To get enough organs donated we need to lose a little liberty… The right to opt out should remain however…

Kat Lay on September 8th in The Times reports an exceptional daughter and family: Jemima Layzell, 13, revealed as record organ donor

Jemima Layzell had not heard of organ donation until two weeks before her death. When a family friend died in a car crash, however, the 13-year-old girl decided that she wanted to become a donor should the worst happen. Then, as she helped to prepare her mother’s birthday party, she collapsed with a fatal brain aneurysm.
It has now been revealed that her decision saved or transformed eight lives, the most by a single organ donor since the NHS was founded…..

Image result for organ donation cartoon

One wonders if she read the Times on September 5th: Children die waiting for donor organ

Too many children die waiting for a donor organ, health officials have said.
Last year 470 people, including 14 aged 18 or less, died while on the transplant list or within a year of coming off the list, sometimes because they had become too ill for surgery, NHS Blood and Transplant (NHSBT) said.
Of those, 22 adults and ten children were hoping for a new heart.
The organisation urged people to take Organ Donation Week, which runs until Sunday, as an opportunity to tell their families their wishes as to being a donor.
One four-year-old girl was starting school with a new heart this week. The parents of Evie Doherty, of Colchester, praised the family of the organ donor, saying that they had made a “selfless decision at a terrible time” which had given their daughter the gift of life.

Figures from NHSBT show that 43 children under 16 years old had heart transplants last year. There were 383 heart transplants in total in 2016-17.
Anthony Clarkson, NHSBT’s associate medical director for organ donation, said: “It’s lovely to see Evie going to school thanks to an organ donor.
“Sadly, too many children still die waiting for a transplant. Please tell your family you want to donate this Organ Donation Week. A few words can make an extraordinary difference.”
As of August 25, there were 6,414 people on the transplant waiting list — of those, 36 were aged under 18. Typically, children on the list wait 463 days for a non-urgent heart transplant, and 70 days for an urgent heart transplant.

The Times leader on the same day advocates an illiberal solution: Gift of Life – There is a simple way to bring about a sharp increase in organ donation

Organ transplants are a miracle of modern medicine. Ever more sophisticated surgical techniques and immunosuppressant drugs mean that organs from donors’ bodies save hundreds of lives a year. If England made one simple adjustment to the way it administers the donation system, it could save hundreds more.
At present, to be sure their organs will be used in the event of their deaths, would-be donors must sign up to a national register or tell family members to consent on their behalf, preferably both. This opt-in system requires people to think and talk about death, which many are reluctant to do. It is one of the reasons that England languishes near the bottom of the league table of developed countries for donors per capita. Hundreds die each year for want of a new organ.
The alternative is an opt-out system in which a deceased person is presumed to consent to donation unless he or she has specified otherwise. Wales introduced such a system last year: organ donation and transplants have since risen sharply, with only 6 per cent of the adult population opting out. The Department of Health says that it is “keeping a close eye” on developments to assess the case for following the Welsh example in England. Yet the case is already clear. It is the argument for delay that is unsustainable. This is one of those rare occasions when a cost-free, commonsense solution is available to an urgent problem. The task of policymakers is to seize it.
If more data were needed as a basis for action, the NHS has provided it to mark organ donation week, which runs until Friday. Last year 457 people in England died because they could not get a transplant and 460 organs suitable for transplant were not used for lack of consent. In addition, 875 people were taken off waiting lists for transplants and many subsequently died. More than 6,400 remain on these lists as consent is refused by family members of suitable donors at the rate of three a week, not because consent was withheld by the potential donors when they were alive, but because it was not actively given.
Without that consent families often hesitate and the window of opportunity closes. “A few words now can make an extraordinary difference,” the assistant director of organ donation at NHS Blood and Transplant says. This is true, and it is well established that knowing a loved one saved or transformed others’ lives by donating his or her organs can be of enormous comfort to the grieving. Yet a change to the law would make an even bigger difference.

Spain is the European country with the longest-running opt-out system and it leads the developed world in organ donation by a wide margin. Other European countries with similar systems, including France, Belgium, Ireland and Finland, all have between 70 and 120 per cent more donors per capita than England.
Theresa May gathered senior advisers yesterday to remind them that she wants to be remembered for more than Brexit, which is proceeding on the strength of a 52 per cent majority in last year’s referendum. According to the British Medical Association, a significantly higher proportion of the public — 66 per cent — would donate their organs after their death. This is a solid basis for an opt-out system, and the government should legislate to make it happen.

The case of Jemima today was repeated in 2014 (The Telegraph): Organ donation: The family who turned their grief into the gift of life – We meet the couple who decided, in the darkest of hours, to donate their child’s organs

Image result for organ donation cartoon

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This entry was posted in A Personal View, Good News, Patient representatives, Stories in the Media on by .

About Roger Burns - retired GP

I am a retired GP and medical educator. I have supported patient participation throughout my career, and my practice, St Thomas; Surgery, has had a longstanding and active Patient Participation Group (PPG). I support the idea of Community Health Councils, although I feel they should be funded at arms length from government. I have taught GP trainees for 30 years, and been a Programme Director for GP training in Pembrokeshire 20 years. I served on the Pembrokeshire LHG and LHB for a total of 10 years. I completed an MBA in 1996, and I along with most others, never had an exit interview from any job in the NHS! I completed an MBA in 1996, and was a runner up for the Adam Smith prize for economy and efficiency in government in that year. This was owing to a suggestion (St Thomas' Mutual) that practices had incentives for saving by being allowed to buy rationed out services in the following year.

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