Royal Brompton and Harefield’s paediatric unit is a national specialist referral centre for children with heart and lung conditions, providing care from before birth, through childhood and into adolescence.
Many of our children’s services are internationally renowned, including congenital heart disease, fetal cardiology, inherited cardiac conditions, paediatric cystic fibrosis and severe asthma. We are the largest national centre for children with heart rhythm problems and the third largest UK centre for paediatric cardiac surgery. Our respiratory clinicians have particular expertise in treating children with rare lung diseases, such as primary ciliary dyskinesia (PCD).
Our clinical teams work closely with referring hospitals throughout the south east, and use telemedicine to provide clinical healthcare at a distance. For example, trained paediatricians with expertise in cardiology at our referring hospitals are able to scan a child’s heart and share the results via video conferencing facilities with cardiologists at Royal Brompton, who can then advise on the care for the child. Our experts also hold a large number of outreach clinics across the south east to enable children to have a specialist opinion without having to travel further than their local hospital.
Collaborative working
The Trust’s highly successful partnership with neighbouring Chelsea and Westminster Hospital, delivered through a formal contract (Service Level Agreement), allows us to offer the very best in paediatric care. When children with heart or respiratory conditions need a clinical procedure of any kind, anaesthesia and intensive care are major issues. For example, babies and children under the care of Royal Brompton who need general, ear, nose or throat or dental surgery have their operations at Royal Brompton with specialist paediatric anaesthetists and intensive care teams on site (including highly specialist nurses), but the surgery is undertaken by visiting consultants from Chelsea and Westminster.
Clinicians from Chelsea and Westminster also provide their expert opinion within 30 minutes across a number of clinical speciality areas, including paediatric general surgery and paediatric gastroenterology, both during and outside normal working hours. For example, the provision of specialist gastroenterology is delivered by four Chelsea and Westminster Hospital consultants and a cohort of specialist nurses, who provide cross-site working and clinical advice. They also attend multidisciplinary meetings at Royal Brompton.
Our integrated paediatric service is further strengthened through a number of joint consultant appointments which create cross-Trust provision in respiratory, neurology and endocrine care, and support to the paediatric intensive care unit and cardiac/respiratory services.
There is also a weekly gastroenterology ward round attended by consultants from Chesea and Westminster and Royal Brompton, with additional help from King’s College Hospital when required.
Children’s heart services
The children’s cardiology and cardiac surgery service is the third largest unit in the UK and our experts are world leaders in the fields of fetal cardiology, inherited cardiac conditions, electrophysiology and congenital heart disease. The Trust has the largest cohort of specialist cardiology nurses in the UK.
Fetal cardiology
The fetal cardiology programme is increasing in size each year, and our experts currently see 10 per cent of all babies born in England. The majority of these babies are referred from across the UK while still in the womb, usually after the routine 20-week ultrasound scan picks up a heart defect. Others will be referred if the mother is at an increased risk of having a child with congenital heart disease, for example, because she or her partner has a heart defect. Once referred, mothers are given a fetal echocardiogram (echo), which can identify any significant cardiac defects in the unborn baby.
Paediatric congenital heart disease
The Trust offers a highly specialised service for children with congenital heart disease (CHD), caring for them from before birth to adulthood. There are many different types of CHD, and treatment may include surgery and medication, with regular check-ups at our clinics.
The majority of child CHD patients need further treatment and care as an adult and, as the Trust provides both child and adult CHD services, we can provide continuity of care throughout a patient’s entire life. Once children reach 13, they attend transition clinics led by specialist nurses. At these in-depth meetings, the nurse will help them to understand their condition and discuss exercise, diet and future career plans. Patients move to the adult service between 16 and 18, and the adult CHD team works closely with doctors from the paediatric cardiology team to ensure that the transition process is seamless.
Paediatric cystic fibrosis
Cystic fibrosis (CF) is an inherited life-limiting disease mainly affecting the pulmonary and digestive systems. The paediatric CF unit at Royal Brompton is the largest in the UK, and we have 340 paediatric CF patients in our care.
The Trust’s Clinical Guidelines: care of children with CF, written by our paediatric cystic fibrosis team, is very well regarded and used by many other CF centres in the UK and abroad.
We run a homecare service for all children with CF to help every family who needs our expertise at home. This helps young people (and their parents) understand the care they need, prevents them from becoming acutely unwell and helps stop unnecessary hospital admissions.
Once children with CF become teenagers, they attend transition clinics to prepare them for their move to the Trust’s adult CF service. The paediatric and adult CF teams work very closely together to ensure that the transition is as smooth as possible.
Research carried out at Royal Brompton last year showed that children with a specific mutation of CF could see improvements in their condition if given the drug therapy Ivacaftor earlier in life. The study, the first to look at the safety and effectiveness of the drug in children aged two to five, was led by Professor Jane Davies, consultant in paediatric respiratory medicine at the Trust. She says:
“Although this was a small trial we are excited by the results, which highlight the potential that Ivacaftor has to improve the lives of children with cystic fibrosis.”
The children’s long-term ventilation (LTV) service
Many children survive critical illness but remain dependent on technology. Developments in portable ventilators, alongside increasing clinical expertise, ensure that many of those children who cannot breathe on their own can leave hospital to be cared for by family members and professional carers at home.
For some children and babies who need long-term ventilation, a permanent tracheostomy is fitted.
This is where a tube is inserted into an opening in the front of the windpipe and connected to an oxygen supply and ventilator. The Trust’s LTV team provides specialist training to parents and professionals to care for these technology-dependent children.
Hospital to Home pathway
Royal Brompton Hospital’s long-term ventilation (LTV) team has developed an award-winning web-based clinical pathway to provide communication across different hospitals and between hospital and community professionals. The aim is to ensure continuity during the discharge process and ensure all actions are appropriately allocated and followed up. The pathway provides a structured discharge process and allows secure communication between hospital and community professionals.
Primary ciliary dyskinesia
Primary ciliary dyskinesia (PCD) is a rare inherited condition in which the cilia – microscopic hairs found in the nose and airways – fail to adequately remove bacteria and particles from the respiratory tract. This leads to recurrent infections in the nose, ears, sinuses and lungs which, if left untreated, can cause lung damage. Treatment programmes include physiotherapy to help clear the airways, and antibiotics to help fight bacterial infections.
The PCD diagnostic service at Royal Brompton Hospital, one of only three in the UK, has been nationally funded since 2006 and sees around 400 patients each year.
Up to 50 per cent of patients also have dextrocardia (heart on the right side) and situs inversus (internal organs being on the opposite side to normal). Cases are higher in populations where marriage between blood relatives, such as first cousins, is common.
Screening for PCD involves measuring the amount of nitric oxide gas present in the nose and looking at cilia under the electron microscope and on high speed video.
Difficult asthma
The Trust is a specialist centre for the diagnosis and treatment of difficult asthma, which does not respond to the usual medications. Children with difficult asthma are referred to the Trust from all over England and undergo a full assessment from our multidisciplinary team including physicians, specialist nurses, psychologists and physiotherapists. Some children are found not to have asthma at all, and others are given different medications tailored to their specific type of the disease.
The Trust benefits from close links with the National Heart and Lung Institute, part of Imperial College London’s Faculty of Medicine, and our experts are involved in a number of significant asthma research studies.