BRADFORD Teaching Hospitals’ Organ Donation Committee is backing a new NHS campaign to urge families across the district to talk about organ donation following research that less than half of adults in England have had the conversation.
The Leave Them Certain campaign aims to highlight the impact not knowing has on the families who are left behind and encourage people talk about their decision. It follows the law change last year in England, which means that all adults are seen as willing to donate their organs, unless they opt out or are in one of the excluded groups.
However, many don’t realise that families will still be approached before any donation goes ahead. Even though 80 per cent of people are willing to donate their organs, only 39 per cent say they have shared their decision. And while a huge 9 in 10 families support organ donation if they knew what their loved one wanted, this figure falls to around half (51 per cent) when a decision is not known.
As part of the campaign, a new TV advert launched this week featuring the Kakkad family. Shivum’s father Bharat died from a cardiac arrest when he was 63 in May 2019, but the family had never spoken about organ donation. The advert features family footage and memories of Bharat but ends with another memory – when they asked Shivum if his father wanted to be an organ donor and he just didn’t know.
Significantly, Shivum and his family did agree to organ donation, but it was a decision that could have been made easier if they’d had the conversation.
Shivum said: “My father was a very giving person. He did charity work and was a strong believer in the Hindu act of Sewa, of service to God. When the specialist nurse approached us about organ donation, we made our decision. We knew that helping others in need was what my father would have wanted. But I wish we had spoken about it to know for certain and I would urge others to take the opportunity while they still can.”
Shivum hopes that by sharing their family’s story, they will encourage more families, particularly from Asian and other ethnic backgrounds, to support and talk about organ donation. The numbers of donors are increasing, but more need to come forward as often the best transplant match will come from a donor of the same ethnicity. Bharat went on to help the lives of two other people. He donated a kidney to a woman in her 50s and a kidney to a man in his 60s.
Dr Ray Smith, Bradford Teaching Hospitals’ Chief Medical Officer, said: “Talking to your loved ones about your organ donation decision is hugely important. The not knowing can be an added stress for your family at what is already a very difficult time.
“We would like to encourage more people in Bradford to think about whether they’d like to be an organ donor and to let friends or family know so that they can be sure they are making the right decision for you.”
Research shows that the biggest barrier to talking about organ donation is that it’s never come up in conversation with 34 per cent of people stating this as their reason, and 27 per cent say they are worried it will upset their family or make them feel uncomfortable, 24 per cent feel they don’t need to tell anyone their decision, 22 per cent don’t want to talk about their own death, 22 per cent say they haven’t got round to it yet and 16 per cent have never thought about organ donation before.
Karen Piotr, from Queensbury, and Kevin Ferdinand, a data improvement officer sit on the Foundation Trust’s organ donation committee, alongside Dr Smith, which aims to educate NHS staff and the public about the benefits of organ donation.
Karen agreed to support her husband’s decision to be an organ donor, after he died suddenly from a spontaneous, catastrophic brain bleed in 2017. Karen and Mark had discussed organ donation several times before, so Karen knew what Mark wanted. Through Mark’s death he helped eight people.
Karen, who has recently taken up the position of chairperson on Bradford teaching Hospitals NHS Foundation Trust’s organ donation committee, said: “I wholeheartedly support the ‘Leave Them Certain’ campaign because back in May 2017, I knew immediately what my husband’s wishes were, as we had talked about organ donation many times.
“I was happy to honour Mark’s decision as his next of kin and today, through his selfless act, eight people are alive and having the second chance of life. Please talk to your family and relieve them of the burden of not knowing.”
You can read more about Karen’s story here:
Kevin, from Undercliffe, Bradford, became a heart transplant recipient in April 2018 after an unidentified virus left him with only seven per cent heart function and sent him spiralling into heart, lung, liver and renal failure.
He said: “Like most of the population, I had not talked to his family about organ donation. Organ donation was not something I thought about before this happened to me. None of my family had spoken about it.
“Since receiving my heart transplant, I have got to be a father again in the sense of playing an active role with my daughter, Lacie-Rose, 5, and giving her big hugs.
“What happened to me was so sudden and unexpected. You just don’t know what is around the corner. I do my best to look after myself and my donor’s heart. He lives on in me and has given it to me to protect and love.
“I want to encourage all families to talk about organ donation. No one wants to talk about when they die, but it is inevitable and it’s so hard on the families who are left behind to decide what to do. If I can help one more family to talk about organ donation, then that is good enough, that is one more family than yesterday.”
You can read more about Kevin’s story here.
Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation for NHS Blood and Transplant, said: “People often tell us that they struggle to find the right time or words to talk about organ donation, unfortunately we see first-hand the impact not knowing has on families when the first time they consider their loved ones wishes around organ donation is when they are seriously ill or have already died.
“Talk to your friends, talk to your family. Even though the law has changed, you can still sign up to the NHS Organ Donor Register to provide your family with added reassurance. Please don’t wait. Have the conversation today.”
The NHS has some produced some tips and guidance to help start the conversation:
- Start by checking in first; ‘how are you doing?’ so you can gauge whether now is a good time. Choose a time when you’re not too distracted or when you’re sharing a space, or time with each other, maybe over a cup of tea or out walking.
- Perhaps there is something that prompts the conversation – passing a driving test, seeing our campaign TV advert, or an article in the paper.
- Open with ‘did you hear’ and not your own point of view; or use a hypothetical ‘how would you feel if…’
- If faith is important to you, open with talking about what you know about your faith’s beliefs on giving.
- Acknowledge it’s a difficult subject and that you don’t have to agree.
For more information on organ donation, and to register your decision, please visit: www.organdonation.nhs.uk or call 0300 123 23 23.
Notes to Editors
-  Organ Donation Attitudinal Survey, June 2020
- Please note 49% have reported having a conversation about organ donation and 39% say they have shared their organ donation decision.
- The biggest barrier to conversation allowed multiple answers.
-  Organ Donation and Transplantation Activity Report 2019/20
- The law around organ donation in England changed in Spring last year, meaning that all adults are now considered as willing to donate their organs unless they opt out, are in one of the excluded groups, or tell their family they don’t want to donate.
- Excluded groups include people under 18, those who lack the mental capacity to understand the new arrangements and take the necessary action; people who have lived in England for less than 12 months; those who are not living here voluntarily and those who have nominated someone else to make the decision on their behalf.
- People are not able to donate if they are positive for Covid-19, for the latest update on our position during the coronavirus pandemic, please visit: nhsbt.nhs.uk/news/coronavirus-update
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.
- It is quick and easy to join the NHS Organ Donor Register. Call 0300 123 23 23 or visit www.organdonation.nhs.uk
- Families are always involved in organ donation discussions. You can make things easier for your family by telling them you want to donate.
- Every day across the UK someone dies waiting for an organ transplant.
- 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 transform even more by donating tissue.