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

A new option added to the NHS Organ Donor Register has been developed 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.

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 or someone else.

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 from Hayes, 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.”

Contact us

For additional information, or to request interviews with case studies or spokespeople please call Suzi Browne at the NHSBT Press Office on 01923 367600 or email pressoffice@nhsbt.nhs.uk

Notes 

*A face-to-face survey to measure attitudes towards organ donation was carried out among 1,034 adults aged 18+ from black and Asian backgrounds during May 2018. The sample was balanced by age, gender and broad geographic region. 27% said they thought organ donation was against their culture or religion.

What should people do if they want to join the NHS Organ Donor Register or complete the new faith/beliefs declaration?

Any new registrants should go online and complete the registration process. Anyone who has previously registered, can complete an ‘amend your details’ form and answer the declaration question in a way that is relevant for them now. Their record will be updated with their new decision.

If people don’t have online access they can also contact our contact centre on 0300 123 23 23, and our agents will be able to update their record for them.

To ensure a conversation happens about their faith or beliefs, an individual should record this on the NHS Organ Donor Register and take the time to discuss their donation decision with their family.

It is important to make sure relatives understand reasons for wanting to be a donor, and how this fits with any personal faith/beliefs as well as highlight any particular requests or requirements. For example, if an individual would like the nurse to discuss their faith with anyone else, such as a faith leader, they should let their family know at the time of registering.

To those who feel the need to clarify their faith’s position, take a look at the NHS Organ Donation website or speak to their faith leader.

Find out about organ donation and the position of individual faith and belief systems.

More information about downloadable donor cards.

NHS Blood and Transplant

NHS Blood and Transplant is a joint England and Wales Special Health Authority. We provide the blood donation service for England and the organ donation service for the UK.

We also provide donated tissues, stem cells and cord blood. We are an essential part of the NHS, saving and improving lives through public donation.

Organ donation

• It is quick and easy to join the NHS Organ Donor Register. Call 0300 123 23 23 or go online and complete the registration process.
• Families are always involved in organ donation discussions. You can make things easier for your family by telling them about your decision
• Every day across the UK around three people who could have benefited from a transplant die because there aren’t enough organ donors
• Anyone can join the NHS Organ Donor Register, age and medical conditions are not necessarily a barrier to donation
• One donor can save or transform up to nine lives through organ donation and save and transforms even more by donating tissue
• The Government has announced plans for an opt-out system for organ donation to take effect from spring 2020. Under the system, you would be a donor unless you register a decision not to donate. Families will always be involved in discussions with the specialist nurse and will be able to object to donation if you did not wish to donate, so it’s important that you make their decision easier at a difficult time and share this with your friends and family.