Longest waiting heart transplant patient in UK supports ‘no complacency’ call

NHS Blood and Transplant is urging people to talk during Organ Donation Week (September 3 to 9) and not show a ‘fatal complacency’ as figures show around 3,000 lifesaving transplants were missed in the last year because families said no to donating their relative’s organs.

Despite record levels of organ donation, family refusals are the biggest barrier to organ donation. Surveys show around 80% of people support organ donation. However only 33% of people have told their family that they want to donate. In circumstances where a family does not know their loved one's wishes, they are far more likely to refuse to give their consent to organ donation.

The longest waiting patient on the current heart transplant list has backed the urgent call for people to talk to their families this week.

Gareth Evans, 45, from Stockport, has been on the waiting list for nine years and was recently moved to the urgent waiting list due to his declining health. No-one on the current waiting list has waited longer for a heart transplant than Gareth. (1)

Gareth originally had a heart transplant in 1990 for cardiomyopathy, when he was aged just 17. Doctors think he developed the disease from a viral infection. He’s had 28 extra years from the organ, much higher than average.

However the organ is failing and he has been back on the waiting list since February 2009, to hopefully receive a second transplant. He has spent the last three months in Wythenshawe Hospital, Manchester, where his treatment includes IV medication to correct the damage done to his organs by his failing heart. Gareth’s immune system is more sensitised due to the transplant which makes it more difficult to find a match, in addition to the overall shortage of donated organs.

“Having a new heart is like being a little boy and having Christmas every day but having to tell the family you may not make it, is the most difficult thing to do. Thankfully we are all positive and always look to the future,” said Gareth, a former Senior Purchasing Executive, who is married with sons aged 10 and 13.

“It was a lot easier as a 17-year-old lad. Now I have the most awesome wife and kids that I worry about and get very emotional when thinking about them.

“We need more donors now to save more lives every day. People shouldn’t just sit there and hope their families know what they want. There are people who need their lives saved today, mine included. Organ donation saves lives and I am so grateful for that every day.”

NHS Blood and Transplant is urging families to talk with the message ‘Words Save Lives’. Councils, businesses and hospitals are lighting up their buildings pink, the colour of the modern donor card, to get people talking. Landmarks taking part include London’s iconic One Canada Square in Canary Wharf, which will have a pink band on its roof lit from September 4 to 7.

Anthony Clarkson, Interim Director of Organ Donation and Transplantation at NHS Blood and Transplant, said: “We don’t want people to die because of a fatal complacency that because you know you want to be an organ donor you presume your loved ones know it too.

“As an individual who believes in organ donation you need to make sure that you join the NHS Organ Donor Register and tell your family your wishes, your family’s role is critical now and it will still be critical in the future.

“People like Gareth are living moment to moment, in desperate need of someone saying ‘yes’ to donation – their lives depend upon a selfless organ donor and their brave family agreeing to donate their organs for transplant now.

“We all know that organ donation legislation will change in England and Scotland in future years but the harsh fact is people are dying right now waiting for an organ and it will still be important for people to know your decision. Please act on your belief in organ donation, share your wishes and find out what your loved ones would want for themselves. Only by sharing our views can we make it easier for our families should the time ever come.” (2)

Last year, 66% of families in the UK agreed to donate. However that still meant 1,148 families declined to support organ donation. If all those families had agreed to donate that would have led to nearly 3,000 extra transplants, based on the average number of transplants per deceased donor over that year. There are currently 6,133 people on the transplant waiting list. (3)

• More than 25 million people are already on the NHS Organ Donor Register, join them today and tell your family you want to save lives. Register at www.organdonation.nhs.uk

Ends

• For additional information please call the NHS Blood and Transplant press office on 01923 367 600 or email pressoffice@nhsbt.nhs.uk

Press release notes

1. • The median waiting time to transplant for never urgent adult patients on the heart transplant waiting list was 1,065  days, for patients registered 1 April 2011 - 31 March 2015.
   • As of August 16 2018, there are 280 people waiting for a heart transplant, including 29 children.
   • One year after registration on the non-urgent heart transplant waiting list, 10% of patients have died, 5% have been removed (usually because they are too ill for the transplant to be a success), 30% have become urgent, 37% are still waiting and 19% of people are transplanted. Figures from for 151 first non-urgent heart only registrations made in the UK, 1 April 2014 - 31 March 2015
   • Few people received second heart transplants – only around two to three people a year. In the past 10 years, only 27 patients have received a second heart transplant.
   • 10 year patient survival after first adult heart only transplant for patients transplanted between 2004 and 2006 was 60%.
2. Wales introduced a deemed consent (‘opt out’) system in December 2015. In June 2018 the Scottish Government introduced a Bill providing for an opt out system to be considered by the Scottish Parliament. Northern Ireland has confirmed that it will not be changing to an opt out system but undertook a consultation to seek the public’s views on what more could be done to promote organ donation in Northern Ireland. Jersey introduced legislation earlier this year and the Isle of Man are also in the process of introducing new legislation to introduce deemed consent.
3. As of August 16th, 2018.

Notes to editors

• 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.
• 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 around three people who could have benefited from a transplant die because there aren’t enough organ donors.
• 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 transforms even more by donating tissue.
• The Government has announced plans for a presumed consent system of organ donation to take effect in England from spring 2020.