Theresa May's 'Momentous' Opt-Out Law Fails to Save Enough Lives

Theresa May called it a "momentous step" intended to save thousands of lives. In 2019, the Prime Minister signed a radical new law that made everyone in Britain an organ donor by default unless they chose to opt out. The goal was simple: boost the supply of organs for transplants in the UK where shortages were already biting hard. Back then, more than 6,000 patients waited for a transplant and 411 died on those lists. Officials hoped waiting times would shrink and deaths would stop. May even claimed the change could save as many as 700 lives every year. The legislation became known as Max and Keira's law, named after two children who turned nine in the same year. Max Johnson received a heart in 2017 from Keira Ball, who had died in a car crash while they were both kids. They went on to become fierce campaigners for organ donation together.

Seven years later, the reality is starkly different. The Organ Donation (Deemed Consent) Act 2019 has not met its lofty hopes. Just last week, the NHS issued an urgent shortage warning, the very first in its history, regarding available organs. Today, 8,700 patients are waiting for a transplant. Last year alone, more than 430 people died on the waiting list. Over the past twelve months, the number of organ donors has dropped by nearly one tenth. Experts cite several reasons for this decline, but there is agreement on one point: the opt-out system has failed.

Whistleblowers inside the NHS have spoken to about a dozen insiders who describe chaos on hospital wards. Families are left in distress while efforts to raise donor numbers take a hit. Concerns over the safety of the scheme were raised when the law was first proposed, yet the Government ignored them. The system now relies heavily on kidneys, which make up roughly 3,200 of the approximately 4,600 organ transplants performed annually in the UK. This heavy reliance exists because more than seven million Britons suffer from chronic kidney disease where their blood-cleaning organs slowly shut down. Consequently, the majority of deaths on waiting lists occur among those needing a kidney transplant. Liver transplants follow as the next most common, with hearts and lungs trailing behind.

Whatever organ is required, there simply are not enough donors in Britain. Of the 600,000 people who die each year, very few are able to donate their organs even when they want to. Organs can only be given under two specific scenarios. The first involves patients who are alive but brain dead, perhaps after a traumatic head injury. The second case is when someone is on life support and will not survive, such as a patient with an irreversible brain bleed.

Five-year-old Harrison lives with Alagille syndrome. His liver is failing. He waits eighteen months for a transplant. Medics explain why the pool of donors shrinks so fast. Doctors must verify that organs are healthy enough to save another life. Someone battling cancer often lacks strong internal health, making their organs risky for a recipient. This strict safety filter means only about 7,000 eligible donors appear each year.

The rules have changed recently. Long ago, anyone wanting to donate had to sign up and hold a donor card in their wallet or purse. Experts said this step was crucial. Even after a person signed up, family members still held the final say on whether doctors could take the organs. Studies show that when someone is on the register, families honor those wishes ninety per cent of the time.

At the moment of the law change, roughly forty per cent of people were registered as donors. The government wanted to boost these numbers. They believed organ donation was widely supported in the UK but many folks simply forgot to sign up. By shifting to an opt-out system, officials reasoned that only those with strong objections, perhaps for religious reasons, would speak up against it.

'We knew there was widespread support for organ donation in the population,' says John Richardson. He is a former transplant nurse and now serves as assistant director of organ donation at the NHS. 'We hoped that the change would lead to an increase in the number of donations.' Similar systems exist in Spain, France, and Norway. The UK also tested this idea in Wales for years before rolling it out nationally.

There was one key caveat attached to the new rules. Like the old opt-in system, the opt-out scheme is non-binding. If doctors wish to harvest organs, they must still ask the family. The family can say no instantly. 'No one wanted a situation where the NHS was taking organs from patients in the middle of the night without the consent of their family,' says Dr Zubir Ahmed. He is a Labour MP and transplant surgeon who once served as health minister. Doctors needed explicit permission from relatives to proceed.

However, the result was not easier access to organs. The opt-out scheme has actually made it harder to get consent for donation. 'Under the previous scheme, there was clarity on what the patient wanted because they had signed up to the register,' says Fiona Loud. She is policy director for Kidney Care UK. 'But if families don't know what their loved-one thought of organ donation, then they are more likely to say no, just in case.'

This hesitation has slowed down the process significantly. The Mail spoke with NHS insiders who described chaos on hospital wards. This turmoil ultimately hurts efforts to raise donor numbers. A lack of awareness about the new rules leads to fraught, intense conversations with grieving families. 'These are people who are dealing with the loss of a family member,' says Mr Richardson. When a patient opted in, nurses could show the room that their loved one wanted to give. In that situation, approval was almost always likely.

But if there is nothing on the register, the nurse must explain the new legislation right then and there. They have to say that since the patient did not opt out, they are assuming no opposition to donation. This puts families under pressure during their darkest hour. It forces them to guess what a dying person might have wanted versus what law dictates.

That is a really difficult conversation to have.' Medics warn that families often decline donation under the new scheme because they simply want to leave the hospital. Becky Gorf, a specialist organ donation nurse based in Watford, explains this pressure clearly. She notes these families might have already endured four or five days inside a ward. For them, it is the worst day of their lives without question. Then someone asks for yet another big decision on top of everything else. If they do not know what their loved one would have wanted, then the easiest answer is no. This response is entirely understandable given the circumstances.

NHS figures reveal a serious flaw in the opt-out scheme that cannot be ignored. When no explicit decision has previously been made by the potential organ donor – which happens often under the current system – family consent drops sharply from 90 per cent down to just 50 per cent. One of those affected by this fall in available donors is five-year-old Harrison Sinclair, who has been waiting eighteen months for a new liver. Harrison suffers from Alagille syndrome, a rare genetic disorder that damages the liver and other vital organs. He has already undergone open heart surgery due to his condition and now needs a new liver because his own is failing fast.

His mother Kirsty, forty years old and a pharmacy worker from Staffordshire, says Harrison's health is getting worse by the day. 'Everything is deteriorating,' she states flatly. 'His skin has turned yellow and itches all the time. He scratches until he bleeds and cries.' Kirsty believes that if it were not for the drop in available donors, Harrison would likely have received a new liver by now. She has launched a petition calling on the Government to stop families from blocking organ donation. 'I couldn't believe it when I learned that there is a shortage because the next of kin can object,' she says. It feels crazy to her. You do not need your organs after you die – they will just be burned or buried in the end. Why not give them to someone else so they can live?

Experts believe one reason the opt-out scheme failed lies in its timing alone. The change launched in March 2020, the same month Britain entered its first lockdown of the Covid pandemic. Insiders say the Government had planned a major marketing campaign to raise awareness of the change but scrapped it when the pandemic hit hard. 'It should have been this big national conversation about the importance of donation and saving lives,' says Dr Ahmed. Instead, everyone was rightfully thinking about the once-in-a-generation pandemic at that time. The change got lost in the noise and never quite took off as intended. Transplant nurse Becky Gorf agrees with this assessment entirely. She remembers going around her hospital putting up posters explaining the law change right away. The aim was for as many people as possible to know this was the new law so it would not surprise them later on.

Looking back, it could not have happened at a worse time." Yet other experts insist the opt-out system was always shaky from the start. A 2018 study from Queen Mary University of London found consent rates dropped in nations using this method. The silence around a deceased person's wishes often confuses families. When uncertainty strikes, relatives refuse to give permission for donation. The Government pushed forward regardless. An NHS spokesman told The Mail on Sunday the plan was never meant to be a silver bullet. It could not solve the donor shortage alone. Health service chiefs list other causes for the decline too. Fewer traumatic head injuries mean fewer brain-dead patients available today. An ageing population also leaves behind fewer healthy donors. Still, the NHS takes an extraordinary step nearly seven years later. They ask the public to sign up as organ donors again. The register remains open and officials hope it stops families from blocking requests. But experts say other actions could boost numbers even more than fixing this law change. Dr Ahmed points out that regions handle donations instead of the country acting as one whole unit. "This means a patient who needs a kidney in Newcastle cannot travel to Glasgow to get it," he says. Organs go to waste right now. It is unacceptable, he claims. We need a joined up system immediately. The opt-out scheme failed not just by chance but because of deep structural flaws built into it. We must fix those problems before we do anything else.