Advice for adults with congenital heart disease (ACHD)

Contents

Guidance on shielding 

Updated 3 July 2020

On 22 June 2020, the government announced a series of steps for relaxing shielding guidance from 6 July and 1 August. The full guidance can be found here.

From 6 July, the government will be advising:

  • you may, if you wish, meet in a group of up to 6 people outdoors, including people from different households, while maintaining strict social distancing
  • you no longer need to observe social distancing with other members of your household
  • in line with the wider guidance for single adult households (either an adult living alone or with dependent children under 18) in the general population, you may from this date, if you wish, also form a ‘support bubble’ with one other household. All those in a support bubble will be able to spend time together inside each other’s homes, including overnight, without needing to socially distance

From 1 August, the government will be advising that shielding will be paused and advising you to adopt strict social distancing rather than full shielding measures. Strict social distancing means you may wish to go out to more places and see more people but you should take particular care to minimise contact with others outside your household or support bubble. In practice this means that from 1 August:

  • you can go to work, if you cannot work from home, as long as the business is COVID-safe
  • children who are clinically extremely vulnerable can return to their education settings if they are eligible and in line with their peers. Where possible children should practise frequent hand washing and social distancing
  • you can go outside to buy food, to places of worship and for exercise but you should maintain strict social distancing
  • you should remain cautious as you are still at risk of severe illness if you catch coronavirus, so the advice is to stay at home where possible and, if you do go out, follow strict social distancing.

Those in receipt of centrally provided food boxes and medicine deliveries will continue to receive this support until the end of July if they want it.

The guidance for the clinically extremely vulnerable group remains advisory. More detailed advice will be updated in this guidance as the changes in advice come into effect on 6 July and 1 August.

Clinically vulnerable people

Guidance for clinically vulnerable (not extremely vulnerable) patients can be found in section 9 here

If you have any of the listed health conditions (a category that includes patients with chronic heart conditions), you may be clinically vulnerable, meaning you could be at higher risk of severe illness from coronavirus. Although you can meet people outdoors and, from 4 July, indoors, you should be especially careful and be diligent about social distancing and hand hygiene.

No other guidance is provided beyond what applies to the general population.

Government advice on going to work is as follows: 

  • People who can work from home should continue to do so. Employers should decide, in consultation with their employees, whether it is viable for them to continue working from home. Where it is decided that workers should come into their place of work then this will need to be reflected in the risk assessment and actions taken to manage the risks of transmission in line with this guidance.
  • All workers who cannot work from home should travel to work if their workplace is open. Workplaces should be set up to meet the new COVID-19 Secure guidelines before operating. These will keep you as safe as possible, while allowing as many people as possible to resume their livelihoods. In particular, workplaces should ensure employees can socially distance from each other, or have implemented robust mitigation measures where distancing is not possible, and wash their hands regularly. Businesses should maintain 2m distancing wherever possible.
  • At all times, workers should follow the guidance on self-isolation if they or anyone in their household (or support bubble), shows coronavirus symptoms. You should not go into work if you are showing symptoms, or if you or any of your household (or support bubble) are self-isolating. This is consistent with advice from the Chief Medical Officer.

There is specific guidance in relation to work carried out in people’s homes – for example by tradespeople carrying out repairs and maintenance, cleaners, or those providing paid-for childcare in a child’s home.

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. 

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.

Changes to appointments

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

Information about visiting our hospitals for an appointment can be found here

Update on ACHD clinics

In view of the pandemic, all clinics are currently running as telephone or video clinics to minimise the risk of infection to patients and staff.

Video consultations use the NHS Attend Anywhere video platform. If you choose to have a video consultation, you will be sent details of your appointment by letter, email or text message with a link to the Attend Anywhere video platform. Please note that this works on Google Chrome (https://www.google.com/chrome/), hence you need to have this app on your computer or portable device to log on.

If you are unable to use Attend Anywhere, we will telephone you instead around the time of your appointment for a telephone consultation.

Please note: some patients traditionally seen in the Friday morning ACHD clinic will be invited to attend a Tuesday video clinic. The remainder, and patients normally attending other ACHD clinics, will receive appointments for a video or telephone clinic on the same day as their normal face-to-face clinic. 

Tests and day case appointments 

Tests (e.g. echo, MRI) are still being carried out at Royal Brompton and Harefield hospitals, at a reduced capacity, in areas of the hospital where there is no cross-over with any Covid patients or staff that may be treating them. Stringent measures are in place to ensure all hospital facilities are cleaned thoroughly and regularly. You may receive an appointment for a test, separate to the telephone or video clinic, which we encourage you to attend. If you are unable to attend, please let us know as soon as possible so that we can offer the appointment to another patient. 

Day case appointments 

Royal Brompton Hospital is also running a day case facility for patients who might require several tests tests on a single day or a face-to-face consultation for medical reasons. The day case facility has no cross-over with any Covid patients or staff that may be treating them, and stringent measures are in place to ensure facilities are cleaned thoroughly and regularly.  If you are unable to attend, please let us know as soon as possible so that we can offer the appointment to another patient. 

We would like to reassure you that all measures possible are taken to minimise the risk of transmission of COVID-19 in the above areas. Read more about what we are doing to keep your visit safe.

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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