The children's cardiac care team consists of clinical nurse specialists (CNS) in fetal cardiac care, children's cardiac care, electrophysiology and transition care. Each nurse is highly trained and experienced in caring for children with cardiac disease.
Clinical nurse specialists - fetal cardiac care
- Susanna de Sousa
- Julieta Lumanisakio
- Pilar Moura
The fetal nurse specialists aim to be present in the fetal cardiology clinics held at Royal Brompton, Chelsea and Westminster, St George's, and Queen Charlotte's and Chelsea hospitals. The nurses work with pregnant women and their partners at the point of diagnosis of a heart abnormality, providing information which helps in understanding the diagnosis and empowers parents in their decision-making process. They offer support throughout the pregnancy, and work in partnership with the local teams and referring midwives to ensure consistent management during pregnancy and during the postnatal period.
Parents are invited to visit the cardiac unit ahead of their baby’s birth to prepare them for any planned admissions and surgery. They may do so individually or attend as part of an antenatal group session, run by the fetal nurses and The Brompton Fountain charity.
In the postnatal period, care of the baby is handed over to the children’s cardiac care team to ensure support continues and continuity of care is maintained.
- Fran Cox
Elena Karagodova – specialist in Kawasaki disease
The specialist nursing team works with children and their families giving expert advice and support from the time of diagnosis through to discharge from the cardiac service or transition to adult services.
The team's services extend beyond the hospital, into the local community, providing home and school visits when necessary. They liaise with health visitors, school nurses and children's community nurses to coordinate care to ensure children and their families are supported. Alongside the paediatric cardiologist, the team attends cardiology clinics in our network hospitals to ensure that children referred to these clinics have access to expert advice and information. They also act as an expert resource for healthcare professionals in local hospitals and primary care trusts. The team issues school care plans for children with complex needs.
Elena is the nurse specialist in the care of children with Kawasaki disease, providing support for children and families in clinic, by telephone, and by issuing emergency care plans and school care plans. Elena oversees the anticoagulation management for this group of patients.
Liz Johnson is the link nurse within the team for overseeing anticoagulation management and training patients and parents in the use of the home testing coagulation machine.
The clinical nurse specialists hold nurse led clinics to see patients at specific points in their care pathway, for example at diagnosis and post-operatively.
CNSs are also key in the transition process for young patients who are growing into adulthood. They provide support, advice, education for hospital staff and colleagues in the community, with whom they work closely. A transition nurse works collaboratively with the children’s team to facilitate the transition process.
Read about the children's cardiac care services at the Trust.
Children treated for arrhythmias, heart rhythm problems, are cared for by their own clinical nurse specialist.
Support, counselling, and information is given about arrhythmias and inherited cardiovascular disease to children and their families who are affected by acquired, congenital and inherited cardiac conditions resulting in arrhythmia.
Education and support is provided to local hospitals, schools and other professionals, such as health visitors and school nurses, who are involved in a child's care, so that they are comfortable in managing the child’s symptoms.
A nurse-led arrhythmia clinic has been set up, which runs alongside the consultant clinic and is enhanced through non-medical prescribing, which means Catherine is able to prescribe medications for those patients seen in the nurse-led clinic.
Catherine is also the lead nurse for inherited cardiac conditions.
- Virginia Castro Meira
- Loredana Haidu
- Adrienne Cottam (covering for Jos Fox during maternity leave)
The transition nurses work with children and their families from the age of 12+ to develop a care pathway with them and start the preparation for transfer to adult services, with the aim of minimising emotional distress.
The service is nurse-led and the young person can either come on their own, or with their parents or carers. The care pathway is extensive and addresses issues specific to the teenager/young adult, such as independence. We try to get them to think about their independence by addressing social and psychological issues, and providing information on their heart condition and medication.
Confidentiality and consent are also discussed with patients and their families. This is a good way to inform and prepare them for the adult service.
The young patients should ideally be seen three times before they transfer to the adult congenital heart disease team. The model of a 'ready, steady, go' approach is in place within the care plan. A checklist is completed, before the medical transfer, to help analyse the patient's knowledge and capacity for self-care and consent. The transition service will support adolescents and young adults until their 25th birthday, when the ACHD CNSs take over their care.
Children's cardiac care contact details:
Telephone: 020 73497727