Charity urges policymakers to prioritise mental health support for transplant patients
- Stem cell charity Anthony Nolan is calling on health leaders to place at least one clinical psychologist in every UK transplant centre
- New report published by charity highlights that one in five stem cell transplant patient suffers from PTSD and one third suffer with anxiety and depression
- Despite this, just 17 percent of transplant centres in the UK have a dedicated psychologist and only 40 percent offer psychological screening
A specialist clinical psychologist should be embedded in every UK transplant centre to address the severe emotional challenges experienced by patients, the UK’s leading stem cell charity Anthony Nolan has said.
It follows a report, ‘How we can improve the mental health and wellbeing of cell therapy patients’, published by the charity today (4 June 2025), which reveals that almost half of all patients experience anxiety before treatment, one third develop symptoms of depression during or after treatment and one in five suffer post-traumatic stress disorder (PTSD).
Prolonged periods of hospitalisation, isolation and financial worries are among the most common causes of mental health challenges.
Despite international guidelines - drawn up by the Foundation for the Accreditation of Cellular Therapy (FACT) and the Joint Accreditation Committee (JACIE) - stating that stem cell transplant and CAR-T patients should be provided with adequate psychological support, there remains huge disparity across the UK in terms of accessibility, continuity and quality of support.
Just 40 per cent of transplant centres in the UK offer routine psychological screening before transplant or cell therapy and only 17 per cent have a dedicated psychologist.
Yasmin Sheikh, head of policy and public affairs at Anthony Nolan, said: “While a stem cell transplant has the potential to be lifesaving, the treatment also carries significant risk of immediate complications and long-term challenges, including infection, organ damage and immunosuppression. Patients are required to remain in isolation to avoid infection, often leading to intense feelings of loneliness and disempowerment.
“Addressing and treating an individual's mental health improves recovery, quality of life and clinical outcomes. The significant lack of provision uncovered in this report means we are failing patients.
“While as a charity we are proud to fund a handful of clinical psychologists within the NHS, the responsibility should not solely be on charitable organisations to provide this much-needed service.”
Families and caregivers are also affected and often experience high levels of stress, fatigue and financial strain, according to the report.
Stem cell donors, especially those donating to family members, are also affected, with many experiencing anxiety, fear, responsibility and sometimes guilt if things do not go to plan.
In the wake of these findings and amid rising concerns that many NHS services are under threat due to financial pressures, Anthony Nolan is urging policymakers and healthcare leaders to ensure there are specialist clinical psychologists in every UK transplant centre. The charity is also calling on NHS commissioners to empower all patient-facing staff working in stem cell transplantation to support the mental health of patients, families and donors, expand peer support and increase access to psychosocial support to families and sibling donors.
A stem cell transplant is a potentially curative treatment for blood cancers and blood disorders. The procedure involves replacing a patient’s stem cells with those of a tissue type-matched donor, which then go on to produce healthy blood cells in the recipient. Many patients also receive a transplant using their own stem cells. CAR-T therapy is a newer type of cancer treatment that modifies a patient’s own T-cells to destroy cancer cells. There are around 3,650 stem cell transplants and 300 CAR-T procedures performed in the UK every year.
CASE STUDIES:
Baby Opie Jones, from Cambridgeshire, was just five months old when he was diagnosed with B-ALL, a fast-growing cancer that can spread quickly through the bloodstream and affect other tissues and organs. After initial chemotherapy treatment failed, he underwent a stem cell transplant followed by CAR-T therapy in 2021.
Lucy Ellerker-Jones, Opie’s mum, found herself in an endless cycle of hospital stays with her son, which meant she was separated from her husband and their other children for long periods of time.
She said: "One day, you’re living your normal life, and the next, you’re in a hospital, completely separated from everything familiar. You adapt because you have to focus only on getting through each day. But you don’t realise the psychological toll until much later—by then, it’s too late to change anything.
“During Opie's stem cell transplant I was with my son 23 hours a day, surrounded by noise, with no real space to process what was happening. And when we finally came home, the impact didn’t just disappear. That first year after… that’s when I needed help the most. I felt lost."
The psychological support Lucy and her family received throughout Opie’s treatment was varied, but as soon as the treatment journey ended, any support they had received all but disappeared.
“That’s when I needed it most,” she said. “It’s hard to explain how life after treatment feels – it's like emerging from a bubble into a new normal you never wanted. The trauma doesn’t end when treatment does.
“Looking back, there is so much that could have been done differently. My whole family struggled, and I have since privately funded therapy for all of us. A dedicated psychologist following us through the journey would have been invaluable, as would access to emotional support.”
The Opie Jones Foundation, set up by Lucy in 2023, advocates for better mental health support for families whose loved one is going through cell and gene therapy treatment.
“Opie is still cancer free and getting ready to start school! We are grateful everyday to have him here,” Lucy concluded.
_______________________________
Jeremy Sawyer, 40, from London, was diagnosed with non-Hodgkin lymphoma in 2019. He was treated with a stem cell transplant using his own cells and then, following a relapse in 2020, with a transplant using cells from his brother. Jeremy has been shielding since.
"I wish I had accessed psychological support earlier in my treatment. It would have helped me prepare for both the acute and the long-term impacts that were to come. The care I received was absolutely amazing, but it was very much geared towards keeping me alive - it felt like the impact on my mental health and my quality of life after treatment was a secondary consideration."
"I first spoke to an Anthony Nolan funded psychologist in 2020, and speaking to someone who has experience with both people in similar situations and who also understands the healthcare system has been really helpful. Before speaking with my psychologist, I felt like I was falling apart, but I have learned that those feelings are not an overreaction. They are an appropriate reaction to the situation you are in. The stability offered by speaking to a physiologist has been invaluable to me."
_______________________________________
In May 2022, Kathi Leon’s son Oscar underwent a bone marrow transplant just before his eighth birthday for an extremely rare blood disorder – Diamond Blackfan Anaemia Syndrome (DBAS) – that he was born with.
Before transplant, Oscar had endured years of blood transfusions, sometimes up to three times a week. Following the procedure, he spent almost a year in hospital facing life-threatening complications.
“It was one of the most traumatic periods of our lives,” said Kathi. “During that time, I wasn’t just Oscar’s mum — I became his full-time carer, medical coordinator, advocate and emotional anchor, all while trying to hold our family together.”
But the trauma didn’t end when Oscar left hospital. In fact, Kathi explained, that’s when the hardest part began.
“Most people assume that once you’re home, things return to normal — that everything is fine and you’ve made it. But the truth is, everything feels broken. We had to rebuild every part of our lives — emotionally, physically, financially, socially — and as a family. We did it alone.”
According to Kathi, psychological support was not offered as part of Oscar’s care pathway. The family had to source and fund therapy themselves — for him, for his younger sister, and for both parents — at times costing over £1,000 per week.
Kathi believes strongly that this should not be left to chance or personal resources. She is calling for every transplant patient and their family to have access to specialist psychological care as part of routine treatment — before, during and long after hospital discharge.
“There needs to be a much more holistic approach,” she said. “Physical health cannot be treated in isolation. Failing to provide psychological care not only harms recovery but increases pressure on the health system later on.”
Oscar, now in remission, still lives with complications including graft-versus-host disease (GvHD), and requires lifelong monitoring. He’s about to start secondary school and, like many children recovering from intensive treatment, faces emotional, physical and social challenges — challenges he shouldn’t have to face without support.
“No family should carry this trauma alone, said Kathi. “Mental health care support for the whole family must be part of the treatment plan. Not just during the hospital stay, but long after. Psychological care should be standard - not optional - for every family going through transplant.”
___________________________________
Remmy Jaiyeola, 38, from Colchester in Essex, was born with sickle cell. Her main symptoms were severe joint and chest pains which resulted in many hospital admissions and check-ups throughout her life.
In February 2015, when she was aged just 27, Remmy suffered a stroke as a direct result of the illness. For the next six years, under the care of a team at University College Hospital in London, she underwent exchange transfusions, whereby cells in her blood were replaced with donor blood cells, every six weeks.
But in 2019 she was offered the chance of a stem cell transplant, and she found out that her younger brother, who is five years her junior, was a 100% match. The operation was delayed because of Covid but in October 2021 she became one of the first people in the UK to undergo the procedure for sickle cell.
The operation went well and has been life-changing for Remmy and her family but mentally she found it very difficult. She was offered one 45-minute counselling session before the transplant but nothing afterwards. Eventually she decided to pay for her own therapy as the fear and isolation were over-whelming.
“It was very frightening,” she said. “I felt extremely unwell and completely run down and it really felt like I was not in my own body. I also had quite a few adverse reactions such as very swollen legs and a rash. All that combined with not being able to see my friends and family for weeks on end became too much.”
Remmy says she was lucky because her nurse was very supportive, but she would have appreciated having the support of someone not directly involved in the treatment.
She said: “Having someone to speak to throughout the process would have been invaluable, just knowing someone is there to help you navigate through it all would be so reassuring.”
Her gratitude to her ‘baby’ brother is immeasurable. “He didn’t think twice about donating and for that I am so grateful.” She says he coped very well but their mum would have benefited from some psychological support as she struggled to understand what was happening at times.
___________________________________
Dr Nicholas Hudson, an Anthony Nolan-funded clinical psychologist, said: “A stem cell transplant is more than just a medical procedure—it’s an emotional journey filled with hope, uncertainty and challenges. While it can offer a second chance at life, it also brings anxiety, isolation and the weight of the unknown.
“Psychological support isn’t just beneficial; it’s essential. Helping patients process their fears, navigate the ups and downs and feel truly supported can make all the difference in both their recovery and overall well-being."
_______________________________________
To read more about improving the mental health and wellbeing of cell therapy patients, click here
To learn more about Anthony Nolan’s patient advocacy, research and history, or to join the Anthony Nolan donor register, visit: www.anthonynolan.org
ENDS
For more information, and to enquire about media interviews, please contact the Anthony Nolan press office using press@anthonynolan.org or 020 7424 1300.
Out of hours, contact the duty press officer on 07881 265 285.
NOTES TO EDITORS
Please note: Anthony Nolan changed its name in 2011 and is no longer known as Anthony Nolan Trust.
About Anthony Nolan
Anthony Nolan is a UK stem cell transplant charity with 50 years of expertise in uniting science and people to push the boundaries of what can be achieved for blood cancer and blood disorder patients.
Its world-leading stem cell register matches potential donors to patients in need of transplants. It carries out cell and gene therapy research to increase transplant success and supports patients through their transplant journeys.
Anthony Nolan helps four people in need of a transplant a day, giving more people a second chance at life. But the charity won’t stop until all patients have access to the treatment they need, so many more survive.
Stem cells hold enormous potential and have the power to help people with blood cancers and blood disorders. This potential inspires everything Anthony Nolan does. Driven by patients, backed by stem cell donors, and powered by science, the charity won’t stop until the lifesaving potential of the cells inside us all has been uncovered.
Join Anthony Nolan’s register or support its research. Together, with your help, Anthony Nolan can unlock the answers inside us anthonynolan.org
What is a stem cell transplant?
If a patient has a condition that affects their bone marrow or blood, then a stem cell transplant may be their best chance of survival. Doctors will give new, healthy stem cells to the patient via their bloodstream, where they begin to grow and create healthy red blood cells, white blood cells and platelets.
Key statistics
- Since it was founded by Shirley Nolan in 1974, Anthony Nolan has facilitated over 26,500 transplants for people around the world.
- The charity facilitates around 1,100 stem cell transplants from an unrelated donor every year for patients in the UK and more than 300 for patients abroad. For many, a transplant is their last chance of survival.
- Around 90% of donors donate through PBSC (peripheral blood stem cell collection). This is a simple, outpatient procedure. Donors are supported throughout the process by the Anthony Nolan team.
- Currently 16% of the UK Anthony Nolan stem cell register is made up of young men, but they account for more than half of people called upon to donate.
- There is a pressing need to recruit more people from diverse backgrounds to the Anthony Nolan register, to help more patients from minority ethnic backgrounds find the lifesaving matches they need.
- Blood cancer is the fifth most common type of cancer in the UK and the third biggest cancer killer. It accounts for 9% of all new cases of cancer diagnosed in the UK.
- Sickle cell disease (SCD) is a group of inherited blood disorders that affect the red blood cells in your body.
- It mostly affects people from African and Caribbean backgrounds and can be diagnosed soon after birth.
- People with SCD produce red blood cells in the shape of a ‘sickle’. These unhealthy cells stick together and get stuck in blood vessels, blocking the flow of healthy blood cells, which can cause various health complications and acute pain episodes
- To join the Anthony Nolan register, you must be 16-30 and healthy. Anthony Nolan’s world-leading Research Institute has shown younger donors offer better survival rates for patients.