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Organ donation and PSC

Organ donation and PSC

Excluding alcohol-related liver disease and liver cancer, PSC is the most common indication for registration for a liver transplant in the UK141, despite being a rare disease. PSC now accounts for 10-15% of all liver transplant activity in Europe. 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 2020/21, published by NHS Blood and Transplant, revealed that 9,050 liver transplants were carrried out in the UK in the last ten years. The system was overhauled on 20th March 2008, with the introduction of the National Liver Offering Scheme (NLOS) for offering livers from donors after brain death (DBD).

Number of transplants carried out in ten years to 2021
Source: Annual Report on Liver Transplantation, 2020/21, NHS Blood and Transplant

The number of liver transplants using deceased donors decreased in 2020/2021 compared with 2019/2020 for both donors after brain death (DBD) and donors after circulatory death (DCD). This was potentially due to the impact of COVID-19.

Opt-Out Systems

What is a soft opt-out or presumed consent system?

‘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.'

Wales

Wales introduced legislation for a soft opt-out system for organ donation in 2015.

England

England introduced legislation for a soft opt-out system for organ donation in 2020.

Scotland

Scotland introduced legislation for a soft opt-out system for organ donation in 2021.

N. Ireland

Northern Ireland is debating the possibility of changing organ donation legislation to a ‘soft opt-out’ system.

As at 31 March 2021, 40% of the UK’s population has signed up on the NHS Organ Donor Register (England, Wales, Scotland and Northern Ireland were 38%, 42%, 51% and 49%, respectively 142.

%
England
%
Wales
%
Scotland
%
Northern Ireland
Percentage of Opt-in registrations on the NHS Organ Donor Register by31 March 2020 by country (Isle of Man 17%, Channel Islans 17%)

Consenting to donation

The overall consent/authorisation rates (combining DBD and DCD organs) for England, Wales, Scotland and Northern Ireland were 68%, 69%, 73% and 79%, respectively142. Scotland and Northern Ireland saw a noticable increase in consent rates compared to last year (65% and 62% respectively) 139. 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 (32%) and that the family were not sure whether their loved one would have agreed to donation (10%) 142. This demonstrates the importance of actively registering your intention to donate and of discussing your wishes with your family.

2019/20

%
England
%
Wales
%
Scotland
%
Northern Ireland

2020/21

%
England
%
Wales
%
Scotland
%
Northern Ireland
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 142 the consent rate rises dramatically to 93%.

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.

Public awareness

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.

Our Organ Donation News

NHSBT and BTS Organ Transplantation Patient Information Website

08 Apr 2021

NHS Blood & Transplant, in partnership with the British
Transplantation Society, have launched a new patient information website for organ transplantation.

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Organ Donation Law in Scotland Changes

26 Mar 2021

Scotland is moving to an opt-out system for organ and tissue donation from 26 March.

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Organ Donation Week 2020

07 Sep 2020

Make your organ donation decision and encourage others to do the same this Organ Donation Week.

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Organ Donation and Transplantation Report Published

21 Jul 2020

The latest organ donation and transplant activity report published today

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Organ Donation Law Changes Today in England

20 May 2020

Max and Keira’s Law – the Organ Donation (Deemed Consent) Act, has come into effect today, 20 May 2020

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Transplant and Organ Donation Update

30 Apr 2020

Update on organ donation and transplant activity

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My Life, My Heart Documentary

18 Feb 2020

CBBC have produced a documentary called My Life, My Heart, which follows the story of Jack, now aged 13, while he waited for and eventually received a heart transplant.

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Organ Donation Law is Changing. Pass It On.

10 Jan 2020

In the lead up to the change in law, NHS Blood and Transplant is urging families across England to talk about their organ donation decision, with the campaign message ‘Pass it on’.

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NHS Organ Donor Register Reaches 25-Year Milestone

25 Oct 2019

As NHS Organ Donor Register reaches its 25th anniversary, there are now nearly 25 million people on the NHS Organ Donor Register and more than 20,000 lives have potentially been saved or transformed thanks to its introduction.

Read More

Liver Transplant Policy

23 Jul 2019

Ensuring equitable access to donor organs for people on the liver transplant waiting list.

Read More

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