Many of you may be worried about the Novel (Covid-19) Coronavirus situation and you may be seeking some advice, particularly if you or your child have any complications or ongoing medical issues. CDH UK has not to date received any specific advice relating to the CDH population and we advise you to keep up to date with advice according to the Department for Health for the country that you live in or are currently visiting. We will of course update should we receive any different advice.
UPDATE 17/04/2020 – We are aware that some patients in the UK have now received shielding advice letters or texts. Letters are still being sent out, but if you still haven’t received one by the 20th April we suggest that you contact your GP, particularly if you have a member of your household who is still working or looking after another vulnerable person. It may be that your particular circumstances mean that you may not be considered high risk and that you will not receive a letter. If you think that you, or a person that you are caring for should be considered as high risk despite being told otherwise, we suggest that you contact your medical advisor who knows about your medical history and seek further advice from them. In the meantime we continue to advise the CDH population to remain cautious.
UPDATE: ERNICA Covid-19 statement https://ern-ernica.eu/news-events/news/ernica-covid-19-statement/
PLEASE NOTE: The UK Government has issued updated guidance on Shielding and protecting people who are extremely vulnerable and due to the lack of clarity on the position of patients with complications of CDH and the fact that the main issues with CDH patients are the lungs, gastrointestinal issues and feeding challenges, we are recommending following this latest guidance in the absence of specific advice for the CDH population unless advised differently by a Healthcare professional that knows about you and your ongoing issues. You can read the full guidance here Guidance on shielding and protecting extremely vulnerable from Covid-19
UPDATE 01/08/2020 – Shielding for the clinically vulnerable in England has been paused – this may be subject to change so follow your local guidance.
The Government has advised the public to wear a face covering when out and about and particularly where social distancing cannot be safely carried out. It is also mandatory to wear a mask in certain places. There are some exemptions to wearing a face covering and details can be found here Government guidelines for face coverings There is understandably some concerns around wearing a mask and particularly in the case of respiratory issues or other medical issues and so we have compiled some questions and answers to hopefully help you to understand more about face coverings.
Q: Do Children have to wear a face covering?
A: Children under the age of 11 do not have to wear a face covering and children under the age of 3 SHOULD NOT wear a face covering because of safety issues.
Q: Should I wear a face covering if I have CDH?
A: Face coverings are mandatory in certain places (see above Government guidelines for face coverings), but there are exemptions including those who have breathing difficulties. Also, rules differ between the UK regions of England, Wales and Scotland regarding when and where you should wear a face covering . There is also current scientific evidence that wearing a face covering properly can help to protect others by containing the droplets containing virus and so reducing the risk of someone with the virus spreading it to others , but it may not stop you from catching Covid-19. We recommend that you follow social distancing where possible and practice good hand hygiene at all times in addition to the guidelines on face coverings. We understand that for people with compromised lungs (such as CDH patients) it may be really difficult to wear a face covering and that it can cause anxiety and panic in some cases, creating a sensation of not being able to breathe properly. We have developed a graphic for you to download and carry with you in case you are confronted about not wearing a mask, but you are not required by law to produce any written letter or evidence. Click here to download our graphic.
If you are comfortable wearing a face covering and you want to wear one then you can find instructions on how to make your own on the Government website and we do have a face covering that you can purchase on our eBay store that is aimed at raising awareness of CDH and CDH UK only; please be aware that we accept no liability as to the effectiveness or safety of the face covering; this is NOT a medical grade mask and neither is it a specific recommended face covering for CDH patients. Neither should this be seen as CDH UK promoting the use of face coverings and all advice on the wearing of face coverings should be taken from the .GOV website. Our face coverings are not made by CDH UK and are supplied by a third party. We suggest that face coverings should be washed after each use and that you wash your hands before putting a face covering on and after removing it, or use hand sanitiser if you don’t have access to hot water and soap. Never share a face mask. Face coverings should also be disposed of safely. Full details can be found on the government website.
Please see our general Q & A section below for common questions and answers about vaccination.
Further questions can be directed to the CDH UK team by emailing firstname.lastname@example.org we hope that this information helps.
Our CDH & Covid-19 survey has now closed. Thank you to all that participated. You can find the results on our research section here
Here is a link to the UK Department of Health advice https://www.gov.uk/guidance/coronavirus-covid-19-information-for-the-public
Here is a link to the Irish Department of Health advice https://www.gov.ie/en/campaigns/c36c85-covid-19-coronavirus/
For other countries or regions please search for them using your web browser and type in ‘Department of Health for’ followed by the country you require information on and press enter or alternatively use the World Health Organisation (WHO) website link https://www.who.int/
We have compiled a list of Q & A’s based upon what we have been asked by patients and families so far (these may change over the coming days and weeks):