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Have your say on changing Organ and Tissue Donation to an 'Opt-out' System


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The UK government plans to change organ and tissue donation to an 'opt-out' system. They want to know what you think about this and how the new system will work.

They have launched a consultation, which is open until 6 March. Please visit the Department of Health website via the link below to complete the questionnaire. Be prepared to spend about 15 to 20 minutes on this. As well as general questions about you, there are 9 questions which require thoughtful answers.

Background on the organ donation system in the UK (at December 2017)

In England and Scotland, deceased organ donation is organised through a legal system of ‘opt-in’, where a person has to register their consent on the NHS Organ Donor Register (NHS ODR) to donate their organs in the event of their death. If a person dies with a suitable organ but is not on the ODR, specialist nurses in hospital ask the person’s next of kin for explicit consent to donate.

In Wales, in December 2015, the Welsh government started a new system with two forms of legal consent: ‘deemed’ or presumed consent to donate from people who have not registered to opt-out of donating an organ; and ‘express’ consent by those who have registered to say they wish to be a donor. Next of kin and families are asked if they know whether the deceased would not have consented and families may object. However, the law should take precedence. This form of consent is also called ‘soft opt-out’ and is operated across Europe. It’s believed that this system will increase the numbers of donations and transplants in Wales but at present the system is too new to draw conclusions.

In July 2017, 23.6 million people were on the NHS ODR, more than one third of the UK’s population. About 500,000 people die in the UK each year. However, only 1 in every 100 people die in circumstances where they can donate. NHS Blood and Transplant (NHSBT), who manage the ODR, discovered in 2016/17 that 177 families – 3 per week - of potential donors refused consent because “they were not sure whether the patient would have agreed".

The UK, for a number of reasons, has one of the lowest consent rates in the world. One reason seems to be that people don’t discuss organ donation with their families. NHSBT surveys show more than 8 in 10 people support organ donation but only around 1 in 2 people have ever talked about it. The deceased wishes aren’t known and families refuse to consent because they didn’t know what their relative wanted.

The low consent rate and a national shortage of organs for donation means that more people waiting for transplants than there are organs available. Some people will die therefore before a suitable organ becomes available.

The public are supportive of an opt-out system. A poll by the British Medical Association (BMA) in early 2017 found that two in three members of the public supported the BMA’s calls for the opt-out system in Wales to be extended to other parts of the UK. The government in Scotland has announced its intention to move to soft opt-out.

More information here on the Department of Health website.

Have your say in the consultation here

The PKD Charity's position

The PKD Charity supports children, adults and families affected by polycystic kidney disease (PKD), a range of incurable, systemic genetic conditions. One form of PKD (autosomal dominant PKD) is the most common inherited and fourth leading cause of kidney failure, affecting an estimated 12.5m worldwide and 70,000 people in the UK. The other form of PKD is the rare ARPKD (autosomal recessive PKD), which is often diagnosed in pregnancy.

In the UK, about 1 in 8 adults and 1 in 20 children with a kidney transplant have PKD as the primary reason for kidney failure. We also think that about 1 in 16 adults on dialysis has ADPKD - many awaiting a transplant. In March 2017, there were about 5,000 adults and 80 children on the national waiting list for a kidney. The average waiting time for an adult is 870 days and about 260 days for children. We estimate that about 500 people on this list, 1 in 10 of those waiting for a kidney transplant, has PKD.

Furthermore, adults with ADPKD (autosomal dominant PKD) may experience longer waits owing to lack of living organ donors caused by close relations also being affected by ADPKD and unable to donate.

Some children and adults with ADPKD and ARPKD will also require a liver transplant. In March 2017, 490 adults and 43 children were on the national waiting list for a liver transplant. We estimate that over 20 adults with PKD are currently waiting for a liver, with average waiting times of 1000 days and up to 2000 days. Unfortunately, adults with ADPKD have preserved liver functionality and are not prioritised for transplant. Owing to the long waiting times and low probability of receiving a transplant, it’s believed that many adult ADPKD patients are not even put forward for liver transplantation.

Additionally, those in black and minority ethnic (BAME) communities generally experience longer waiting times and lower consent rates from next of kin than in the white population. Although some are able to receive a transplant from a white donor, for many the best match will be an organ donated from someone with the same ethnic background.

The PKD Charity will be an active stakeholder in the opt-out consultation. We will provide the government with information about the economic and psycho-social burden of ADPKD and ARPKD, to help with their decision-making.

Have your say in the consultation here

If you are willing to provide a family or personal story, or help with the consultation, please get in touch.

Find out more about ADPKD and ARPKD.

Media enquiries: This email address is being protected from spambots. You need JavaScript enabled to view it.

Join the NHS ODR here.

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