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 88.

These milestone figures have been reached thanks to record levels of public support for organ donation and improvements in survival rates. 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.

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

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

The Scottish Parliament approved the general principles of the Human Tissue (Authorisation) (Scotland) Bill in February 2019, meaning the law will be amended in Scotland to follow the rule of 'presumed consent’. A further vote by MSPs supported the legislation in June 2019.

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.

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.

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 2018, 36% of the UK’s population has signed up on the NHS Organ Donor Register (England, Wales, Scotland and Northern Ireland were 37%, 40%, 46% and 43%, respectively 89,91.

Taking Organ Transplantation to 2020

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 rates (combining DBD and DCD organs) for England, Wales, Scotland and Northern Ireland were 66%, 70%, 57% and 66%, respectively 89, meaning that as many as 4 out of 10 families who were approached did not agree to donation taking place. The most common reason reported for why the families did not give consent/authorisation was that the person had previously expressed a wish not to donate 89. Overall, this reason was reported in 22% of cases.

Interestingly referral rates increased dramatically to 90% when Specialist Nurses (Organ Donation) approached the family 89 and the patient was known to be on the organ donor register at the time of potential donation, demonstrating that target consent rates can be achievable with the right resources at the right time.

However, there is still work to be done. Martine Walmsley, Chair of Trustees for PSC Support, said, ‘As at 31 March 2018, there were 359 people on the waiting list for a liver transplant. This is an incredible 32% fall from the previous year, but we need to continue to do more. We need not only a stronger shift in attitude to organ donation generally, but a health system that is adequately resourced to handle increased numbers of transplants.’

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, or suddenly become too sick to have the transplant, and are subsequently removed from the waiting list or die.

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.

The latest Organ Donation and Transplantation Activity Report can be viewed on the NHSBT Organ Donation and Transplant website.

Urgent Appeal

We are facing a serious funding crisis, yet people with PSC are relying on our services more than ever and we are continuing to provide support and information throughout this uncertain time. To help fund our vital services we need your support more than ever. Your contribution, however small, will go a long way. Thank you.

Our Organ Donation News

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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Presumed Consent for Scotland

12 Jun 2019

Another step towards presumed consent organ donation in Scotland.

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Living with PSC: A Patient’s Perspective VIDEO

21 May 2019

Maxine gives an account of her PSC diagnosis, being listed for liver transplant and life after her liver transplant for PSC.

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