Page last updated at 23:21 GMT, Saturday, 24 May 2008 00:21 UK

'My father is giving me a kidney'

By Jane Elliott
Health reporter, BBC News

Ermine Hunte
Ermine Hunte needs a new kidney
For Ermine Hunte the long wait for a new kidney is almost over.

But, because she is black, she has had to turn to her own father for a living donation.

Ermine, aged 29, suffered kidney failure three years ago and for the last two years has been on the kidney transplant waiting list.

She has had a match during this time, but was too ill with pneumonia to attempt transplant - and knew that, because she is black, she is statistically less likely to get another match.

There are 8,780 people like Ermine waiting for new kidneys in the UK. 2,168 of these are from black and other minority ethnic groups (24.7%), but people from these groups only make up 2.9% of the donor register.

Although a donor does not have to be from the same ethnic background, they are more likely to match if they are.

New research

Now a nationwide study has been launched to find out why so few people from the ethnic communities donate organs and what can be done to increase this.

Professor Gurch Randhawa, director of the Institute for Health Research at the University of Bedfordshire, has been given a grant from the NHS Blood and Transplant service to carry out the two-year study.

Professor Gurch Randhawa
We need to find something that people are comfortable with
Professor Gurch Randhawa

He wants to see how ethnic minorities can be better targeted through cultural and faith links.

Professor Randhawa said: "We are looking to see whether we need to do something different in terms of how they are approached as regards organ donation.

"We need to find something that people are comfortable with."

He added: "We want people to talk us through which approach works - because the current approach as regards organ donation is just not working and the campaigns only have a very limited effect."

Kidney risk

Professor Randhawa said the problem was exacerbated by the fact that people from BME groups were often at high risk of kidney failure.

The fact that my sister and Dad are willing to save my life makes them the biggest heroes in the world to me - I hope that they inspire others to do the same
Ermine Hunte

"It's really important to increase the organ donation rates among black and South Asian ethnic groups, as they have a much greater chance of needing a kidney transplant than the general population," he said.

"They are more likely to develop diabetes or high blood pressure, both of which are major causes of kidney failure.

"On the kidney waiting list there are a quarter from non-white ethnic groups, yet only 3% of donors come from a non-white background so that is very worrying."

Lack of awareness

Ermine, from Luton, blames cultural differences and a lack of awareness for her own community failing to register as organ donors.

"Donors are not approached in the right way, there is not enough information and in general they do not think what they are going to do after their death.

Ermine Hunte and her father Leroy
Leroy Hunte will donate a kidney to his daughter

"I think it is an old-school train of thought that has gone through generations. Until it affects them generally they do not think about it.

"Even my mum before this happened would say 'you came into the world with all your bits; you should leave with them'.

"I read about a lady locally waiting for a bone marrow transplant and it was advertised locally.

"At the first session she and her family were virtually the only ones to turn up and it wasn't until the paper ran a second piece saying how her child was going to be motherless that people turned up."

Luckily for Ermine, who has a condition called focal and segmental glomerulosclerosis (FSGS) - scarring within the kidney - both her father and sister, Charmaine, are matches.

The hospital chose her father, 64-year-old Leroy, to be a living donor because her sister is only 23 and has not yet had children.

Ermine says her family are her heroes, but she wants to see others from her community register.

"The fact that my sister and Dad are willing to save my life makes them the biggest heroes in the world to me - I hope that they inspire others to do the same."

Desperate need

A spokesman for UK Transplant said the results of Professor Randhawa's study should provide a valuable insight for future campaigns.

"Donated organs need to be carefully matched to the recipient to ensure blood and tissue groups are compatible but there is a serious shortage of black and Asian donors coming forward.

"As a result, black and Asian people have to wait on average about twice as long as a white person for a kidney transplant.

"Some of them are likely to die while waiting because of the acute shortage of donor organs available."

Drive to find ethnic organ donors
06 Dec 07 |  Oxfordshire

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