Improving care for congenital heart disease

Congenital heart disease is one of the most common birth defects and requires life-long monitoring and care. Our specialists have developed a new one-stop same-day service that has the potential to greatly improve the quality of care for all patients with this condition.

A life-long heart problem

Congenital heart disease is a term that covers a range of birth defects that disrupt the normal function of the heart and affect up to 1% of new-borns worldwide.

There is no obvious cause of congenital heart disease identified in most cases, but some things are known to increase the risk. This includes genetic disorders such as Down’s syndrome, the mother smoking or drinking alcohol during pregnancy, or having poorly controlled type 1 or type 2 diabetes during pregnancy.

Symptoms in babies and children can include a rapid heartbeat and/or breathing, extreme fatigue (tiredness) and a blue tinge to the skin caused by low blood oxygen levels. However, depending on the heart defect, symptoms might not appear until later in life.

There are many different types of congenital heart disease and they can sometimes occur in combination. Some more common defects include a hole between chambers of the heart (a ‘hole in the heart’) as well as the main blood vessels of the heart being narrower than normal, making it hard to pump blood around the body.

Congenital heart disease is usually diagnosed during pregnancy with routine scans. However, depending on the type, it may sometimes be diagnosed only after birth or years later in childhood.

Treatment depends on the type of defect and can include surgery to restore the heart’s normal function. However, people with congenital heart disease often need treatment and monitoring throughout their life as they can experience further problems with their heart rhythm or valves over time.

Thankfully, with advances in medicine, survival of patients with the condition is expected into adulthood for the vast majority in developed countries. For this reason, specialist hospitals throughout the UK offer treatment and monitoring clinics for adults with congenital heart disease.

A patient-centric service is needed

As adult congenital heart disease clinics need to cover a broad spectrum of heart defects, care pathways can be complicated for patients to navigate.

Patients require a range of regular tests as part of monitoring their condition including MRI and CT scans of their hearts, as well blood tests and an ECG to check their heart rhythm. However, due to the way NHS trusts are organised, these testing services are managed independently of one of another and can be arranged months apart at inconvenient times of the day.

In addition, due to the delay between monitoring tests, the care of the same patient can be reviewed at multi-disciplinary consultant meetings (where consultants from different specialities come together to review patient cases) repeatedly with diagnostic information missing each time as tests are yet to be completed.

In combination, this results in inefficiency and delays in care, as well as greatly reducing the quality of life of patients who remain without answers on their condition for far longer than they have to.

Creating a new NHS service with patients at its heart

Professor Michael Gatzoulis, consultant cardiologist and clinical and academic lead for adult congenital heart disease services at Royal Brompton and Harefield hospitals, felt there was a better way of providing care for these patients. In May 2020, in the midst of the COVID-19 pandemic, he led a trial to see if a one-stop same-day adult congenital heart disease service could be delivered within the NHS.

“Our patients are already burdened with a heart condition from birth and the way we currently deliver care within the NHS just adds to their burden. It shouldn’t be this way. Patients deserve to have a personalised health service designed around them, that delivers quick results and requires as few visits to a hospital as possible,” says Professor Gatzoulis.

The pilot trial, which ran over three months and involved 51 patient volunteers, was delivered in partnership with our hospital’s private patient services unit at 77 Wimpole Street where the framework for a one-stop same-day service already existed – unlike that of our NHS services.

The new service combined all the routine diagnostic investigations needed (cardiac MRI, echocardiogram, ECG, chest X-ray and comprehensive suite of blood tests), reporting and evaluation with a specialist cardiology consultant, and a session with a clinical nurse specialist on personalised education and lifestyle advice – all delivered in one day and location.

Expanding access to improved NHS care delivery

The pilot was a success with all patients receiving their monitoring tests and follow-up with a consultant and specialist nurse on the same day for instant results and details of next steps in their care.

One patient from the trial commented: “We live in Sussex and to have separate appointments for every investigation was much more inconvenient, as well as being spread over months which causes more stress while you wait for the final consultation to tell you the results / diagnosis. This day assessment addressed every single one of those issues in one visit for us.”

Professor Gatzoulis added: “We are very pleased to say that following the success of the pilot, the service is now being implemented for NHS adult congenital heart disease patients at our hospitals and we have invested in a new imaging centre to accommodate and facilitate this vision. We hope that more NHS trusts will follow our new framework of care with time. The partnership with our private patient services was the first of its kind for our team and enabled us to continue researching ways to improve patient care even during the challenging conditions of the pandemic.”

Get in touch

To find out more about our congenital heart disease services, please contact our dedicated customer services team.