design report final11

Should an ‘opt-out’system for OrganDonations becomemandatory in the UK?Lucy Monaghan DepardieuGraphic Design and IllustrationGRDN 3001P112402088th January 2014

ACKNOWLEDGEMENTS I am grateful to health professional Lawrence Roberts for providing me with in depth insight from a medical perspective and sharing valuable information regarding organ donation systems. I would like to thank Janet Foster and Rik Basra, transplant recipients, for taking the time to explain their experiences in searching for donors, to the life saving moment of finding a match for a succesful transplant. Thankyou to all my participants for sharing opinions in surveys and taking the time to answer questions.

ABSTRACT OrganTransplantation is a successful medical therapy,yet without a source of body parts from the deceased, it has little success in saving lives.The current legislation in the UK approaches bereaved relatives prior to donation taking place, to voice their support or objection to donate organ and tissue, often ending in declination. Apossible solution is a mandatory opt-out system which has potential to positively influence thinking and behaviours, increasing the number of registered donors. Interviews with donor transplant recipients, health professionals, a small fo- cus group and studying opt-out countries donor statistics led to a clear link with high donation rates. The most crucial finding is the major underlying and influencing factor which is education for the public and for clinicians. Findings concluded that a mandatory opt-out system would not be cost effec- tive, time efficient or most appropriately suited to the UK. What is lacking is an accurate and true knowledge about the facts of organ donation. Combined with the anticipation of artificial organs in the near future, the aggravation and complexity of implementing an opt-out system can be avoided, whilst maintaining a sufficient increase in donors through methods of education.

CONTENTS LIST OF ILLUSTRATIONS 1 INTRODUCTION 4 MAIN SECTIONS 5 1. The current situation in the UK regarding Organ Donation..................5 1.1 Number of NHS registered donors today..................................................................................5 1.2 Individuals waiting for transplants in the UK...................................................................5 1.3 Which age groups are most inclined to register?..............................................................6 1.4 How many lives could potentially be saved?....................................................................6 2. How such an introduction would impact on the number of donors......8 2.1 Countries already with an opt-out system.........................................................................8 2.2 The success of current opt-out systems in other countries................................................8 2.3 Types of opt-out systems (soft, hard)..........................................................................................9 2.4 Correlations between high donation rates and opt-out systems......................................10 3. Ethical and legal barriers of introducing an opt-out system...............11 3.1 Religions and groups that support or oppose..........................................................................11 3.2 Human rights and ownership of organs...................................................................................12 3.3 Would ‘opt-out’ create an element of ‘sacrifice’ rather than ‘gift’ of life feeling?.....................12 4. Complexity of implementing, a cost effective system in the long term?.....14 4.1 Educating society about the new system of donation..............................................................14 4.2 Clearing up peoples common perceptions and lack of knowledge..........................................14 4.3 The costs of communicating such a new system.......................................................................15 CONCLUSIONS 16 RECOMMENDATIONS 17 REFERENCES 18 BIBLIOGRAPHY 22 APPENDICES 28

LIST OF ILLUSTRATIONS Figure 1. Number of people on the NHS transplant waiting list. NHS (2014 [WWW] Available from: http://www.organdonation.nhs.uk/statistics/downloads/annual_ stats.pdf [Accessed15/12/14]...............................................................PAGE5 Figure 3. Age groups and gender of registered organ donors. NHS (2014) [WWW] Figure 2. Number of organs transplanted on the NHS in a year. NHS (2014) [WWW] Available from:http://www.organdonation.nhs.uk/statistics/downloads/annual_ Available from:http://www.organdonation.nhs.uk/statistics/downloads/annual_ stats.pdf [Accessed 16/12/14]..............................................................PAGE 7 stats.pdf [Accessed 15/12/14]..............................................................PAGE 6

LIST OF ILLUSTRATIONS Figure 4. DEPARDIEU, L. Donation rates by country. GALLUP ORGANISATION (2003) “Do you think we should all be [WWW] Available from:http://www.gallup.com/businessjournal/127217/giving- automatically placed on the Organ community-wellbeing.aspx [Accessed 15/12/14]...................................PAGE 8 Donor Register and have the choice to opt-out if we wish to?” Figure 5. Opinions on the implementation of an Opt-Out system (2014) Source: Primary research..........................................................................................PAGE 9 Figure 6. Matesanz, Director of the Spanish Transplant Organisation. TORONTO STAR (2013) [WWW] Available from: http://www.thestar.com/life/health_ wellness/2013/09/30/what_spain_can_teach_us_about_the_gift_of_life.html [Accessed 28/12/14].........................................................................PAGE 10

LIST OF ILLUSTRATIONS Figure 7. Religious groups within the UK. OFFICE FOR NATIONAL STATISTICS Figure 9. Common concerns and fears surrounding organ donation (2014) Source : (2011) [WWW] Available from: http://www.ons.gov.uk/ons/rel/census/2011- Primary research...................................................................................PAGE 14 census/key-statistics-for-local-authorities-in-england-and-wales/rpt-religion. html [Accessed 28/12/14]..................................................................PAGE 11 Figure 10. A common concern is whether organ donors are actually dead. GIZMODO (2012) [WWW] Available from: http://gizmodo.com/5892470/the-dark-side-of- being-an-organ-donor........................................................................PAGE 15 Figure 8. Peoples reactions to the implementation of a mandatory opt-out donation system. (2013) Source: Primary research .............................PAGE 13

INTRODUCTION There are more than 10,000 people in to opt-in to the Organ Donor Register, the UK in need of an organ transplant an individual can voluntarily choose to butonly3000peopleayearreceiveone. register, which is the current system in One thousand die waiting, equating the UK.This report analyses the need for to three people per day (NHS, 2014). a mandatory opt-out system, meaning that every person in the country is The current system in the UK requires presumed to have given their consent people to actively ‘opt-in’. By signing to sign up to the Organ Donor Register. up to the NHS Organ Donor Register, Otherwise, they would need to actively a person can give consent to donate choose to opt-out via request in writing. their organs and tissue after death to help someone who is need of a By implementing a mandatory transplant. This can include a number system, it would be compulsory to of organs: kidneys, liver, heart, be a registered donor, yet still giving lungs, small bowel, pancreas, the the option to remove ones self if cornea, bone, bone marrow, skin, desired. This report explores the heart valves, tendons and cartilage. issues and impacts a mandatory opt- It is a completely confidential list of out system would have on the UK and people who will become lifesavers to whether it is an appropriate solution those in urgent need of transplant. to increase organ donor numbers. “The British Medical Association has been campaigning for presumed consent - where all people are assumed to be willing to donate organs unless they opt out - since 1999.” (Triggle, 2011). Consent can be given in two ways, via opt-in or opt-out. By deciding

THE1 CURRENT SITUATION IN THE UK Figure 1. Number of people on the transplant waiting List (October, 2014) REGARDING ORGAN DONATION1.1 Number of NHS registered organs and tissues for other purposes, donor registered individuals, stands atorgan donors today permitting the removal and storage. 20,732,656; amounting to 32% of the Richardson (2004) describes altruistic UK population; with over 1,050,000 Until the mid-twentieth century there donating, “many envisaged the benefits of those registering solely in the past has always been equilibrium between of their donation would flow to future year (NHS Activity Data, October 2014). the amount of bodies available and patients and mankind…their impulse the amount required for research and being egalitarian and philanthropic”. 1.2 Individuals waiting for teaching purposes. “These bodies were, In the twentieth century there was a transplants in the UK and are, provided, in a spirit of trust considerable rise in bodily donation and and generosity, by voluntary public new developments in blood transfusions Currently 6,918 patients are waiting donation” (Richardson, 2000). In 2004, influenced people’s inclination to for transplants in the UK. When the Human Tissue Act allowed the use of donate. Today the number of NHS organ breaking down this data (fig.1), the

THE1 CURRENT SITUATION IN THE UKhighest need is for kidneys, equating REGARDING ORGAN DONATION to 79.9% of the total patients in need of donated organs. The most commonly transplanted organs (fig. 2) are kidney, liver, lung and heart, closely followed by the pancreas, often transplanted at the same time as the kidney. Last year a total of 4654 organs were donated, which came from the willing generosity of 3120 deceased donors and 1099 living donors, with a staggering 3054 of those being kidney transplants (NHS Activity Data, October 2014). 1.3 Which age groups are most inclined to register?An individual of any age can signup to the Organ Donor Register,those younger than eighteen yearsof age require consent from a parentor guardian1. There is not an age limit, it depends on the physical condition of your body at the time. Figure 2. Number of organs transplanted on the NHS in a year (March,2014) Last year 53% of the 1,050,116 registrations were through the Driver and Vehicle Licensing Agency (ODT, 2008). 21.6% males and 23.6% females. It March 2014, over 3000 patients’ lives Organ donation could appeal to is least common among the 15 years were saved or dramatically improved by a people over 65 years of age if they old and younger age group. Overall, kidneyorpancreastransplant.Inaddition understood that they are not too old to 46% are male and 54% are female to this 3,724 people had their sight donate or receive an organ, as a Gallup (NHS Activity Data, October 2014). restored through a cornea transplant. Organisation survey (2005) revealed, 11.73% believed they were too old to 1.4 How many lives could Despite this high figure, there is still not receive a transplant. Organ donation potentially be saved? sufficient donors for patients waiting, is most prevalent in the 21-30 age hence the need for another system in the group bracket, (fig. 3) consisting of Within the UK between April 2013 and UK. More than 90% of people verbally 1 (see appendix 1)

THE1 CURRENT SITUATION IN THE UK Figure 3. Age groups and gender of registered organ donors (March, 2014) REGARDING ORGAN DONATION support organ donation (NHS, 2014), such as not having the time, not having stronger values do exist, but the most yet less than one-third are registered got round to signing up or merely just common could be tackled and resolved as donors. Common reasons for not having never even thought about it. with a mandatory opt-out system; registering are among the most simple, More complicated reasoning with currently in practice in other countries.

THE2 IMPACT OF THE INTRODUCTION2.1 Countries already with an opt- OF AN OPT-OUT SYSTEM ON THE out system NUMBER OF DONORS The USA, countries in Asia and in Europe currently have an opt out system in place, such as Austria, France, Finland, Denmark, Latvia, Croatia, Norway, Poland, Italy, Spain and Belgium; all with remarkably high registration rates in comparison to the UK (fig.4). Countries with this method have 25- 30% higher donation rates than those with opt-in, Sweden being the exception. Despite also having an opt-out system, it doesn’t have such a significant effect on the populations donation rate. From December 2015, Wales begin their approved opt-out system, perhaps soon to be followed by Scotland where an Organ Donation Taskforce survey (2008) validated that “72% of those questioned supported a shift to an opt-out system”, yet currently less than half the population is registered. Figure 4. Donation rates by country (2014) 2.2 The success of current opt-out systems in other countries Spain take the lead, with the highest rate the numbers had increased five years donation rates although it cannot be of donors in the world (34.4 people per before the opt-out system was founded inferred from this that the introduction million population) yet it is likely that and introduced in 1989, ten years of presumed consent legislation per se this is not necessarily due to the opt- after the legislation was passed in leads to an increase in donation rates.” out system itself, there are alternative 1979. Research by Rithalia et al (2009) factors contributing to people’s decision points to “presumed consent law, Prior to the 1999 approval of an opt- making. Statistics demonstrate that being associated with increased organ out system in Italy, Tuscany specifically

THE2 IMPACT OF THE INTRODUCTIONused the Spanish system as a model for “Do you think we should all be OF AN OPT-OUT SYSTEM ON THE their own, doubling donation rates to automatically placed on the Organ Donor NUMBER OF DONORS 26.9 people per million. Nevertheless, Register and have the choice to opt-out if the legislation has not had a successful impact in every case. Sweden (opt-out we wish to?” since 1999) features low in terms of success rate compared to other European countries. In Brazil, an opt-out system was introduced and lasted for only a year when it was repealed in 1998. People did not trust the government, alongside accusations of body snatching; an indicator of the importance of building a relationship with the public. 2.3 Types of opt-out systems (soft, hard)2 A hard opt-out system (currently in place in Austria) allows doctors to remove organs, even if their family opposes knowing the deceased wanted to opt-out, doctors may override this. The concern with this type of system is that people who simply have been disorganised in recording their objection, may have organs taken Figure 5. Focus groups’ opinions on the implementation of an opt-out system against their wishes.“If you asked people on the street, you’d find they support organ donation – they just haven’t got negatively, with 55% declining the idea. of system as “it polarises public opinion, round to signing up” (Calland, 2006). creates difficulties clinically and might be Research with a small focus group Not every UK resident has perfect open to successful legal challenge under questioned partcipants whether they communication, whether it be through human rights” (Taskforce (2006). Soft agreed with the idea of opt-out (fig. learning difficulties or language barriers. opt-out presents doctors with the right 2 (see appendix 2) 5), to which the majority answered TheTaskforcedoesnotcommendthistype to remove organs, unless the individual

THE2 IMPACT OF THE INTRODUCTION “Is it because of the OF AN OPT-OUT SYSTEM ON THE NUMBER OF DONORS law? Not likely. We have always had the same law. The families are always approached…they have the last decision”. (Matesanz, 2002) Figure 6. Matesanz, Director of the Spanish Transplant Organisation. has opted out or relatives actively as the UK, which alleviates the pressure which won’t have a transplant team as tell doctors not to remove organs (as on decision making. Matesanz (2002), such, you’re relying upon staff that may doctors may not always ask). This would openly admits the success rate was not not have had a huge amount of training seem to be a more commendable due to the legislation alone (fig. 6). in that area, to approach relatives at a very option for the UK, giving people the The shortage of hospital space in the difficult point in their lives.” (Lloyd,2014). responsibility to actively make their UK gives families little time to make a own decision, which if they fail to their decision before the situation of death In Austria and Singapore (both hard opt- family are able to veto the final decision. has sunk in. Lawrence Roberts3, (2014) out countries), there was an increase of explains a main issue is “the reluctance up to 25% in donation rates (Taskforce, 2.4 Correlations between high of staff to get involved in the discussion 2006) when comparing before and donation rates and opt-out systems with relatives”. When the doctors are after the introduction of the system. It certain of a death and want to take the should be highligted that at the same In Spain, every donor hospital has body to theatre to extract the organs, time, there was the introduction ofmedically qualified coordinators who essentially asking the bereaved to additional funding for organ donationreceive training on a regular basis. make another sacrifice is a situation schemes, better facilities and increasedThey sustain a good communicative staff naturally and back away from. educational programs widening therelationship with the public to maintain awareness. With one of the highesttheir trust and, “have a very coordinated, Organ donation specialist nurse, Adele refusal rates in Europe (123 in 2012),hierarchical, interlinked system of well- Lloyd4, further explains the difficulty the UK still requires “better identificationtrained organ-transplant professionals” of these situations, “Even just to open of potential donors, improved referral(Ferguson, 2014). Their hospitals have the conversation, particularly if you’re of potential donors and improved 3 (see appendix 3)four times as many intensive care beds working in a district general hospital care of donors” (Lever, 2013). 4 (see appendix 4)

ETHICAL3 AND LEGAL BARRIERS OF 3.1 Religions and groups that support INTRODUCING AN OPT-OUT SYSTEMor oppose A misleading presumption made by people is that certain religious groups and minorities do not support organ donation though, contrary to belief, none disagree with the giving of organs to save lives. The majority of religions allow organ donation, faiths and beliefs of groups have an inconsequential effect or organ donation decisions, but are influenced by cultural traditions, those being the crucial influential factors. England and Wales’ majority population Figure 7. Religious groups within the UK of Christianity (Fig.7) includes the Catholic Church, who positively support donation as, “a genuine act of love, a powerful expression of human solidarity and of Christian charity” (John Paul,2000), a “testimony of love for our neighbour” (Francis, 2000). Strong Catholic countries in Europe are among those with some of the highest donation rates. Research from Sajad (2007) showed Studies amongst faith groups revealed to require an organ due to certain 60% of Muslims from various ethnic they all share the opinion of donation conditions being more prevalent. Janet backgrounds answered no, when posed being a very personal choice, a matter Foster5, a kidney recipient who was on with the question of donating; with the of “personal autonomy, and being able dialysis prior to her transplant recalls “I assumption it was impermissible. This to make decisions for yourself…we knew some black guys who were in their is untrue which “points out either a lack should stay with the opt-in” (Butt 2006). thirties, they’d been there for ten years of knowledge amongst Muslims or a on dialysis.” (Foster, 2014). Without lack of discussion amongst the religious People of Asian, black and ethnic specialist nurses Asian, black and ethnic leaders and community in general”. minorities are four times more likely minorities are not so often approached 5(see appendix 5)

due to possible language barriers has a right to body parts any more than “nobody wouldand not having an understanding of financial possessions, it’s selfish toETHICAL3 AND LEGAL BARRIERS OF religious or cultural perspectives. The assume the right to others body parts” INTRODUCING AN OPT-OUT SYSTEMpoor registry rate is a result of cultural (Goss, 2013) It assumes that people want to get into and religious barriers, where organ cannot decide to choose to donate, and donation is taboo for certain groups. that they do not own their own body, an argument taking advantage of individuals who Rik Basra6 talks about the UK Stem Cell are unclear, or ignorant to the system. Registry being made up of only 4% of Asians, not because of religion but for Cases where the deceased has failed to with a bereaveda number of reasons, “there doesn’t opt-out, it cannot be assumed that they seem to be a lot of publicity out there were willing to donate. The family even across the Asian community, about as a possible indicator, have no weight family over donation…if all you do is send out one on the decision, leaving doctors with type of message to the mainstream the go ahead to remove organs. Opt- community and your shortage is actually out takes away autonomy and any right what the right ofwithin a different community…your to informed consent, the doctors have messages aren’t going to get there” no obligations to tell relatives what will Basra’s stem cell campaign targets all happen to the body in the operation, the their loved onescommunities, recruiting donors with the body is dead and deprived of its legal key slant being “the particular way that rights, becoming an object. From birth we operate…tailor[ing] our messages” till death,organs are waiting to be re used body were” (Basra, 2014) as a strategy to appeal to which also impinges on the recipients the extensive range of potential donors. view towards their donor. A major (Roberts, 2014). education program would be necessary 3.2 Human rights and ownership of to educate the public on precisely what organs their rights are and what to anticipate6. Opt-out, means that after death the 3.3 Would opt-out system create an 6(see appendix 6) body does not belong to itself, relatives element of ‘sacrifice’ rather than ‘gift’ or anyone else, until released to family of life feeling? for funeral arrangements, leaving the decision of death in the hands of the The term ‘gift of life’ is used as a way government. In between that time, of making organ donation sound the organs can be taken for donation appealing, reflecting voluntarism without any ethical issues. “Nobody and altruism, though some have

ETHICAL3 AND LEGAL BARRIERS OF Figure 8. Survey results to show how people would react to the implementation of a mandatory opt-out donation system. INTRODUCING AN OPT-OUT SYSTEM argued that it is better presented as getting to me” (Foster, 2014). When Forcing people to donate via opt-out a ‘sacrifice’. Opt-out takes away from her consultant questioned why she could have a reverse effect and lower the focus of giving freely, recipients couldn’t accept from someone with donation rates if they consequently commonly feel guilt as though they the same attitude as herself in regards remove themselves from the list in have waited for someone to die, being to donation, it eased all her qualms. retaliation (fig. 8). Some may see it as “concerned that an opt-out system might a way of being forced into making a undermine the principles of organ Knowing the donors family have fully mandatory decision, having to sacrifice donation as a gift” (Taskforce, 2014). and willingly consented is extremely their body from the moment of birth. important,not just with donating but also Nevertheless, the anticipation of opt- Foster (recipient and registered accepting. “I would not accept an organ if out being put in place could give donor) queried accepting her from it were’t given with consent” (Katz, 2013), individuals the incentive to opt-in prior her deceased donor, “In the scripture thus on the contrary, an opt-out system to the legislation deadline, to feel that we’re taught it’s better to give than has potential to re assure recipients that their decision has been made of their to receive and I think that’s what was they can accept from a willing donor. own accord and not the governments.

4.1 Educating society about the newsystem of donationCOMPLEXITY4 OF IMPLEMENTING, A COST EFFECTIVE SYSTEM IN THEThe introduction of an opt-out system LONG TERM? would raise concerns of whether people are ready to trust the government as the more mistrust, the less likely they are to donate.Theschemewouldneedtoensure the public are protected and maintain a stable and trusting relationship. People can often shy away from talking about death, an uncomfortable topic which not everybody wants to think about. Research by Birkbeck University suggests there is a correlation between people who are more ‘matter of fact’ about death and the likelihood of signing up. Which could suggest that those who lack knowledge of the facts, become less likely to sign up. Not knowing if a loved one is actually Figure 9. Survey results to show common concerns and fears surrounding donation. brain dead is commonly questioned. The term ‘life support’ can undermine the fact that a death has already occurred, it should “never be used in relation Themostwidespreadreasonfordeclining Misconceptions about donation from to the brain dead patient…[causing] organ donation is not understanding negative stories in media would confusion regarding death” (Franz et what goes on in surgery, a fear that the need clearing up, it is full of stories of al, 1997). Given that it is implemented body will be disfigured and that the people who have made remarkable suitably, mandatory opt-out could deceased will feel pain in the process. recovery when doctors consider them to be non-recoverable. People visualise provide individuals with a lifetime to understand the processes involved, A focus group expressed their main and imagine horror stories “I imagine to consider and make a well thought concerns with donation, to which the being a piece of meat, being stabbed out and informed decision to donate. highest responses with 82%, related to and getting the bits out, my visions are knowing whether a potential donor is slapdash and gory” (participant, 2014)7. 4.2 Clearing up peoples common actually dead. (fig. 9). Again this raises perceptions and lack of knowledge the issue of a lack of trust with clinicians. Without knowing the facts, minority

COMPLEXITY4 OF IMPLEMENTING, Figure 10. A common concern is whether potential organ donors are actually dead A COST EFFECTIVE SYSTEM IN THEand religious groups in particular, are Tissue donation raises stronger concerns 4.3 The costs of communicating suchLONG TERM? deterred from registering. The concern is of disfigurement for relatives; research a new system that “allthismythactuallystiflesdonation by Siminoff et al (2001) showed that and people in minority communities” few medical staff knew the criteria for Currently the funding for the entire (Basra, 2014). A mandatory opt-out tissue and corneas, something that NHS transplant scheme stands at £316 system could prove difficult to convey most remain reticent on donating. million which covers the NHS blood and information among hard to reach groups, NHS transplant.The average cost per year who may have pre conceived ideas Some feel that they would not have to cover one patient receiving dialysis about what organ donation actually is. thought of donation and are glad they’ve treatment is £30,800, with a successful been approached, in cases where they kidney transplant costing £17,000. For Perceptions strongly link to cultural have not been asked, relatives felt that every successful transplant, a saving of beliefs surrounding treatment of the they were denied the opportunity to £24,100 per patient is made annually body after death, Bradbury (1999) have some good come from their loss. (NHS, 2009). With increased donors and remarked that “cultural expectations have An opt-out system has the advantage of transplants for all types of organs, more an impact on the aesthetic presentation including every individual, increasing savings could be made, eliminating the of the dead.” There is a need of guidance knowledge of donation, yet at the same cost of treatments. To implement an opt- and choice to be overridden by health time it would be ineffective if people do out system would cost money to educate care professionals about how the body not want to give the system a chance and society done prior to this, which couldis presented after the donor’s death. instantly back out in an act of retaliation. take up to five years,in order to gain trust. 7(see appendix 7)

CONCLUSIONS A mandatory opt-out system is not the bond of trust” (Haddow, 2004). The feel- One major threat which supersedes the most preferable solution for increas- ing of trust between clinicians and fam- whole argument of opt out is artificial or- ing organ donor numbers in the UK, ilies at a critical time of bereavement is gans. Changing laws and putting a man- the most important factor is education. fundamental to shaping donation rates. datory opt out system in place would be a An enormous educational program is challenging and rigorous process,requir- needed for the public as well clinicians The three vital support methods in de- ing considerable time and money when to ensure it is fully understood what is cisions are time, attention and care.The science could catch up with us. There are involved in donating. To educate those after care is an important stage, ensur- currently scientists generating artificial not only conscious of donation but ing deceased contributions have been organs and tissue using 3D printing furthermore those utterly oblivious of recognised and valued, not forgotten. and even more complex, scientists have the opportunity to become a donor. An educated society would be positively grown a living breathing organic kidney aware of what to expect at every stage in a laboratory. Roberts (2014) explains Positive decisions have been linked to of donation, eliminating confusion, this technology could be ready to use qualified staff taking the time to answer perceptions and fears, enhancing the on humans in the near future, around questions, feeling confident that discus- inclination to opt in. The Chairman of ten years’ time; making the opt-in or sion does not increase distress levels as Donor Family Network, puts a different opt-out debate completely redundant. It Sque et al (2003) reports that “the worst perspective on such a situation; “being “is the solution to the whole problem… thing that could have happened already told your son will die, after a brain hem- the medical profession is very wary of it, had”. Qualified clinicians would know orrhage, and would you consider organ they really don’t want to give into the at which point to approach families re- donation? In such a moment of grief, position of having to fight off relatives in garding donation and the crucial timing it’s easy for families to say no.” (Burton, an intensive care unit” (Roberts, 2014). to broach discussion, allowing enough 2004). With a lifetime of being educat- time for relatives to reflect. What’s most ed, last minute, panic stricken decisions To avoid the expenditure of implement- important is knowing how to deal with would be rare, as the bereaved would ing an opt-out system, it would be worth emotional reactions so not have an ad- have discussed the decision with the waiting another ten years or so for the ar- verse effect on donation. DeJong et al donor (whilst alive) and most likely tificial organ option. Whilst in the inter- (1998) indicates the association between chosen to opt in. Registering as a donor im, the public can be progressively edu- perceived quality of care and decision to and discussing would become the norm cated which would also raise awareness, donate, which is why families need “a behaviour with successful education. whilst increasing the number of donors.

RECOMMENDATIONS Education would start from an early age tion about all the facts from the moment donors and their families, to allow time as part of the curriculum, in schools, plac- of brain death to after the organs have to make decisions, eliminating the feel- es of worship and workplaces in the UK, been removed, demonstrating how pa- ing of pressure and being rushed. Hav- across every religion and cultural back- tients would receive a complete cycle ing all the specialist clinicians in one ground. The use of visual aids such as of care from clinicians. Starting from place, working with each other is bound videos would be more understandable when the donor is near to death, up to mean they do a better job. Working across all levels, giving an insight into until post donation and caring for the for six months and then taking a break real life stories and the positive that can bereaved, a desirable system for both every six months to maintain the level of come of the tragedy of a death, opening the clinician and relatives. Spain could care, as dealing with death on a daily ba- discussion at the earliest possible point. be used as a model for UK strategies, sis is demanding and distressing after a with its enthusiastic specifically trained long period of time, even for specialists. Commencing a program at junior and donor professionals and interventions senior school level, teachers from the that have a proven positive influence. Taking into account the after care, a me- schools would pass a qualification in morial plaque could be erected or events order to teach the program in the meth- Clinicians would be trained about the held as it helps promote and remember od relevant to the school, tailoring the facts, trained on social skills and com- donation at the same time.The education key messages to the audience. Intro- munication skills with bereaved fami- scheme could take five years to get into ducing organ donation throughout a lies. One clinician could be assigned to practice, which up until the arrival of arti- lifetime makes the topic known across the next of kin throughout the whole ficial organs, would educate individuals all cultures, to become a normality that cycle of care, to maintain the trust and in positive decision making regarding is more openly talked about and how meet their needs. By spending funds Organ Donation. Education is applicable it can help to change and save lives. on bigger and fewer hospitals would to all ages, genders, races, religions and serve the NHS better, creating desig- cultures, where as a mandatory opt-out The education would provide informa- nated areas for dealing with potential cannot be so generalisable to the UK.

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BIBLIOGRAPHY RITHALIA, A., MCDAID,C. SUEKARRAN, S., NORMAN, G., MYERS, L. & SOWDEN, A. (2009). A systematic review of presumed consent systems for deceased organ donation. Health Technology Assessment. 13, p26. ROBERTS, L. (2014) Conversation with Lucy Depardieu, 5 December. SMYTH, C. (2014) Hundreds of patients have received reject kidneys without being told. The Times, 5th Dec. p11. SMYTH, C. (2014) Deaths provoke demands for change of approach. The Times, 5th Dec. p11. SQUE, M. (2000) ‘A story to tell’: Post Bereavement Correspondence between Or- gan Donor Families, Recipients, Their OPOs and the National Donor Family Council - An American Investigation. Guildford: University of Surrey. SQUE, M., LONG, T., PAYNE, S. AND ALLARDYCE, D. (2006) Exploring the end of life Decision making and Hospital Experiences of Families Who Did Not Donate Organs for Transplant Operations. Southampton: University of Southampton. TASKFORCE (2006) The potential impact of an opt out system for organ donation in the UK: An independent report from the Organ Donation Taskforce’. COI. 1, p13. TELEGRAPH (2011) Scientists create human kidneys from stem cells [WWW] Avail- able from: http://www.telegraph.co.uk/health/healthnews/8443740/Scientists- create-human-kidneys-from-stem-cells.html [Accessed 29/12/14] THE BIOETHICS PROGRAM (2014) Mandatory Organ Donation: Ethical or Out- rageous? [WWW] Available from: https://thebioethicsprogram.wordpress. com/2014/05/16/358/ [Accessed 12/12/14] WEN, T. (2014) Why Don’t More People Want to Donate Their Organs? [WWW] Available from: http://m.theatlantic.com/health/archive/2014/11/why-dont- people-want-to-donate-their-organs/382297/#ad-jump-ad-mobile-instream-1 [Accessed 12/12/14]

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APPENDICES Appendix 1. Should babies be put on it seems that the delivery of information So you’re looking at the opt-in opt out the list automatically? is key here. system and the one you’ve just ex- Research carried out at Great Ormond Appendix 2. plained to me was in Spain. Right, what Street Hospital (GOSH) showed that are the problems with organ donation… well the things you’ve probably picked newborn babies who sadly pass away in Currently in the UK we have a soft opt-in up on, it’s very topical at the moment. I intensive care, could have the potential policy where doctors can remove the or- don’t know if you’ve seen in the news, to donate their organs, saving a ‘signif- gans from individuals who have chosen there’s the kidneys being a big deal at icant’ proportion of children lives. The to opt-in, unless their relatives object the moment. If you pick up The Times research took place over six years, with which the doctors would have to follow today there’s a big section in there about the results showing that 45 out of 84 as the overriding decision. A hard opt-in organ donation and the problems that creasing the problem and the topic has infants that had passed away could have policy is where an individual has chosen people have with kidney donations. I become a bit more, you know, topical. donated. This amounts to 54 percent of to opt-in and donate their organs and think there’s some interesting sources the infants, who with parents consent even if their relatives oppose, doctors there which you might want to follow One of two issues is the reluctance of could have saved other lives, if the na- follow the individuals’ decision to do- through on the Internet, I don’t know staff to get involved with the discussion tional guidelines allowed to do so. nate. whether you get The Times or see it but with relatives, and I think something I buy it already, do it’s quite interesting. that a lot of people don’t realise is that The guidelines restrict British doctors An additional system is mandatory organs are not taken from dead peo- from diagnosing brain stem death which choice which legally obliges people I think the problems that we have in the ple. They are still alive. Alright, you’re contrasts to the rest of Europe,the United to opt-in or out at some point within UK at the moment revolve around two talking about people who are gener- States and Australia, where doctors are their lifetime. An option must be cho- areas, that the first is the reduction in ally on life support, they’re being kept permitted to do so, allowing newborn sen which allows ownership in decision the availability of organs and there’s an warm, their hearts are still beating and organ donation to take place. Currently, making but it still poses practical diffi- underlying reason for that which is be- you are basically brain dead. Because young British babies in need of a heart culties with the enforcement. The UK is cause seatbelt and crumple zones and you’re looking for organs from healthy transplant, must wait for one available to not a country where there are mandatory airbags have really kicked in and we do people you’re having to deal with the be flown in from Europe, providing that decisions or actions, for example voting not see the influx of young people with family of donors who have a young it is a suitable match. The guidelines do is optional for residents; a mandatory terminal illness coming in from illness person within them and somebody not even allow other organ transplants system does not fit consistently with cur- of car crashes. You still see people who who has had something catastroph- such as liver, lung, kidneys or bowel. If rent systems. crash and they break things but they ic happen to them and is brain dead. the UK guidelines were matched with don’t tend to die. If you look at the sta- those in Europe and other countries, it Appendix 3. Telephone conversation tistics from car crashes you’ll see that The press and the media are full of sto- would be possible to save many more with Lawrence Roberts, Obstetrics cars have become safer and safer and ries of people who have made remark- children’s & Gynaecology consultant, Depu- safer over the past number of decades able recovery when doctors consider lives. The end of a loved ones life is al- ty Medical Director for Northern and that’s really reduced the number of them to be non-recoverable. And the ways a sensitive topic, especially when Lincolnshire and Goole NHS Foun- available organs. It’s one of the big un- other comment is they can’t face the faced with discussing donating organs, dation Trust. (December, 2014) derlying reasons of why we have an in- thought that there relatives are going to

APPENDICES be taken to theatre and have their organs condition but it’s better than nothing. That will be the argument and then removed which will end the process. It’s there will be a counter argument about the thought of the process and as if you Now of course that’s feasible but if you whether they would have gone ahead are killing them, and also people don’t are a 20 year old waiting for a kidney that with the transplant had they known that like to think of their relatives as being will hopefully last you the rest of your life the organ was of relatively low quality. ‘mucked about’ any more. The idea that then you’re probably going to try and they have been through enough even wait for a good one. If you’re a 69 year And of course when your offering organs though they’re not going to be aware of it. old who’s got other health problems and around you need to be quick, because find getting into dialysis very difficult, the organ ain’t gonna last forever. It’s So for all those reasons the actual take you know physically making the trip then something available to a limited num- up is quite poor. We’ve now got to a you may feel that taking a chance from a ber of people for limits of reasonable would have a major educational piece stage where the quality of organs...wait slightly dodgier kidney is worth it. So it’s number of tissue type match and of of work to do with the public on what to let me start again...the point at which leaving people with even more difficult course it’s going to die. Where the donor expect regarding what their rights are. organs are considered for transplant has decisions than they have previously. It’s is and where the recipient is, is taken changed. In that people who in the past also links to increasing research in tak- into account by the transplant teams, We’d have a big learning curve, I mean who would not have been considered as ing donors from truly dead people, from but they can call upon ambulances, if you’ve come across evidence of it suitable donors are being considered. people who are you know, not alive and designated cars, motorbikes and heli- working in Spain, well I think that’s ev- People who are on a waiting list are be- their organs are removed shortly after copters. And occasionally when we get a idence it can work and certainly we have ing given a feasible amount of informa- death. Again that produces organs which transplant team come into us to take a an increasing drop in numbers but we tion about the quality of the organs that are possible to use but they’re not nec- full set of organs you know - sometimes also have an increasing requirement in they are being offered. The cases that hit essarily in the best possible condition. they take everything, they often come keeping people relatively well later in the headlines recently with renal trans- into us by helicopter, because it’s the life. I suppose one disease which is an plants have been very much around al- The difficulty with using organs from fastest way of getting round the country. example of that, possibly more than any- coholics. A guy who died of meningitis people who have been very unwell is thing else, is cystic fibrosis, which affects and oh gosh what was the other one... that occasionally it throws up very rare Those are some of the problems around a lot of things, with lungs being the ma- again if you get The Times you’ll find it. complications like I don’t know whether the opt-in system, it’s got a lot of practical jor problem. Your lungs get full of mu- There’s another group of people but I you’re aware but there’s this guy recent- problems...opting out has its own issues. cus and you get chronic chest infections, can’t remember which one it is. These ly, well two people who died as a result First of all we need to change the statute with every chest infection another part are people who previously...oh people of having a kidney from somebody in- laws of the country, I think it would need of the lung gets damaged. In the past, with cancer, that’s right. Now previously fected with a parasitic worm. And that’s an act of parliament to change the way children with cystic fibrosis used to die they would not have been considered as not very good, they both died and there’s we deal with this. So if you go for an as teenagers but increasingly now with suitable donors but because of the gen- an argument occurring, well it will occur opt-out, as I say, I think you’d need to aggressive physiotherapy and clever eral shortage they are now being consid- in Court, but eventually I should im- change the law. Nobody would want to use of antibiotics, and the development ered as donors and recipients are being agine that, the patients weren’t given get into an argument with a bereaved of specialist nurses who look after kids asked whether they might like to take on enough information about the quality family over what their rights of their with cystic fibrosis, they live to be adults. an organ which is perhaps not in the best of the organs they were being offered. loved one’s body were. And I think we But as they get older and the problem

APPENDICES continues to occur, quite a few of them ry, and they’ve done very similar things body doing it on a daily basis and it’s survive to getting to a stage where the with kidney tissues. Now it’s a long way something you do every six months. best treatment for them is a heart lung away from saying there is a kidney with transplant. Because we’re managing a blood vessel attached to it and you’ve If you open an honest dialogue with pa- some people better, they’re actually add- got to attach it to somebody, but that tients early in the day, which you have to ing to the requirement for transplants will be the next stage and it makes the do because the point of which you start later in life. And the same with kidney whole argument about opt in or opt out taking organs away is pretty time lim- disease, we’re getting so good at dia- totally redundant. Which would be great ited. So you need to open a discussion lysing people and keeping them going because the artificial organ option is the before you get to that point and that’s that it’s puts more and more people still solution to the whole problem. It might actually quite difficult to do. It would be alive on the waiting list for a transplant. be about 20 years away but the medical certainly better if trained experienced cided that they really did not want profession is very wary of it, they really personnel are involved in the discussion somebody to donate an organ then So in terms of numbers, yes we need don’t want to give into the position of with relatives as early as possible. And generally speaking, a team looking a better system and opt out might be having to you know, fight off relatives that, as I say, means bigger hospitals, it’s after that patient would go along with it, but the whole argument of opt out in an intensive care unit, taking the part of the argument for bigger hospi- the family’s wishes. But even if a family might be totally superseded by artificial loved one round the corner to take the tals, it’s also a very small part but there’s was clear in their own minds that that’s organs, alright, so it may be that we go heart out. They don’t want to do that. lots of examples of areas like that where what the individual wanted, if they re- through all the kerfuffle of changing you deal with rare conditions that are jected donation at the time, when the the laws and making it an opt out sys- There are nominated transplant person- better dealt with in bigger units, where point of transplant became a possibil- tem and going through the pain of that nel in every hospital, but their experi- people deal with rare conditions regular- ity, it’s still a very difficult conversation when actually science catches up behind ence in this area is hugely variable. It’s ly. Rather than something you see every to have and I think most people would us and generates artificial organs, and a small addition to the bigger argument ten or twenty years. And I think that back away from. Wanting to upset and people are working on this now. I think about how the NHS should be structured just about exhausts me on transplants! cause a major fight with a grieving fam- somebody has managed to build an and for a long time it has been the Gov- ily, you know it’s a difficult position. artificial kidney, so a living breathing ernment’s opinion and the Department Appendix 4. Telephone Interview organic kidney in a laboratory. It’s not of Health’s opinion that the NHS would with Adele Lloyd, specialist nurse Now, approaching someone under that far away, the way you build bone is be better served by having fewer and for Organ Donation, Northern Lin- those circumstances and saying - well you do a 3d print of the underlying ma- bigger hospitals instead of trying to put colnshire and Goole NHS Blood and we are absolutely sure one of your trix, if you like, the scaffolding and you a hospital in every town which is more Transplant Trust. (December, 2014) relatives is going to die, or is already fill it full of stem cells and the stem cells or less what we do at the moment. We’re non-functioning and we’d like to take differentiate and grow into bone. Then already moving that way but this is part I’m just going to talk about donor cards them to theatre and take their heart you’ve got yourself a bit of living bone of the argument in that people that are a bit, because even if people have got out, that really is a big ask. Even just and then you’ve got to stick it in some- more specialised in dealing with rarer a signed off donor card, it only gives an to open the conversation, particularly body. Have you seen that picture of the occurrences do a better job. If you have indication of what somebody wants, it if you’re working in a District General mouse with an ear on it, okay well that’s them all in one place, you’re bound to doesn’t carry a huge amount of weight hospital, which won’t have a transplant a real ear and it was grown in a laborato- do a better job when you’re with some- in law and if a relative or family de- team as such, You’re relying upon staff

APPENDICES that may not have had a huge amount you know, a lot of people think that we ships but your diet is affected as well. of training in that area, to approach just whip out the organs before trying relatives at a very difficult point in to save someone. Never the case, the You can barely drink or take anything in their lives. That is the problem with that’s got fluids while you’re on dialysis opting in, that people are reluctant priority is always, to save that person’s because you don’t pee at all. Once your to ask and relatives often surprisingly life. Only then when sadly, patients kidneys actually fail,then you don’t pass often decline because they say things pass away, do we approach families for any water, so you’ve got to restrict all like there may be a small possibility permission to donate the organs, and your fluid intake which, as a diabetic is of recovery, which is something that’s even when its declined I absolutely ful- harder…because a diabetic gets thirsty going to go through their minds. ly support that decision. My job is not if your sugars go up, so I wasn’t very to change peoples views, that would good at that. You had to be weighed groups and a lot of residents of those This is why it’s so important that people take something on a much larger scale, when you arrived and weight when you countries or of that ethnic minority tell their family when they sign up to and widespread education programme. left and then they would judge what to aren’t very good at donating their or- the donor register because that is one It’s more about the way people receive take off the next time by what you’d put gans either. So I knew some black guys of the main problems that we have information, something that needs on. And if they took off too much then who were in their thirties, they’d been people willing to donate their body but to be done, through educating peo- your blood pressure would really drop, there for ten years on dialysis. When when the time comes, the loved ones ple with the facts and making them so sometimes I’d have to sit around for you’re too old to have a transplant, of can’t be sure it’s what their deceased feel that trust, its just so important. about an hour before I felt fit enough course you have to dialyse till the day relative would have actually wanted. to drive home again from Watford. you die. Dialysis doesn’t really have a Being unsure just adds to the pain, Appendix 5. Telephone in- cut off age as such but it works accord- not knowing if you are doing the right terview with Janet Foster, 50 So you’re really restricted as I say, ing to how fit you are, so if my kidney thing, and even declining to donate years old, Kidney transplant on what you can drink, so you know failed now, I’m probably fit enough can be just as hard decision, it creates recipient (November, 2014) lifestyle again, having a coffee out to have another kidney, I mean it just an awful feeling of regret for families. with people I wouldn’t normally depends on how you are with other Before I had the transplant I was on drink coffee or having a tea out with problems. I know younger people The whole topic has become be a bit dialysis that cleans your blood out, people, was hard. The diet was hard who have had a liver transplant as of a taboo subject - which it absolutely which meant spending four hours on because I had to watch any high po- well as a kidney, I know someone who shouldn’t be, families and friends just a machine, on a Monday, Wednesday tassium foods like tomatoes mush- had heart bypasses and still had kid- need to talk about it really. It’s such an and Thursday. Leaving only Tuesday, rooms coffee chocolate as all those neys… I mean it just depends on your amazing thing really, that we are able Saturday and Sunday to lead a normal sorts of things are full of potassium. own quality of life and your health. to do transplants and there are a lot of life. But often by then I would be so ex- people with generosity to donate but hausted from the week I still couldn’t Anyway, I did that for two and a half So yeah, while I was on dialysis one day it’s let down by the number of people really do much and I was unable to work years which isn’t terribly long com- and the phone call came to say there who just don’t talk about it. The less its because dialysis takes up so much of pared to some people. Afro Caribbean was a kidney for me. I was straight talked about as well, it just means that your time, it really affects your quality people have a great deal of trouble up to St. Mary’s, had all the tests and more misconceptions and myths arise - of life, not just through social relation- getting kidneys because of their blood I think we got the phone call at about

APPENDICES say ten o’clock, in the morning and It took a while to work, they can do, flush the kidney out because it is a for- by seven o’clock at night I was going with a cadaver, because they’ve been eign body obviously to your own body. down to theatre, so it really does have on ice basically, they can take a while So that’s what I can tell you. In regards to move very quickly because the to wake up, mine took about a week. to my donor, I had lots of qualms shorter the period that the kidney is out If you have a live transplant they work beforehand, I mean…I’m an active of the other body, mine was what they straight away because they literally Christian and in some senses I prob- call a cadaver, meaning it’s somebody take them out, you know you’ve proba- ably questioned it more than some that has died. That means they’ve obvi- bly seen it on the television, where they other people would have done, and ously been put off life support, because take it from one body from one theatre wrongly, I do feel absolutely wrongly. they have to stay on life support to be to next door, straight into another one. You know, I kept saying ‘oh I can’t its able to take the organs. Mine came somebody who’s died’ and… it’s fun- ybody can have anything of mine’ and from oxford so it had to be taken out I’ve had no problems at all, you have ny, it’s the same when I was diabetic, I he said ‘well why can’t you accept some- and transported up to London, I don’t to go on anti-rejection tablets for the got the same feeling that a lot of peo- thing off someone else who’s got the know where the other kidney went to. rest of your life. Or what they actually ple do, is that I felt like I was walking same attitude?’. That really pulled me say is ‘for the life of the organ’. And it’s round with a big fat label strapped up and I suddenly thought - oh…yeah, Originally I was going to have a pan- the same anti-rejection for whatever round my neck. I think going diabet- there’s a point there isn’t there, you creas as well to get rid of the diabetes you actually have, whether it’s a heart ic was harder in some respects but so know, I’d give anyone my last penny, but they weren’t proving too success- or a lung or whatever. So there’s a you all seem to go through this when why can’t I accept and in the scripture ful so I stuck with just the kidney, if I chemical change that goes on, I mean I you’re being offered a transplant. we’re taught it’s better to give than to had gone for the pancreas, both would took a while to get up and going again, receive and I think that’s what was get- have been done together. But I decid- I wasn’t young, I was 50 when i had My mum was alive when it was first ting to me. But then I just felt no it was ed not to go down that route because mine done, a younger person prob- being talked about, my husband Eric, right because I had more to give in life. at the time there wasn’t a lot of suc- ably gets going a lot better and…um the same couldn’t understand, ‘your I knew that my life wasn’t over and yet cess and already I’d lost my mum by yeah I haven’t ever looked back. I still being stupid this could save your life it was feeling as if it was getting over. then, there was only my husband Eric have to go to the clinic, I go now once blah blah blah’ and I said yeah but it’s and I didn’t feel really with him being every three months just so they check not you who’s going to have someone You do see an awful lot of deaths when self-employed that we could cope with that your levels are all right and you else organ in your body. And then my you’re on dialysis, I mean some people anything going wrong. So yes, I had a know everything is still working okay consultant sat and listened saying ‘yes die on dialysis. Others it weakens them kidney and mine was a perfect match, and I’ve had other operations since. It yes yes’, you know, he was a nice young so much, you know you can go in and I was really really fortunate. It was the doesn’t exclude you from things but man, a lot younger than I was and he see them on a Friday and go in on a same blood group but tissue typing is everybody has to be a bit careful, I still just posed the question one day, saying Monday and find out they died over more important than blood groups in have to be a bit careful. I can’t buy over ‘I can understand what you’re saying the weekend. It was beginning to get transplants but it came up as an excel- the counter drugs, I can’t have any- Janet, it I’ve heard it all before but do to me to be honest, I thought oh my lent match. That was July 2002 and I’ve thing that’s anti-inflammatory because you carry a donor card?’ and I said ‘oh goodness am I going to be next. So I now had it 12 years, on the way to 13 you’ve got to keep your fluids going. I yeah’ and he replied ‘well why do you thought, no, I know I’ve still got more years and instantly your life changes. have to drink about 3 litres a day just to carry that?’ and I just answered ‘well an- in life to give, Eric and I hadn’t been

APPENDICES married for that many years when I with diabetes and with transplants be- simplest of transplants to be honest. had the transplant, I thought not just cause of this whole attitude towards being married but in life I’ve got more it and it is very much the same story Appendix 6. Telephone interview to give and that just changed my atti- for most people. I think you’ve got to with Rik Basra, 55 years old, Bone tude. So it never bothered me, I had go through that because you’re not Marrow transplant recipient and one dream the week after the trans- told one day you’ll need a transplant founder of the Rik Basra Leukae- plant and it was all wrong, because it and then the next day it comes along, mia campaign (December, 2014) turned out that I dreamt that it was a well it’s very rare that it would happen boy in a motorbike accident, which in like that. So you have time to mull the Before the transplant, my quality of life a way confirms it because if somebody whole thing over. I mean I was always was excellent, the thing was I played is going to die, they’re going to die. petrified of having to have an opera- football twice a week, I went to the within the week and I’d be ready to And you know well, somebody having tion, I always said if I ever had to go on gym regularly, at least two or three play a game the following week and an accident…they don’t - well none the operating table, I hoped I’d be in so times a week, ate the right things, I it just wasn’t happening because my of us know if we’re going to walk out much pain that there would be no al- didn’t smoke. So life was good really, I platelets counts were going down tomorrow and get killed but it turned ternative but of course I wasn’t in pain was full time working, I’m a police in- and the bruises weren’t healing. I no- out to be a woman about my own age. and when it actually happened I was spector, and so I was very fit, leading a ticed that things like when I brushed I’d seen my records and my notes, quite excited, which is quite unusual. I busy lifestyle. I was busy with moving my teeth, increasingly I found that my she’d died of a brain hemorrhage. I mean I had serious leg ops since and I into a new house, doing various jobs gums were bleeding, again because thought again if that had happened was absolutely petrified, but this time I around that so a very active I would say. the platelets weren’t being replen- to me, I’d want somebody to have though oh god, hurry up, get me down ished. Other things were things like, my kidneys, my lungs, my heart, you there and get it over and done with! There had been no cancer in the family if I was working around the house, I know…they can have the lot really. or anything like that and all of a sud- was getting breathless, it was slowly It’s quite a short op, just for a kidney it den literally over night that all came getting worse, but it all came to a head It has always now been ‘my kidney’ was only a three hour op,it’s not the big- to a grinding halt when I was sort of when I went to Switzerland for a short now I talk about my kidney, it goes gest of operations. They don’t take your diagnosed. Obviously I say overnight, weekend break. I didn’t know it at the through your mind from time to time. kidneys out, I don’t know whether you I was told overnight literally but with time but I was subsequently told by On the anniversary of my transplant I realise that, when kidneys fail, they’re hindsight there were tell-tale signs the consultant, that any length of flight always think, but yeah there is a fami- at the back and they’re very difficult that things were going wrong, but actually speeds up the effects of the ly still grieving but it doesn’t affect me to get into and once they’ve given up obviously that’s hindsight, I realised cancer. So the flight wasn’t good for because it is now my kidney. I think for working they shrivel down to the size afterwards that these signs were there. me at all, I found when I got off at the that reason you take more care of it, be- of a prune. In fact you can barely see I was getting sort of…more and more other end and arrived in Geneva I felt a cause it isn’t just natural, it’s not yours, mine on a scan now, so it’s different to a often, I was getting a lot more tired lot worse. It was only a weekend over it’s someone else’s. I’ve got a friend ac- heart that fails, you have to take the old more quickly and as a I say I played there but I was noticeably worse while tually who has just become a qualified one out to put the new one in and to be football, I found that bruises I was I was over there, when I came back, doctor of psychology and he’s done blunt there’s not a lot of pipe working getting during football matches just got off the plane and went straight to a whole study on counselling people to be done with a kidney. It’s one of the weren’t healing. Normally they’d heal hospital and the rest is history really.

APPENDICES straight away, because I hadn’t as- I got re admitted to hospital, they did I went to A&E in Leicester and they sociated hematology with cancer all the tests again, took the bone mar- pushed and prodded me about and I and as soon as I saw all the patients row from my hip and stuff like that knew there was something wrong. It with no hair, obviously then I knew and tested that and confirmed it had was just the things they were doing…I that this is a cancer ward. Obvious- returned. But what they said this time mean obviously I had cancer but the ly not everybody had cancer, but was that because it had returned, that things they were doing like feeling the vast majority had blood cancers. they couldn’t do what they did the under my pits and things like that, first time. This time I needed a donor you start to put two and two together. I then went straight into quite an in- and without one I wasn’t going to You start to get a little bit worried but tensive, in fact a very intensive chemo- make it. The doctor then told me that obviously you hope that it isn’t what therapy regime and on that occasion because I happened to be Asian, my ple think that doctors drill into bones you think they might be looking for. they tried to find me a donor. I’ve got chances of finding a donor were pretty to extract the stem cells and all of it three brothers but none of them were slim because just four percent of the is totally untrue. But of course all this But as it turned out, it was the worst a match and they couldn’t find me a registry is makeup of Asian donors. myth actually stifles donation and a lot case scenario and I suppose the point donor at that time, so what they did of people in minority communities - at which I got sort of very worried was was they gave me four lots of very The factual thing is that the UK Stem because they don’t know the facts they when I was in accident and emergen- very harsh chemotherapy over about Cell Registry - only four percent of it is won’t register and what that meant for cy and the doctor that was checking four months or so. The idea was that it Asian. I think there’s a number of rea- me was that I couldn’t find a match. me out, the guy he put a reassuring would hopefully clean out my system sons why they don’t sign up. One of hand on my shoulder and as soon as of any cancerous cells and what they them is that there doesn’t seem to be What they did was, they had to start the he did that I thought I’m in trouble. then said was that, if you can go cancer a lot of publicity out there, across the chemotherapy because literally I was - I Sure enough I then got admitted, I got free for two years, the chances of the Asian community about donation or was dying, so they had to give me the put in a ward ready to be sent to my cancer coming back drop to about one into the issue of blood cancer. I think chemotherapy to get me back into re- final destination as it were. So I was percent. I sort of started a slow, slow, that situation has persisted for years mission and they did that and that was there until the morning and then I was slow road to recovery having gone and years and years. Of course, if all touch and go but they got me back into met by a consultant and a doctor who through those four lots of chemother- you do is send out one type of message remission and they then had to try and again, still hadn’t told me what they apy and I got to about two years. We to the mainstream community and find me a donor and they did a search thought was wrong, but I was then actually went on holiday to Thailand to your shortage is actually within a differ- of the UK database and there was no admitted to a hematology ward and celebrate, of all places. I got back from ent community… your messages aren’t one on there that matched, so they as soon as I got wheeled in - because that with about two weeks over the two going get there. That was the problem then started an international search but they wouldn’t let me walk anywhere year mark and I started to feel unwell. that a lot of Asian people don’t know I mean the clock was ticking, they could which I thought was a bit strange in it- Basically it was a flu that I just could about the issues and they don’t know only give me so much of it because the self… as soon as I got wheeled in I no- not shake, so I went back for more tests what they can do about it. There is a lot chemotherapy would have killed me as ticed that nobody had any hair on the and well, basically to cut a really long of missed information out there about much as the cancer because your body ward, obviously the nurses did but I story short, the cancer had returned. how blood cancers are treated and can only take so much. In fact they gave was talking about the patients…so um what stem cell donation is, a lot of peo- me an extra dose of chemotherapy be-

APPENDICES cause they couldn’t find me a donor Christmas Eve of 2011 and having had versities, places of work, places of wor- they tried to buy me a bit of extra time, the transplant I then had the slow road ship, we go to cultural events but we but they could only do that by giving to recovery after that, I went into isola- tailor our messages so that we maxim- me the extra dose. So by that point tion for about six months after that be- ise the number of people on the Reg- you know, it was getting close to the cause of course they have to suppress ister. I do talks, I do various things to mark. I got called into what is called your immune system having given you promote the facts basically and try and a family room and the consultant ac- a new set of stem cells. The danger is of inform people so that they then sort tually told us to start making arrange- course that your body will reject them, of feel that they want to register. Once ments because they couldn’t find any- sowhattheyhave todoisartificiallysup- people get the facts they usually do to body, so it got quite close to the mark. press your immune system, and slowly be honest because it’s so simple, you it’s really to protect the donor because gradually wean you off it so your body know registration is filling in a form if the recipient dies, they don’t want As things turned out, literally about gradually accepts the stem cells and it and spitting into a tube – that’s it, so the donor to feel guilty or have any sort a week later after that conversation, did slowly but surely. Of course whilst simple. If you were lucky enough to of emotional effects from it and the he walked in and drew the curtains your immune system is suppressed be a match, you know its thousands to way to protect them is to not have any around the bed and said we think we you’re susceptible to all sorts of infec- one that you’ll be a match but without contact with each other. I have written might have found someone in Germa- tions and people die from quite minor having people registered, no one gets to my donor but what they do is…it has ny that was not a perfect match, they infections in fact, so I stayed in com- a match. If you are lucky enough to be a to go via the hospital and they take out were a nine out of ten match which plete isolation, so I wasn’t coming into match its very much like giving blood, any reference to anything that might isn’t perfect, but as it turned out they contact with other people who could it’s really simple, so once we’ve ex- identify you, I mean by the time they’d were a very good match for me. We potentially give me other diseases. plained the facts, most people sign up. taken all that stuff out - because they didn’t know that at the time but they even take out whether you’re male were a match and that person gave me So that’s what we did and things Anthony Nolan are the UK Stem Cell or female, they’ll take out whether the chance of life, without that person worked out and I’m still here today. Registry, we actually hold a couple of you’re married or single, they’ll take I certainly would not be here today. I’m back at work and picked up the their all-time records for the highest out whether you have children so they flecks of my life and whilst I was in number recruited through college and take out anything and everything that Literally I went from one week of hospital we started Rik Basra Leukae- university events, so we’re really proud might identify who you are. To be hon- having no hope, to at least having mia campaign. Which basically what of that. I suppose it’s a way of giving est by the time they’d taken everything a chance, but I knew it wasn’t all it’s about, the shortage of stem cell something back, because someone out it’s almost like a thank you very over then because 50% of people donors. Well, we started a campaign did it for me, someone in Germany, much type letter, there’s not much don’t make it through transplant but to do something about that, we’ve re- they went along, they provided their left in there. But after two years - you without the donor I have no chance cruited thousands to the Register now saliva and filled in a form and their still have to do it through the hospital at all, so we were over the moon. and we have a particular way that we the reason that I’m still here today. but if both of you consent, you can operate, we work in all communities actually write directly to each other. I carried on with the chemotherapy and recruiting anybody and everybody. In regards to my donor, you’re not al- as things turned out the donor came lowed to meet them, well certainly not What we found is, I mean I’ve met through for me. I had the transplant on What we do is go into colleges, uni- for two years, and the reason for that is, many many donors now through our

APPENDICES campaign and you tend to find that the raised the profile of the issue to a point automatically placed on the Organ vast majority don’t want to have any where, even if people don’t want to Donor Register and have the choice contact with the person they’re sup- engage or register at this moment to opt out if we wish to? porting or saving the life of. I suppose in time, if they know about it, that’s they want to do their bit, they want to part of the battle, because they’ll tell 9. Is there anything you are unsure of save the person but they don’t want the other people or they’ll talk about it regarding organ donation? personal attachment or complication to other people, and that way, if we that that potentially could bring, that’s save one life it’s worth it, for the effort. 10. How well would you describe your what I’ve tended to find. But of course some people do meet their donor but Appendix 7. Questions used to sur- knowledge of organ donation? that’s a personal thing between the two vey a focus group in a face to face people. The fact that my donor hasn’t interview. The group consisted of 20 replied, indicates to me that they don’t participants, 10 male and 10 female want that complication and you’ve got of ages ranging 18-74 years old. to respect that, I’ve got no problems with that, I’m just grateful really. So 1. Are you on the NHS Organ Donor that’s basically my story in a nutshell. Register? To be honest I didn’t know anything 2. When were you first aware of Organ about it (stem cell donation), I was one Donation? of those who I try and educate now be- cause no one had come to me and said 3. Would you consider signing up? there’s a shortage. I didn’t know what Leukaemia was to be honest, I didn’t 4. What concerns you the most about know about blood cancers, I didn’t donating your organs? know it was this easy to do something about it. It wasn’t a case of that I hadn’t 5. What would encourage you to join bothered engaging with it, I obviously the register? did not know anything about it, no one had bothered telling me so you know, 6. Do you know anyone who is regis- part of the work that we do is raising tered? awareness, it’s about education, it’s about giving people the information 7. If you are already on the register, that they need. I hadn’t been given why did you sign up? that so I knew nothing about it, I was ignorant basically. Hopefully we’ve 8. Do you think we should all be