The service, which prevents families being separated, was officially launched on Monday, 25 September at a celebration where guests included the first patient to benefit, 15-year-old Will Grocott from Baldock, Herts.
Will, who has acute myeloid leukaemia (AML), received a bone marrow transplant thanks to his sister Libby, 17, and is now under the dedicated care of the service, the first of its kind to be set up in the UK in years.
In a joint statement, dad Dan, mum, Jen and the children, welcomed the service, emphasising how important it is to stay close to one another and known clinicians during the transplant process.
They said: “Dealing with leukaemia, not once, but twice with the same team, has been such a big deal to us. Having those relationships really helped us cope with some very difficult situations.
“Having the bone marrow transplant at Addenbrooke’s made a huge difference to us. It was our team, and we didn’t have to split the family up, just when we needed each other the most. We cannot thank the team enough.”
The service is being led by a 20-strong group of doctors, nurses, clinical nurse specialists, dieticians, pharmacists, psychologists, play teams, physiotherapists, occupational therapists, specialist clinical scientists and others, and made possible thanks to NHSE funding of around £1.5m a year.
Bone marrow transplantation is a complex and high risk intervention that is usually reserved for when other potential treatment options have failed, but it can be lifesaving for those who need it. Young patients undergoing bone marrow transplant are extremely vulnerable and typically have prolonged periods of isolation in hospital.
In the East of England young patients, who may have already been cared for by CUH for years, have been historically referred to Bristol, London, or even further afield, to one of the UK’s 12 paediatric transplant centres, where they might stay for three to six months while undergoing the treatment.
The service at CUH means the children do not need to be separated from either their family or the clinical teams they have come to know.
Haematopoietic stem cell transplant (HSCT), often called bone marrow transplant, is a lengthy and complex procedure during which a patient's bone marrow – a kind of human factory for making blood cells - is eliminated using chemotherapy. It is then replaced with stem cells from either a healthy donor (called an allogeneic transplant), or using cells collected earlier in time from the patient (called an autologous transplant).
Haematopoietic (bone marrow) stem cells can be harvested from the bone marrow in the pelvis, under a general anaesthetic, or from the blood stream. To collect stem cells from the blood, the donor is given drugs that stimulate bone marrow activity. In children having allogeneic transplants, bone marrow is the preferred source of stem cells, whereas peripheral blood collections are often used to obtain stem cells from young patients who need an autologous transplant.
Both collection methods require the harvested product to undergo processing in a stem cell laboratory before the cells are then given back to the recipient intravenously, like a blood transfusion.
A donor to patient transplant requires a hospital admission of six to eight weeks, during which up to one in four patients may need support in the Paediatric Intensive Care Unit.
This period is typically followed by several weeks of ambulatory care during which families stay in local accommodation supported the Rhys Daniels Trust and come to the hospital for a daily review. Patients have long-term follow-up on the paediatric day unit, which will be gradually spaced out over time.
CUH associate director of operations, Amanda Cahn, said: “We are thrilled to receive funding for this service, which will be of major value to young patients and their families from all over the East of England and further afield.
“It is the first unit of its kind in many years to be established in the UK and we are very grateful to NHSE for funding which relieves much of the heartache associated with travelling to other regional centres.
“The public can help us help them by considering being a donor, since without their help none of this life-saving treatment would be possible.”
CUH Consultant Paediatric Haematologist and specialty lead Dr Emmy Dickens added: “For many years we have had to refer our paediatric patients to other hospitals across the country for this most intensive and high risk element of their treatment. It is wonderful to now have the opportunity to make use of the existing skills and experience within the Trust, with additional NHSE funding to bring in new staff to look after our own patients closer to home.”
The paediatric Bone Marrow Transplant service will move into the new Cambridge Children’s Hospital when it opens, with dedicated beds and facilities on the oncology ward. The children’s hospital will be the first specialist children’s hospital for the East of England. the East of England.
Anyone interested in becoming bone marrow donors should register via the Anthony Nolan charity
Image: Will Grocott and family
