PERSONAL VIEW

We need more organ donation from ethnic minorities There is an incongruity among ethnic minorities between those prepared to donate and those who need to receive organs and stem cells. Adnan Sharif suggests we consider ways of prioritising recipients

n December 2006 the B ritish set population it would also likely serve as an impetus up an organ donation taskforce to identify bar- for minority ethnic people, who will have an even riers and solutions to boosting organ donation longer wait under a prioritisation system if they do in the United Kingdom. The recommendations, not commit. Raising awareness of organ and stem published in January 2008,1 were intended to cell donation among minority ethnic communities, Irectify one of the worst organ donation rates of any such as with the Kidney Research UK peer educa- country in Western Europe. tor model of targeted community based educa- Boosting organ donation from deceased tion, would have more impact if prioritisation was donors by 50% within five years was a laudable introduced because it has personal implications. aim. Achieving this target in 2013 has therefore Minority ethnic people cite many concerns about been a notable success, although it is too early to organ donation relating to distrust, or religious or ascertain whether the increase in organ quantity sociocultural issues,7-10 but these concerns don’t has come at the expense of a decrease in organ seem to arise when the situation is reversed—to the quality. In addition, over the past four years the receiving of an organ or stem cell transplant. That number of registrants to the organ donor register someone can be fundamentally opposed to dona- (ODR) has increased by 30%, and the numbers tion but conversely be receptive to receipt is disso- of deceased and living donors have risen by 35% nant—one cannot, and should not, exist without and 23%, respectively.2 the other. Introducing priority points in allocation However, since publication of this report there scoring systems would reduce this incongruity. has been a huge failure to boost organ donation The strategic planning by NHS Blood and Trans- from members of black, Asian, and other minority More ethnic minority donors are an NHS priority plant for the next few years has made boosting ethnic communities. It is a similar story with the donation from minority ethnic people a priority. registration of donors for blood stem cell trans- only a third of eventual donors are actually regis- Although NHS Blood and Transplant encourag- plantation, with severe shortages of minority eth- tered at the time of their death (37% in the finan- ingly raises hopes of promoting a national debate nic donors skewing the cell type matches available. cial year 2011-12).3 on reciprocity in its strategic plan up to 2020, Ethnic minorities constitute 10.8% of the UK A new approach should be to tackle the ele- there seems little enthusiasm for championing population but are over-represented on organ phant in the room: the problem of apathy or so such a dynamic yet controversial allocation sys- waiting lists (24%) and under-represented on the called free riders—people who are happy to receive tem at executive level. ODR.2 3 Of actual organ donors, only 4.2% are an organ but not to donate. However, the organisation must appreciate from minority ethnic backgrounds.3 Although Lavee and colleagues outlined a novel Israeli that it is unlikely that organ and stem cell dona- minority ethnic registrants on the ODR increased approach to this phenomenon in 20104: prioritisa- tion from minority ethnic communities will sub- by 61.3% between 2008 and 2012, the actual tion for transplantation is given to previous actual stantially improve by 2020. What has not been numbers remain small (73 512 on 31 March 2008 donors or those registered for at least three years fruitful so far is unlikely to reap any great benefits and 118 598 four years later), and the increase to be donors. Israel has subsequently benefited in the immediate future. Introducing prioritisation equates to only 2.8% and 3.5%, respectively, of from a boost in organ procurement and a reduc- would be one step to overcome apathy in organ and all registrants with known ethnicity. tion in organ waiting lists5 (although this cannot stem cell donation and it must be actively explored. Relatives of non-white people are also less likely be solely attributed to the prioritisation clause Adnan Sharif is nephrology consultant, Department than white people to because other relevant of Nephrology and Transplantation, Renal Institute of give consent for organ Minority ethnic people cite many laws were concomi- Birmingham, Queen Elizabeth Hospital, Birmingham B15 2WB, UK [email protected] donation from loved concerns about organ donation . . . tantly enacted and a I thank the following colleagues from the National BAME ones who have died but these concerns don’t seem to large public awareness (black, Asian and minority ethnic) Transplantation Alliance in appropriate circum- arise when the situation is reversed campaign initiated). for critical appraisal of this article: Anthony Warrens, Gurch stances for donation The prioritisation Randhawa, Myfanwy Morgan, Richard Davidson, and Orin Lewis, as well as those who preferred to remain anonymous. 2 (30.3% v 68.5% for donation after brain death). approach raises ethical difficulties, such as coer- Competing interests: I am a member of the South Asian For these reasons minority ethnic people have cion, religious constraints, or strategic behaviour,6 Health Foundation and the National BAME Transplantation 2 Alliance. This work has been produced independently of any longer median waiting times for organs. This and translating such a policy to the UK would be influence by or affiliation to either of these organisations. is predominantly a consequence of biological fraught with challenges. Consideration of a similar Provenance and peer review: Not commissioned; externally differences between ethnic groups because of system would require adequate resources and pub- peer reviewed. disparate frequencies of different blood groups licity to ensure ample public awareness of embed- References are in the version on bmj.com. Cite this as: BMJ 2013;347:f5036 and particular combinations of alleles for human ding incentives in the new allocation system. bmj.com leucocyte antigen found in members of different However, developing a prioritisation system for ̻̻News: UK aims to increase its organ donor rate by ethnic communities. organ and stem cell donation has inherent fair- 50% over next eight years (BMJ 2013;347:f4500) Simply pushing for more registrants on the ness for all—not just for minority ethnic people. ̻̻Research: Modifiable factors influencing relatives’ organ donor register is not the solution because Although it would positively affect the general decision to offer organ donation BMJ( 2009;338:b991)

22 BMJ | 24-31 AUGUST 2013 | VOLUME 347 PERSONAL VIEW

I blew the whistle on disability assessments Greg Wood went to the media with concerns about the ethics surrounding tests for fitness to work—and eligibility for benefits—that the UK government has outsourced to Atos

ctually, two whistleblowers went training of new assessors. On one, manual dexter- Auditors supposed that they could public before me, and several ity, the guidance was just plain wrong. The train- tell that a patient with a chronic and other doctors have raised concerns ing said that this all boiled down to an inability only part treated psychotic illness had anonymously. I am a former general to press a button, whereas the regulations allow adequate mental focus, despite not practitioner in the Royal Navy, where points to be awarded when there are difficulties assessing the patient for themselves Awork related assessments are bread and butter forming a pinch grip, holding a pen, or operating stuff. The UK Department for Work and Pensions a computer. The other “rules of thumb” showed The position of the General Medical Council is (DWP) devised the work capability assessment a combination of discrepancies and question- that doctors should not alter such reports if they (WCA) to judge whether people who receive able interpretations of medical knowledge—for think that it would make a report less accurate, out of work sickness benefits could, in fact, example, moving from one room to another at or would render it misleading to the body com- cope with most forms of work. A more stringent home was supposed to be equivalent to moving missioning it—that is, the DWP. I resigned from test came into use in 2011, and the govern- 200 metres. The effect was to reduce a claimant’s Atos primarily over this widespread interfer- ment made no secret of the fact that it hoped likelihood of entitlement to financial help. ence with reports, which I felt encroached on this would boost the labour market, improve Another concern was the absence of documen- my professional autonomy and crossed ethical people’s self esteem and personal income, and, tary evidence, which, in my experience, occurred boundaries. of course, reduce government debt. in about a fifth of assessments. This was a simple So I blew the whistle and found myself talk- For many years the information technology failure to move important pieces of paper from ing to parliamentarians and journalists, and and “business process outsourcing” company one building to another but the assessment was then making an appearance on BBC news. It Atos has had a contract, now worth £100m expected to go ahead regardless. was nerve racking trying to choose my words (€116m; $155.4m) a year, to carry out several And my third concern was that there was carefully while keeping the message clear and social security benefit assessments, includ- an implicit assumption that the most likely simple. Obviously I worried about the repercus- ing the WCA, for the Department for Work and outcome of an individual face to face assess- sions, but what had tipped it for me was that the Pensions. In my view this risks tension between ment was that the person would be found fit for DWP had stonewalled on this for more than two doctors’ professional work. I have no reason years; medical knowledge was being twisted; concerns on the one to believe that this was misery was being heaped on people with real hand and business deliberate; it was prob- disabilities; and the cost to the taxpayer of these imperatives on the other. ably more a question flawed assessments and the subsequent suc- The WCA had a trou- of wishful thinking cessful tribunal appeals was going up and up. bled childhood. From and a misunderstand- Three months after I blew the whistle, the early on, claimants and ing of basic statistical DWP announced that all Atos assessors were to disability groups were principles. You can’t be retrained and that external auditors reporting problems. expect the proportions had been called in to improve the quality of They felt the assess- of claimants who are fit the WCA.

ment was a box ticking to work who are seen by To others considering blowing the whistle, I SEELI/DEMOTIX/PA process, where medical The fitness to work test has caused a public rumpus an individual doctor to would say this: if it is important enough to you assessors spent most of correspond to national and you do not believe that the problem can be their time punching superfluous lifestyle data trends. The general culture was one where, at fixed by more conventional means; if you can into the computer. And the likely outcome as the point when their file was being opened for back up your assertions with evidence; if you they saw it? Computer says no. the first time by the assessor, it was broadly are prepared to risk alienating your colleagues; In fact, the test, on paper at least, isn’t too assumed that an individual claimant was more and if you are robust enough to deal with the bad, though it isn’t going to win anyone a Nobel likely than not to be found fit for work. slings and arrows that might come your way; prize. But it cannot adequately take into account My fourth concern was that Atos auditors, for then blow your whistle loud and blow it proud. health conditions that fluctuate unpredictably, quality assurance purposes, were in the habit Greg Wood is a former naval doctor and Atos disability and it tries to include too broad a range of jobs. of demanding that healthcare professionals analyst, London [email protected] Driving, call handling, shelf stacking, data entry, change their reports without seeing the patients Competing interests: None declared. Provenance and peer review: Not commissioned; not and cleaning, for example, are all theoretically themselves. This seemed fairly reasonable if externally peer reviewed. covered. And although the test is nominally a pre- the amendment could be justified, but not so Cite this as: BMJ 2013;347:f5009 employment medical test of sorts, it is really still reasonable when the doctor who had seen the about measuring the person’s level of disability. patient thought otherwise. For instance, audi- bmj.com ̻̻News: Half of disability assessment bodies will be In early 2013 the WCA was still causing a rum- tors supposed that they could tell that a patient from the NHS (BMJ 2013;346:f1143) pus in public, despite a series of external reviews. with a chronic and only part treated psychotic ̻̻Review: The disturbing truth about disability One problem that dawned on me over time was illness had adequate mental focus, despite not assessments (BMJ 2012;345:e5347) the widespread use of five ill conceived so called assessing the patient for themselves, and using ̻̻Observations: Atos and changes to disabled rules of thumb that were promulgated during the solely a report. people’s benefits (BMJ 2012;344:e1114)

BMJ | 24-31 AUGUST 2013 | VOLUME 347 23 LAST WORDS

FROM THE FRONTLINE Des Spence The BMA and its staff’s private health cover

Gaudy, supposedly personalised, adver- organisation that vigorously campaigns emotionally insecure.5 Doctors who work tising banners flash down the side of my to defend the NHS, expounding its found- in both sectors have a potential conflict of email account. I am surprised that they ing principles in BMA publications, interest (perceived or otherwise) in main- promote online casinos, budget holiday to do this? Isn’t that clear hypocrisy? I taining waiting lists. Yet many on the poli- sites, and, most commonly, private medi- am against private medicine in princi- tical right (and at , it seems) cal insurance. A smiling, white coated ple, flatly rejecting the commonly used are blind to these consequences. How can young woman suggests that I can “jump defence that those opting to go private the BMA endorse private practice? NHS queues.” These adverts amuse and reduce pressure on the NHS, actually The BMA is no standard employer: it irritate me by the same token. subsiding NHS care. has a duty to uphold the interests and val- The BMA recently started offering a No: when important institutions side- ues of its members. I suspect that most private medical plan to its entire staff. This BMA policy step standard care it undermines the of its membership disapprove of queue Employees pay directly through their suggests that NHS. Only the influential have the power jumping and believe in the principle of salaries but benefit from reductions in to ensure that waiting lists are kept down equality of care irrespective of the abil- national insurance contributions. But the the NHS and its and that the NHS is held to account. ity to pay. This BMA policy implies that directors and the senior managers of the doctors are second Every­one must have a vested interest in the NHS and its doctors are second rate. BMA have had private medicine as part of rate. I object to a the NHS to make it work for everyone. By I object to a single penny of my subscrip- their remuneration for some time. This is single penny of my supporting private medicine, the BMA tion being spent on private medicine. paid for largely through individual BMA subscription being abdicates any legitimacy and credibility Perhaps I am over-reacting, just typical membership fees of £343 a year. spent on private when advocating for the NHS. phony socialist indignation. Private medical schemes are offered to medicine Private medicine also offers unnec- But what do other doctors think? Do the staff by many other organisations, such essary treatment, overinvestigates, actions of the BMA elite shame us, its as the General Medical Council and even and lacks the regulatory oversight of the rank and file membership? the purportedly NHS supporting news- NHS. Examples are many, from medicals Des Spence is a general practitioner, Glasgow 1 3 paper the Guardian. The GMC’s uncon- Twitter offering unscientific screening, dubi- [email protected] 3 vincing pretext is to attract and retain the ̻̻Follow Des Spence on ous radiography, and the raft of plastic References are in the version on bmj.com. 2 4 best staff. But is it right for the BMA, an Twitter @des_spence1 surgery that preys on the financially and Cite this as: BMJ 2013;347:f5199

DRUG TALES AND OTHER STORIES Robin Ferner A bee in the bonnet

The editor’s advice to authors can be slimy substances. The new dressings The idea that honey, like asses’ forthright: “We can assure [him] that are expensive, so financial viability milk, is good for the skin goes back to we are doing him infinite service by is sacrificed on the altar of so called antiquity, so there is hardly any need to recommending him to restrain his too tissue viability. This is true even though demonstrate efficacy. This is probably fluent pen. He is only compromising systematic reviews have repeatedly just as well. Despite the efforts of the his position and losing his friends found the evidence for better healing of honey research unit at the University by rushing into fiery print on every ulcers and wounds with new dressings of Waikato in New Zealand (“set up possible occasion.”1 to be at best unconvincing.4-13 in 1995, with financial support from The object of this reproach was not Now honey is flavour of the the New Zealand Honey Industry me (or Des Spence), but the redoubtable month. In some parts of the world Trust”),15 there are few suggestions Birmingham surgeon Joseph Sampson the preferred version is taken not Despite the efforts that honey heals wounds. A Cochrane Gamgee.2 His tirades were sometimes as a teatime treat on toast, but as of the honey review found the evidence at best well directed, as when he condemned “mad honey” from bees that have research unit at uncertain9; honey may even delay the the army’s punishment for desertion: gorged themselves on rhododendrons the University of healing of burns. And I foresee a risk of branding the letter D on the soldier’s especially rich in grayanotoxin. Mad wasp stings. Until someone can show 3 Waikato in breast. He was well known for honey is an industry in the Turkish Zealand, there are convincingly that wounds heal better his invective, but also his inventions, province of Trabzon, where men with designer dressings or superior including a lightweight splint, the take it (by mouth) to enhance their few suggestions snake oil, we might as well stick to non- sanitary towel, and a tissue dressing lust lives. This leads to occasional that honey adherent gauze. of cotton wool sandwiched between outbreaks of “mad honey disease,” heals wounds Robin Ferner is director, West Midlands Centre gauze pads. “Gamgee tissue” was a syndrome of nausea, vomiting, for Adverse Drug Reactions, Birmingham widely used for a century but is now vertigo, hypotension, dysrhythmia, [email protected] being eclipsed by designer dressings and syncope that may knock the sugar References are in the version on bmj.com. 14 using seaweed, silver, and sundry other coating off this Turkish delight. Cite this as: BMJ 2013;347:f5015

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