Organ donation saves lives – but we need to talk about it now
Ahead of Organ Donation Week Jenny Lee finds out more about the urgent need for people to join the Organ Donor Register and discuss their wishes with their relatives
IN THE UK in 2016 there were 6,400 patients waiting for organ transplants and 3,700 organ transplants carried out. That came from 1,413 donors, who died in our intensive care units and whose families gave consent for them to become organ donors. But sadly that is not enough, with the number of transplants needed rising due to an ageing population and increases in illnesses such as diabetes, kidney, heart and liver disease.
Last year 12 people in Northern Ireland died waiting for an organ transplant. And while 40 per cent of patients here are registered on the organ donor register, the refusal rate for families consenting to the use of organs following their death is the highest in Europe.
Dr Dominic Trainor, a consultant in the intensive care unit at Belfast's Royal Victoria Hospital and clinical lead for organ donation for Belfast Health and Social Care Trust, explains that hospital staff now make the consideration of organ donation a routine part of end-of-life care, with staff having electronic access to the organ donor register.
"Once we have consider a patient has the potential to become an organ donor, we go to their family and loved ones and take them through the process of understanding that their relative is dying. Then we ask the family for their thoughts with regard to their loved one becoming an organ donor. We find that only six out of 10 families in that position in Northern Ireland say yes to donation," he says.
Dr Trainor says the main reason for this is that families say they don't know their loved one's wishes regarding organ donation and therefore don't feel they can give consent.
"They are grieving and coming to terms with the death of a loved one and we are then coming along and saying potentially your loved one could become an organ donor. It's a lot of information to deal with. And what needs to happen is that this discussion needs to happen earlier, before families find themselves in that position."
This year's Organ Donation Week takes place from September 4-10, with Belfast City Hall being lit red on the evening of Tuesday September 5 to mark the occasion. Health professionals hope the week will act as a catalyst for families to discuss their wishes about organ donation if they ever find themselves in that position.
"We know through different surveys that nine out of 10 people support organ donation and over 80 per cent of people say if they needed an organ transplant they would happily receive one, but those sort of numbers aren't translated into practice when it comes to giving consent for organ donation for people who are dying," Dr Trainor says.
"There is widespread recognition among healthcare professionals in Northern Ireland that the Northern Ireland population is an altruistic population. Our living donor rates – where a family member is awaiting a kidney transplant and that family all get tested to see if they are a match for their loved one – exceeds the rates of deceased donation and that's a trend that is the reverse of that situation in England, Scotland and Wales.
"By 2020 through public awareness and conversation we hope to increase consent rates for organ donation up to 80 per cent. The key is normalising the conversation about what happens after death, so families aren't faced with having this conversation about death and organ donation all at the same time in the hospital."
Dr Trainor has already had that conversation with his three children, aged seven, eight and nine and would like organ donation to be included in the school curriculum, as it is in Scotland.
Transplants are regularly carried out on the heart, liver, lungs, pancreas and small bowel. Also, tissue such as corneas and heart valves can be donated and transplanted.
"Organ donation is the ultimate gift of life for up to potentially nine people. It can change the life of many people – not only the recipient, but their family, friends and wider circle. The families of people you speak to who have donated have received a lot of comfort in the aftermath of a loved one's death, knowing that some good has come and they have left a legacy for others," Dr Trainor adds.
South-African born Francois du Plessis, who has lived in Ballyclare for the past 13 years, is just one example of a person who has been given "a second chance at life" through organ donation.
In 1998, as a fit 19-year old who played rugby competitively, Francois became ill with acute pancreatitis and spent three weeks in intensive care in South Africa before requiring dialysis every five hours to stay alive.
"I lived fatigued for almost eight months. I tried not to let it get me down, but doing anything was hard work," says Francois, who was fortunate that his mum was a genetic match and he received a live kidney donor transplant from her in Cape Town.
"I was very fortunate to have great support from friends and to receive a transplant so soon. Many people are on dialysis for years and the longer you are on it the less likely you are to have a positive outcome."
While playing contact sport was ruled out, a year after his transplant Francois decided "life is too short" and went travelling. It was while he was in London he met a girl from Northern Ireland, fell in love and moved here.
He has since got married and had three children and also successfully competed in the British and World Transplant Games in squash and swimming, including winning a gold medal in the individual medley at the 2013 World Transplant Games in South Africa, with his proud mother watching on.
Francois urges people to consider joining the organ donor register.
"We don't need cures like other illnesses, we just need kindness. There is no greater accolade that to save another person's life and let's face it, you don't need them when you are not with us any more."
:: In Northern Ireland, anyone over the age of 14 can sign the Organ Donor Register. You can do this online, by post or by calling the NHS Donor Line on 0300 123 23 23. For further information visit www.organdonationni.info.