Advice for adults with congenital heart disease (ACHD)

Advice for adults with congenital heart disease (ACHD)

Updated 18th May 2020

On 1 May 2020, the government withdrew its guidance on social distancing (previously titled 'Guidance on social distancing for everyone in the UK') and replaced it with new guidance: 'Staying alert and safe (social distancing)'. 

Advice for people who are clinically vulnerable (not extremely vulnerable) and at higher risk of severe illness from coronavirus can be found in section eight. Patients with chronic heart disease are still included in this group and, as such, are advised to stay at home as much as possible. If going out, particular care should be taken to minimise contact with others outside their household. 

By definition, all our adult patients with congenital heart disease (ACHD) have a chronic heart condition. While we recognise that ACHD is a wide spectrum of conditions and severities, there is currently no evidence to guide clinicians to clearly identify ACHD patients who are at low risk

We acknowledge that there are ACHD patients with simple congenital heart defects who have undergone successful repair with no ongoing issues or residual lesions and who, therefore, may not be at significantly higher risk of COVID-19 compared to the general population. However, patients within this group may still carry additional risks such as diabetes, obesity and older age, which should be taken into account. 

Going to work

We have been receiving queries from patients asking if it is safe for them to go back to work. As per government guidelines, people should continue working from home, if possible. Those who cannot work from home should return to work if their workplace is open and social distancing can be maintained while travelling as well as in the workplace.

Update on social distancing and isolation measures

On 24 March, the government released its guidance on shielding and protecting people defined on medical grounds as extremely vulnerable from COVID-19. People in this high-risk group are considered extremely vulnerable due to their serious and long-term health conditions, they include:

  • Heart and lung transplant recipients
  • People with severe respiratory conditions, including all types of cystic fibrosis, severe asthma, interstitial lung disease and chronic obstructive pulmonary disease (COPD)
  • People on immunosuppression therapies sufficient to significantly increase risk of infection.

Our patients who fall into one of these categories should have received a letter from NHS England, followed by text and phone call. The letter outlines the steps they should take to keep themselves safe, which include new social shielding measures to minimise all interaction between them and others and therefore the possibility of coming into contact with coronavirus. This means that they should:

  • Stay at home at all times for at least 12 weeks from the day they receive the letter
  • Avoid all face-to-face contact and gatherings, including in private spaces
  • Do not go out for shopping, leisure or travel and, when arranging food or medication delivered, these should be left at the door
  • Keep in touch using remote technology such as phone, internet and social media.

Visits from people who provide essential support to you such as healthcare, personal support with your daily needs or social care should continue, but carers and care workers must stay away if they have any of the symptoms of coronavirus (COVID-19). You should have an alternative list of people who can help you with your care if your main carer becomes unwell. You can also contact your local council for advice on how to access care.

Anyone coming to your home should wash their hands with soap and water for at least 20 seconds on arrival to your house and often while they are there.

The British Cardiac Congenital Association has also published a list of conditions that should be considered more vulnerable to becoming unwell with respiratory infections, including COVID-19. We recommend you follow government guidance on social shielding, if you fall into any of the following groups:

  • Patients with single ventricles (e.g. tricuspid or mitral atresia, double inlet left ventricle) or those palliated with a Fontan circulation (including total cavopulmonary connection)
  • Patients with chronic cyanosis (oxygen saturations <85% at rest)
  • Patients with severe cardiomyopathies or significant dysfunction of the pumping chambers (ventricle), requiring medication for heart failure
  • Patients with pulmonary hypertension (high blood pressure in the lungs) requiring medication
  • Patients who have undergone heart transplantation
  • Patients with congenital heart disease and significant co-existing conditions e.g.chronic kidney disease or chronic lung disease.

What to do if you have not received a letter 

If you feel you are in the high-risk group of extremely vulnerable people but have not received a letter from NHS England confirming this, please contact us at achd@rbhts.nhs.uk using 'extremely vulnerable' as the subject line. We are also compiling a list of patients we feel belong in this category and will communicate this to NHS England. 

Changes to appointments

Please note that in order to protect patients and staff:

  • All routine outpatient appointments, day case appointments, echocardiograms and other outpatient tests in our hospital have, at present, been cancelled and will be rescheduled in due course. 
  • Any decision to delay planned, non-urgent procedures will be made by the clinical team involved in your care, following a review of your clinical information, and as such, you will be notified
  • Please do not come to the hospital unless told otherwise
  • All necessary support to ACHD patients will be provided by alternative means such as email, telephone or video
  • Patients cases which cannot be managed by alternative (digital) means will be seen at Royal Brompton or Harefield hospitals, or other London specialist hospitals, depending on clinical need and hospital capacity
  • Multidisciplinary team meetings will focus on urgent cases.

Update as of 8th May 2020:

Work is now underway to review all procedures and investigations that had been postponed or cancelled in light of COVID-19. Read about what we are doing to restart non-emergency work for ACHD patients

Telephone clinics

We are receiving very positive feedback from the telephone clinics we are running for patients who were due to attend one of the ACHD clinics. There are, however, a few patients we have not been able to reach. If you were supposed to be seen in one of the ACHD clinics and have not received a call from us around the day of the clinic, please contact us to reschedule and confirm your contact details. Please remember to provide your name, surname, date of birth and hospital or NHS number if you have it. Please email us at achd@rbht.nhs.uk using “telephone clinic” as the subject of the email. 

ACE inhibitors or ARBs and COVID-19 

There have been some reports discussing whether the use of angiotensin-converting enzyme (ACE) inhibitors (e.g. ramipril, lisinopril, perindopril) and angiotensin receptor blockers (ARBs) (e.g. losartan, candesartan) carry a potential risk in the context of COVID-19. Currently, there is no clinical or scientific evidence to suggest treatment with ACE-inhibitors or ARBs should be stopped. Therefore, we advise our patients to continue taking their medication as usual.

For more information, please read the statement from the Council for Hypertension of the European Society of Cardiology.

Queries and support

If you are worried you may have coronavirus, please use the NHS 111 self-assessment portal or call NHS 111 if you need to speak to someone (or 999 if you become severely unwell). 

For any further queries or advice, please contact us via our email: achd@rbht.nhs.uk. Please be aware that we are receiving a large volume of calls and emails but we aim to reply as soon as possible. Please do not contact the hospital unless absolutely necessary.

Further information about coronavirus is available on https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public and the NHS website. For CHD-specific advice, please visit:

Additional resources:

Further reading

We fully appreciate this is a period of great anxiety and uncertainty for everyone and we know you will have questions and concerns. We will continue to communicate with and support our patients and their families, so please check our website on a regular basis for the latest updates and information.

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