For Chiara DeBiase, seeing the effects of the work carried out by blood cancer charity Anthony Nolan – for whom she is director of patient services – is what drives her. It’s hugely important to Chiara that people are inspired to take the blood cancer charity to heart, fundraise for it and support it. For that, she holds the charity’s founder Shirley Nolan in the highest regard. “It always comes back to Shirley Nolan,” she says. “She’s the person that inspired and still inspires so many of our supporters, connecting everyone with her attitude of ‘I’ll do anything to save my child’s life.’
“She turned her life upside down for Anthony, and although we didn’t find a stem cell donor in time for him, she continued on her quest for everyone else in a similar situation. Everything I do comes back to that – Shirley and Anthony Nolan and the desperation of her search, the tragedy of her bereavement and that she kept going for others. She was a force to be reckoned with.”
Chiara’s first post with Anthony Nolan was as head of patient experience over seven years ago, which was an entirely new role. “I’m a clinician and have worked in transplant services, and I was very excited at the way this post was dedicated to patients and their families,” she says. “Up until then everything was focused on getting the cells to the patients but what happened after the transplant didn’t have the same dedicated focus, so I saw the role as essentially closing the circle when it came to the care Anthony Nolan provided, 40 years after it all began.”
Everything Chiara’s team has done has been driven by the patients’ voice and the vision of ensuring every transplant patient has access to Anthony Nolan specialist care, which is funded by supporters. “One of my proudest moments was when we managed to raise the funds to appoint the first three clinical nurse specialist [CNS] posts,” she says. “I knew the value that would bring to patients’ care. We now have a team of 12 CNSs and three clinical psychologists working in 12 of the 33 hospitals in the UK providing stem cell transplants. We hope that over the next three to four years we will have enough funding to have at least one Anthony Nolan post in each hospital.”
That dedicated care and support given to patients post-transplant is what Chiara and her team constantly focus on, aiming to continually increase staff capacity and improve patient care. “The hardest days are when I’m made sharply aware that we need to do more,” she says. “Sometimes patients have a successful transplant and then die because of side effects like graft-versus-host disease [where the donated bone marrow or peripheral blood stem cells see the recipient's body as foreign, and the donated cells/bone marrow attack the body] and that is heart-breaking.
“You think: really? After all this? Their bravery and determination… You could cry.”
The best moments are equally emotional, though obviously at the other end of the scale. “I took a team to the British Transplant Games in 2015 and I’ll never forget watching the parents of a four-year-old girl who’d had a successful transplant and was taking part in the 60 metre dash,” she says. “The expression on their faces as she pounded towards them will stay with me forever – as will a man weeping with happiness as he watched his little boy play tennis.
“What Anthony Nolan does for families is what makes me love my job and makes me even more determined to provide the same for others.”
Chiara feels a great responsibility not just to the patients but to the financial supporters of Anthony Nolan who make the work possible. “In terms of recovery, we have two main aims,” she says. “Funding clinical trials, which are key to success, and also to provide equity of access to dedicated care. These supporters make that work possible and in turn save so many lives, so it’s hardly surprising that I’m always saying: is this a good use of our money? Would Shirley approve? I think she would.”
Without your support, there is no cure
This article is an advertisement feature for Anthony Nolan.
Every day, Anthony Nolan matches incredible individuals willing to donate their stem cells or bone marrow to people with blood cancer and blood disorders who desperately need lifesaving transplants.
You can help save more lives. Every financial donation helps give more people with blood cancer a second chance of life. Without your support, there is no cure.
Visit anthonynolan.org/savelives and help save lives today.