New campaign in England to raise awareness of organ donation law change, the options and how to register a decision
Only 37% of over 16s in England currently aware that the law is changing. 8 out of 10 people in England say they would definitely donate or would consider donating their organs, but only a third have told their family they want to donate
Currently in the Isle of Wight, there are 19 people waiting for a transplant and in the past ten years, fewer than five have died waiting
Every day, across the UK, three people who could have benefited from a transplant die because there aren’t enough donors, while 6,000 are still waiting
NHS Blood and Transplant launches the year-long national campaign, ‘Pass it on’, to increase awareness and understanding of the organ donation law change, which comes into place next year, across England.
From spring 2020, all adults in England will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate or are in one of the excluded groups.
Those excluded will be people under 18, people who lack the capacity to understand the change and people who have lived in England for less than 12 months before their death or who are not living here voluntarily.
The campaign, ‘Pass it on’, aims to highlight organ donation and the law change on several different levels:
· Organ donation is a precious gift: you can save and transform up to nine lives by passing on your organs
· Make and share your decision: It’s your choice whether or not you want to donate. Make your decision and pass it on to those closest to you
- Spread the word: Help pass on the message about the change in the law around organ donation in England, and what it means, to others
A survey* carried out by NHS Blood and Transplant in January 2019, found only 37% of people over 16 were aware that the law around organ donation was changing. While this rose to half of over 55s, amongst certain groups awareness is much lower – for example, only 21% of 16 – 20 year olds and 27% of people from BAME backgrounds.
The campaign, developed with input from people from a range of ages and backgrounds and from across the country, aims to clearly communicate that the law is changing and the choices available, as well as encouraging people to make a decision and share this with their family.
The main creative concept aims to portray the gift of organ donation. It features a person holding a digitally created heart shaped balloon. As they release the balloon from their hand, another reaches out to take hold of the string.
Anthony Clarkson, Director of Organ Donation and Transplantation for NHS Blood and Transplant, says:
“Organ donation is, and always will be, a precious gift. Although the law is changing it will still be the generosity of individual donors and their families who decide at the most difficult time to support organ donation, which will ensure more transplants can happen and more lives can be saved.
“We want everyone to know the law around organ donation is changing, to understand how it is changing and the choices available to them. We want them to make their organ donation decision and to share that decision with their family.
“While eight in ten people in England tell us they definitely want to donate or would consider donating, only just over a third of adults have told their partner or family that they want to donate their organs after they die. Regardless of the organ donation decision you make, the most important thing is to make sure your family are aware of your decision.
“We hope that by increasing awareness and understanding of organ donation, we can inspire more individuals and families to agree to donation and allow many more lives to be saved.”
Once the new system is introduced across England, families will still be involved before any organ or tissue donation goes ahead and NHS Blood and Transplant Specialist Nurses will continue to speak with families about their loved one’s decision.
Jade Gulliver from Cowes, the Isle of Wight died waiting for a transplant only a few weeks after being diagnosed with liver failure due to viral hepatitis.
The 27-year-old, who left behind a three-year-old son and a six-month old son, had been fit and well until her sudden deterioration.
Jade’s sister Crystal, who has run awareness events and done charity runs to support donation, said:
“It was a bit of mystery how she picked up the infection; she had no symptoms other than waking up with slightly yellow eyes one morning, and she took herself to A&E.
“The doctors couldn’t initially find anything wrong but Jade had to go back to hospital a week later after waking up with water retention in her ankles.
“She was kept in hospital for another 10 days but it was only after she was transferred to Kings College Hospital in London that her condition was diagnosed.
“She was moved on to the urgent liver transplant waiting list and eventually placed into an induced coma to try and buy her more time until an organ became available.
“I can’t explain what it was like. Waiting every day for a phone call that never came.”
“It’s not until something like this happens that you realise how much organ donation is needed.
“Now I want to do everything in my power to prevent this from happening, so that no more families have to go through what our family has been through.”
The ‘Pass it on’ campaign is being supported by charities and community groups, including British Heart Foundation, Kidney Care UK, Donor Family Network, Share Your Wishes, ACLT and National BAME Transplant Alliance.
Jackie Doyle-Price, Minister for Inequalities said: “Far too many people in need of an organ transplant are still dying on a waiting list. We hope that Max and Keira’s Law will save hundreds of lives when it comes into effect next year – but until then, it’s vital people understand what the new law means for them. I want to reassure everyone that choosing to give the gift of life still is and always will remain a personal decision.
“I strongly urge people to talk to their loved ones about their wishes and make their decision clear on the register.”
Digital adverts will run across relevant social media channels with online resources and a toolkit available for individual supporters, community groups and partner organisations. Videos, animations, factsheets and FAQs plus printed materials will also be available.
For more information about the campaign or to access online resources, visit: https://www.nhsbt.nhs.uk/pass-it-on/
To find out more about organ donation, the law change, or to opt in or out, visit: www.organdonation.nhs.uk or call the dedicated advice line on 0300 303 2094
Call for families in The Isle of Wight to talk about organ donation as highest number of organ donors ever across UK, but fewer people die in circumstances where they are able to donate
With organ donation law changing in spring 2020, families are urged to make and share their organ donation decision
More people than ever before across the UK donated their organs after their deaths last year, according to the Organ Donation and Transplantation Activity Report 2018/19, being published today. In The Isle of Wight, 14 people gave the gift of life, by donating their organs after death.
Nationally, there was a record number of organ donors, with 1,600 people saving lives through deceased organ donation over the last year.
However, the report also shows that across the UK, fewer people died in circumstances where they were able to donate their organs – 225 fewer than in 2017/18. This means it is more important than ever that every person who wants and is able to donate their organs after death, is given the opportunity to do so. Sadly, in The Isle of Wight, over the last five years, two people died before they received the organ they desperately needed.
Organ donation is a relatively rare event in the UK, because although around half a million people die each year, only around 1% do so in circumstances which allow organs to be donated.
From spring 2020, the law around organ and tissue donation in England is changing. All adults in England will be considered as having agreed to donate their own organs when they die unless they record a decision not to donate or are in one of the excluded groups.*
Organ donation is a most precious gift and adults covered by the change will still have a choice whether they want to be an organ donor and their families will still be involved before organ donation goes ahead.
As the families of potential donors will continue to be approached by specialist nurses and asked to support their relative’s decision tobe an organ donor, it’s hugely important that families know what their relative would have wanted to happen. Talking about your organ donation decision to your relatives makes it much easier for them to support what you want.
Anthony Clarkson, Director of Organ Donation and Transplantation at NHS Blood and Transplant said:
“We’re incredibly grateful to all the courageous donors and their families across the country, who helped us to save so many lives last year.
“Organ donation is the only hope for many desperately ill people. We know many families feel a sense of pride and comfort from their decision to let their final act to be saving lives through organ donation.
“No lifesaving transplant would be possible without the generosity of every donor and their families, who give their support and say ‘yes’ to organ donation.
“There are 17 people in The Isle of Wight waiting for a transplant now. Their only hope for a new life is that a family in their time of grief will make the wonderful decision to agree to organ donation.
“With the law around organ donation changing in England from next spring, we urge everyone to find out about the choices available to them, make their decision and share it with their family.”
If you would like to help others after your death tell your family you want to be an organ donor and join the NHS Organ Donor Register.
It’s your choice whether or not you want to donate your organs. Please register your decision by visiting NHS Organ Donor Register and ensure you tell your family: www.organdonation.nhs.uk