Advice for adults with congenital heart disease (ACHD)

Contents

Guidance on shielding 

Updated 19 January 2021

There is now updated guidance regarding the latest national lockdown on the gov.uk website.

If you are clinically extremely vulnerable (which now includes all adults with Down syndrome), you should follow shielding guidance. Detailed shielding advice can be found at: https://www.gov.uk/government/publications/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19/guidance-on-shielding-and-protecting-extremely-vulnerable-persons-from-covid-19

Patients who are considered as clinically extremely vulnerable should have been notified by the NHS.  

Most ACHD patients, however, are not deemed extremely vulnerable, but clinically vulnerable due to their chronic heart condition. Government guidance states that “if you are clinically vulnerable, you could be at higher risk of severe illness from coronavirus”. No further advice is provided. We would recommend that vulnerable individuals are particularly stringent/careful in following the advice provided to the general population with regard to work, education, socialising, etc. at the current time. 

https://www.gov.uk/guidance/national-lockdown-stay-at-home#protecting-people-more-at-risk-from-coronavirus

Covid-19 vaccination

The Covid-19 vaccine is being rolled out in the UK and we highly recommend that our ACHD patients are vaccinated when they receive their appointment from their local health provider.

Prioritisation for vaccination is made according to the advice from the Joint Committee on Vaccination and Immunisation (JCVI). Invitation to attend for vaccination will usually come via GP practices. More information can be found here

We have classified our patients with Fontan circulation, those with pulmonary hypertension and other high-risk ACHD patients as clinically extremely vulnerable. If you have one of these conditions you should have received a letter to confirm inclusion in the “shielding” group, and you will be invited for vaccination soon. All other patients with ACHD should also be invited for vaccination sooner than the general population.

If you think you are in the extremely vulnerable group but you have not received a letter from your GP please contact us on achd@rbht.nhs.uk and we will advise you.

While the vaccine may not stop you from catching and transmitting the virus, it could reduce your chances of becoming seriously ill. Those who are vaccinated should continue to follow government guidance on minimising the transmission of Covid-19. Unfortunately, we are not providing vaccinations to patients at Royal Brompton and Harefield at the current time.

You may find answers to some of your questions about coronavirus and congenital heart disease or about coronavirus vaccines, including their safety for people with heart conditions below from the British Heart Foundation:

British Heart Foundation: congenital heart disease and coronavirus: https://www.bhf.org.uk/informationsupport/heart-matters-magazine/news/coronavirus-and-your-health/congenital-heart-disease-and-coronavirus

General information about coronavirus vaccination from the NHS: https://www.nhs.uk/conditions/coronavirus-covid-19/coronavirus-vaccination/

Information about coronavirus immunisation guidance for ACHD patients is also available at the BCCA website: https://www.bcca-uk.org/pages/news_box.asp?NewsID=19495733

Changes to appointments

In light of the significant increase of new Covid-19 cases, we have put measures in place to ensure our patients and staff are safe in our hospitals. As part of these measures, we have reorganised the way care is delivered to patients, with non-urgent, planned procedures being reduced and priority given to urgent cases where patients’ health would be at risk if treatment was delayed. Further information on procedures and appointments during Covid-19 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. 

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 at: 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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