The transplant team that gives patients a second chance at life
Meet the team in charge of co-ordinating organ transplantation at Addenbrooke's Hospital.
Every day, Stephen Bond and Jackie Perhar see how organ donation gives patients a second chance at life.
Stephen is the lead nurse in charge of the transplant co-ordination team at Cambridge University Hospitals (CUH), while Jackie is an experienced lead bowel transplant co-ordinator.
The 15-strong transplant co-ordination team is largely unknown, but it plays a life-saving and highly-pressurised behind-the-scenes role.
“We’re that first port of call for the patients – whether it is being assessed for transplant, being managed on the waiting list, or if they’ve had their transplant. We’re the glue that holds it all together,” said Stephen.
Often described as being the “air traffic controllers” of the transplant world, if there is a problem, the transplant team fix it.
The team is made-up of specialist nurses who assist more than 300 patients a year, who receive replacement livers, pancreas, small bowels, or kidneys.
They are on call 24 hours a day, seven days a week, 365 days a year, and support specialist surgeons to ensure every step of the transplant process goes smoothly from the moment a donor organ becomes available, to the transplant itself, and follow-up care.
As CUH is a national transplant centre, patients can live anywhere, from Jersey to Scotland, and rapid transport must be arranged. Some patients come under their own steam, some by ambulance and others by air ambulance. On one occasion, a patient was airlifted from a cruise ship.
“We’re the port of call for Addenbrooke’s for organ offers, nationally. So, there may be an organ somewhere in the country, we’re the people that get that call,” Stephen explained.
“It’s a lot of juggling. We might have three or four organs coming in at the same time from different hospitals, so you have to be methodical.”
He continued: “We work out all the information about the donor and we then discuss it with the surgeons and the medics as well and help facilitate who that organ will go to. Once we’ve agreed that the donor organs are acceptable, and we’ve agreed on the recipient, we then organise getting everyone in the right place at the right time to perform the transplant.”
The organ must be recovered, so the team arranges the speedy delivery – or retrieval – by the hospital’s dedicated retrieval team. It includes two surgeons and a scrub nurse, who may have to go anywhere in the UK at a moment’s notice.
At the same time a theatre and surgical teams must be booked, and a bed found in intensive care and/or the specialist ward on the fifth floor of Addenbrooke’s Hospital.
The co-ordinators, who may have organised the patients’ initial assessment months or years ago, will look after them throughout their stay in hospital and welcome them back if they need follow-up treatment. Sometimes this relationship can last for years.
“That’s what makes your job special because you do build up a big bond with the patient,” Jackie explained. “Some of the patients I’ve known the whole time I’ve been doing this job for five years. You become their extended family in some ways. They do rely on you and you’re their support, which is the lovely part of the job.”
Stephen added: “For me, I see a lot of patients post-transplant when they are back out in the community and you’ve seen them on a ward three or four years ago, and you don’t see them after that, and then they come up to you. Although we don’t necessarily remember them, we stick in their mind.”
The nurse co-ordinators each specialise in one area – liver, pancreas, small bowel, or kidneys, but are expected to deal with all disciplines when on call. It is a very specialist area, and a vocation for most.
A milestone moment is when the team rings a patient, which can be at any time of the day or night, to say an organ has become available.
The potentially life-changing news can, quite literally, leave some patients speechless. Part of the job involves managing expectations, since there is always a possibility an organ may not be suitable or viable after all.
“I was petrified,” said Jackie, of her first call. “A lot of people go into shock,” she continued. “You get a lot of silence to start with. Or they pass you on to their partner. A lot of the time its 2am or 3am and you have to call them a couple of times for people to answer, hoping that they answer.”
Stephen explained that on one occasion, a woman who had been waiting for a kidney transplant for more than seven years wasn’t answering the phone.
The team knew she was hard of hearing and she was only woken up by a policeman up a ladder knocking on her bedroom window – organised by the team.
“The stressful part of the job is the 24 calls when for that 24 hours you might not sleep, you’re lucky if you can get a bit of lunch, and you are juggling a lot of things,” said Jackie. “But, that’s also the rewarding part, if you come in from a 24-hour shift and you know someone is having a transplant, then that’s the great part and the lack of sleep is worth it.”
The team enjoys close links with NHS Blood and Transplant, the national body that improves the supply of donated blood, organs and tissues, and the Royal Papworth Hospital, which is the country’s main heart and lung transplant centre.
The government is consulting on introducing presumed consent for organ and tissue donation in England, with the option to opt out. Visit gov.uk/government/consultations.