spent in verbal

communication between all parties• Improve accuracy of data transferred

Steve Bell, Regional Manager for NHSBT Organ Donation says:“From the perspective of NHSBT andthe donor and transplant professionalsthis project is immensely exciting andwe feel is a major step forward in thecare of patients and their familiesinvolved in the truly altruistic process oforgan donation. It will free up organdonor professionals to spend more timewith donor families and assist in theoptimisation of both quality andquantity of available organ fordonation”.

Training on EOS is being developed bySynergy Training to ensure that allmembers of the transplant communitywill have the right skills to make thetransition from the existing paper basedsystem to the new electronic system,ensuring a seamless transplant service is maintained.

Training dates can be seen on thewebsite www.uktransplant.org.uk/healthprofessionals

ORGAN DONATION TASKFORCE UPDATE

JohnRichardson isTeam Leaderfor NorthThames DonorTransplant Co-ordinators

“For many years we have admiredthe electronic systems in place fororgan offering used by ourinternational colleagues in the USand Europe. The project withSapient (who are building EOS) hasgiven us the opportunity to havesome input into the developmentof a system that will meet ourneeds in terms of offering andallow the DTC increased time toliaise with critical care staff,manage and optimise the organdonor and, most importantly,support the donor family or next of kin.

Currently, the organ offeringprocess is quite laborious involvingmany phone calls to each of theindividual transplant centres inorder to identify a suitable recipientfor the organs being donated; thisprocess can take up to five hoursand can be time consuming forboth the DTC and the duty office.In addition it requires the RecipientCo-ordinator to transcribe theverbal information and pass it on tothe Transplant Surgeon forconsideration.

The EOS system will allow for theelectronic transmission to all ofthose involved in the process,allowing quicker access to accuratedonor information; it is envisagedthat EOS will not replace verbalcommunication between the DTCand the recipient centres but willgreatly enhance it.

It has been exciting to see thesystem develop up to this stage andI look forward to seeing it in use inthe near future.

EOS - coming to ascreen near you

A good response has been seen to the nationwide recruitmentcampaign for new donortransplant co-ordinators (DTCs)which was launched in July.

The campaign, aimed at expandingthe numbers of DTCs in line withTaskforce recommendations,generated more than 100 applicationsin the first phase of recruiting whichended in August. A special website –www.couldyouask.co.uk – was

created to give prompt access toinformation for potential applicantsand advertisements appeared inNursing Times and RCN on-line.

Some interviews have already takenplace and a number of provisionaloffers have been made.

A second wave of recruitment willfollow later this year.

The recruitment of new staff hascoincided with the start of formalconsultation with existing DTCs, teamleaders and administrative staff over

their transfer of employment to NHSBT.

The South Thames DTC team isexpected to be the first team totransfer employment to NHSBT inOctober, with the North Thames teamfollowing on soon after in earlyNovember.

New DTCs will be appointed to anational job description.

If anyone is interested in knowingmore, they should go to the “Couldyou ask” website for furtherinformation.


The OrganDonationTaskforce' reportfound that a UK-wide networkof dedicated organretrieval teamsneeds to be

established to ensure timely, high-quality organ removal.

Funding for organ retrieval is currentlyembedded in contracts or Service LevelAgreements between Trusts and eitherthe National Commissioning Group orregional commissioning groups for solidorgan/kidney transplantation. FromApril 2009 organ retrieval will becommissioned by NHS Blood andTransplant, in line with the ODTFrecommendations.

The ODTF was clear that these changeswould bring several benefits, includinga more resilient organ retrieval servicethat is able to respond to an increase in organ donation and a higher quantity of organs available fortransplantation. During the last fewmonths, NHSBT has focused oncompleting a commissioning strategyfor this service.

We have been working closely withProfessor Peter Friend from the BritishTransplantation Society, meeting withtransplant units that carry out retrieval,transplant surgeons, Donor TransplantCo-ordinators, devolved HealthAdministrations and the NationalCommissioning Group, whocommission a substantial proportion oftransplant activity.

During September, I will be writing toall those involved in cardio-thoracic andabdominal retrieval about thecommissioning strategy, inviting themto two events to be held in October todiscuss future plans in more detail. It is clear that the successful delivery ofthe new service, and the benefits it willbring, will only be realised through aclose working relationship betweenNHSBT, transplant surgeons, otherclinical staff, managers and those thatcommission organ transplantation.

Rob Warwick

Rob Warwick is Strategic Head ofBusiness Development at NHSBT andchairs the work stream commissioningorgan retrieval. For further informationabout this work Rob can be contactedon: [email protected]

Rachel Wiseman,Recipient Co-ordinator atSouth ManchesterHospital Trust Cardio-thoracicunit.

“EOS will definitely speed up theoffering system from the recipient co-ordinator point of view. At themoment we are often unaware of any organ donors until theinformation is given to us by the Duty Office at UK Transplant or the

Donor Co-ordinators when it is ourturn in the offering sequence. A heart and lung donor may beregistered with the Duty Office by theDonor Co-ordinator at 5pm, but it cantake several hours for us to beinformed about the donor and thenup to another hour for theinformation to be relayed to us, theappropriate doctors located andconsulted and a decision made.

With EOS the recipient coordinatorswill be paged when it is near theirturn in the offering sequence and thedonor information will be available to

them on the system, cutting outpotentially a number of lengthytelephone calls and thereforespeeding up response times.

In addition, limited donor informationmay be available to all centres as soon as the donor is registered withUK Transplant which will mean certain donors may be highlighted as unsuitable due to size and/or blood group very early in the process. This will hopefully make the whole process smoother and more efficient.“

Organ Retrieval Update

DTC update


Paul Murphy is a Consultant in Neuroanaesthesia and Neuro-critical care atLeeds Teaching Hospital. He joined UK Transplant's Donation AdvisoryGroup in 2006 and is also a member of the Department of Health OrganDonation Taskforce.

Paul trained in Cambridge, Bristol and Leeds and was the first BritishJournal of Anaesthesia Research Fellow in 1990. He took up post as aConsultant in Neuroanaesthesia and Neuro-critical care in Leeds in 1995.

He led the commissioning of a regional Neurosciences Critical Care servicefor West Yorkshire which opened in 1998 and, since that time, has beenheavily involved in medical education and clinical management.

Paul led a clinical team that is heavily supportive of organ donation andwhich has been at the forefront of establishing donation after cardiac death(non-heart beating organ donation) into UK clinical practice.

He joined the Donation Advisory Group at UK Transplant in 2006 andbecame a member of the Department of Health Organ Donation Taskforcelater the same year.

Q What prompted you to specialise?A My undergraduate training inCambridge was heavily scientific in itsemphasis, and this influence has neverreally left me. The attraction ofNeuroanaesthesia and Critical Care was, in part, that it represented a verydirect and real-time application of basic scientific principles, whilst at thesame time requiring you to supportpatients and their families through anepisode of real vulnerability - sometimes, quite literally, life and death situations. Few things match the catastrophic consequences of acute brain or spinal cord injury, and Iam immensely proud of the way inwhich my team care for those whocome under our charge.

Q What else might you have done? A Surgery has never really held muchattraction for me, although there ismuch to admire in the dedication andcommitment that many surgeonsdisplay in buckets. If I hadn't gone intoanaesthesia and critical care, I wouldprobably have gone into renal medicine,and perhaps have found my way intothe transplantation arena by anotherroute, who knows?

Q What aspect of your current rolegives you most satisfaction?A I am first and foremost a clinician. Many of my patients are young adultsand making a real difference in their outcomes has consequences for both

them and their family which is immeasurable. However, 20% of mypatients do not survive and I amparticularly proud of the support thatwe give to families who have to cometo terms with such a prospect. I thinkthat the successes that we haveexperienced with organ donation are areflection of this and a result of thestrong relationship that we developwith families at this time, a relationshipthat is based on honesty and trustthroughout a time that is, frankly,unimaginably awful.

Q What aspect do you least enjoy?A Missing deadlines - a commonoccurrence!

Q What has been the greatestsuccess so far in your career?A My mother thinks that it was beingasked to give oral evidence to theHouse of Lords enquiry into organdonation within the European Union!However, I guess that most people willexpect me to say being a member ofthe Organ Donation Taskforce andbeing part of the Taskforce Report.However, the report will count fornothing if it is not implemented, and soas far as I am concerned this remainswork in progress, to be evaluatedsometime in the future. However,shame on us all if we do not grasp thisopportunity to increase donation ratesin the UK - our generation will not getanother opportunity.

Q What one piece of advice wouldyou give to someone new tointensive care?A To never forget that your patients arejust as real as you, and that theirfrightened and grieving family shouldbe supported in the way you wouldneed to be were it your son ordaughter fighting for life (and maybelosing the battle). To never forget thatthe 'C' in ICU stands for 'care'.

Q What has been the most radicalchange since you have beeninvolved with the transplantcommunity? A I have witnessed severalgovernmental initiatives on organdonation come and go, failing becausethey did not identify and deal with thefundamental issues. This time it isdifferent. I sense a real determinationwith the Department of Health to getthis sorted - to make financialinvestment where it is necessary andmore importantly to recognise andtackle the ethical and legal issues thatmight prevent some clinicians fromconsidering donation on occasion. I think that it also important that weare offering the intensive carecommunity whatever support that theyneed to raise the possibility of donationwhenever they can - it is after all anincredibly difficult task, and sometimes I think that it is all too easy to forgetthat this all occurs, inevitably, withinmoments of the death of a loved one. Finally, I think that this is anincredible opportunity for DonorTransplant Co-ordinators - now is thetime, at last, when they will be able todo the job for which they have beentrained, by getting them into intensivecare units and consolidating their

APPOINTMENT WITH...

...Paul Murphy


APPOINTMENT WITH...

collaborative relationships with criticalcare staff.

Q What do you want to seehappen/achieve as the new ClinicalLead for Organ Donation? A Everyone talks about the Spanishmodel of donation, the Americanmodel and so on - indeed, the Taskforcehas been heavily influenced by RafaelMatesanz and Frank Delmonico. Thesad fact of the matter is that currentlyno-one would dream of coming to the

UK to learn how to do it. I want to see that change, I want a UK model,one that other countries will look atand say 'yes, we will do it that way too'. In particular, I think that we have a realopportunity to show the world howsome of the difficult ethical issuessurrounding donation (particularlydonation after cardiac death) can beresolved.

Q How do you relax?A With three-year-old Joseph at home,

relaxation is a rather alien concept!However, when possible, I try walkingand cycling to revive the spirit and thegym to delay the inevitable. If only Icould find the time, I'd love to do adegree in Astronomy and set up aproper observatory at home.

Q What would you choose for yourepitaph?A That would be for others to judge.

ADVISORY GROUPS

Donation Advisory GroupDAG met on 7 April 2008

Proposed standard guidelines for testing for pregnancy inpotential deceased organ donors (heartbeating and non-heartbeating) are with the Royal College of Anaesthetistsand the College of Emergency Medicine for comment.

There is currently a mechanism in place for recordingincidents of auto-resuscitation in potential non-heartbeatingorgan donors. A prospective analysis of these incidents willtake place as and when any are reported.

It was previously reported that the ICU consultants in oneunit had taken the view that non-heartbeating donation andheartbeating donation should either be offeredsimultaneously or not at all in all brain stem dead potentialdonors. Following consideration of further details from theunit DAG members acknowledged that those involved haddone well in taking this difficult issue forward. The unit hasstated that it is committed to organ donation, bothheartbeating and non-heartbeating, and will continue tooffer heartbeating donation to the relatives of all brain stemdead patients in the first instance, with discussion extendingto non-heartbeating donation only if appropriate.

The number of audited deaths from ventilated patients onICUs was 15,102 in the financial year 2006/07, whilst in2004/05 it was 16,389. The PDA data is based on patientswho were ventilated on the ICU only, although following theimplementation of the Taskforce recommendations it shouldbe possible to monitor those patients ventilated elsewhere,ie the Emergency Department.

The role of DAG is likely to change as a result of theimplementation process for the Taskforce recommendations.Members of the group will be acting as advocates ofchanging practice in organ donation and an indicator ofprofessional opinion. They will also contribute to clinicalgovernance on donor co-ordination. NHSBT will also useDAG for advice on specific issues relating to organ donation.There is also a need to utilise the representation of a wholerange of organisations on DAG to ensure that thoseorganisations take on board the dissemination of theTaskforce report and its recommendations.

The Department of Health is to be asked to resolve theissue of the publication of the Academy of Royal Colleges'draft guidance on the diagnosis of death, as the delay iscausing anxiety amongst the intensive care community.

The Court of Protection has declined to comment onwhether the role of a legal advocate, as in the case of living

donation, can extend to non-heartbeating donation. There isno case law as yet and the Court was not prepared to givean opinion on this matter, even informally.

Discussion on lasting power of attorney legislation and theMental Capacity Act was deferred until the issue ofpresumed consent has been considered by the Taskforce.

The issue of whether potential organ donors with acerebral tumour should be considered for organ donationeven though no biopsy has taken place is to be investigatedand a protocol produced for review by DAG.

A national pilot study on the PDA database is to take placewith feedback on the data gathered.

Work is taking place to recruit additional centres to theACRE study. Any unit with less than 50% collaborativerequesting is eligible to take part in the trial.

Pancreas Advisory GroupPAG met on 25 April 2008

In a correction to the extract from the minutes of the lastmeeting it was noted that blood group 'O' donor pancreatashould initially only be used for blood group 'O' recipientsunless being allocated as part of the planned sensitisedpancreas scheme when blood group 'B' recipients could alsoreceive a blood group 'O' pancreas.

The issue of removing the lower donor age limit forkidney/pancreas donation will be considered by the paediatricsub-group of KAG. In the meantime, the lower donor agelimit of eight years for kidney/pancreas donation will remain.

Centre specific pancreas activity and outcome will bereported on the UKT website. The details of what exactly willbe placed on the website will be submitted to the nextmeeting for approval.

Analysis of data on 558 deceased heartbeating firstpancreas transplants performed between 2001 and 2007concluded that very few pancreas transplants are performedwith a good degree of HLA match between donor andrecipient. There was insufficient statistical evidence tosupport a proposal that national allocation scheme guidelinesshould recommend avoiding 222-HLA mismatched pancreastransplants wherever possible. Instead centres should beasked to consider this data when allocating organs.

The national pancreas allocation scheme for sensitisedpatients will continue in its current format subject to thefollowing stipulations:

a. If a pancreas is accepted for a pancreas-only sensitised patient the kidney would be offered on via the kidney


ADVISORY GROUPS

allocation scheme. If the pancreas is subsequently declined for the sensitised patient it is offered on as a pancreas-only for the remainder of the offering sequence.b. If there are one or more patients on the sensitised list from the local designated centre (ie the centre in whose retrieval zone the donor occurs) then they will receive priority over any other national sensitised patient regardless of sensitisation level. c. If any centre (local or national) accepts a pancreas for a sensitised patient and it is subsequently declined for that patient at or after donor cross-clamp, irrespective of reason given, then that centre can consider the pancreas first for any other sensitised, and then for any non-sensitised patient.d. If a centre (local or national) accepts a pancreas for a sensitised patient and has a positive cross-match test for that patient before donor cross-clamp they can consider the pancreas first for any other sensitised and then for anyother non-sensitised patient at that centre, irrespective of other national sensitised patients (This is so as not to disadvantage those centres which carry out early cross-match tests).e. If a centre (local or national) declines the offer prior to donor cross-clamp for any reason other than a positive cross-match, ie recipient unfit, the pancreas will be offeredon to the next sensitised patient on the national list.A working party will be established to examine the issues

of developing a national sharing scheme for pancreata forwhole organ and islet transplantation. Following an analysisof the use of donor BMI criterion to determine whether adonated pancreas should be offered first to the whole organprogramme or to the islet cell programme it was acceptedthat, as an interim measure, donors with a BMI >30 wouldbe offered directly and preferentially to the UK IsletTransplant Consortium.

UKT and the UK Islet Transplant Consortium will liaise toestablish the development requirements to integrate theallocation process for a national islet transplant programmeinto UKT systems. Whilst work is in progress to develop amechanism for UKT to manage the allocation process, dueto concerns of interpretation of histocompatibility data forthose patients listed for an islet transplant, only non-sensitised patients on the islet transplant list should betransplanted and the status of all patients should be re-checked following transplant.

As part of the annual review of the pancreas zonal sharingscheme arrangements Northern Ireland, which is currentlyallocated to the Edinburgh zone, will transfer to the Oxfordzone, although Edinburgh will still transplant pancreata forNorthern Ireland on request. Harrogate and Hull will transferfrom the Newcastle zone to the Manchester zone.

Liver Advisory GroupLAG met on 14 May 2008

If a non-heartbeating donor falls outside a centre'sacceptance criteria there is currently no obligation to refer thedonor on to another centre nationally. Until the recommendedBTS organ retrieval guidelines are implemented, if the donorfalls outside the local centre's criteria these organs should beoffered out. In terms of retrieval, if the local zonal team is in aposition to retrieve then they should do so but they are notobliged to if the donor does not fall within their criteria. Insuch cases livers from these donors should be offered to othercentres for consideration on a case-by-case basis using thefast-track offering process.

Selection criteria for HCC have been circulated to allcentres. These criteria have been incorporated in theregistration forms as from 1 July 2008 in order to collectenough data to allow a review to take place after one yearfrom September 2007 to assess the impact of this change.

The new elective liver recipient registration form whichrecords the set criteria for registering a patient onto theelective liver transplant list was introduced on 1 September2007. Data from these forms was analysed to determine thesize of the donor pool for each centre and, in the firstinstance, changes to the liver retrieval zones will be based on50% of a centre's required change in the number of adultdeceased heartbeating liver donors to match theirregistration percentage share. Any subsequent changes toeach centre's percentage share of donors will be reassessedwhen additional registrations have accrued over a longertime period. These changes will be reviewed with a view toredrawing the zones when one year's data is available ifthere are significant discrepancies due to the risk associatedwith the use of only seven months' worth of data. Thesechanges went live on 1 July 2008.

The current definition of CIT detailed in the documententitled 'Information for transplant centres and guidelines forentering data' produced by the Royal College of SurgeonsClinical Effectiveness Unit in February 2001 should continue tobe used until such time that the new liver donor informationand transplant record (1 week) form are introduced.

Clarification is being sought from the Department ofHealth on the rules regarding assessment of non-UK EUresidents for transplantation using organs from the UKdonor pool.

Isolated small bowel transplant services for children willbe commissioned from Birmingham Children's Hospital andKing's College Hospital, London. Isolated small boweltransplant services for adults will be commissioned fromAddenbrooke's Hospital, Cambridge and from the OxfordRadcliffe Hospitals NHS Trust. For those patients whoadditionally need a liver, adults will be transplanted atAddenbrooke's and paediatric patients at BirminghamChildren's Hospital and King's College Hospital. A sub-groupof LAG will be established to address issues relating tointestinal transplantation including intestinal failure for bothadult and paediatric patients, and the offering sequence forintestinal grafts.

Until the introduction of a specific Intestinal TransplantRegistration Form patients should continue to be registeredusing the newly introduced Liver Registration Forms. Theoffering sequence for adults and paediatric patients shouldbe based on time on the transplant list until this has beenreviewed by the intestinal sub-group of LAG.

It was agreed that the decision taken last year [LAG(07)7]should be upheld regarding liver splitting whereby the livershould be split at the centre with the recipient who wouldreceive the whole organ should the liver be unsuitable forsplitting (defined as the Index Patient). The transplant centrecaring for the Index Patient is responsible for arranging thesplit procedure. If that centre lacks a surgeon capable ofperforming the split then a surgeon from the centreaccepting the other portion of the split liver should beinvited to attend to perform the split. If the splitting surgeonis unable to travel to the centre with the Index Patient then,whenever possible, the liver should be sent to the splittingsurgeon's centre for him/her to perform the split. However,the final decision on the location of splitting rests with thecentre with the Index Patient.


ADVISORY GROUPS

An audit of adherence to the LAG alcohol guidelines is tobe carried out.

The Liver Selection and Allocation Working Group willconsider whether laboratory tests for the scoring of severityof liver disease such as creatinines and prothrombin timesshould be standardised and, if so, how this can be achieved.

The National Organ Retrieval Imaging System (NORIS) hasbeen rolled out to all UK liver centres. Take-up has not beenas high as expected with not all centres placing images onthe system despite having had the opportunity to havetraining on the system on site.

An imbalance in the balance of exchange of donor liverswithin the Northern Liver Alliance had resulted in Edinburghbeing considerably advantaged by the arrangement and aform of payback system for the Alliance was endorsedwhereby when a liver is received from another centre thenext eligible liver received in the recipient centre (aftercompletion of the national offering obligations) is donatedback to the original centre as a payback. This must be atransplantable liver and the payback only occurs once.

When liver splitting takes place the split liver informationform should be completed in full on the split to ensure thatUKT has accurate data on who actually performed the split.

Kidney Advisory GroupKAG met on 11 June 2008

A shortlist of suitable patients has been drawn up for thepilot study at King's on renal transplantation in highlysensitised patients using a left lateral lobe of liver with thekidney transplant. It is anticipated the programme will startshortly and discussions are underway to clarify the allocationprotocol for this procedure.

A request will be sent to the National CommissioningGroup (NCG) for consideration of a national commissioningframework for renal transplant services. In addition, NCG willbe asked to consider the commissioning of H & I services ona national basis as opposed to the current arrangementwhereby laboratories are established and funded in a varietyof ways.

The results of monitoring show that the level of discrepantdonor HLA types reported to UKT remains at a very low level.

Compliance for recipient HLA types has increased from86% to 93%, for living donor types from 80% to 93% andfor deceased donor types from 94% to 97%. One laboratoryis not achieving compliance routinely for recipients or for livedonors and discussions are underway with this laboratory inorder to achieve compliance in the future.

The editors of 'Transplantation' have accepted a proposalfrom UK Transplant to publish a series of papers as a Forumentitled 'Kidney Allocation in the UK: Past, Present andFuture'. The articles will be based on the analyses performedfor the work of the Allocation Task Force.

Currently a patient is classified as highly sensitised fromHLA antibody reaction frequency data supplied to UKTransplant by the H & I laboratory. In light of significantchanges in antibody screening and specification technologyit is proposed to develop a method of defining highlysensitised patients based on a calculated reaction frequencyderived at UKT from unacceptable HLA antigens listed bythe laboratory. This cannot be implemented immediately dueto the time required for user testing.

Twelve requests from clinical staff for data for researchpurposes were considered by the Kidney and PancreasResearch Group, five of which were agreed. The remaining

seven proposals were declined due to lack of sufficient dataand overlap with current UKT work. In addition, funding wasapproved to support a wide ranging study on donation andoutcomes after cardiac death. This three-year study willinvolve recruiting a medically qualified research fellow to bebased at Addenbrooke's.

A two year review of the 2006 Kidney Allocation Schemewas carried out and comparisons were made with data from2005 with the following conclusions:•Improvements in HLA mismatch, including well matchedgrafts for young patients.•More long waiting patients have been transplanted (28% of transplants now in patients waiting >5 years).• Fewer transplants in O and B patients as a result of fewerO and B donors than previously.• Some improvement in access to transplant for ethnicminority patients.• The excess of HLA-B and DR homozygous patients on thetransplant list has almost been eliminated.• An increase in the number of difficult to match patientstransplanted.• Median waiting time to transplant for paediatric patientshas remained unchanged (10 months).• Improved access to transplant for young adult patients.• Median cold ischaemic time has fallen (not necessarily as aresult of the scheme).• No difference in either graft or patient survival(unadjusted) for adult or paediatric patients whencomparing outcomes of transplants in 2005 with the yearfrom April 2006.

Future responsibility for the monitoring of the NationalKidney Allocation scheme will pass from the KidneyAllocation Review Group to the Kidney Advisory Group.

In order to address the issue of equity of access forpaediatric patients in the transitional period when movingfrom the paediatric transplant list to the adult transplant listat the age of 18, a patient will retain their paediatric priority,if they were first registered as a child, until such time as theyare transplanted.

Although it was recognised that matching for CMV is aproblem, no change will be made to the allocation systemuntil further analysis of the influence of CMV on patient andgraft survival can be undertaken.

As at 11 June 2008 eight altruistic and six paired donortransplants had taken place. The latest pooled donormatching run at that date had identified 16 possibletransplants although it was likely that 11 of these transplantswould not proceed as a result of positive cross-matches.Given the current lack of success and the need to managepatients' expectations when they enter the paired/pooledscheme the next run on 1 July 2008 would give priority to 2-way exchanges (although 3-way exchanges would also beconsidered).

A comparison took place across centres of renal functionat 12-months post transplant from both heartbeating andnon-heartbeating donor kidney only transplants. Preliminaryanalysis showed that for two centres the average eGFR at12-months post-transplant is significantly higher than thenational average whilst for another two centres the averageeGFR at 12-months post-transplant is significantly lower thanthe national average. Further work is needed to determine ifthis method is a suitable way of comparing outcome acrosscentres. Once further investigations are complete it is hopedto incorporate the results in to the centre-specific reports onthe UKT website.

HUNDREDS of athletes of all ages,shapes and sizes converged onSheffield in August for the 31stannual Westfield Health BritishTransplant Games.

More than 600 competitors took part inthis year's games held at various venuesacross the city from 7 to 10 August,including Sheffield's Don Valley Stadium.

Once again, the four-day event -organised by Transplant Sport UK -was one of the biggest annual multi-sport games to take place in the UnitedKingdom.

Attracting over 1,500 visitors, thegames kicked off with a colourful andemotional opening ceremony fromBarker's Pool to the Peace Gardens inSheffield, which was attended byseveral thousand people.

They were welcomed by Sheffield's LordMayor, Cllr Jane Bird, who watched theparade of athletes, sponsors, gamessupporters and donor families,volunteers and officials. TransplantSport UK's retiring chairman, DrChristine Evans, officially opened thegames, which was followed by a civicreception for all the athletes in SheffieldCity Hall.

The athletes and their families werecheered on by friends, families,members of the public and VIP guests.When they reached the Peace Gardens,organisers laid on music andentertainment for all.

The opening ceremony also includedspeeches from Andrew Raftery, chair ofthe Games Local OrganisingCommittee, and recently retiredSheffield Northern General Hospitalconsultant kidney transplant surgeon.

Mr Raftery said: “People have been veryimpressed by the venues and it's beenwonderful to see so many people whohave benefited from organ donation.”

Over the next three days, visitors wereable to watch transplant patientscompete in a wide variety of sports andleisure pursuits. They included archery,

badminton, canoeing, cycling, darts,fishing, golf, snooker, squash, tabletennis, tennis, ten pin bowling, walking,a wheelchair race, and volleyball for allage groups.

Track and field events featured ballthrowing, cricket ball, discus, highjump, long jump, shot putt, minimarathon, walk, obstacle course,javelin, plus 50m, 100m, 200m, 400m,800m and 1500m running events forboth men and women. There were alsoadult swimming events in freestyle,breaststroke, backstroke, butterfly andrelay.

The Sheffield Star also sponsored a 5-kilometre 'Star Donor Run' and a 3kmFun Run in and around the city's DonValley Stadium.

Some of the athletes at the games wereaiming to achieve performances goodenough to represent Great Britain in the17th World Transplant Games on theGold Coast of Australia from 22 to 30August, 2009 but many were theresimply to celebrate the joy of being aliveafter receiving an organ transplant froma donor.

Lynne Holt, a trustee and executivecommittee member for the gamesorganisers, Transplant Sport UK, said:“Some of our members come to winmedals, training well in advance of theevent and with an eye to being chosenfor the World Transplant Games.

“Others come to renew old friendships,do their sport at their own pace and

generally enjoy a few days of fun and sharing amongst so many who had debilitating illnesses but who arenow fit and well as a result of asuccessful transplant.

The joint winners of the special awardfor outstanding contribution anddedication to Transplant Sport UK werePeter Ford, the Birmingham teammanager and a member of theorganising committee for this year'sgames, and Ian Gill from Newcastle, atrustee and treasurer of TSUK.

Pauline Andrews, retired team managerfrom Great Ormond Street Hospital inLondon, who contributed to the teamand the children and TSUK for years,and whom TSUK wished to honour,won the Arthur Hardy SpecialAchievement Award for Adults.

The Martin Gilman Special Achievement Award for Children for the transplanted child showing the best effort was won by Nathan Jeanne,from the Evelina Children's Team atGuy's Hospital.

Next year's games will be staged at the University of Warwick in Coventryfrom 30 July to 2 August 2009. Thecity's Deputy Lord Mayor, Cllr JackHarrison, received the torch for the2009 games.

If you wish to volunteer as a helper,please contact Transplant Sport on01962 8650300, or email:[email protected] [email protected].

AROUND THE COUNTRY


TransplantGames

George Mortlock (centre), Gosh Renal - 25m Freestyle gold medal, 25mBreaststroke silver medal and 25m backstroke bronze medal.

bulletin...bulletin the magazine for everyone involved in organ transplantation and donation issue...

Documents