The new opt-in organ donation law and what it means for you

More than one person dies everyday waiting for an organ donation
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  • Following a change in the law, all adults in England will automatically be considered as potential organ donors from today.

    This means people will have to “opt-out” of organ donation, rather than “opt-in” as was previously the case.

    According to the NHS more than 3,500 people in the UK are currently waiting for a transplant. Since April 2020, only 186 people have been able to find the donor they need. And while 80 per cent of people in England support organ donation, just 38 per cent have opted in to donate.

    The Organ Donation Act – also referred to as “Max and Keira’s Law” in honour of a boy who received a heart transplant and the girl who donated it. From today (May 20), all adults in England will be considered to have agreed to be organ donors when they die (otherwise known as “deemed consent”), unless they record their decision to opt out of donating first or are in one of the excluded groups listed below.

    What you need to know about the new opt-out organ donation law

    The experts at JMP Solicitors have compiled a list of everything you need to know.

    Why has the law changed?

    Every day across the UK someone dies while waiting for a transplant. Last year, over 400 people were unable to get the transplant they needed, so the law has been changed to help save and improve more lives.

    Who is excluded from the list?

    • Children under 18
    • People who lack the mental capacity to understand the changes for a significant period before their death
    • People who have not lived in England for at least 12 months before their death
    • Visitors to England, and those not living here voluntarily

    Can children register their decision?

    Yes they can. Although under 18s will be automatically excluded under the new law, they can still register their decision to “opt in”. However, they will require their parents’ or guardians’ agreement in order for the donation to take place.

    Will my organs definitely be used ?

    Just one per cent of people die in circumstances that would allow them to donate. For those where organ donation is a possibility a senior nurse for organ donation will consult the NHS Organ Donor Register before discussing it with your family or your nominated representatives.

    I’m ok with donating all my organs; but not my eyes

    That decision is entirely up to you. But it’s important to note that the eye is never transplanted as a whole. It is the cornea – the clear outer layer at the front of the eye – that is transplanted.

    How to opt-out of organ donation

    You can register your decision to opt out of organ donation by visiting the NHS Donation Organ Register. You can also decide which organs you would specifically want to donate or not donate. You are then advised to tell your family about the decision you have made. Or you can nominate two representatives outside of your family, such as friends, if you feel that your family may not be supportive of your decision.

    If you need to talk through your options in relation to your decision you can call the dedicated helpline on 0300 303 2094. Lines are open Mon – Fri: 8am – 8pm and Sat and Sun: 8am – 4pm. There is no upper age limit to register your decision. If you choose to opt out of organ donation, you can still become a living donor donating everything from tissue to bone to part of you liver or part of a placenta (for women who have given birth). You can find more details here.

    “I was desperately sick”

    Runner Sue Bennett knows only too well how an organ donation can dramatically improve or save a life. This is her story..

    Standing on the podium, I kissed the gold medal round my neck, looked to the sky, and mouthed “thank you”. I’d worked hard to get here, but hadn’t done it alone.

    It was June 2017 and two years earlier, at 41, I’d been on the operating table, fighting for my life. I’d always been fit and healthy but after having my children – Millie, in October 2002, Billy, in March 2005, and Jack a year later – I was constantly tired. Soon I noticed more symptoms – an unbearable itch all over my body, bruises and dark urine.

    My husband Anthony, then 36, took me to the GP but he was baffled, diagnosing everything from allergies to infections. It wasn’t until 2009 that I got a diagnosis – primary biliary cirrhosis, an autoimmune liver disease. Medication could slow it down but only a transplant would save me. I hardly ever drank, how could I have a problem with my liver?

    Doctors explained the disease wasn’t connected to alcohol. But still, I was told I wasn’t ‘ill enough’ for a transplant. So, for the next six years, I had UV skin treatments and tests to monitor my liver function.

    Soon, working as a family support officer became a struggle and, finally, in December 2014, I was put on the transplant list – I knew it meant I was really sick. I wrote the kids goodbye letters in case I didn’t make it, and bought Millie a wedding gift – a little blue box holding my wedding rings. She was just 12, but I had to think about the future. Then, on 11 June 2015, I got the call – a donor liver was available.

    I was heartbroken knowing someone had died to save my life, but so grateful, too. The op was a success and I vowed I would never take my second chance at life for granted. While I recovered on the ward, I was given a leaflet about the British Transplant Games – an annual charity sporting event celebrating donor families and transplant recipients.

    “I’m going to take part,” I told Anthony, “And win a medal in my donor’s name.” All I knew was she was a woman and had died after suffering an epileptic fit.

    The next Games was in July 2016 in Liverpool. So with my doctor’s approval, in February 2016, I joined my local gym and hired a personal trainer. I was on lifelong medication and took things slowly, but soon I was training five times a week. I even switched careers, getting a job as a sales administrator, and started a personal trainer course. I applied for the Games and was accepted.

    At the opening ceremony, the atmosphere was electric. The next day I had my first event – the 3km road race – and I won silver, then silver in the 50m freestyle swim and gold in the 1,500m track. I was so proud.

    So weak, I collapsed at the finish line, and needed medical treatment. But I didn’t care. Two months later, I was selected for Team GB in the World Transplant Games in Malaga. I was officially an athlete!

    But I never lost sight of why I was still alive. It was thanks to my donor. So in September 2016 I sent a letter to my donor’s family anonymously through a coordinator at the hospital. I was so happy when I got a letter back from Sharron Jones, my donor’s mum.

    She told me her daughter Amy had been 24 when she died, and said it meant so much to hear from me. We finally met the following April. It was very emotional. I gave her my gold medal, in honour of Amy, and she gave me a book of photos, letters and stories about Amy’s life. Because of her, I’m stronger and healthier than ever.