Paediatric congenital heart disease (CHD) is the “catch all” term that covers a wide range of heart problems. These could be small defects, which may be totally asymptomatic and mean the child will go on to enjoy a normal lifespan, or much more severe forms that need urgent intervention. It is the most common birth defect, affecting between five and nine in every 1,000 babies born in the UK.
Our CHD service at The Royal Brompton hospital is recognised as being one of – if not THE – very best in the world. The UK’s very first combined heart and lung transplant took place at The Royal Brompton, and it also has very close links with Imperial’s National Heart and Lung Institute, which is one of the largest respiratory departments in the world. The unit provides life long care for the patient, transitioning from childhood all the way through to when they’re an adult, and with excellent clinical outcomes, high patient satisfaction scores and an enviable position at the forefront of global research it really is a centre of excellence in its field.
Yet these outstanding services have been under threat of closure for the last 18 months, directly as a result of plans to reform congenital heart disease services dating right back to 2001. In 2001 a report was published as a result of an investigation into an unexpectedly high death rate among babies after heart surgery at the Bristol Royal Infirmary. The report included a number of broad recommendations about changes the NHS needed to make to ensure such high death rates did not occur again. There was just one particular standard in this report that placed The Royal Brompton in the firing line: NHS England stated that hospitals providing paediatric CHD services must provide other children’s services (such as general surgery and gastroenterology) on the same site – known as co-locating. Royal Brompton don’t meet this criteria – instead it works in partnership with Chelsea and Westminster Hospital, less than a mile away, to provide these services. The proposals also stated that for any unit to remain open it would need at least three heart surgeons, carrying out 125 operations each year.
When news broke in 2016 that there was to be a consultation on the proposed closure of CHD services at the The Royal Brompton it’s no surprise that there was consternation across the globe, and a campaign to ensure the plans were dropped by the NHS was launched.
It was heartening to see just how many high profile people from across the medical and political spectrum backed the campaign, citing that the consequences would be devastating across the board if the move went ahead. We even saw protest marches take place in London, with thousands taking to the streets to show their support for the campaign.
The hospital itself fiercely opposed the move – not only because they would see a significant reduction in their income but also because they believed the move would have a knock-on effect on other services they could provide, such as paediatric respiratory medicine. Services covering paediatric cystic fibrosis and difficult asthma services would no longer be offered. With no firm evidence showing the co-location improves patient care by the risks of closing this world-leading research unit far outweighed the benefits. The hospital firmly believed that NHS England’s plans could set adult CHD research back years, harming future care quality by delaying the development of new treatments for CHD.
There was great relief when the NHS announced at the end of 2017 that the plans were to be reversed… although certain conditions needed to be met. To ensure that these conditions are indeed met the Trust has announced that it is joining forces with King’s Health Partners, which includes a number of hospitals in south London. They plan to develop a purpose-built facility, as well as increase investment at other sites.
In the meantime, CHD services for children and adults can now continue without the threat of closure looming ahead – a monumental relief for patients and the medical staff alike.