Tucked under his bed, untouched, once laid a packed duffle bag. It had become smothered in a blanket of dust, which grew thicker as each day past. It was there ready for him, for when he received ‘that call’.
The call to say they had found him a kidney. Until then, he spent every night hooked up to a dialysis machine, a machine which he needed to filter his blood.
“I don’t want to be cut up when I’m dead, even though I know I don’t need them when I’m dead.”
This was Mark Mears’ fear about organ donation four years ago. A fear which soon collapsed when he was diagnosed with polycystic kidney disease, a genetic disorder that meant he relied on getting a new kidney to survive.
Left: Mark recovering after his kidney transplant Right: Mark rebonding with his son
Mark’s health deteriorated to the point where he was unable to pick up his 18-month-old son. “At that age it was quite a big chunk of our bond that was lost,” says Mark, now a British Transplant Medallist. During recovery he wrote a letter to his donor’s family showing his gratitude and said: “I’m going to be able to be able to reconnect with my son again.”
Currently, 4,800 people are waiting on a kidney transplant in the UK and 270 of those have been waiting for more than seven years.
Last year, more than 400 people died waiting for an organ transplant.
However, a new law due to come into force on 20th May, will automatically enrol all adults as organ donors unless they choose to opt out. It’s hoped this system of ‘deemed consent’ will tackle this perennial shortage of transplants on the NHS.
The heart, liver, kidneys, lungs, pancreas, small intestines, bone, corneas, skin, and nervous tissue will all be considered for routine transplants.
Children under the age of 18 will be excluded from the scheme, along with people who have lived in England for less than a year, or have ‘lacked capacity for a significant time.’
It is estimated that the opt-out method, known as Max and Keira’s law, could see up to 700 extra transplants a year by 2023, according to the government.
However, experts, while welcoming this law, are not convinced that presumed consent will be enough to deal with England’s organ shortage.
“We need to make it a normal conversation at all stages of life”, says Dr Gill Fargher, Chair of the Organ Donation Committee at the Medway NHS Trust.
She explained, that this new system will be a “soft” opt out. Like with the current system, bereaved families will still have the final say on their deceased loved ones’ organs, and can refuse for them to be donated, even if they’re signed up to the donor register. Currently, more than three families a week say no to organ donation because they don’t know their loved ones’ wishes. That’s despite more than 80% of the population saying they would definitely donate or consider donating their organs, according to the NHS Blood and Transplant (NHSBT).
Dr Gill Fargher, Chair of the Organ Donation Committee at the Medway NHS Trust
Dr Fargher adds: “We know now that if families know the decisions of their loved ones they will consent in 90 per cent of situations. If they don’t know they will only consent in 50 per cent.
“That’s a lot of donors being lost.”
She pointed to the example of Wales, which adopted the opt-out system and has been showing encouraging results. Wales now has the highest organ consent rate of all the UK nations, having climbed from 58% in 2015 before the law changed to almost 80%.
Spain holds the highest rate of deceased organ donation in the world, which is often attributed to the ‘opt out’ system, which they adopted in 1979.
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation at NHSBT, adds: “By changing the legislation, we’re encouraging people to make a decision about whether to be a donor and have a conversation about their wishes with their family.”
For more information about the law change and organ donation or to register your decision, please visit: https://organdonation.nhs.uk/
