Organ donation law is about to change – but we still need to make our wishes known to our families. MAXINE GORDON speaks to two York women about their transplant experiences

THEY were the most emotional words of the week: "To be honest I was ready to die – I didn't think I would make it. I hugged Mum and Dad thinking this was the last hug with my parents".

So spoke Max Johnson, the 11-year-old heart transplant recipient whose campaign to change organ donation law has finally succeeded.

Last week, parliament cleared the way for a new opt-out system to come into effect next April. It will be known as Max and Keira's law after Max and his donor Keira Ball, who died in a car accident aged nine.

The new law will mean consent to organ donation will be presumed unless people have opted out. Currently, there is a voluntary opt-in scheme, but only 37 per cent of adults have done so despite surveys revealing 80 per cent of adults in England say they would donate or consider donating their organs.

Some 6,000 people are on the transplant waiting list in the UK and last year 411 patients died while waiting for a suitable organ.

The government believe switching from an opt-in to an opt-out donor scheme could save up to 700 lives a year.

However, people will still need to share their wishes with their families because relatives will retain the right to block a donation.

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RECOVERING: Claire Davies recuperating in hospital following a heart transplant in 2009

This is a crucial aspect of the new law says York writer Claire Davies who had a heart transplant ten years ago after living with an inherited disabling heart condition.

Claire, 43, cautiously welcomes the law change, but says it is vital we still talk to each other about our wishes and that people who decide to opt out of organ donation are able to do so easily and not made to feel guilty.

Claire, who runs her own copywriting business, The Greedy Wordsmith, said: "I think this law will do good things in the long run, but I don't want families to feel the pressure if it is not right for them."

She said: "I am very much in favour of families having the final say; they are the ones left behind who have to live with this decision.

"I'd hate the idea of receiving an organ and somebody was not happy with that decision but powerless to do anything about it.

"I know my donor family actively engaged in the decision-making process."

Claire has not had contact with the donor's family but knows they will have received a letter telling them how many lives their gift helped.

For Claire, the new heart has allowed her to be physically well and active for the first time in her adult life. Ten years ago, she was using a mobility scooter outside and walking with a stick.

She said: "For the majority of my adult life I as unwell.

"I had heart failure from the age of 14 to 34.

"I am very aware of the of the gift I have been given.

"The best thing I can do is to honour my donor by staying well.

"I now run my own business, am out meeting people and doing lots of exciting things. In 2012, I ran the Jane Tomlinson 10K; I swim and go walking. Just before my transplant I struggled to get up the stairs and get into bed."

She added that if the law change was to lead to more transplants then extra resources would be needed for the NHS, particularly to train and fund enough transplant coordinators who support families through the donation process.

Sue Nelson, 62, of York, knows what it is like to go through the process of giving consent for a loved one's organs to be used for transplant.

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MEMORIES: Sue Nelson with her sister Louise

Her sister Louise died aged 38 from a brain haemorrhage 15 years ago. Louise had a donor card, so Sue and their mother Dorothy knew her wishes.

That gift helped many people: the corneas from each of her eyes were used to help restore the sight of two men living in the north of England; some of her bone was used by a hospital in Bradford to help a road accident victim with smashed-up limbs walk again; more bone and tendons were donated to other patients, and her skin went to medical science, to be used in skin research that would help develop new skin-growing techniques for burns victims.

Sue said: "It has given us enormous comfort. Even now, 15 years on, it still fills me with hope and a nice feeling that she managed to do something for these other people."

And Sue praised young Max Johnson for his campaign to get the law changed to an opt-out system, which Sue said was "long overdue".

She said: "His message is phenomenal. We know there are people in York who have had heart transplants and remain eternally grateful."

Sue remains full of praise for the transplant coordinator who worked with her family following Louise's death.

She said: "The person we had through the donor service went through everything with us and was very kind."

She said families would still have to give consent, and if they did not, she did not believe they would be criticised. "If you decide no, it's just too much to ask, you are not going to be looked down on.

"But I would encourage everybody to give that gift if you possibly can in such circumstances because it gives the most amazing comfort."

Whether you want to opt in, or out, you can do so via the NHS Organ Donor Register, online at:, or by telephone: 0300 123 23 23.