Organ donation and PSC
Everything you need to know about opt-out organ donation systems and why we support initiatives to increase the number of potential donor organs
Organ donation and PSC
PSC now accounts for 10-15% of all liver transplant activity in Europe, despite being a rare disease. However, the supply of healthy organs for transplantation currently outstrips demand, and so efforts are being made to increase consent rates for organ donation.
The UK Transplant Activity Report 2016/17, published by NHS Blood and Transplant, revealed that there were 50,300 people alive in 2017 thanks to organ transplants, of which 9,800 are liver transplant recipients 89. These milestone figures were reached thanks to record levels of public support for organ donation and improvements in survival rates.
Numbers of deceased donors in the UK
During the 2017/18 financial year, there were 1,574 deceased donors, an 11% increase on the previous year. It is the highest ever number of donors in the UK 89. In 2018/19, there were 1,600 deceased donors, an 2% increase on the previous year. It was the highest ever number of donors in the UK 91. During the 2019/20 financial year, there were 1,580 deceased donors, an 1% increase on the previous year 139.
Despite these encouraging figures, there is huge pressure on the transplant waiting list. Premature deaths from liver diseases are on the increase whereas premature deaths from other major diseases (like heart and lung disease) are on the decline 90. The UK nations are now working towards changing legislation to help increase the supply of potential organs for transplantation.
Opt Out Systems
What is a soft opt-out or presumed consent system?
A ‘soft opt-out’ system or a ‘presumed consent’ system means that people are assumed to agree to donate their organs unless they have chosen to opt out or their families strongly object at the time of death. On that basis, the wishes of families and next of kin would continue to be respected, so removal of organs would not go ahead without their support.
Scotland’s Public Health Minister Aileen Campbell said, 'We should not forget that organ donation is a gift, which can only occur as a result of tragic circumstances and every donor and their family has made a selfless decision which has enabled others to live.
'We need to continue doing what we can in order to help reduce the numbers of people in Scotland waiting for transplants. Moving to an opt-out system of organ and tissue donation will be part of the long-term culture change in attitudes to encourage people to support donation.'
As at 31 March 2020, 39% of the UK’s population has signed up on the NHS Organ Donor Register (England, Wales, Scotland and Northern Ireland were 38%, 41%, 50% and 47%, respectively 139.
Percentage of Opt-in registrations on the NHS Organ Donor Register by31 March 2020 by country
The UK Strategy ‘Taking Organ Transplantation to 2020’ set a target to increase consent rates from 57% in 2012/13 to 80% by 2020, to match the best countries in the world.
The overall consent (authorisation in Scotland) rates (combining DBD and DCD organs) for England, Wales, Scotland and Northern Ireland were 68%, 69%, 65% and 62%, respectively 139, meaning that less than 6 out of 10 families who were approached agreed to donation taking place. The most common reasons reported for why the families did not give consent/authorisation was that the person had previously expressed a wish not to donate (25%) and that the family were not sure whether their loved one would have agreed to donation (14%) 139. This demonstrates the importance of actively registering your intention to donate and of discussing your wishes with your family.
Overall consent/authorisation rates (combining both organs donated after brain death and after cardiac death) by country
When Specialist Nurses (Organ Donation) approach the family 139 the consent rate rises dramatically to 92.3%, demonstrating that the 'Taking Organ Transplantation to 2020' target consent rates can be achievable with the right resources at the right time.
What is PSC Support’s position on an opt out system?
People who have the immune-mediated disease, PSC, can progress to end stage liver disease and require a liver transplant. There is no treatment for PSC other than a liver transplant.
Unfortunately, PSC can progress unpredictably and sometimes a person with PSC can require a transplant urgently.
Any system designed to increase the number of transplants and reduce the average time on the Waiting List is strongly welcomed by PSC Support. We fully support an opt-out system for all our nations. We believe an initiative that has the potential to increase donor rates and transplants is a positive move.
Resources for transplant centres
We urge the Government to ensure that there are adequate resources (staffing and infrastructure) available to support all increases in the number of transplants that can be carried out as a result of the opt-out system. We require reassurance that any increase in transplant activity will be resourced to ensure that the capacity of the system will not be exceeded. It is important that adequate resource is planned for organ retrieval, theatre, intensive care unit, ward beds and/or surgical and nursing team capacity, particularly in centres who undertake multi-organ transplant and hence might be busier implanting a variety of organs.
There is a challenge ahead for funders of healthcare to plan ahead to manage the expected increase in transplant operations.
Of equal importance is public awareness and education on what an opt out system would mean and how it would work. PSC Support believes this is vital in ensuring the transition to an opt out system goes smoothly and that people feel well informed to make their organ donation decision. We encourage the PSC community to promote conversations organ donation.
The latest Organ Donation and Transplantation Activity Report can be viewed on the NHSBT Organ Donation and Transplant website.
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