LONDON LETTER:Organ donation rules are to change in Wales to increase the number of transplant operations
LAST MONTH 22-year-old Kerrianne Phillips, waiting for a liver transplant, was shown to TV viewers in Wales sitting in a prison cell dubbed “Wales’s Invisible Death Row” in an advert promoted by a lobby group demanding changes to organ donation rules.
“More and more people like me die every year waiting for a transplant. My liver weighs two stone now. I manage my pain with morphine 24 hours a day. If I don’t get a new liver, I will die,” Phillips said.
Now the Welsh assembly government has become the first United Kingdom administration to back new rules that will mean that doctors will seek to take organs from deceased patients unless they have issued specific instructions that they should not be removed, or unless families object.
Under restrictions created when devolution was first brought in, but which have not so far been tested, the Welsh assembly must first get permission for this from the Conservative/Liberal Democrat government in London.
Welsh first minister Carwyn Jones, who strongly supported the change during years of negotiation, said: “I hope that by introducing presumed consent, we will not only reduce the waiting list but reduce the number of people who needlessly die waiting.”
Similar systems have been introduced in Spain, Belgium, Sweden, Denmark, Finland, France, Italy and Norway, increasing the availability of organs and saving thousands of lives each year.
Belgium brought in “presumed consent” in 1986 and the national organ donation rate rose by 55 per cent within five years, while just 2 per cent of Belgians excluded themselves from the donor register by signing themselves off it at their local town halls.
Spain, which now has 35 donors per each million of its population every year, is the only country in the European Union to have a year-on-year increase in organ donations in the last decade. In the UK, just 12 people in every million donate organs.
The British Medical Journalreported recently that an additional 2,880 people would have donated organs in the UK if the system to be introduced in Wales was made mandatory in England, Scotland, Wales and Northern Ireland.
One-quarter of the British population – 16 million people – has signed up for the organ donor register.
It has taken 15 years and numerous campaigns to get the figure to that level, even though 90 per cent of people say they would like to save others after their death. Ten thousand people are on organ donation waiting lists throughout the UK, but three die every day because they are not saved in time. An ageing population and increasing numbers of type 2 diabetes cases means the list is getting longer by the day.
In Wales, more than 300 people are on such waiting lists. Of these, 150 will be lucky enough every year to benefit from a donation, but one person dies there every 11 days because of the lack of organs.
So far, there are no plans for England, Scotland or Northern Ireland to copy the Welsh example, though the Royal College of Physicians launched a campaign last year urging that people should be required by law to state whether they wanted to donate.
In 2008 a government advisory committee, the UK Organ Donation Taskforce, decided against the Welsh model, arguing that there was little evidence that a move to presumed consent would increase the flow of organs. Instead, it argued that more money should be spent on promoting the organ donor register and that health departments across the UK should agree on annual targets to increase the numbers signing up for it.
However, Roy J Thomas, the chairman of Kidney Wales, said presumed consent would be a hugely significant step forward, without requiring major changes in practices in hospitals, since doctors would still have to talk to the deceased’s family.
“At the moment, if people are not carrying donor cards then it is presumed they didn’t want to be a donor. We don’t want to be in a position where we are taking organs against the wishes of the family, there is no question of that,” he said.
For Kerrianne Phillips, the change in the law cannot come quickly enough.
Nurses have encouraged her to write letters for her loved ones in case she dies, but she has managed to complete just two of them.
“It’s almost like writing a suicide letter when you don’t want to die,” said the 22-year-old, who was diagnosed with liver tumours when she was just 3½ months old and who has spent much of her life since in one hospital after another for months at a time.
“Every day I’m thinking about the transplant and every day there’s something different. Some days it will be worrying about whether I’m going to wake up from the operation or if I’m going to get it in time.
“On other days, it’s how I’m going to cope with a new life, being able to get a job or go on holiday, doing normal things.”
