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Wednesday, 01 October 2014

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Transplant patients want more donors

A DEBATE is raging over whether the UK should change the way organs are donated. Following calls for a system of presumed consent to be adopted, EMMA PRESTON spoke to transplant patients about their experiences

THIS summer, Ross Saunders will travel to Australia with his new wife – spending eight weeks honeymooning on the other side of the world.

And while Mr Saunders is nervous about the trip, this is not just pre-wedding jitters.

The holiday marks the longest time the 32-year-old, of Ulverston, has ever been able to leave the British medical system.

Mr Saunders, who marries fiancee, May Davies, in July, had a kidney transplant in August 2000, after suffering kidney failure aged 19.

He said: “I never would have been able to do anything like this before the transplant. I couldn’t even have got through the flight time without needing medical care.”

Mr Saunders’ life has changed completely since he received a new kidney from a man who died in an car accident on the south coast.

He has been running his own business, Ulverston’s Ristorante Rossini, since September 2006, and says he loves life as his own boss.

It is a far cry from the man who spent 15 months having dialysis every other day.

Mr Saunders’ experience has left him with “strong opinions” on the way people in the UK donate their organs. At the moment, people must choose to join the organ donation register.

But many feel an “opt out” system, where people are automatically placed on the register unless they ask not to be, would be better.

Mr Saunders said: “There’s no doubt about it in my mind. The arguments for the current system are almost all flawed.

“One is that people will lose their right to feel generous – but I don’t know how that can outweigh the importance of saving a life.

“Another is that people might feel selfish if they have to opt out – but again, are feelings more important than a life?

“Regarding the fact that my organ came from someone who made an active choice, I am extremely grateful to that person, but I would also be grateful if it came from someone under presumed consent.”

Only 29 per cent of people in the UK are on the organ donor register, while 1,000 patients every year – three a day – die waiting for a transplant.

These statistics have led many charities and medical bodies to call for urgent action to improve transplant rates.

Supporters of a change to the system include the British Medical Association, the British Heart Foundation and Transplant Sport UK.

Lorraine Corrance had a double lung transplant at Manchester’s Wythenshawe Hospital in March 2010.

The mum-of-two was born with pneumonia in her lungs, lived with emphysema for 14 years, and had bronchiectasis.

Since her transplant, she has gone from being weak, often too tired to talk and using a mobility scooter to get around, to being like every other mum, keeping up with her teenage children.

Miss Corrance, of Marsh Street, Barrow, said: “I can’t believe that two years ago I was the way I was, and now I feel like I was never ill.”

On the opt out debate, she added: “I think every newborn child should automatically go on to the register.

“I think, especially where children are concerned, it’s very difficult for anyone who’s just lost someone to have to face questions about organ donation. Whereas, if a parent knew their child was on that register, it wouldn’t be a question they had to face.

“If people have strong opposition, then of course they should opt out, but I definitely think it should be done that way round.”

There are more than 10,000 people on the UK’s organ transplant waiting list.

Lucy Anne Mulroy was one of those lucky enough to have another option.

Miss Mulroy, of Granville Street, Barrow, had a kidney transplant in March 2006, after being diagnosed with autoimmune disease, Goodpasture’s Syndrome.

She was put on the waiting list, but found her sister, Nicola, was a perfect match for her.

The 29-year-old, who was on dialysis throughout her pregnancy with son, Ethan, now seven, says the transplant allowed her to become the mum she wanted to be to him and his brother, Harry, two.

Miss Mulroy said: “For the first year of Ethan’s life I was in and out of hospital, trying to get better.

“I missed that part of his life, because I couldn’t run around like you would with a one-year-old.

“The transplant was a new lease of life.”

But, Miss Mulroy points out, there are practicalities to the opt-out system which need to be considered.

She said: “Quite a lot of countries have the opt out system, and the transplant rates are far higher than the UK, so I do think it’s a really good idea.

“But you would need to have more intensive care beds for use while finding recipients for the greater number of organs available, you would need more nurses and doctors to do the operations, and more support workers for families on both sides.”

There are a number of arguments against an opt-out system.

Some say presumed consent would damage trust in doctors, with families of seriously ill patients feeling they are going to be “harvested” for organs.

Others argue they would not want their organs used to save the lives of, say, violent criminals.

Ron Turner, 63, had a kidney transplant, from an anonymous donor, in 2009. He fears a change in system might have a psychological effect on transplant recipients.

He said: “The drawback for me personally, is that the organ received could be perceived as being taken, rather than given.

“I think, under the current system, because it has effectively been given, it’s been made a gift of.

“I think that gives you an added sense of responsibility to take care of your transplant.”

But, Mr Turner said, he is not against the opt out system.

He said: “I can see both sides of the argument, I’m probably 50/50 at the moment.

“It’s all very well for me speaking, because I’ve benefited already, but I might well see things differently if I hadn’t.

“It would be difficult to argue to someone who’s spent a long time on dialysis that organs shouldn’t be made more freely available.”

Until any change is made to the system, all the transplant recipients say they would urge everyone to sign up to the donation register.

Miss Mulroy said: “It only takes a few minutes – my family all did it when they realised the consequences it could have.”

Miss Corrance said: “At the end of the day, it really does give someone a brand new life.

“You’re not making them feel better, it’s not giving them a course of antibiotics and curing them, you’re giving them a life they would never have otherwise.”

To join the organ donor register visit www.organdonation.nhs.uk.

To sign a petition lobbying the government in favour of the “opt out” system, visit www.epetitions.direct.gov.uk/petitions/2044.

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