The teams of clinical nurse specialists (CNSs) are specialists in their area of care and are here to help you and your family medically, practically, and emotionally. CNSs work with the children and their families from diagnosis, and the foetal nurses begin their support before the child is born. Some nurses, such as the Cystic Fibrosis Team, first meet the family in the home when a baby has been diagnosed by newborn screening.

CNSs are essential in our community. They support young patients transitioning to adulthood and learning to manage potential lifelong illnesses. They also provide vital education and advice to our wider teams, helping to educate us in their area of expertise.

Our CNSs provide our families with everything they need, including managing the implications of a diagnosis on your child, their education and family life. In addition, they can put you in touch with health professionals, support organisations and talk to your child’s school regarding any support they may require.

You will find contact details of CNSs on the left, but if you are worried about the health of your child, you should contact your GP or call 999 in an emergency.

All children with cardiac conditions will be allocated a specialist nurse to help them with the many practicalities of caring for a child with a heart condition. The child’s diagnosis will determine whether this is a brief intervention or a long-term relationship with the CNS team. If it is a more severe condition, a CNS will help the child and their family navigate the often complex journey of treating and living with their illness.
The children’s Cardiac Care Team comprises clinical nurse specialists (CNS) in Foetal Cardiac Care, children’s Cardiac Care, Electrophysiology, and Transition Care.

Network Lead Nurse, Congenital Heart Disease
– Susana De Sousa

Lead Nurse, Congenital Heart Disease
– Virginia Castro Meira

All children with cardiac conditions will be allocated a specialist nurse to help them with the many practicalities of caring for a child with a heart condition. The child’s diagnosis will determine whether this is a brief intervention or a long-term relationship with the CNS team. If it is a more severe condition, a CNS will help the child and their family navigate the often complex journey of treating and living with their illness.

The children’s Cardiac Care Team comprises clinical nurse specialists (CNS) in Foetal Cardiac Care, children’s Cardiac Care, Electrophysiology, and Transition Care.

Network Lead Nurse, Congenital Heart Disease 

• Susana De Sousa

Lead Nurse, Congenital Heart Disease 

• Virginia Castro Meira

Fetal Nurse Team

The Foetal Nurse Specialists work in the foetal cardiology clinics held at Royal Brompton, Chelsea and Westminster, St George’s, and Queen Charlotte’s and Chelsea hospitals. The nurses liaise with pregnant women and their partners when diagnosing a heart abnormality, providing information that helps understand the condition and empowers parents in their decision-making process. In addition, they offer support throughout the pregnancy and work in partnership with the local teams and referring midwives to ensure consistent management during pregnancy and the postnatal period.

Parents are invited to visit the cardiac unit before 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 foetal nurses and our charity.
During the postnatal period, care for the baby is handed over to the children’s Cardiac Care Team to ensure support and continuity of care.

Clinical Nurse Specialists 

• Alice Ciovina
• Julieta Lumanisakio
• Daifenir De La Cruz
• Sophie Tooth (nee Dopson)

Phone: 020 7352 8121 ext 87727

Email: FetalCNSTeam@rbht.nhs.uk

Paediatrics Nurse Team 

The specialist nursing team works with children and their families, giving expert advice and support from the time of diagnosis 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 can access expert advice and information. They also act as expert an expert resource for healthcare professionals in local hospitals and primary care trusts. The team also issues school care plans for children with complex needs.

The CNSs hold nurse-led clinics to see patients at specific points in their care pathway, for example at diagnosis and post-operatively.

Clinical Nurse Specialists 

• Francesca Damant

• Mabel Adeyefa
• Sophie Shepperd
• Chloe Sutton
• Elizabeth Johnson
• Gemma Lewington

Phone: 020 7352 8121 ext 87727

Email: ccln@rbht.nhs.uk

Transition Nurse Team

The Transition Nurses work with children and their families from 12+ to develop a care pathway and start the preparation for transfer to adult services.

The service is nurse-led, and the young person can come alone or with their parents or carers. The care pathway is extensive and addresses issues specific to the teenager/young adult. They encourage them to think about their independence by addressing any social or psychological concerns and ensuring they have a comprehensive understanding of their condition and medication.

Confidentiality and consent are also discussed with patients and their families to inform and prepare them for the adult service.

The young patients should be seen three times before transferring to the adult Congenital Heart Disease Team. The model of a ‘ready, steady, go’ approach is in place, which means before the medical transfer, a checklist is completed 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 CNS takes over their care.

Clinical Nurse Specialists 

• Loredana Haidu
• Danielle Horler
• Michelle Lambell

Phone: 020 7352 8121 ext 88772

Email: TransitionCHD@rbht.nhs.uk

ICC Nurse Team

The CNS team’s role is to care for people and their families who suffer, are at risk, or are suspected of having an inherited cardiac condition (ICC). These conditions include Cardiomyopathy, Inherited Arrhythmia, and Aortopathy.

The team comprises adult and paediatric trained nurse specialists who provide seamless support, advice and education from childhood through adulthood.

The CNS team is involved in over ten consultant-led Cardiomyopathy, Inherited Arrhythmia and Aortopathy clinics weekly, with care extended to inpatients undergoing diagnostic evaluation or therapies and outpatient support.  

The CNS team also acts as an expert resource to GPs, cardiologists, other nurse specialists, and healthcare professionals.

The ICC Clinical Nurse Specialist Team also have several nurse-led initiatives, including:

• Four nurse-delivered virtual clinics a week.
• A nurse-led ICC transition service, including a dedicated transition clinic, once a month.
• ICC patient days.
• ‘Coffee-mornings’ for children and parents.
• Hosting an annual ‘ICC nursing and allied health professional study day’ since 2013.

In addition to helping patients and their families through the investigative and diagnostic screening process, the team also help with the management and relief of symptoms. In addition, they help to gauge the risk of sudden cardiac death (SCD) and provide much-needed advice and education on lifestyle adjustment. This includes further support to parents, schools, employers and other community-based organisations. 

Much of the team’s work involves genetic counselling and supporting the dedicated genetic counsellors. This scientific-based form of counselling provides psychological support throughout a patient’s lifelong care. It also helps to demonstrate and explain risk through recognising family inheritance patterns and genetic information, which could trigger clinical screening for other family members identified as at-risk.

The team also engage in research and patient experience initiatives to improve our ICC services and education. We teach nurses, doctors and other allied health professionals, internal and external to our organisation, to educate other health care professionals concerning ICC.

Clinical Nurse Specialists

• Bethan Cowley – Lead nurse Inherited Cardiovascular Conditions (ICC)
• Lucy Barrington
• Sami Collins
• Lucy Green
• Dan Blacker

Phone: 020 7352 8121 ext 82205

Email: rbh-tr.iccnurses@nhs.net 

Electrophysiology  Nurse Team

Children treated for arrhythmias, and heart rhythm problems, are cared for by their Clinical Nurse Specialists (CNS) and consultant nurse. In addition, support, counselling, and information is given about arrhythmias and inherited cardiovascular disease to children and their families affected by acquired, congenital and inherited cardiac conditions resulting in arrhythmia.

Education and support are provided to local hospitals, schools and other professionals, such as health visitors and school nurses, who are involved in a child’s care so they are comfortable managing the child’s symptoms.

A nurse-led Supraventricular Tachycardia (SVT) Clinic has been set up, which runs alongside the consultant clinic, and is enhanced through non-medical prescribing.

A weekly nurse-led EP transition clinic has also been set up, which prepares patients for the transfer to adult arrhythmia services and managing their condition into young adult life.

A dedicated consultant nurse and CNS telephone consultation service is also provided.

We also run a dedicated nurses and allied health professionals study day, which has been running for ten years.  In addition, we are involved in many patient initiatives, including developing patient information literature, research, and service development projects.

Clinical Nurse Specialists

• Catherine Renwick – Consultant Nurse in EP and ICC
• Dan Blacker
• Jess Capon

Phone: 020 7352 8121 ext 82868

Email: rbh-tr.paediatricepnursingteam@nhs.net 

Lead Nurse Respiratory 

• Pippa Hall

Respiratory care

The Paediatric Respiratory Nurse Specialists work with children (and their families) with non-CF respiratory diseases, including Asthma, Primary Ciliary Dyskinesia (PCD) and Bronchiectasis. They provide advice and support from diagnosis through to transition, and on to adult services.

They attend all non-CF respiratory clinics to provide education and support. They also offer telephone and email advice. In addition, the team liaises with local hospitals, community teams, and schools to ensure families are supported in the community.

Their service includes running the first stage of the Difficult Asthma Protocol, which includes a nurse-led clinic and a home visit. They also now have a PCD management service which has enabled joint visits with the PCD physiotherapist to patient’s homes and schools, setting up a session of chest physiotherapy at school where possible.

Clinical Nurse Specialists 

• Jo Gregory – NIV and Complex Care
• Laura Baynton – PCD
• Angela Jamalzadeh 
• Claire Jackman 
• Rachael Moore-Crouch

Phone: 020 7351 8714

Email: paedrespnurse@rbht.nhs.uk 

Cystic Fibrosis (CF) Nurse Team

The CF respiratory team work with children and families, providing ongoing support for managing Cystic Fibrosis. In partnership with other health professionals, they deliver a personalised service across inpatient, outpatient and care at home.

The CNSs in children’s Cystic Fibrosis care work closely with hospital and community teams. Our specialist service promotes continuity of care for around 320 children, young people and their families from diagnosis through newborn screening to transition into adult CF services.

They provide clinical monitoring, education, support and advocacy for patients in hospital, at outpatient clinics, and in the community, both at home and school.

Clinical Nurse Specialists 

• Sarah Moledina
• Jacqueline Francis
• Karen Henney
• Caroline Devon
• Hilda Senkane
• Katie Dick

Phone: 020 7351 88755

Email: paediatriccfcnsteam@rbht.nhs.uk 

Full support and information regarding breastfeeding and expressing are offered to new mothers at Royal Brompton Hospital through the Breastfeeding and Expressing Support Team (BEST).

Breast pumps, disposable bottles, and attachments are available if a baby cannot feed directly from the breast.

A staff member can teach mothers how to use the equipment and show them where the expressed milk is stored. There are dedicated facilities available for expressing on Rose ward and intensive care. The BEST team can also provide a pump to take to the parent’s accommodation.

Breastfeeding and expressing mothers can order meals from the Rose Ward food trolley. For further information, speak to a bedside nurse or nursery nurse when staying in the hospital.

The school team at Royal Brompton enables children to access education while they are in the hospital. They provide students with a broad and balanced curriculum in the classrooms or at a child’s bedside on both Rose Ward and PICU. In addition, the team can personalise learning according to students’ individual needs.

This experienced team establishes crucial links with children’s home schools to provide continuity of education, particularly essential for students who may spend many weeks of their school life in hospital. For children in the hospital, the schoolroom can offer a sense of normality; children can interact with their peers, participate in a range of academic and creative activities, have some one-to-one tuition or even sit exams if needed.

Rose Ward (4-16-year-olds)

There are classrooms on Rose Ward that are designed to maximise pupil access to education at this site. The school has a primary and a secondary classroom and a third multi-use room to support the learning needs of an individual or a group. They work with pupils by their bedside in HDU and PICU, as well as with pupils who are isolating.

To support pupil access to education,the school have developed a video conferencing solution that enables pupils in isolation to video conference with the school classroom. The teaching team consists of one full-time primary teacher, two full-time secondary teachers, and a part-time learning assistant. They also have input from specialist music, art, drama, and ICT teachers, as well as an art therapist.

Foulis Ward (16+)

On Foulis Ward, pupils over 16 have one-to-one sessions with teachers, who can liaise with their tutors at college and university. Pupils also have access to a career advisor to support them with education, career advice, and guidance.

The school is open 50 weeks of the year, closing for two weeks over Christmas. During holiday times the school runs an organised Arts and ICT programme. They are a registered exam centre ensuring that patients can sit exams even if they are in the hospital.

Contact the school

admin@cchs.org.uk

Tel – 020 7352 8121 ext 2415

Find out more by visiting the Chelsea and Community Hospital School website.

What is a Paediatric Clinical Psychologist?

Paediatric Clinical Psychologists are specialists in child development and learning. In addition, they are experts in helping children and families cope when a family member is diagnosed with a severe medical condition. You will find them working on the Rose ward, Paediatric Intensive Care Unit (Amanda Jones Ward), High Dependency Units and Outpatient Clinics. They may also work with families within their communities, including home visits when necessary. 

How do they help?

• Preparing patients for medical procedures and treatment.
• Supporting the ongoing management of a medical condition. 
• Preparing for and coping with change. 
• Dealing with behaviour difficulties as a result of a medical condition.
• Mood problems.
• Education issues such as adjusting to life back at school with a medical condition or catching up with education after a prolonged absence.
• Helping patients explain their medical condition to others. 
• Supporting parents/carers in the hospital environment.

The team will meet with a child and their parents to get to know them. They may ask the patient/carer to record their behaviour and feelings. The team would then plan treatment based on findings, including cognitive behavioural therapy, family work, relaxation, or pain management techniques. They can also help with referrals to mental health specialists near home.

Confidentiality

The Paediatric Clinical Psychologist team respects confidentiality; however, may suggest that information is shared with a child’s wider care team if they feel it may be beneficial. Assessments and treatment reports will be forwarded to a patient’s GP and hospital care team with parents/carers permission.

*Please note that the team are legally bound to contact relevant agencies if they believe a child is at-risk. 

How to get in touch

You can contact a psychologist directly by calling 0207 351 8251 or sending an email to DeptPaediatricClinicalPsychology@rbht.nhs.uk. You can also speak to a member of staff on the paediatric wards or outpatients departments who will be able to put you in touch with a member of the team.

All dietitians at the Royal Brompton & Harefield NHS Foundation Trust have a recognised degree in nutrition and dietetics and are registered with the Health Professions Council.

Dietitians work with patients to advise on matters relating to nutrition. They translate nutritional science into practical advice to help patients make appropriate diet and lifestyle choices.

Our dietitians specialise in treating nutritional problems associated with heart and lung disease. As the research into nutrition and treating heart and lung disease is constantly evolving, we ensure that our advice reflects the most recent authoritative research and published policies.

The majority of patients do not require individual dietary advice. Patients will see a dietitian if they:

• Are at risk of malnutrition
• Have a food allergy or intolerance
• Have swallowing difficulties
• Have just been diagnosed with diabetes

The Family Liaison Team, based at Royal Brompton Hospital, is a non-medical/nursing team that offers support from a child’s admission through to discharge.

It is stressful for parents and carers when a child is admitted to hospital, especially if it is a long way from home. The Family Liaison Team offers support every step of the way.

How do they help?

• Get to know you and your family. 
• Listen to any worries and concerns, and inform you of available support.
• Communicate with other hospital staff and outside agencies on your behalf. Assist with any administration, such as applying for Disability Living Allowance.
• Advise what support is available to help other children in your family while in the hospital.
• Support with financial or housing difficulties arising from your child’s admission to the hospital
• Provide bedside support for your child when you cannot be with them.

*Please be aware that they have a duty of care to speak to the relevant agencies if they are worried about you or your child.

How to find a member of the Family Liaison Team

Ask any member of staff on Rose Ward, or on the Paediatric Intensive Care Unit (PICU) and they will put you in contact with us.

You can also contact us directly

Telephone 020 7352 8121 and ask the operator for extension 8588 or for bleep 1274 or 1250.

We work 8.00am-6.00pm, Monday to Thursday.

Royal Brompton’s team of Healthcare Play Specialists and Play Assistants are there to support children during their hospital stay.

Guided play before, during, and post procedures, interventions, and surgery support patients and their siblings in dealing with any feelings and anxieties. This holistic approach helps provide a positive hospital experience and a healthy adjustment to the hospital environment.

The Play Team work closely with the wider multidisciplinary ward team to meet a child’s often complex needs. This could include providing preparation and distraction for children before and during treatments, developing behavioural programs, specialist plans, and individual support programs. 

The Play Room at Royal Brompton Hospital is a bright and inviting space where children can spend time away from their bedside. The room contains many toys, resources, and equipment for any age, from cot mobiles and musical boxes for young babies to tactile toddler toys, books, and art supplies for older children, along with a range of electronic resources such as DVDs and game consoles.

There is also a selection of specialist sensory toys; these are particularly useful in providing a calming environment during post-operative stages when children are less mobile and can be used to stimulate and encourage interaction. They are also essential for our patients with special needs.

A member of the Play Team (in their bright pink polo shirt) can usually be found in the Rose Ward playroom. 

If you want to contact the team before admission, please email Paediatricplayteam@rbht.nhs.uk.