Covid-19 - CDH UK

Coronavirus (Covid-19)

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.

UPDATE 17/08/20 – Wearing a face covering

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.

UPDATE 03/02/21 – Covid-19 Vaccination

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 support@cdhuk.org.uk 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

Create your own user feedback survey

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):

Q: Is Coronavirus (Covid-19) particularly dangerous for those who were born with CDH or Eventration of the Diaphragm or who were diagnosed with either of these after birth?
A: We really don’t know the answer to this because this is a new virus and the Scientists and Doctors are learning about this virus themselves. However, the Government have listed Asthma, COPD, Chronic Lung Disease and Cystic Fibrosis in the vulnerable category and because these are all conditions that affect the lungs we feel that patients should be cautious and protect themselves from getting the virus by practicing the advice given by the Government for vulnerable members of the public. As we learn more, this advice may change.
Q: I am pregnant and worried about Coronavirus, what advice should I follow?
A: The Royal College of Obstetrics & Gynaecology (RCOG) has issued some advice for Pregnant women in general. Here is the link RCOG advice on pregnancy & Coronavirus
Q: I am still working but I am worried that I may be exposed to the virus and take it home?
A: Speak with your Employer to voice your concerns and to see whether any special arrangements can be made or whether your job can be done from home. Your Employer should provide safe working conditions in line with government guidelines and regulations. This will also be a decision that you will need to make based on your circumstances and current evidence.
Q: I haven’t received a shielding advice letter?
A: speak with your GP or your regular Consultant – be aware that contacting medical professionals may take longer than normal at the moment.
Q: Can I still take my child out?
A: Please see the current advice for vulnerable members of the public. If you can’t go out, then have some fresh air in the garden and if you do not have a garden open doors and windows to get some fresh air or stand at the door and take some deep breaths.
Q: What can I do to prepare for isolation?
A: Ensure that you (or your child) has enough medication, feeds, medical supplies such as; dressings. oxygen supplies etc. Contact your GP, pharmacy or company who supplies them and check if there are any new procedures for prescriptions during this current crisis and that should there be any difficulties in obtaining normal medications or supplies etc., what you will need to do. Inform family and friends that you are isolating and ask them to drop things on your doorstep (if you need anything). Try do some exercise such as putting some music on and dancing, or going up and down stairs (if you have them), or if you have You Tube or a game system, put some exercise instructional videos or games on. You could even do some party games like Hokey Cokey or musical chairs! Yoga and Pilates are other activities that are great for adults and children alike. Recent research shows that children with CDH benefit from being active (if they are able). DO NOT hesitate to seek further medical advice IF you or your your child deteriorates.
Q: How can I help to support a healthy immune system as my child will only eat certain foods?
A: Don’t worry about this, as long is your child is eating how they normally eat then that is what matters. you can if you wish speak with your GP, Health Visitor or Pharmacy about giving supplemental vitamins, however some vitamins can react with medications so please check before taking/giving them.
Q: Should I attend my clinic and hospital appointments?
A: If you are NOT displaying any symptoms as outlined by the Government, NHS, W.H.O or Public Health England then unless advised otherwise, you should still attend. If you are unwell or displaying any of the symptoms (no matter how mild), contact the clinic or surgery that you are due to attend for further advice.
Q: What happens if I become unwell and I don’t know whether the symptoms are related to Coronavirus (Covid-19) or CDH?
A: Do not delay in contacting 111, your GP, or contact the Children’s Ward if you currently have open access. If you or your child become seriously unwell or you think that it could be a reherniation or other serious complication do not hesitate to take your child to A & E or call 999 as you would normally do in this situation. Do remember your PPE and hands, face, space advice.
Q: What are the symptoms of Coronavirus (Covid 19)?
A: Please see the above links or Video
Q: How can I help myself or my child to remain mentally healthy?
A: Stay calm and try to explain in easy to understand terms about the current situation. Try to do things that make the situation beneficial such as more family orientated activities such as cooking and baking, art and exercise and chatting about how you feel and how to help each other. Children are very adaptive to situations and will love spending time doing things as a family unit. It can of course be difficult if you have a few children and you are all stuck indoors, but look to doing things like sorting out bedrooms, spring cleaning, watching a film or having a pamper session, take part in some fundraising activities (see our social media posts)……..be creative! Lot’s of you will be preoccupied with home schooling during the day and if you are struggling with this then contact the school for help and further online aids etc. Face Time family and friends or chat on the phone. Remember we will get through this and things will eventually return to some normality. Our support channels are always open to you too.
Q: How do I contact CDH UK?
A: Our freephone support line is open Mon-Fri 9am-5-30pm (reduced hours), Our email is support@cdhuk.org.uk and is always available. You can inbox our Social Media accounts 24/7 and we will respond ASAP.
Q: What is the situation regarding the UK Covid-19 vaccination programme?
A: We have received no specific information relating to the CDH population and the ongoing vaccination programme. Please refer to the information of your national Government for information, If you have been classed as Clinically Extremely Vulnerable (CEV) and live in the UK, you should have been contacted in January or February regarding an invitation to receive a vaccination. Please contact your GP for further help and advice if you have received a shielding letter or you believe that you should have received one, but you haven’t yet received an invitation to be vaccinated.
Q: Is vaccination safe for the CDH population?
A: There is no reason to believe that the vaccination will affect the CDH population any differently to anyone else. As with any vaccine or medication you are requested to report any adverse reactions to both your GP and via the online dedicated UK Covid-19 reporting system here https://coronavirus-yellowcard.mhra.gov.uk/
Q: I have concerns or questions about having the vaccination who should I contact?
A: We are happy to try and answer generic questions so please don’t hesitate to contact us, however if your question is of a medical nature then please contact a medical advisor such as your GP or practice nurse.
Q: where can I get general information about the vaccination programme?
A: Click on this link https://www.gov.uk/government/collections/covid-19-vaccination-programme