New faith and beliefs declaration to help overcome barriers to organ donation

Posted on: 14th December 2018

The British Liver Trust supports a new option which has been added to the NHS Organ Donor Register to give reassurance about how organ donation can go ahead in line with a person’s faith or beliefs.

The development comes in response to the Government’s recent organ donation consultation in England, in which some faith groups stated that they felt more needed to be done to acknowledge the importance of faith and beliefs for some people when deciding whether to proceed with donation.

Research carried out on behalf of NHS Blood and Transplant also shows that the main barrier to organ donation among black and Asian people is the belief that it is against a person’s culture or religion*, despite the fact that organ donation is supported by all major religions and belief systems.

“This development presents a huge opportunity for liver patients, hundreds of whom sadly die each year waiting for a transplant,” said Vanessa Hebditch, Director of Communications and Policy at British Liver Trust. “Improving engagement with different faith groups and sensitive management of eligible donors and their families will hopefully lead to more livers becoming available.”

The Government asked NHS Blood and Transplant, the organisation that runs the UK’s NHS Organ Donor Register, to develop this new declaration. People signing up to the NHS Organ Donor Register will now be asked an optional question about whether or not they want their faith or beliefs to be discussed with their family, or anyone else they consider appropriate. This could, for example, be a faith leader.

Jackie Doyle-Price, Minister for Inequalities, says: “Organ donation is a priceless gift – but thousands of people are still waiting for a transplant and we must do all we can to remove the barriers that prevent people from signing up as a donor.

“This important update will give people the confidence that when they register a decision to donate their organs, their beliefs will always be considered. Choosing to donate an organ is and will remain a personal decision and I am delighted that we are making real progress in helping people to make that choice in a way that’s right for them.”

If a potential donor requests that the NHS speak to their family (and anyone else appropriate), the specialist nurse will raise this when they approach their relatives. They will not know what particular faith or beliefs the individual observes. This information will continue to be gathered through conversations with the family.

NHS Blood and Transplant’s specialist nurses in organ donation already discuss faith and beliefs with families. If queries or concerns relating to faith or belief issues are raised (e.g. whether burial would be delayed or if any last rites need to be performed), the nurse will identify the best way to enable donation to go ahead in discussion with the family, while respecting any religious or cultural considerations.

It is hoped that by making the acknowledgement of faith and beliefs an integral part of the registration process for those who wish to take up this option, this new declaration will encourage more people with a strong personal faith or beliefs to consider organ donation.

There is a particular need to encourage more black and Asian people to join the NHS Organ Donor Register and speak with their families about their decision.

Last year, only 42% of black and Asian families agreed to donate their relative’s organs, compared to 66% of families from the overall population. Yet, over a third of patients waiting for a kidney transplant are from black, Asian and minority ethnic communities. Often their best chance of a match will come from someone of the same ethnic background. One in five people who died on the transplant waiting list last year was from a BAME background.

Sally Johnson, interim chief executive for NHS Blood and Transplant, says:

“Organ donation is supported by all the major religions and belief systems in the UK, but we understand that a person’s faith or beliefs can play a role in their decision whether or not to donate their organs.

NHS Blood and Transplant is committed to working with faith organisations, leaders, non-religious groups, hospital chaplains and pastoral carers to build awareness and break down perceived barriers. This is particularly important to address concerns and misconceptions about the organ donation process in black, Asian and minority ethnic communities.

We hope this declaration will provide additional reassurance to those who need it and we will see an increase in numbers of people from a wide variety of faiths and cultural backgrounds joining the NHS Organ Donor Register.”

Bimla Parmar, a Sikh with an Indian background, became a lifesaving organ donor when she died of a brain haemorrhage aged 68, after collapsing at home. Her daughter, Gurpreet Parmar, 39, says:

“My mum was not on the NHS Organ Donor Register, but my siblings and I were fine with it as we believed someone else should be helped by our loss. I personally had registered to be a donor a long time ago as I want to help someone else once I am gone. Mum was religious and loved by everyone. She was able to donate her lungs, kidneys and liver to four people.

“I hope more of my generation and younger educate the elders to sign up to donate and explain what their gift can mean to a family seeing their loved one struggle on a daily basis. I do hope my story will make more people sign up to donate!”

During the Government’s organ donation consultation, some faith groups and individual observers of faith or beliefs also requested visible ways for people to show their support for organ donation in the context of their faith.

Working with faith leaders and other organisations, such as Humanists UK, NHS Blood and Transplant have developed a selection of downloadable faith and belief-specific donor cards so people can show their support for donation alongside their own faith or beliefs as well as share with friends and family.

Gurch Randhawa, Professor of Diversity in Public Health & Director, Institute for Health Research and author of the Faith engagement and Organ donation action plan:

“The faith declaration is a positive step in ensuring that faith is recognised within the context of organ donation. It will enable NHS staff speak to your family about how organ donation can go ahead in line with your faith or beliefs, the specialist nurse will raise this when they approach your relatives about donation.”

“Our research shows that for some people, respecting their faith at end of life is very important and the declaration enables an individual to be reassured that their wishes to become an organ donor and carried out in accordance with their faith and beliefs.”