Coronavirus Advice and Support for Sleep Apnoea Patients and those on CPAP and Non-invasive Ventilation
Wednesday, 18 March 2020 | Kath Hope
EDIT - 27th July 2020:- This Coronavirus article which was first written in March, is now having a total revision as much of the information has changed, so it seems more sensible to delete old information so that all that remains is relevant information.
As time has gone on, we thank you for your understanding that our support may not always be as quick as normal, but as you are aware, we are doing our very best to support you and of course look after ourselves too during this time, and we do understand the anxiety that many people are going through. We too have our own worries during this crisis, and and is something none of us have ever faced to this degree and hope we don't in the future. What is important, for our mental health as well as our physical health, is that we try to keep calm and supportive of each other - as we're all in this together
Regarding support, this is continuing via our helpline on 0300 102 9711 but calls are diverted to our home so please be patient as we do not have numerous lines running. We listen to all the voicemails, but if you are expecting a call back please note that our number will show up as 'withheld' if you use caller display. You can still contact us via email at firstname.lastname@example.org but again patience is needed due to the amount of emails coming in.
For quicker responses for support please join our very active Private Facebook Support Group where support can be shared between our members and charity team:-
If you don't use Facebook you can join our Hope2Sleep Guide Public Forum:-
Also follow our Public Facebook Page for other updates:-
Important Links to Official Public Health Organisations
NHS Website for official up-to-date information https://www.nhs.uk/conditions/coronavirus-covid-19/
Department of Health and Social Care plus Public Health England for official up-to-date information https://www.gov.uk/government/topical-events/coronavirus-covid-19-uk-government-response
NHS 111 Direct https://111.nhs.uk/service/COVID-19/ if you think you may have symptoms of the Coronavirus and their advice is NOT to go to to a GP, pharmacy or hospital initially.
World Health Organisation https://www.who.int/emergencies/diseases/novel-coronavirus-2019 for official worldwide news.
Patients with treated Sleep Apnoea or UARS (Upper Airways Resistance Syndrome) with no other underlying health issues
Lots of queries are coming in due to misconceptions about the vulnerability of patients with treated Sleep Apnoea and UARS ONLY. In fact some patients have even been told by some healthcare clinicians their vulnerability risk is greater, which is not true when on their CPAP or NIV therapy.
Patients with Sleep Apnoea or UARS ONLY, are no more at risk to the Coronavirus than other non-vulnerable people and possibly less of a risk due to a better immunity, thanks to CPAP or NIV keeping us healthier due to good safe sleep and with better oxygen levels.
Patients with Underlying Conditions as well as Sleep Disordered Breathing
According to the NHS, people at high risk from coronavirus include people who:
For people with lung conditions there is extra help and support at the British Lung Foundation
For pregnant ladies there is extra help at Royal College of Obstetricians and Gynaecologists.
For diabetics there is extra help at the Diabetes UK.
For patients with asthma see extra information at Asthma UK.
Patients already treated with CPAP and Non-invasive Ventilators
It goes without saying that it is as important as ever to use our CPAP or NIV machines for all sleeps, as everyone in the world needs to look after their help the best they can. This obviously includes a good diet, exercise where possible and good sleep. Remember to take any additional prescribed medication and vitamins.
We already know the importance of keeping our hands extra clean during the coronavirus outbreak, but do also remember to keep your masks and other equipment clean too. There is lots of help with cleaning and other mask and CPAP/NIV problems that may come up on this page of our website 'Tips for Problems Sleeping with CPAP or Non-Invasive Ventilation' https://www.hope2sleep.co.uk/tips-for-problems-sleeping-with-cpap-or-niv.html
Please be patient with your own clinic as the pressure they are under right now is phenomenal. Many clinics are run by respiratory departments which are on the front line of this coronavirus outbreak.
To protect everyone, many clinics have had to be cancelled due to keeping everyone safe. This does not mean the staff are sat there twiddling their thumbs, as they are still looking after their patients as well as they can, along with often being sent to other departments to assist.
Take good care of your equipment, just in case there are any shortages in the hospitals in the coming months.
British Sleep Society's Statement added 17th April 2020
Additional Guidance added 20th March 2020
Frequently Asked Questions from CPAP and Non-invasive Ventilation Users:-
Can CPAP be used for treating the COVID-19 Virus?
No, as hospitalised cases of the COVID-19 Virus requires mechanical ventilation which includes reverse-engineered CPAP along with other equipment. However, CPAP and home non-invasive ventilators have good evidence to protect us from the virus and for milder cases of COVID-19 which don't require hospitalisation, people should try to keep up with their CPAP and NIV - sleeping alone with no bed partner, to minimise any risks to their partner. If you do have to be hospitalised, take your CPAP into the hospital and be guided by the medical team.
(Added reply 30/3/20 - Amazingly the F1 have now created a reverse-engineered CPAP machine in record time due for fast manufacture for hospitals treating patients with COVID-19 which requires specialist operation and monitoring. This has high hope of treating poorly patients not quite needing full ventilation, and possibly even keeping them off ventilation).
Should I keep my mask and machine cleaner than normal?
You should already be cleaning your mask everyday and hose and humidifier a good clean weekly, without this COVID-19 crisis. Continue this as normal. We have are now supplying the Clinell range of Disinfecting Wipes and Spray which are the ONLY ones we're aware of safe for use with CPAP and non-invasive medical equipment https://www.hope2sleep.co.uk/clinell-universal-cleaning-and-disinfectant-wipes.html Please DO NOT start using other disinfectants as most will be unsafe for breathing, as well as damaging the masks. If you do become unwell with symptoms of the virus, or any other infection, then it's advisable to start cleaning the hose along with the mask everyday.
Do keep up-to-date with the machine's filters as usual.
Why can't I get hold of my sleep clinic?
Depending on the hospital, many sleep clinics are run by respiratory clinicians, who along with other specialisms have been temporarily re-deployed to the frontline and critical care to treat patients with COVID-19. They are upset themselves that they cannot continue to serve their existing patients, so please be kind and patient, knowing they have no choice but to prioritise COVID-19 patients at this time. These clinicians are also risking their own lives, and many are scared and stressed themselves.
Some clinics are starting to resume their services, but in a very different way - most with no face-to-face appointments, but are doing their best to set up safe ways of continuing to care for their patients and deal with new suspected cases of sleep apnoea. A telephone line or email system is in place at most clinics where possible, and of course we've also placed links at the beginning of this article where we can support you too.
Are you sure I don't have a higher risk of contracting the Coronavirus with me having sleep apnoea and using CPAP?
As has already been addressed in this article, there is no reason that with good CPAP therapy you are at any higher risk than other healthy people (if it is just sleep apnoea you have without other medical conditions that are on the higher risk list). People are getting confused as some employers and doctors have identified their workers/patients as being a higher risk, but lots of these people have a BMI of 40+ which in itself is a higher risk factor, rather than the treated sleep apnoea.
I think I have sleep apnoea but am not on CPAP (or I've been diagnosed and not had a CPAP issued yet). Therefore, am I at a higher risk when untreated even without other higher risk medical conditions?
Unfortunately, we cannot answer this question with certainty and truly feel for you at this time. It's certainly a known fact that good sleep provides better immunity and health for the whole body and mind. Therefore, do all you can to gain the best sleep possible at this time - avoiding things which make sleep apnoea worse like alcohol, over-the-counter sedating medications you can live without, sleeping on your side and getting slightly elevated if practical. Also ensure the nasal passages are free from congesion with things like nasal strips and natural saline nose sprays.
I'm getting concerned as I have been hearing about the higher risk to others when using my CPAP (or ventilator) due to the exhale valve on my mask causing an aerosol effect which can spread droplets of the virus to others?
It is certainly a possibility of a higher risk of spreading the virus when using a vented CPAP or ventilator mask (but not definite). However, it would be wise to make sure you are sleeping alone with suspected or confirmed COVID-19. Bear in mind though that the same advice applies to people who do not use CPAP or ventilators, and they too should sleep alone to minimise the risk to a bed partner. If, however, you use CPAP or non-invasive ventilation during the day and have carers coming in, then they should be warned that they may need to take extra precautions themselves, such as the use of PPE when visiting your home.
Now that it is mandatory to wear a face covering in public, am I exempt due to my sleep apnoea?
Sleep apnoea does not make people exempt from using face coverings and most people have obstructive sleep apnoea, which means when they are in deep REM sleep, obstructions happen to prevent breathing. This does not happen when awake. For central sleep apnoea, this is when the brain 'forgets' or is slow to send messages to breathe, which again happens during sleep. What we do find is that for those of us used to wearing masks, normally we have air pumped through the mask which is not the case with face coverings, so it can seem a little strange. Wearing a face covering is not always comfortable for a lot of people, but bearing in mind the scientific evidence of protection to others and ourselves from the use of a face covering, the discomfort is nothing to what a bad case of hospitalised coronavirus would cause!
There are people on CPAP and non-invasive ventilation that do have underlying conditions which may make it more uncomfortable to use a mask, and to those people we would say "please be very careful if you have to go out in public without a face covering, and perhaps a face shield would be a good compromise.
Questions for people with underlying lung conditions answered by a Respiratory Expert
Video showing F1 Reverse-Engineered CPAP for treating COVID-19
The video below was taken direct from the news on 30/3/20 as we're still getting tons of queries about CPAP since the great news broke out of the new type of CPAP machines designed and manufactured in record time by F1 (Formula 1) for delivery next week to the NHS.
You can clearly see these new CPAP machines are different to the ones we use at home, and as Professor Rebecca Shipley at ULCH herself said yesterday "these are reverse engineered" (from the original CPAP machines we know ourselves). Although we've seen demonstrations on the news and internet of what looks like our CPAP masks, it is likely that sealed hoods would be used or at the very least, non-vented masks.
The full spec is on Gov UK but needs medical or engineering knowledge to understand it properly:-
General Advice and Updates for everyone for protection during this outbreak
COVID-19 Symptom Study App
Please consider downloading and taking 1 minute per day in completing the Zoe COVID-19 Symptom Study App, as this is crucial in helping the NHS carry out vital research regarding the COVID-19 coronavirus. Rest assured that Zoe have enforced their best practices to ensure your data is protected too! If you do happen to report symptoms that are suspicious of you having the coronavirus you may also be invited to take a coronavirus test and may also be invited to participate in other tests or trials for research, which can only be a positive thing. There are also regular articles and webinars you can view. This app is available for both Android and IPhone.
Android users can find the app on this link https://play.google.com/store/apps/details?id=com.joinzoe.covid_zoe
I-Phone users can find it here https://apps.apple.com/gb/app/covid-symptom-study/id1503529611
As from 24th July 2020 face masks in England and Scotland must be worn in shops, on public transport, for all hospital appointments and any enclosed space where social distancing is difficult. At the time of writing, Ireland and Wales state that it is mandatory on public transport. Contrary to the usual false news circulating, this is a law and can result in a £100 fine by the police for refusal https://www.legislation.gov.uk/uksi/2020/791/contents/made This does not include children under age 11 and under and children under the age of 2 should not wear masks. Again, lots of fake news is circulating about oxygen and co2 wearing masks, and it has been proven time and again that wearing a face covering WILL NOT result in oxygen desaturations or co2 retention.
In fact one UK surgeon was so annoyed at this fake news that he's released a video to prove this...
Disposable 3-ply masks like on this image work well and can be bought cheaply on various websites:-
Alternatively, cloth masks can be bought or made, like on the following link
Face coverings are not a replacement for other advice, such as repeated hand washing
NHS News Alert
This article will continue to be updated as new information comes through and please everyone keep safe, and don't ever feel you're alone. If you feel extra anxious do check out information at Mind and similar organisations like this https://www.mind.org.uk/information-support/coronavirus-and-your-wellbeing/ and don't hesitate to reach out to us via the above links for any support you need.