A NEW campaign urging people to talk to their families about organ donation is being backed in Bradford, after research showed 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 to 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. While 9 in 10 families support organ donation if they know what their loved one wanted, this figure falls to around half when a decision is not known. 

Dr Ray Smith, Chief Medical Officer at the Bradford Teaching Hospitals NHS Foundation Trust, urged people to speak to their family about their decision.
Kevin Ferdinand and Karen Piotr sit on the Trust;s organ donation committee, along with Dr Smith.

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. 

She recently took up the position of chairperson on the committee and 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.'

Kevin, from Undercliffe, had to have a heart transplant back 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 had just returned from a short break with family in Barcelona in December 2017. Normally fit and well, Kevin started to feel unwell. He became breathless, lost his appetite and was tired. Thinking he just had flu or a virus, his doctor prescribed him antibiotics, but things got worse.

Kevin went back to his GP who noticed his eyes were turning yellow, a sign that something was wrong with his organs. He was sent immediately to the Bradford Royal Infirmary where he was diagnosed with pneumonia and a bad chest infection. But when his blood test results came back, they indicated he had major organ failure.

He: “My kidneys and liver were shutting down and my heart was damaged, with only 7 per cent of it working. I was rushed into intensive care and was told that I would be lucky to make it through the night.”

Kevin did survive the night and was transferred to the specialist heart unit at Wythenshawe Hospital in Manchester.

Kevin added: “My daughter Lacie-Rose was two at the time. I was worried but tried to keep positive. Throughout the journey I wanted to stay alive for my loved ones.”

He remained in intensive care for four months as medics tried to stabilise his heart but as it had failed on both sides, the only option left was a transplant.

Kevin said: “In April 2018, I received news that there was a match. It was very overwhelming, very emotional and very frightening as I didn’t know if I was going to make it. It was a 19 hour operation and I lost 19 pints of blood. I was put to sleep for about nine days and when I woke up, I managed to sit in a chair about half an hour later. It took me a month and a half to get back on my feet. I had to learn to walk again.

Kevin was discharged in May 2018 and went back to his work as a Data Improvement Officer at St Luke’s Hospital in Bradford in August that year.

He said: “I got to be a father again in the sense of playing an active role with Lacie-Rose 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.”

Kevin hopes that by sharing his story, he will encourage more families, particularly from Black, 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.

Altaf Kazi, Head of Faith Engagement for NHS Blood and Transplant, said: “The choice about whether to become an organ donor will always be a personal decision and donating in line with faith and values is very important to many people. We want everyone to understand the law around organ donation, the choices available to them, and highlight the importance of sharing their decision. This is so families can be certain they knew what their loved one wanted."

When it comes to organ donation, faith and beliefs are always respected.

"If you register a decision on the NHS Organ Donor Register, there is an opportunity to provide details so you can ensure your wishes are respected and discussed with your family. Whatever your decision, we want people to talk about it. 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. Please don’t wait. Have the conversation today.”

For more information on organ donation, and to register your decision, visit: www.organdonation.nhs.uk or call 0300 123 23 23.