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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

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

2015/16
2016/17
2017/18
2018/19
2019/20

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?

‘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.

%
England
%
Wales
%
Scotland
%
Northern Ireland
Percentage of Opt-in registrations on the NHS Organ Donor Register by31 March 2020 by country

Opt-Out Systems

England

In England, Max and Keira’s Law, also known as the Organ Donation (Deemed Consent) Bill 2017-19, or 'opt-out’ bill, was granted granted Royal Assent in March 2019 and became law in England on the 20th May 2020.

Wales

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

Scotland

Legislation to introduce an opt-out system of organ and tissue donation for deceased donors will come into force in Scotland in Autumn 2020.

Northern Ireland

Northern Ireland is debating the possibility of changing organ donation legislation to a ‘soft opt-out’ system. However, this proposed change to legislation has not yet been agreed or implemented.

Consent/Authorisation Rates

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.

%
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 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.

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

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.

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Liver Transplant Policy

23 Jul 2019

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

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Highest Ever Number of Organ Donors Last Year

21 Jul 2019

The annual Organ Donation and Transplantation Activity Report from NHS Blood and Transplant reports was published his month for the year 2018/19.

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Maxine Presents the Patient Perspective to Liver Transplant Nurses

12 Jul 2019

Maxine was recently invited to talk at the South West Liver Nurses study day.

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