Families need to talk about organ donation, to give thousands waiting the chance of a 'new beginning'

Monday, 05 Sep 2016
  • New NHS Blood and Transplant campaign calls for people to help ‘Turn an End. Into a Beginning’ by talking about organ donation
  • Almost 90% of families agree to organ donation if they know their relative’s decision but this falls to less than 50% if they haven’t had the conversation
  • Campaign marks the start of Organ Donation Week (5th – 11th September)

From ‘Land’s Beginning’ to ‘Preston North Beginning’ football club, famous ‘Ends’ are turning into ‘Beginnings’ to mark the start of Organ Donation Week and to highlight how people could give someone the chance of a new beginning by telling their family they want to be an organ donor.

Every day across the UK, around three people who could have benefited from a transplant die because there aren’t enough organ donors. And currently around 6,500 people are on the waiting list for a transplant. Yet, of the approximately half a million people* who die each year across the UK, only around 1% (5,603) die in circumstances where their organs could be donated.

With such small numbers of people dying in the right circumstances to become an organ donor and so many adults and children in need of a transplant, it is vital that no opportunity for someone to become a donor is missed.

Many people believe that all you need to do to show you want to be a donor is to join the NHS Organ Donor Register. However, if you die in circumstances where you could become an organ donor your family would be approached by specialist nurses and asked to support  your decision to donate.  NHS Blood and Transplant figures show that only 47% of families agree to organ donation if they are unaware of their relative’s decision to be a donor. Yet almost 90% of families give their consent (or authorisation in Scotland) when the decision to be an organ donor is known.

Anthony Clarkson, Assistant Director for Organ Donation and Nursingat NHS Blood and Transplant, said: “Too many families faced with the possibility of donating a relative’s organs, find themselves having to make a decision without the comfort of knowing exactly what their relative would have wanted. This makes what is already an emotional and difficult time even harder. It is vital you tell your family about your organ donation decision: that knowledge will make it so much easier for them to support what you want.

Many donor families say that donation helps with their grief and they feel enormous pride, knowing that their relative went on to save lives after they died – giving others the chance of a new beginning. So please talk to your relatives and tell them that you want to donate should you be in a position to do so, and that you want them to support your decision to save lives after your death.”

A survey by NHS Blood and Transplant**, found the top five reasons for not having the conversation were:

1) It’s never come up in conversation – 36%

2) Don’t want to talk about death – 21%

3) Haven’t got round to it yet – 17%

4) Donating organs is a personal choice, don’t need to talk about it – 14%

5) I didn’t think I needed to – 12%

While the majority of people explained that they hadn’t got round to it, or the opportunity hadn’t come up, a significant number said that they didn’t believe they needed to. This suggests that people are often unaware that their family would have to support their organ donation decision if donation was possible.

While we encourage everyone to have the conversation, there is a particular need to encourage more black and Asian families to talk about organ donation. In 2015/16, only 5% of all deceased donors came from a BAME background and families from these communities are more likely to refuse consent than white families. This is a particular concern, as people from black and Asian communities have a higher incidence of conditions such as diabetes and certain forms of hepatitis, making them more likely to need a transplant. While some may be able to receive an organ from a white donor, for many others the best, or only, match would be from someone from the same ethnic background.

Last year, only 34% of families from a BAME background gave their consent to donate a relative’s organs, compared to 66% of white families***.At the same time, NHS Blood and Transplant research shows that people from a BAME background are less likely to be aware of the NHS Organ Donor Register, less likely to have had a conversation with family, less likely to agree it is important to share your decision with relatives and it is less likely that their family will be aware of their decision.****

Jane Dalton-Brown, an artist and musician, from Purley, London, helped five people when her organs were donated. The 29-year-old died when she was hit by a truck and suffered fatal head injuries.

Her brother, Lloyd, hadn’t spoken with her directly about organ donation but agreed to donation as he knew from her friends that it's what she would have wanted. He is comforted by the fact she has saved lives and now campaigns to raise awareness of organ donation.

Lloyd said: "What have you got to lose by signing up? If you end up a potential donor you won't need your organs. It is something positive for your loved one's to hold on to, which I personally do after my sister donated.”

Meanwhile Natalie Kerr, from Adlington, near Chorley, knows first-hand what it is like to be given the chance of a new beginning. Natalie, aged 34, was diagnosed with pulmonary hypertension after giving birth to her second child in 2008, causing damage to her heart and lungs. She was stable for around a year but then started deteriorating and struggled to be the mum she wanted to be. Natalie was listed for a transplant in 2011 and continued to deteriorate.

Natalie says: “I knew time was running out. I desperately wanted to be here for Brandon and Isabelle, but I had just had enough of being poorly, I was so ill and had been for so long that I felt like I wanted to go to sleep and not wake up. It was a heartbreaking time for us all.”

Just as she was feeling she couldn’t go on much longer, she received a call to say there was a donor and she could have her lung transplant.  Within weeks Natalie was home and recovering. The former nurse is now loving being a mum to Brandon and Isabelle.

Natalie says: “It was a new beginning, a fresh start, and I’m so grateful to my donor. It’s hard to explain but just to be able to breathe is incredible. I’d been ill for a long time and couldn’t be a mum. Now we spend quality time together and make memories, it’s amazing. It’s all the little things in life I treasure, being able to walk Isabelle to school, seeing her face as she goes in and seeing her face when she comes out and I’m there. I wouldn’t be if it wasn’t for my donor.

“My transplant gave me a future with my children, what a legacy to leave – they have their mum because of my amazing donor and their family. Please think about organ donation and talk to you family about it, it’s a wonderful thing.”

Across the country during Organ Donation Week, hospitals, health teams, charities and individual supporters and their families will be highlighting the need for people to talk about organ donation and share their decision with family.

Start a conversation today and help turn an end into a beginning. Join the NHS Organ Donor Register and make sure you tell your friends and family your decision.

Visit www.organdonation.nhs.uk or call 0300 123 23 23. Share your decision with your friends, using hashtag #YesIDonate

Ends

For more information, case studies or interviews please contact the NHS Blood and Transplant press office on 01923 367600 or pressoffice@nhsbt.nhs.uk. Out of hours contact 0117 969 2444

Notes to Editors

* In 2015/16, there were roughly 570,000 deaths in the UK, of which 5,603 (~5,600) died in circumstances where their organs can be donated.

* TNS survey of 1,502 adults in England in March 2016

** In 2015/16, 33.6% of families from a BAME background gave consent for donation, compared to 65.8% of white families.

**** Comparison statistics taken from TNS survey, March 2016

Awareness of NHS Organ Donor Register – 74% of white respondents, compared to 57% BAME respondents

Agree its important to share decision – 59% of white respondents, compared to 38% of BAME respondents

Had the conversation with family – 48% of white respondents, compared to 27% of BAME respondents

Whether all or some family aware of organ donation decision – 83% of white respondents, 77% of BAME respondents

Have you ever talked with anyone about organ donation?

Yes

46%

No

50%

Don’t know

4%

How important do you think it is to tell those closest to you of your views about donating your organs after death?

Very important

57%

Quite important

28%

Quite unimportant  

1%

Very unimportant

2%

Neither

11%

Don’t know

3%

Which of these statements best describes your views on organ donation? It doesn't matter if you would donate your own organs or not, we just want to know how you feel about organ donation in principle.

I strongly support organ donation in principle  

46%

I support organ donation in principle

34%

I oppose organ donation in principle

1%

I strongly oppose organ donation in principle  

2%

I neither support or oppose

15%

Don’t know

3%

Which of the following best describes how you personally feel about organ donation after death?

I would definitely donate all my organs if possible

39%

I would definitely donate some of my organs if possible  

16%

I would consider donating all of my organs

16%

I would consider donating some of my organs

11%

I don’t know if I would donate my organs

14%

I definitely wouldn’t donate my organs

4%

  • NHS Blood and Transplant is a joint England and Wales Special Health Authority. Weare responsible for ensuring a safe and efficient supply of blood and associated services to the NHS in England. We are also the organ donation organisation for the UK and are responsible for matching and allocating donated organs.
  • We are an essential part of the NHS and take pride in saving and improving lives by making the most of every voluntary donation, from blood and organs to tissues and stem cells.
  • Our work would not be possible without our donors - ordinary people doing extraordinary things by saving and improving the lives of others.
  • To find out more visit: www.nhsbt.nhs.uk
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About organ donation

  • It is quick and easy to join the NHS Organ Donor Register. Visit www.organdonation.nhs.uk or contact our 24 hour a day donor line - 0300 123 23 23.
  • The register records your decision on whether you want to donate your organs and/or tissue after your death to save and improve the lives of others. It is used by authorised medical staff to establish whether someone has registered an organ donation decision.
  • Letting your family know your organ donation decision will make it much easier for them to support what you want.
  • Every day across the UK around three people who could have benefited from a transplant die because there aren’t enough organ donors. We need more people to agree to organ donation
  • 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 transform even more by donating tissue.
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