Heart transplant recipient, Kevin Ferdinand, is backing an NHS campaign urging families 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 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% of people are willing to donate their organs, only 39% 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%) when a decision is not known.
Like most of the population, Kevin had not talked to his family about organ donation. He said: “Organ donation was not something I thought about before this happened to me. None of my family had spoken about it.”
Kevin 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.
“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.
“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.
“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.
“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.
“Everyone has different beliefs. I am from an ethnic background and whenever I speak to anyone from an ethnic background, they don’t know much about organ donation. I didn’t either before this happened to me and we have since spoken about it a lot as a family and have all signed up to the NHS Organ Donor Register. I want to help educate others so they can have the conversation with their families and make a decision.”
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.
“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.”
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.
“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.”
Research shows that the biggest barrier to talking about organ donation is that it’s never come up in conversation with 34% of people stating this as their reason. 27% say they are worried it will upset their family or make them feel uncomfortable, 24% feel they don’t need to tell anyone their decision, 22% don’t want to talk about their own death, 22% say they haven’t got round to it yet and 16% have never thought about organ donation before.
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.