10,000 people in the UK are waiting for a transplant and the significance of this issue for the Asian community is huge. We only make up about 8 % of the population but make up nearly 30 % of the transplant waiting list, making the Asian community 3 times more likely than the rest of the population in the UK to require a transplant.

On today’s show I had the pleasure of talking to Professor Gurch Randhawa. He said that they had been doing research for many years working with different communities from the Asian diaspora experiencing a wide range of issues. Highlighting a few of them he said those issues are no different than the ones the white community faced 10 or 20 years ago.

  • There is a general lack of awareness of organ donation
  • People have concerns of life after death
  • Some worry that their body would look disfigured
  • Issues around burial/cremation rituals
  • People are concerned if they are on a donor register will a doctor genuinely try and  save their life
  • Religion is one of the major issues for the Asian community

Prof Randhawa feels that we need to work with religious leaders to make sure that these conversations are had openly and people can have a safe environment to discuss organ donation. Because when unsure about what to do from a religious perspective people tend to go to their local place of worship to get an answer but sometimes the answer found there can be ambiguous.

A lot a people feel that organ donation is a good idea but a lot of them also say that it is their religion that stops them from signing on. Unless the religious scholars endorse it, it’s very difficult to convince a large number of members of the community to agree. He spoke about the Faith Action Plan that was published last year as a result of all the religious leaders from every single faith in the UK coming together and agreeing to support more conversations around organ donation.

The key thing about organ donation is to have a discussion with the family and then ideally that person should sign up on the organ donor register. But Prof Randhawa said that even if are not registered on the list that’s alright but he stressed that the most important thing is to let your family or loved ones know because at the time of death if you are a potential donor then the family will always be asked for their consent. Their research has shown that being on the organ donor register makes it easy for the family to take a decision and say yes. But sadly even when someone is on the donor register but they have not discussed it with their family then sometimes the family end up refusing to donate because they say if this was so important for the person then they would have discussed it with them.

He said that organs are matched on blood type and tissue matching so in theory an Asian can receive organs from a Caucasian person, and because of the less number of Asians wiling to donate most of the organs come from a non-Asian person but statistically he said that it is far more likely to find a match from the same ethnic group which is why it’s important for all the communities to participate in organ donation. Looking at family consent rates it’s about 60% in white communities but only 30% in Asian communities. Prof Randhawa said that the Asian community which is the most in need of transplantation is also the most likely to say no to organ donation. And being the Transplant Week, it is important to spread the message about organ donation and make people realise how important it is to talk about it.

If a person is diabetic the Prof Randhawa said that as a live donor he cannot donate his kidneys but as a deceased donor they would do some very strict checks and depending on the results that person may be able to donate other organs.

If a person wants to donate his or her entire body after their death then there is another organisation called the Human Tissue Authority who needs to be contacted but they have a very strict procedure about how people give consent to donate their body to the hospital for research and that process doesn’t then allow organs to be used for transplantation as there are different consent processes.

Talking about the process of the donation he said that the hospital will always be sensitive to the patient who has died and also their family and loved ones as this will be a very emotional time and people will be grieving for the loss of their loved one. He said that they will try to remove the organs as quickly as possible once the family has consented so that the body can be returned to the family soon. There will be some scarring in the places from where the organs have been removed but it’s very minimal and is done in a very sensitive way so that the burial or cremation can take place properly. He said that the NHS is fully aware that the family want to give the right send off or goodbyes to their loved ones.

Prof Randhawa said that the following organs can be donated

  • Kidney
  • Heart
  • Liver
  • Pancreas
  • Lungs
  • Tissues and valves
  • Stem cells

There is no age restriction, if the condition of the organs is good then they can be used irrespective of the age of the donor.

There are a number of ways by which people can join the organ donor register

  • Collect a form from the GP
  • Get forms from many participating high street stores
  • Go to www.organdonation.nhs.uk and register there

The reason that we have such a huge overrepresentation on the donation waiting list is because of conditions like diabetes and kidney disease. The Asian community is 4 times more likely than the rest of the population to have diabetes and we are 10 times more likely to progress from diabetes to kidney disease. Speaking about the research on why this is so, he said that it is not just because of the genetic predisposition but it because although the Asian community are very good at taking pills and tablets they are not as good at making lifestyle changes. The white patients with diabetes are better at making lifestyle changes and are less dependent on the medication whereas it is the other way around for the Asian population and what they don’t realise is that they are still likely to go on and get kidney disease despite medication at times. It is vital that we focus on the prevention of organ failure as well as the need for having conversations around organ donation.

I had a great time talking about organ donation with Professor Gurch Randhawa.