House of Lords - European Union - Seventeenth Report

Select Committee on European Union Seventeenth Report

CHAPTER 9: ETHNIC AND CULTURAL ASPECTS

317. It is widely recognised that cultural issues among some ethnic minority groups may significantly influence both the demand members of these groups have for organ transplants and the extent to which they donate organs. Since the proposals from the European Commission are aimed at increasing organ donation rates across the EU, it was essential for us therefore to take evidence about how organ donation is regarded among ethnic minority and other groups in order to identify important barriers to this objective which existed in the UK.

318. The evidence we received enabled us to broaden our inquiry to consider how socio-economic and other factors, interacting with ethnicity, can influence both the demand and supply of organs.

The need for organ transplants in ethnic minority communities

319. Professor Gurch Randhawa, Director of the Institute for Health Research at the University of Bedfordshire and an expert on donation issues within the black and South Asian minority communities in the UK, reported that 20% of people on waiting lists in the UK for organ transplants were from ethnic minority communities. This is a far higher proportion than all such people represent in the overall population. While this tendency was most pronounced for patients waiting for kidney transplants, it was also the case for those awaiting liver and cornea transplants. (QQ 183, 186).

320. Mr Chris Rudge of UK Transplant provided evidence which was consistent with Professor Randhawa's interpretation of the statistics. He stated, "At the moment 23% of the people who are waiting for a kidney transplant are from black and minority ethnic backgrounds; approximately 8% or 9% of the population are from that background and only 3% of organ donors come from that background. There is a clear mismatch" (Q 135).

321. Mr Rudge went on to explain that the reason for such a high demand for kidney transplants among ethnic minority communities was that the incidence of kidney failure was three or four times greater in patients from an Afro-Caribbean, African or Asian background than it was among the white population (Q 135). This was a particular problem because, as Professor Randhawa explained, it was often the case that a transplant would be successful only if the donor came from the same ethnic group as the recipient so that there was a better chance of a close match of tissue type and blood group between the donor organ and the recipient (Q 183).

322. Professor Randhawa believed that the situation was set to worsen as the ethnic minority communities aged. He advised, "The current problems we see in dialysis units across the country, especially in inner city areas, are actually going to get a lot worse before they get better unless we address the two fundamental issues. One is around how we are going to increase the number of organ donors amongst those communities and secondly—which I think is far more important—how we are going to stop the need for transplantation amongst those communities by preventing ill health in the first place" (Q 183).

Organ donation issues in ethnic minority communities

323. Mr Rudge told us that the organ donation rate was relatively low among the ethnic minority communities which were in most need of organs for transplants. He said that while 35% of the relatives of white patients refuse consent for organ donation, among the relatives of other patients the refusal rate was 75% (Q 135).

324. Dr Paul Murphy, Leeds General Infirmary, took the view that low levels of donation among the black and ethnic minority groups was just one aspect of a wider cultural issue. He argued that, among such population groups, this "is simply one facet of what is by and large often an unsatisfactory relationship between the healthcare professionals and the family."

325. Dr Murphy saw the fundamental issue being a disagreement between families and health care professionals over who had authority to make decisions, a disagreement that was rarely resolved and therefore had an impact on the final decision over whether or not to agree to the donation of a relative's organs. He went on to observe, "I am not sure intensive care unit (ICU) staff necessarily have enough knowledge about how the ethnic groups have different views on the aftermath of death and the disposal of remains. I do not think we can take that as a given at all" (Q 269).

326. Dr Anthony Warrens, British Transplant Society, took a similar view, telling us of a "recurring theme of alienation amongst certain communities from the medical establishment". He said he had found that among such communities people often feel that the process of organ donation is not something in which everybody is dealt with equally. Moreover, he reported, "some communities feel that they would not be accorded the same level of care in order to preserve their personal health if they were seen as a potential donor" (Q 234).

327. Ms Jayne Fisher, Chair of the UK Transplant Coordinators' Association, supported this view. She pointed out that the Potential Donor Audit[50] appeared to reveal that, despite a higher incidence of kidney failure and diabetes, a lower proportion of people from the South Asian community than from across the population as a whole is admitted to intensive care units within the UK. Because of that she said, "one can assume that there is less likelihood of them being identified and becoming a potential donor" (Q 293).

328. Professor Randhawa drew attention to the complexity of the issue. "I think ethnicity in isolation does not influence whether you become an organ donor or not. The only reason we have focussed on it is because we actually have some data at least to give us an idea of which communities to focus on. When you look at the people who do choose to become organ donors it is influenced by the amount of information they have been exposed to and their ability to understand that information, which again is influenced by their levels of education and social class" (Q 189).

Disease Prevention

329. Explaining the urgent need to engage with the issue of disease prevention, Professor Randhawa said, "A lot of the work I have done has shown that if you want to get people to think about death and think about giving organs, think about burial and ritual rights, you have actually got to go into those communities and really tackle this face to face. That is going to take a long time. In the meantime, if we do not deal with the preventative stuff the NHS will go bankrupt trying to deal with the dialysis problem that will occur" (Q 185).

330. Professor Randhawa described his research into the extent of diabetes among the South Asian community in the UK and the high rate of kidney failure among this group which resulted from this disease. He explained that many people in this group who were ill with diabetes, for one reason or another, did not understood that it could lead to further complications (Q 185).

331. He went on to question the appropriateness of some of the health care interventions that have been adopted in this area explaining, "what we have done in this country at the moment is borrowed a lot of self-care models from the US which, I might add, have been tried and tested on predominantly white, middle-class people who can afford private insurance. They have not been tried and tested amongst the very diverse population from very different socio-economic groups in this country" (Q 186).

332. Professor Randhawa also commented, "a lot of these communities come from countries where you actually take no role in self-care". He said that it was necessary to understand how much resource was required in order to establish a preventative approach among these groups, but commented, "The prize is huge if we can get there … if we can get that right we should be able to deal with at least kidney failure and diabetes failure" (Q 186).

333. Mrs Elisabeth Buggins, Chair of the Organ Donation Taskforce, described a project in the West Midlands in which people from deprived communities were being trained to become health trainers within their own communities, covering such issues as the impact of lifestyle on health. She felt that the local focus that this programme provided was a good means for dealing with the prevention of disease as well as the promotion of organ donation (Q 496).

Reaching out to communities

334. Ms Jayne Fisher felt it was important to work within the communities with low donation rates to understand better why people did not wish to donate, but she was concerned that nothing which had been done so far had seemed to make any difference (Q 293).

335. Mr Raj Aggarwal, Chairman of Kidney Wales Foundation, reported that ethnic minority groups "are concerned at the heavy hand of government, of EU matters, with the top-down approach". He thought that, in order to address the concerns and gain trust, government organisations, especially UK Transplant, needed to communicate differently with these groups, perhaps through religious leaders (Q 173).

336. Professor Randhawa was generally more optimistic about some recent community based interventions, but related it back to the issue of disease prevention. "One of the criticisms we were actually getting—quite rightly—from certain communities was, 'So let me get this right. We have never seen you before and now you are telling us that our communities are dying and you need our organs. Where were you when we had the diabetes and high blood pressure and kidney failure?'" (Q 188).

337. Mrs Elisabeth Buggins reported that one of the recommendations of the Organ Donation Taskforce's report had called for ways to be found to acknowledge, personally and publicly, individual organ donors.[51] She thought that this approach might help to raise organ donation rates among ethnic minorities (Q 484).

Data needs