296 people donate organs in first year of new consent law

By Kate Whannel
BBC News

Published
Image source, Simran Sahajpal
Image caption,
Simran campaigned for the law change after years of kidney dialysis

In the last year, the organs of 296 people have been donated under a new law which makes all adults in England potential donors unless they opt out.

This accounts for 29% of all donors (1,021) since 20 May 2020 and resulted in a total of 714 organs being transplanted.

Max and Keira's Law has been in force in England for 12 months.

The 'opt-out' system has been in place in Wales since 2015 and in Scotland since March this year.

Under the law in England, people are presumed to have consented to their organs being donated after their death unless they had opted-out, although relatives are consulted and can still block organ donations.

A number of groups are not covered by the opt-out rule including those who lack the mental capacity to understand the new arrangements and people who have lived in England for under 12 months.

The legislation was named after Max Johnson, a boy who received a heart transplant and Keira Ball, the girl who donated it.

Maggie's story

Image source, Lizzie Durning
Image caption,
Maggie's family say organ donation fitted her "generous nature"

Maggie Sturgess was driving her partner to a hospital appointment when she suffered a sudden, fatal brain haemorrhage.

The pub landlady from Buckinghamshire had not signed up as an organ donor, but under the new rule her kidneys and liver were donated to others, saving three lives.

Maggie's daughter Lizzie Durning said: "Mum was known for her zest for life and generous nature. She lived for the moment and never wanted to talk about death as she felt she was 'too young for that'.

"As a family it was difficult to suddenly find ourselves having to make that decision as well as cope with her death.

"Ultimately we decided that organ donation was the right decision. It fitted with mum's generous nature and we have known people waiting for transplant.

"Our Christmas was never going to be good, but it felt right if we could make someone else's just that bit better."

The law came into force on 20 May 2020 and the latest figures show that up to 30 April, 296 people were considered to be willing to donate, despite not having expressed an organ donation decision during their lifetime.

The NHS says that before the law change, 80% of the public said they supported the practice in principle, but only 38% of people had formally opted into organ donation, with the majority saying they simply hadn't got round to registering as a donor.

Since April 2016, 2,433 people across the UK have died while waiting for a donation.

Coronavirus has hit the number of transplants as patients who tested positive for the virus cannot donate.

The risk of proceeding with a transplant is also greater as recipients must be heavily immunosuppressed meaning an increased chance of catching coronavirus.

Recipients must take immunosuppressive drugs for the rest of their lives to keep the immune system from attacking the transplanted organs.

Simran's story

Image source, Simran Sahajpal
Image caption,
"I began to think that my transplant call would never come"

Simran - who was diagnosed with chronic kidney disease at the age of 13 - had been one of those campaigning for the law change.

For five years she had been on the waiting list for a kidney transplant but never once received a single potential call.

"I began to think that my transplant call would never come," she says.

"From March 2018 I was reliant on daily dialysis, which lasted for 10 hours every night.

"The dialysis meant I couldn't sleep on my side and some nights the pain was so bad it would wake me up.

"Waiting for a transplant also means I wasn't really able to go abroad for a holiday, in case a kidney became available.

"Being from an Indian background, I was told early on that I could end up waiting longer for my transplant.

"When I finally got my call last September, I honestly couldn't believe it, I was in shock.

"The news only really sunk in when I returned home after the operation and saw my dialysis machine had been replaced by a bedside table - I burst into tears.

"While recovery took some time, it was just wonderful to finally be free of daily dialysis and I have even been well enough to start university.

"I used to feel tired all the time and felt like I couldn't stay out of my house for long.

"I worried I would miss out on having a university experience - now I'm hoping to be able to move into halls of residence.

"I am just so grateful to the donor and their family who said yes and made all this possible."

John Forsythe, medical director at NHS Blood and Transplant praised the "strength" of families whose relatives donated organs after their death, adding: "Many have told us how organ donation offered comfort in an otherwise tragic situation."

Fiona Loud, policy director at Kidney Care UK said: "Simran's experience is sadly not unique - many people, particularly those from South Asian Communities, are waiting longer for a suitable kidney.

"Yet Max and Keira's Law offers so much hope to those who are still waiting, in need of a kidney transplant.

"This encouraging news gives the hope and optimism that so many people need to keep them going," she said.

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