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Organ transplants being blocked despite name being on register

There is an urgent need for more people from Hindu and Jain communities to support organ donation in the UK.
There is an urgent need for more people from Hindu and Jain communities to support organ donation in the UK.

By Sairah Masud

FAMILY members of deceased registered organ donors across England have blocked more than 100 transplants a year during the past five years – although the number is steadily declining, research has found.
Data from the NHS Blood and Transplant Service (NHSBT) showed that 505 families had blocked donations despite the deceased having signed the Organ Donor Register. It is estimated that 500 people died last year alone due to lack of suitable donors.
Aisha Nawaz, a 22-year-old student from the West Midlands, signed the Organ Donor Register but is concerned that her family may object to her decision.
“As a Muslim, there are strict rules surrounding removing your body parts once you die – you’re not allowed to ‘alter the physical body’ once the person is deceased. I think my family would go against my wishes to have my organs donated, which is why I feel the opt-out system is necessary,” she said.
“I’ve discussed the issue with them in the past and told them that as an adult they need to respect my decision – I just hope they do once the time does come.”
Current UK law states that consent lies with the individual, but in practice, the final decision is often left to the families. Several organ transplant organisations have said that having discussions with family members is vital in preventing such “overrides”.
Dr Luke Yates, from organ donation charity Live Life Give Life, said: “Whatever the scheme (opt-in or opt-out), at the heart of being an organ donor is each individual’s conversation with their family members and loved ones about their personal wishes on the subject. That conversation is just as important as the decision to become a donor.”
Simon Gillespie, chief executive at the British Heart Foundation (BHF), said: “Across the UK there is a desperate shortage of organ donors, meaning people needlessly die as they wait for organs to become available.
“Introducing a soft-opt out system in England will mean that more people will get the life-saving transplant they desperately need. The government’s commitment to a soft-opt out system is a commitment to ending the agonising pain felt by families who risk losing a loved one while they wait for a donor. This change can’t come soon enough for patients.”
However, Nigel Burton, chairman of the Donor Family Network, said that the proposed soft opt-out system could have the adverse effect of reducing the number of donors as family members still make the final decision.
“We fear that some people may be offended that their loved one’s body is being seen as owned by the state. The soft opt-out system could cause families to refuse who may previously have considered donation, thereby possibly reducing the number of donors.
“We also believe that “survivor guilt” is less likely if the recipient of an organ knows it was freely “given” and not “taken” – opt-out could accentuate the guilt. It is more acceptable to them if the NHS professionals are able to tell them that the family gave the gift freely. Clinicians are anxious that presumed consent may threaten the trust which patients have in them.”
Amar Sahota, 33, received a “life-changing” kidney transplant in 2014 after years of uncertainty of whether he would ever receive a suitable donation. “I was on dialysis for three years and every day I would think to myself – is this how I’m going to spend
the rest of my life?”
“The day I finally received the good news I was over the moon and so thankful to the person who gave me their kidney. People don’t realise how life-changing a donation can be to someone and there needs to be more out there in terms of educating and encouraging the public because most people are either too lazy or ignorant about it”.
There are currently 6,406 people on the transplant waiting list across the UK. In 2016-17 the total number of deceased donors was 1,413 and in the same year, families blocked the donations of 91 people who had signed the register.
In December 2015, Wales adopted an opt-out system of organ donation, but families can still have the final say over their loved one’s donation. Last year, nine people in Wales who had signed up to the organ donation register were blocked from donating their organs.
The DFN has also said that more campaigning is needed to allow people to openly talk about donations and reduce current refusal rates.
“It is essential that every member of the public is made aware of any legislation if this is going to work. This will mean an enormous amount of media involvement and a tremendous sum of money will need to be made available – Wales spent in the order of £4 million and the difference was not great.”
Prime minister Theresa May is set to lead a government consultation before the end of the year to look at whether there should be a reversal of current rules.