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Have the Conversation and Leave them Certain

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The NHS is launching a new campaign to urge families in Somerset to talk about organ donation following research that less than half of adults in England have had the conversation.1
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.
In Somerset, 476,170 people are currently on the NHS Organ Donor Register, with 22 people becoming donors in the last year, but the NHS needs more people to talk with their families about their decision. Many still do not realise that families will still be approached before any donation goes ahead.
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.
Research shows that the biggest barrier to talking about organ donation is that it has 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.1
One person who knows the importance of having the conversation is Vicki Caldwell from Banwell North Somerset. Her 17-year-old daughter, Fiona Braidwood, sadly died after she sustained a fatal head injury in an accident while driving to Sixth Form in 2016. When Fiona was 14, she attended a talk at school which encouraged her to think about organ donation, register her decision on the NHS Organ Donor Register and to let her parents know her wishes.
Vicki said: "As parents we both remember her coming downstairs to tell us what she had done. There were many follow up conversations in which she would say Why wouldn't you do it if you can save someone's life, it's not like you are going to need those organs anymore, in the matter of fact way that Fi would tackle a lot of difficult issues. We were so proud of her for taking the step to join the NHS Organ Donor register. It's one of those conversations that you never forget.
It must be so hard for people who haven't talked about organ donation. It's such a surreal situation, you don't expect yourself to be in that position having conversations about end of life wishes, the family is in distress, you are in shock and not able to think clearly. It's an impossible situation to process any information or try to make important decisions. All your emotions are fighting against what you are hearing, and then you are asked about organ donation. It is too hard to process and make a decision about if you are not aware of your loved one's wishes.
We are so grateful to Fi for telling us so clearly. It has been healing to give Fi a voice in telling her story. I want to encourage people to have conversations. I want people to be inspired by her. Fi didn't need her organs anymore. She gave a gift that created opportunities for other people living in poor health with organ failure.
Fi donated her lungs, liver, kidneys and pancreas helping the lives of four people. In addition, she donated her heart to medical research.
Unlike Vicki's family, most people still haven't had the conversation, leaving them unsure what their loved one would have wanted.
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.

Find out more by visiting our dedicated pages at on how to discuss your decision

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


Notes
1 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.


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 dont 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: www.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.


Organ 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.

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