Professor campaigns for more Asian organ donations
A Sikh health expert has been awarded £130,000 for a two-year research project which could prove vital in efforts to increase the number of UK organ donations from south Asian and black ethnic groups.
NHS Blood and Transport has awarded the funding to Professor Gurch Randhawa, Director of the Institute for Health Research at the University of Bedfordshire, who will study why people make gifts in their everyday lives.
It is hoped his findings will inform strategies for future organ donation appeals. Changing perceptions about organ donation among south Asian and black groups is already part of a campaign to increase donations by 50 per cent in the next five years.
The campaign took on renewed significance this month when the Department of Health’s Organ Donation Taskforce decided it could not support a national system of ‘presumed consent’ – the so-called ‘opt out’ solution – for organ donation, as suggested by Chief Medical Officer Sir Liam Donaldson. At present would-be donors have to ‘opt in’ through an organ donor registration scheme.
Professor Randhawa is a member of the Organ Donation Taskforce and chaired a sub-committee examining the views of faith groups towards ‘presumed consent’.
He told Sikhs Online that the need for organ donors was three or four times higher among black and Asian people than among the general population, but donation rates were relatively low among those groups and this impacts directly upon those communities.
The professor explained: “It reduces the chances of finding a successful match, as organs are matched by blood group and tissue type and patients from the same ethnic group are more likely to be a close match.”
He said black and Asian people had a much greater chance of needing a kidney transplant than the general population, as they were more likely to develop diabetes or high blood pressure, which are major causes of kidney failure.
Professor Randhawa’s project has the backing of a Sikh family in Luton, close to the Bedfordshire university.
In January 2001, Mandip Mudhar, a 20-year-old student, died in London’s Royal Free Hospital six days after suffering severe head injuries in a road accident. Told that he would not recover consciousness, his parents decided to donate Mandip’s heart and two kidneys.
His heart was given to a middle-aged man and his kidneys to a young mother and a girl of 14 who was previously reliant on dialysis. Seven years later, all three are doing well and Mandip’s memory also lives on in a memorial foundation which has, among its aims, raising awareness of the importance of organ donation within ethnic groups.
The Mandip Mudhar Memorial Foundation was started by Mandip’s family. His brother Bobby, the foundation’s general secretary, said: “My parents became my ultimate heroes when they said at his bedside that ‘as Mandip will no longer be with us, if in his passing he can help others, then that is the right thing to do’.
“Whilst it was a sad moment we truly celebrated my brother’s life and the honour of being able to help others at such a tragic time.”
Bobby added:”The whole experience of donating my brother’s organs was looked upon as ‘sewa’ from my family.”
He said the memorial foundation enabled its supporters to celebrate positivity out of tragedy. “Our motto is: ‘The key to immortality is to live a life worth remembering’.”
Among potential donors the refusal rate for non-white groups is 69 per cent, according to Professor Randhawa, compared with 35 per cent for potential white donors.
“Community leaders and religious groups need to engage with their local community to encourage organ donation and we need to identify what would make the gifting of organs relevant to a multi-ethnic and multi-faith society,” said the professor.
He said a number of barriers to donation had been identified among ethnic minority communities. These included:
– Little awareness that Asian and black people are more likely to need a transplant – and of the link between hypertension, diabetes and kidney failure.
– Confusion about who can donate and receive organs and the donation and transplant process
– Mistrust or lack of confidence in the medical profession
– For some black people particularly, a fatalistic view that it is God who decides who lives or dies and that it not up to people to intervene by donating organs
– Reluctance to discuss death
– Fear of disfigurement of the body
– Assumed cultural and religious objection to organ donation
– Lack or awareness of the NHS Organ Donor Register and how to register.
For some people, perceptions of their own status appears to affect their attitudes – they feel marginalised by mainstream society and unwilling to take part in initiatives from mainstream organisations.
The Sikh perspective on organ translation is addressed on a leaflet available at the UK Transplant website.
“Sikh philosophy and teachings place great emphasis on the importance of giving and putting others before oneself”
It also stresses “the importance of performing noble deeds and there are many examples of selfless giving and sacrifice in Sikh teachings by the ten Gurus and other Sikhs. Sikhs believe life after death is a continuous cycle of rebirth but the physical body is not needed in this cycle – a person’s soul is their real essence.” (The dead sustain their bond with the living through virtuous deed.” Guru Nanak, Guru Granth Sahib, p 143)
Dr Indarjit Singh, Director of the Network of Sikh Organisations UK has stated that: “The Sikh religion teaches that life after death continues after death in the soul, and not the physical body. The last act of giving and helping others through organ donation is both consistent with, and in the spirit, of Sikh teachings.”
Around 8,000 people in the UK need an organ transplant but only 3,000 are carried out each year. A thousand people a year die waiting for an operation.
If you wish to sign up to the NHS Organ Donor Register, you can do so online at http://www.uktransplant.org.uk or by calling the NHS Organ Donor Line: 0845 60 60 400. Lines are open 24 hours a day, 365 days a year.
For more information on the Mandip Mudhar Memorial Foundation log on to http://www.mmmf.org.uk
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