The Government is carrying out a consultation over its intention to introduce a deemed consent (or opt-out) system in England. This would mean that people are considered willing to be an organ donor after their death, unless they have ‘opted out’.
The consultation started in December and is due to run until 06 March 2018. NHS Blood and Transplant would be responsible for implementing any agreed change of policy once the consultation has concluded. They would like your opinion, particularly your views and any evidence you might have about quality of life for people (and their families) who have had a transplant or who are waiting for one.
People who have the immune-mediated disease, primary sclerosing cholangitis (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 erson 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 England. We believe an initiative that has the potential to increase donor rates and transplants is a positive move. 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.
In 2016/17, England saw the highest ever rates for deceased organ donors and transplants.1 However, around 40% families did not support organ donation and consent was refused2. The most common reason for families to decline are because they know the relative did not want to donate or because they were unsure of the relative’s wishes, and are likely to feel it is safer to say no. In some cases the families will refuse to support a relative’s known decision to be a donor. PSC Support believes the accompanying opt-out information campaign to the general public would encourage people to sign up to the Organ Donor Register and ‘have the conversation’ about what they want to happen when they die.
How does organ donation work today?
You can find more background information and facts here. Please give your views, whether you agree or disagree with the proposals by clicking on the green button just below the images on the consultation page.