People encouraged to leave families certain for Organ Donation Week

Teresa and son Alfie, now 13

This Organ Donation Week (20 to 26 September 2021), Oxford University Hospitals and NHS Blood and Transplant are calling on people to talk to their families about organ donation and leave them certain about their decision.

Around 350,000 people in Oxfordshire are already on the NHS Organ Donor Register. However, people need to tell their families to help ensure their loved ones support their decision if they are approached about organ donation by a specialist nurse in hospital.

The law around organ donation changed in England in May 2020, and all adults are now considered as having agreed to donate their own organs when they die, unless:

• they record a decision not to donate
• are in one of the excluded groups, or
• have told their family that they don't want to donate. 

However, relatives will still always be consulted before organ donation goes ahead. Each year, opportunities for transplants are missed because families aren't sure what to do. 

This year, organ donation has also been added to the National Curriculum for the first time, so family members, whatever their age, are being encouraged to get together to talk about their own organ donation decisions.

Professor Peter Friend, Director of the Oxford Transplant Centre at OUH, said: "Knowing what your relative wanted helps families support their decision around organ donation at what is often a difficult time. 

"We need more people in Oxfordshire to talk with their loved ones about organ donation to give them the certainty they need to support their organ donation decision."

'People waiting for a transplant can only survive with your generosity'

This week, OUH is supporting the campaign by sharing the story of transplant recipient Teresa Saunders, who was gifted new life when she received a new kidney and pancreas in 2013. 

Teresa is a 44-year-old catering manager who lives in Reading with her husband and 13-year-old son. Nine years after her transplant, she still can't believe she has a normal life, with no health issues disrupting her day. This used to be her normality before her transplant, ever since she was seven years old.

Diagnosed with Type 1 diabetes as a little girl, she had to learn to manage her condition with regular injections of insulin. Her life went on, despite the diabetes. However, when she got pregnant her condition deteriorated dramatically. Her sight worsened so much that she had her driving licence revoked, and before the third trimester of pregnancy she was admitted to hospital for kidney failure.

The more the pregnancy was progressing the more both her kidney and pancreas were deteriorating. So, when she reached 28 weeks doctors decided to deliver the baby as both of their lives could have been in danger with the pregnancy going ahead. Both Teresa and her baby, who was born prematurely, had to stay in hospital for a long time afterward. While the baby recovered and grew healthy, Teresa's life changed forever.

Her kidneys did not recover, and she had to start dialysis. Her kidneys were only working at 15 percent which meant that she had to have dialysis four times a day, for 30 minutes each time. She was put on a waiting list for both kidney and pancreas transplants.

Nevertheless, she wanted to have a normal life and with a tube inserted in her stomach she was going to work in her catering role by carrying the dialysis device with her. She would sit only four times a day to do the dialysis as her job required to stand most of the time and at home, she had to take care of a toddler. In the meantime, she also had to manage her Type 1 diabetes which had continued to worsen over time.

"Looking back, I still can't believe I had such strength to carry on taking care of my family and work full time, despite my health condition," Teresa said. That was her life for three years, knowing that that strength was not meant to last and waiting for the call that would have changed her life. She did receive the call from the hospital twice, but the transplant couldn't be carried out - the first time she had an infection, and the second time the pancreas wasn't in a suitable condition to be transplanted.

It was third time lucky for Teresa - she couldn't believe the transplant was happening for real. 

"It was nerve-wracking - I was excited and scared at the same time," said Teresa, remembering the moment she went into the theatre.

She spent 20 days at the Churchill Hospital in Oxford following surgery. "The care I received at the hospital was superb. The team was fantastic, they were always with me and helped me so much through my recovery. I have known them for 11 years now, as I still have to go to the Churchill for check-ups, and they are like family to me," she continued.

Following the recovery, her life improved more than she could imagine. She said: "It's incredible. One minute you have diabetes, and your day is scheduled around dialysis, insulin, and all the problems coming with the condition. Then, suddenly, all of them disappear from your life and you have nothing to worry about anymore."

Teresa was so grateful for her new life she was gifted that she wanted to track down her donor's family, and the donor's daughter wanted to find the recipient. They found each other eventually and have been friends ever since. 

She said: "She knew her mother wanted to be a donor and when the time came that nothing could save her life, the family supported the organ donation. My donor's daughter said she feels better knowing that her mum saved the lives of other people."

After nine years, Teresa still feels that her normal life is a miracle that would never have happened if her donor had not had that conversation with her family. To raise awareness about the importance of organ donation and funds for the Oxford Transplant Centre at OUH, Teresa will take part in a charity sky dive in April 2022.

"A conversation about organ donation will only take two minutes. I urge everybody to have that conversation. People waiting for a transplant can only survive with your generosity. After all, knowing that you saved someone else's life is the best gift you can ever give," Teresa concluded.

OUH joins Teresa asking people across the area to tell their families that they want to donate after their death to ensure more lives are saved. 

Professor Friend added: "These conversations are important for all of us, more so for people from Black and Asian backgrounds. Members of these communities are more likely to need a transplant, however, often wait longer as the best chance of a match will often come from someone of the same ethnicity."

Anthony Clarkson, Director of Organ and Tissue Donation and Transplantation for NHS Blood and Transplant said: "We are very grateful to Oxford University Hospitals for its support during Organ Donation Week.

"Even now the law has changed, families will continue to be approached before organ donation goes ahead. It remains so important to talk to your families and ensure they know what you would want to happen.

"Register your organ donation decision on the NHS Organ Donor Register and tell your family the choice you have made. If the time comes, we know families find the organ donation conversation much easier if they already know what their relative wanted."

To find out more and register your decision, visit the NHS Organ Donor Register at www.organdonation.nhs.uk and share your decision with your family. Users of the NHS app can also use this to record, check, or amend their details or decision.