Here at ECHO we know that many families are worried about Coronavirus (Covid-19) and how it may potentially affect you and your children.
The current situation is rapidly evolving, and we are taking care not to provide conflicting or confusing information. We are currently following the advice set out on the NHS website which is constantly being updated with the latest information and recommendations.
Below is a statement about our approach, FAQs and some resources.
We are in regular contact with the hospital and other charities – as soon as we have any updated information we will share it on this page.
In light of the BCCA announcement ECHO have prepared guidance letters for parents/carers to give to their children’s schools and/or employers.
Please feel free to send the letters along with a personal note from you with information about your child and any unique concerns or comments you may want to share with their school.
These letters are intended for parents/carers to download and share with their school and/or employer, if they feel it is helpful and appropriate. These templates have been created to help share up-to-date information and guidance, and are based on the BCCA update of 18/03/2020.
Coronaviruses are a large family of viruses which may cause illness in animals or humans. In humans, several coronaviruses are known to cause respiratory infections ranging from the common cold to more severe diseases.
The most recently discovered coronavirus causes coronavirus disease COVID-19.
Common signs of infection include respiratory symptoms, fever, cough, shortness of breath and breathing difficulties.
But these symptoms do not necessarily mean you have the illness. The symptoms are similar to other illnesses that are much more common, such as cold and flu.
How to avoid catching or spreading coronavirus:
On 16 March 2020 the UK Government issued new guidance on social distancing for many vulnerable patient groups.
This guidance can be found at:
The general government advice provided to date relates only to adults and not children. Also, it does not give specific advice for adults or children with congenital heart disease.
This is a new virus with a limited evidence base to make firm recommendations, but the BCCA (British Congenital Cardiac Association) believe, based on experience with other viral illnesses, that some patient groups may be more vulnerable than others if infected with COVID-19.
The BCCA suggests that the following groups should be considered more vulnerable to becoming unwell with respiratory infections, including COVID-19, and should therefore be particularly strict in following the social distancing measures outlined in the Government guidelines:
– Single ventricle patients or those palliated with a Fontan (Total Cavopulmonary Connection) circulation
– Infants under 1 year with unrepaired congenital heart disease requiring surgery or catheter intervention e.g. VSD, AVSD or tetralogy of Fallot
– Those with chronic cyanosis (oxygen saturations <85% persistently)
– Patients with severe cardiomyopathies requiring medication
– Patients with congenital heart disease on medication to improve heart function
– 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.
ECHO will be updating this page as and when we receive new information so please check back.
The BCCA has advised that the groups as listed in the previous question should be particularly strict in following the social distancing measures outlined in the Government guidelines.
Based on the Government definitions of social distancing, would exclude their attendance of such individuals at nurseries, school, college or universities.
Avoidance of situations such as socialising with family, going to restaurants and children’s parties would also apply in the same way as the advice for high risk groups contained in the Government guidance.
Patients with congenital heart disease should seek advice from their cardiac unit about social distancing.
Children with conditions other than those listed will need to consider other health conditions and communicate with your education setting. The majority of children with CHD are unlikely to be at any greater risk of coronavirus (COVID-19) than those in the general population.
Read the full BCCA guidance as of 18/03/20 https://www.bcca-uk.org/pages/news_box.asp?NewsID=19495710
For all cases of Coronavirus (Covid-19), those being treated in hospital is in isolation so these patients do not cause a threat to others.
Check your hospital’s current guidance about attending appointments as it is highly likely they will suggest attending necessary appointments and avoiding unnecessary attendance.
Current Evelina London advice:
As we start to treat more people with the virus, we will need to postpone other non-urgent appointments. If your child’s appointment is postponed, you will be contacted in advance by the team caring for your child. Please understand that this will only happen if completely necessary and is a measure to keep both your child and others safe. If your child has a hospital appointment, please attend as normal unless you hear otherwise.
You can find updates from the Evelina London here:
If you think you might have coronavirus or you’ve been in close contact with someone who has it:
The 111 coronavirus service will tell you if you need to continue to stay at home (self-isolate) or if you need medical help.
If a family member is concerned that they might have COVID-19, advise them that it is best to following the advice above, and avoid contact with others. The NHS website has a list of frequently asked questions about coronavirus that may be useful in these situations.
NHS advice states:
Government advice shared on 16 March gives information about who should stay at home, how to prepare and guidance for you and your family during your time staying at home.
Read the government advice here:
We recommend that you have back up medicine, such as some extra packets easily available.
However we don’t advise that you start stockpiling your child’s medicine.
Established 36 years ago, ECHO is parent led with heart parents on our board of trustees, and we have a strong relationship with the Evelina Guys & St Thomas NHS trust, NHS England, other organisations including other children’s and adults heart charities throughout the heart community.
We will continue with our support programmes and events based on guidance from the NHS? We are in communication with supporters who are fundraising for ECHO and will be closely monitoring updates as to how best support our members.
Please see ECHO’s Response to Coronavirus (Covid-19) near the top of this page.
Continue to plan fundraising events, contact us if you are concerned about your plans, you can still donate – families need charities like ECHO to ensure they get support and information when they need it most.
The news about the Coronavirus (Covid-19) may be causing you and your family to feel stressed.
During times of stress, pay attention to your own needs and feelings. Engage in healthy activities that you enjoy and find relaxing.Exercise regularly, keep regular sleep routines and eat healthy food. Keep things in perspective.
Public health agencies and experts in all countries are working on the outbreak to ensure the availability of the best care to those affected.
See the below resources from the World Health Organisation for more infomation on managing stress during this time.
We’ll be updating this web page and using our social media channels and closed Facebook group for ECHO members to share any updates as soon as we have them and keep our community updated.
Please note ECHO are not medical professionals therefore if you require specific advice please call NHS 111.
Information referenced from: