How bereaved families are left feeling ambushed after death of loved ones following organ donation law change – and as a result transplants are FALLING

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Written By Rivera Claudia

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It was a landmark change in the law, designed to revolutionise organ transplants and slash long waiting lists for seriously ill patients needing life‑saving surgery.

Rolled out in May 2020, the new rules in England mean everyone is automatically presumed to be a willing organ donor when they die unless they actively ‘opt out’ – replacing the previous system where only those who signed up to the Organ Donor Register could donate.

Officials claimed it could increase the number of donors and organs available, leading to 100 extra donors and 230 more transplants every year, and ensuring fewer people died on the waiting list.

But today, nearly four years later, those benefits have still failed to materialise.

The number of organ transplants has, in fact, fallen since the new rules were introduced – and the number of patients dying on the transplant list or being taken off it because they are too sick for surgery has remained static.

Many point to the impact of Covid for this lacklustre response. An £18 million Government campaign to raise awareness of the change was lost amid the Covid public health messaging, while transplant teams were diverted to work on the front line.

Jet Budge, 30, who has cystic fibrosis, needs a double lung transplant. Pictured with her son Phoenix, nine

But it has now been more than two years since the last significant waves of Covid engulfed the NHS.

And the latest figures from NHS Blood and Transplant make for troubling reading. They reveal 3,781 transplants were carried out in England in 2022/23 compared with 4,057 in 2019/20 – a nine per cent drop.

There were ten per cent fewer deceased donors overall, falling from 1,345 in the year before the pandemic to 1,204 last year.

And the number of living donors – people who give up a kidney or part of their liver to someone in need – has also fallen 11 per cent over the same period. Meanwhile, the waiting list for an organ stands at 6,218 – 28 per cent higher than before the change.

Labour peer Lord (Philip) Hunt, who steered the legislation through the House of Lords, told The Mail on Sunday: ‘I had great hopes we would see a real upturn in the number of donations, but the reality is we haven’t seen any strong evidence of significant change. It’s very frustrating.

‘I don’t think the leadership of NHS Blood and Transplant (NHSBT) applied itself sufficiently to driving this forward.

‘If we could get the donation rate up, we could do so much good to save the lives of people who are desperately unwell.’

So if Covid is no longer an excuse, why is there still little improvement? There are various studies which suggest a switch to ‘opt out’ has failed to increase the supply of organs in countries around the world, such as France, Chile, Brazil and Colombia. Research was patchy, with mixed results, before the UK scheme was implemented. But since then several reviews – and accumulating evidence from newly introduced policies – have concluded such changes on their own aren’t successful.

Key to this is the involvement of families. Most ‘opt out’ countries – including the UK – still give families the final say, which means they can oppose their loved one’s organs being used.

Conversations about organ donation take place with relatives if death is inevitable – for example, a patient is on life support but they have been declared brain-dead. Families will be told, usually by specially trained transplant nurses, that their loved one’s organs are suitable for donation. However, if the family objects, then the donation won’t happen.

And this is the stumbling block. When people just had to sign up to the Organ Donor Register to show their support, families generally didn’t oppose their wishes.

But studies show that under the new rules, which mean people who may never have expressed a view on donation are being considered as donors, consent from families is dropping.

In England, only 61 per cent of families allowed their relative’s organs to be used last year – compared to 65 per cent in 2017 – far below the 80 per cent that some predicted might be achieved when the law changed.

Wales, which has had opt out for nine years, was lauded as a success, when in 2018, it reached a peak of 78 per cent of families consenting to donation.

However, consent in Wales has also now fallen to 61 per cent.

In the UK, families from a poorer socio-economic background and those from black and ethnic minority groups are more likely to object, NHSBT data shows.

Just 39 per cent of Asian and black families allowed their loved one’s organs to be donated in England last year, even though these communities are disproportionately represented on the transplant waiting list.

They also wait longer than white people for an appropriate organ because, for a match to be successful, blood and tissue types need to match – so suitable donors are more likely to come from the same ethnic background (see panel, below left).

Professor Hugh Perry, a neurologist at the University of Southampton and former member of the Nuffield Council on Bioethics, which has discussed ways of increasing donation, said: ‘There’s a growing body of evidence that, while many people thought opt out would make a big difference, it turns out this was not at all the case. If you leave the family to be consulted, the changes are really trivial, because they often object.

'Anyone with cystic fibrosis knows that transplant might have to be an option one day, so to face a worsening situation where we might wait longer or die on the transplant list is frustrating and upsetting,' Jet says.

 ‘Anyone with cystic fibrosis knows that transplant might have to be an option one day, so to face a worsening situation where we might wait longer or die on the transplant list is frustrating and upsetting,’ Jet says.

‘The failure of education is the most important issue here. Many families can’t deal with the conversation at the bedside, and others object to the idea that the Government now ‘owns’ their family member’s body. People also say their religion doesn’t allow them.

‘If you take away the family’s input, you’d get many more donations. But Brazil tried this and it led to outrage and the policy being reversed.’

Brazil introduced a ‘hard’ opt out system in 1997 which did not allow families to authorise donations. But the public were furious, and it was ignored by doctors, who defied the rule and continued seeking consent from relatives. In the end, it was abolished within a year.

One patient desperate for a donor is Jet Budge, who has cystic fibrosis and needs a double lung transplant. But the number of lung transplants being carried out in England has fallen 34 per cent since before the pandemic.

The 30-year-old, from Cornwall, is desperate for extra time with her nine-year-old son, Phoenix.

‘Anyone with cystic fibrosis knows that transplant might have to be an option one day, so to face a worsening situation where we might wait longer or die on the transplant list is frustrating and upsetting,’ Jet says. ‘I’ve been told it could take between two and five years. I have friends who’ve been seriously ill and died because they waited too long for a transplant.

‘I don’t want to be in hospital every two weeks with infections, as I am today. I don’t want to be on antibiotics. I have a little boy I would do anything to have longer with.

‘My message to people considering becoming donors is this: you’d not only be giving me a life, you’d be giving my son his mother, and may even allow me to become a grandmother.’

Consent is not the only problem limiting the number of transplants performed. Transplant units have ongoing capacity issues, and can struggle to access theatre space to perform operations when an organ becomes available.

Experts say there is also an urgent need to recruit extra staff specialising in organ donation – such as nurses who are trained to have the difficult conversations about donation with families.

Research shows the most successful opt out systems – such as in Spain, which has one of the world’s highest transplant rates – implemented measures like these, which included investing in transplant services and family counselling. Even then, its success took ten years to build up, reports suggest.

Fiona Loud, at Kidney Care UK, says the charity was highly supportive of the 2020 opt out change, and still backs the move. ‘But what we said at the time was that the legal change needed to be accompanied by appropriate NHS structures, facilities and resources and also continuing education of the public and NHS staff,’ she says. ‘Not enough of this has been done.’

Other charities have called on the NHS to do more to increase the number of transplants.

David Ramsden, chief executive of Cystic Fibrosis Trust, said: ‘People still die waiting for a transplant and more needs to be done to ensure that this stops being the case.’

The Government has acknowledged these issues, and in February 2023 announced it would take forward recommendations from a taskforce set up to review organ donation to improve the number of transplants.

These include speeding up the transplant process and ensuring that all available organs are used. Every year, dozens of organs go to waste because they are not transplanted into patients in time or are damaged during the removal process.

A new initiative has also been introduced which asks people if they would like to explicitly state they are willing to donate their organs when they apply for a new passport.

‘People who have donated say it’s one of the most rewarding things they’ve ever done,’ says Fiona Loud. ‘And many families say that at the worst time of their lives, they get some comfort from knowing their loved one helped another person to live.

‘The opportunity to increase organ donation is ahead of us, so we need to look at every part of the pathway to make sure all opportunities can be used.’

Derek Manas, medical director for Organ and Tissue Donation and Transplantation at NHSBT, said: ‘It was always predicted that – building on experience from the law change in Wales in 2015 – it would take up to five years before we would see the full effect of the legislation in play in England.

‘But opt out legislation is not the sole answer to improving organ donation, transplant and consent rates. Rather, it’s an important piece of the whole jigsaw.

‘We continually develop our regular training programmes in consent skills for our specialist nurses and work closely with bereaved families to better understand donation decisions.’

The Department of Health and Social Care was approached for comment.

New kidney in 18 months? I’m still waiting after three years

Edmund Clottey has been waiting three years for a new kidney and is on dialysis three times a week for end-stage kidney failure.

The 50-year-old, from London, knows how important it is for black and ethnic minority communities to donate: his mother, Sierra Leonean actress Jeillo Edwards – who starred in Dixon Of Dock Green, The Bill, and Absolutely Fabulous – received a kidney transplant in 1986 while his brother had a liver transplant seven years ago.

‘Those extra years with mum until she died in 2004 were so important, and a transplant changed my brother’s life,’ he said.

‘Those extra years with mum until she died in 2004 were so important, and a transplant changed my brother’s life,’ said Edmund Clottey

‘Those extra years with mum until she died in 2004 were so important, and a transplant changed my brother’s life,’ said Edmund Clottey

‘I was told I’d only have to wait around 18 months for a kidney because of the change in the law, but I’m still waiting three years later.

‘I assume it’s because I’m black [kidneys are matched by blood group and tissue type, so for many the best match will come from a donor from the same ethnic background] and people are choosing not to donate their organs.

‘I want a normal life but I can’t work and I’m on dialysis three times a week, which is exhausting. We need more organs, especially from the black community. The problem is a lack of education, and people fearing they can’t live on one kidney.’

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