Children's haematology, blood and marrow transplantation

West London Children's Healthcare

Locations

St Mary's Hospital

Contact

Outpatients appointments: 020 3313 5000
General Enquiries: 020 3312 6164

Visitor Information

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About

Our paediatric haematology, blood and marrow transplantation unit at St Mary’s Hospital specialises in the care of children with haemoglobinopathies and red cell disorders, bone marrow transplantation and bone marrow failure syndromes.

We provide a comprehensive service for the medical management of children with sickle cell disease and thalassaemia, including a dedicated teenage and young adult transition service. We are the specialist haemoglobinpathy centre in the Paediatric Imperial Red Cell Network, providing tertiary services to local patients and outreach services to haemoglobinopathy patients at hospitals across north west London and the Thames Valley.

The Trust’s paediatric haemoglobinopathy service was ranked the top provider in terms of meeting national quality standards by the West Midlands Quality Review Service in their 2014–16 peer review of services for haemoglobin disorders. We have excellent ’cradle to adult’ care pathways for children with haemoglobin disorders, with robust transition services.

The bone marrow transplant unit has four dedicated transplant cubicles with HEPA filtration and positive pressure control. It carries out 34 to 37 allogeneic transplants a year (both related and unrelated donors) in children with thalassaemia, sickle cell disease, aplastic anaemia, Diamond Blackfan anaemia, Fanconi anaemia, dyskeratosis congenita and other inherited bone marrow failure syndromes. The transplant team has undertaken several innovative transplants using alternative donors for children with haemoglobinopathies and bone marrow failure.

After discharge from the inpatient ward, children are looked after by an expert multidisciplinary team on a dedicated, purpose-built day care unit which is reserved for immunocompromised patients and includes facilities for protective isolation. We also have a comprehensive and dedicated joint specialist service for long-term follow up for recepients of a bone marrow transplant with a consultant haematologist and consultant endocrinologist.

Our service includes the only level two shared care paediatric oncology unit (POSCU) in north west London and sees 20 to 25 new patients with malignancies each year. Patients are looked after by a specialist team led by paediatric haematology consultants with paediatric oncology clinical nurse specialists, in close association with Great Ormond Street Hospital and University College London Hospital. We offer all aspects of supportive care and day care chemotherapy for children.

The service also manages children with bleeding disorders and thrombotic problems. We offer specialist paediatric transfusion advice and provide high-level shared care for children with malignancies.

Conditions we treat

The team provides specialised care for:

haemoglobinopathies – sickle cell disease and thalassaemia
bone marrow failure
bone marrow transplantation
paediatric oncology
general paediatric haematology
haemostasis and thrombosis

Treatments we offer

Bone marrow transplants – sibling and matched family donor transplants, alternative donor transplants with unrelated matched and mismatched transplants, haploidentical transplants
Level two care for paediatric oncology patients, including infusional, day care and bolus chemotherapy, supportive care and blood product transfusions
Tertiary care for patients with haemoglobin disorders, including automated red cell exchange transfusions (erythrocytaphaeresis), top-up blood transfusions, hydroxycarbamide and iron chelation therapy, surgery, paediatric intensive care and 24 hour paediatric emergency department.

Further online resources

Sickle Cell Society
British Society of Blood and Marrow Transplantation
Human Tissue Authority
Public Health England
NHS England
Anthony Nolan Trust
CLIC Sargent
Thalassemia Society United Kingdom

Clinics

Our children's haematology, blood and marrow transplantation service holds clinics at St Mary's Hospital for children with sickle cell and thalassaemia.

Transfusion times

Transfusions are held during clinic hours, and are only available by appointment.

Clinical nurse specialist
Phone: 020 3312 5023

Dr Petterson’s secretary
Phone: 020 3312 6157

Meet the team

Our children's haemotology, blood and marrow transplantation service is managed by a team of consultants and clinical nurse specialists.

Consultants

Dr Josu de la Fuente, consultant paediatric haematologist, director of blood and marrow transplantation service
Dr Leena Karnik, consultant paediatric haematologist, clinical lead
Dr Toni Petterson, consultant paediatric oncologist
Dr Kirstin Lund, consultant paediatric haematologist
Dr Nichola Cooper, consultant haematologist
Dr Adam Gassas, consultant paediatrician

Clinical nurse specialists

Catherine Mkandawire, matron for haemoglobinopathies and apheresis
Ana Cabrera, clinical nurse specialist oncology and haematology
Yvonne Harrington, clinical nurse specialist Diamond-Blackfan anaemia
Kajal Rai, clinical nurse specialist haemoglobinopathies
Nancy Huntley, paediatric apheresis nurse specialist
Ristell Fernandes, paediatric apheresis nurse specialist

Paediatric bone marrow transplant coordinators

Sandrine Bremathas
Calum Lyon

Patient information

Find out what to expect when you come to hospital for your child's haematology, blood and marrow transplantation appointment.

Before your appointment

Please remember to bring your child’s 'red book' with you to the appointment. During appointments we will always ask about your child’s recent vaccinations and the 'red book' helps to work out which vaccinations are still due.

If your child receives regular blood transfusions at another hospital and you only come to St Mary’s Hospital for occasional specialist reviews, please remember to bring with you your handheld clinical record book (if available) or a list of your child’s medication, recent blood results, and if possible, the amount of blood they have received in the last few months.

Please be aware that your child may be on special medicines that can only be prescribed by their consultant and some of these medicines can only be prescribed if your child has regular blood tests.

Please also remember to check your appointment letter for anything specific you have been asked to bring with you.

In addition, it would be helpful if you could bring the following:

Your full address and telephone number(s)
Your appointment card and appointment letter
Your GP’s name and address
A list of questions you may want to ask your consultant

During your appointment

The appointment normally lasts around one hour for a new patient or 30 minutes if it is a follow-up appointment. There may be blood tests to complete afterwards.

During the appointment a consultant paediatric haematologist will provide a comprehensive assessment of your child's condition. In order to minimise the number of hospital visits, we will arrange as many investigations as possible to take place around the same time as the appointment. These investigations are coordinated by our paediatric haematology clinical nurse specialists.

All blood tests are done by a dedicated phlebotomist while your child is in the clinic. Some children may need specialist investigations such as transcranial Doppler (TCD) scans, spirometry, x-rays and ultrasound scans. These are arranged on the day of your appointment. MRI scans, psychology, and hearing assessments can also be arranged for the same day.

Please note that we are a teaching hospital, so medical students may be present for some consultations. If you do not wish to have them in the room please let the nurse or doctor know and the students will be asked to step outside.

All paediatric haematology clinics are supported by the outpatient play specialist team to improve the child's experience. We also have a dedicated paediatric pharmacy service for clinic patients.

After your appointment

You and your child will be given clear written guidance regarding follow-up appointments and contact numbers for clinical nurse specialists and secretarial staff. A written summary of the consultation will be sent to you, the referring doctor and your GP.

Ward information

If your child is admitted for sickle cell or thalassemia disorders they will likely be admitted to Great Western Ward. If your child is admitted for bone marrow transplantation they will likely be admitted to Grand Union Ward.

Please visit our wards page for visiting times, protected meal times, contact details, simple directions and further information about our wards.

Patient information

Refer to this service

Find out how to refer patients to our children's haematology, blood and marrow transplantation service.

GP referrals

Please use NHS e-Referrals to refer a patient to our children's haematology, blood and marrow transplantation service.

The bone marrow transplant and bone marrow failure clinics usually see referrals from consultant paediatricians.

Infants diagnosed via the neonatal haemoglobinopathy screening service are referred to the haemoglobinopathy clinic.

Two week wait cancer referral

Urgent cancer referrals can be made via the two week wait referral pathway.

GP enquiries

To discuss any paediatric haemoglobinopathy or haematology patient, please call 020 3312 6157.