A matter of consent

Philip Hunt on his private members bill seeking to increase organ donation in England

Every year, the NHS holds moving events with donor families to celebrate the gift of a loved ones’ organ to give life to others. They are remarkable occasions.

Organ and tissue donation saves and transforms thousands of lives each year. Almost 20 million people in the UK are recorded on the Organ Donor Register. But, sadly, the current number of organs and tissues available for transplantation are not enough to help all those people who are waiting for a new lease of life.

In 2017/18, there were 1,355 deceased donors, but 5,100 people on the transplant waiting list. More than 400 people died last year whilst waiting for a transplant and a further 755 people were removed from the transplant list as they were just too ill to receive a transplant.

My Organ Donation (Deemed Consent) Bill has its Second Reading in the House of Lords this week, following its passage through the Commons. The Bill allows for consent to organ and tissue donation to have been deemed to have been given by a potential adult donor, unless they had expressly stated that they did not wish to be a donor.

Thanks to the tireless work of many people to promote this Bill, including the MPs Geoffrey Robinson and Dan Jarvis who have secured unprecedented cross-party support, we are a step closer to putting the legislation onto the statute book.

The Bill is often referred to as ‘Max’s and Keira’s Bill’ in honour of the recipient 10-year-old Max Johnson, who recently received a Pride of Britain Award from the Prime Minister for his immense bravery while waiting for a heart transplant; and the donor Keira Ball, who tragically died in a road accident.

Our ambition is to achieve an 80% consent rate in England. This won’t happen overnight, but if we were able to get 80% of families to allow donations to go ahead, then there would be 280 extra donors a year. That could lead to around 700 more transplants a year.

The Bill, if enacted would be a significant step forward. Starting from the basis of presumed consent, families would still be fully involved in the decision. The aim is to spark a positive cultural change in England that many nations in Europe have experienced following their change to an opt-out position.

It will mean more people being inspired to have that incredibly important conversation with their loved ones knowing that this could save the life of a person waiting for a transplant. In countries where deemed consent systems are in place, there are generally higher numbers of organ donation when supplemented with wider measures. This has been the experience in Wales, with consent reaching 73% earlier this year – a big increase from where it started.

High consent rates often yield high deceased donor rates, but it is important that this is supported by investment in transplant teams, intensive beds and nursing staff. Particularly important are the specialist nurses. They are remarkable people and have the extremely difficult role of initiating discussions about potential organ donation with families at a sensitive time.  Investment in specialist nurses is often cited as one of the key factors for Spain’s world-leading organ transplantation service.

It will also be essential to have a strong communications strategy. The government has committed £18 million until 2022 for a public communications campaign to ensure people across England are fully aware of what the change in the law means; and to underline that choice will remain at the heart of the new system. 

I am proud to be sponsoring this Bill in the Lords. I’m convinced that it will be play a significant role in changing culture towards organ donation and help save hundreds of lives in England.

Lord Philip Hunt of Kings Heath is a Labour Peer and former health minister. He tweets @LordPhilofBrum

Published 22nd November 2018

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