Pathfinders information & Advice

Advice and Information Resources

Respiratory and Cardiac Care

COVID-19 Statement and FAQ

There has been considerable anxiety amongst people with neuromuscular conditions about the risks of Covid 19. While there have been anecdotal reports of people developing Covid 19 and recovering, any source of respiratory infection is very concerning for people whose neuromuscular conditions involve any degree of respiratory weakness.

A coronavirus is a type of virus. As a group, coronaviruses are common across the world. Typical symptoms of coronavirus include fever and a cough that may progress to a severe pneumonia causing shortness of breath and breathing difficulties.

Generally, coronavirus can cause more severe symptoms in people with weakened immune systems, older people, and those with long-term conditions like diabetes, cancer and chronic lung disease.

Many people with neuromuscular conditions will have been advised to shield during the first wave of Covid 19. Amongst those who were not officially advised to shield many have concluded that it was safest to do so anyway. 

In the first wave of the pandemic, there was more support and strict advice given to people who shield than to others. This included:

  1. Strictly avoid contact with someone who is displaying symptoms of coronavirus (COVID-19). These symptoms include high temperature and/or new and continuous cough.
  2. Do not leave your house for a period of at least 12 weeks.
  3. Do not attend any gatherings. This includes gatherings of friends and families in private spaces, for example, family homes, weddings and religious services.
  4. Do not go out for shopping, leisure or travel and, when arranging food or medication deliveries, these should be left at the door to minimise contact.
  5. Keep in touch using remote technology such as phone, internet, and social media.

With the current second wave of Covid 19 you should be taking significant precautions, especially if you have any respiratory impairment. We know that outdoor transmission, when not in crowds and when maintaining a 2m social distance, is relatively low risk. If you are doing this, you should wear a mask, or use a filter on your ventilator, and ensure that you wash thoroughly and remove all outside clothes when you come in.  Many people have chosen to go outdoors for occasional socially distanced walks.

If higher restrictions are imposed in your area there is a risk that you might have difficulty accessing supermarket delivery slots. It is advisable for you to book these well in advance, especially if you were not given priority access due to shielding.

The general guidance on protecting yourself from Covid 19 is:

Guidelines concerning COVID-19 - Do wash your hands with soap and water often – do this for at least 20 seconds always wash your hands when you get home or into work use hand sanitiser gel if soap and water are not available cover your mouth and nose with a tissue or your sleeve (not your hands) when you cough or sneeze put used tissues in the bin straight away and wash your hands afterwards try to avoid close contact with people who are unwell Don't do not touch your eyes, nose or mouth if your hands are not clean

For people whose neuromuscular conditions involve respiratory compromise, we would advise a far higher level of caution, including considering a return to shielding if cases are high in your area. In general, we suggest:

  • Strictly follow all government guidelines on restrictions within your area, and if you are concerned about Covid 19, consider exceeding these restrictions
  • Avoid any unnecessary indoor socialising
  • Do not enter any busy indoor environments (e.g. supermarkets, cinemas etc) unnecessarily
  • Balance your perception of the risk of Covid 19 with the effect on your mental health. Ensure you take care of that also
    • Try to socialise regularly with friends online, e.g., discord, zoom, watching films together etc
    • Try to find time for yourself and to rest and relax
  • Ensure that you are up to date with your respiratory medication, physiotherapy, and cough assist, that you are using your ventilator as advised, and that you have discussed with your doctor what you should do if you develop symptoms of Covid-19

Care and healthcare

  • If you have carers, PAs, or nurses, ensure that they are aware of the additional risk in your case. Advise them to:
    • Not attend work if they have any of the symptoms of coronavirus (fever, cough, loss of sense of taste or smell)
    • Ensure that they always wear a mask when in your property
    • Ensure that they bring a clean change of clothes to work, that has not been worn outdoors
    • Ensure that they always wash their hands before approaching you
  • If you are using CPAP, BIPAP, or any type of Non-Invasive or Invasive Ventilation, your carers, PAs, or nurses should be wearing an FFP3 face mask, gloves, face shield and full gown. If you are having trouble sourcing this, speak to your hospital or care funding body
  • While masks primarily protect the people around you from you, rather than protecting you from them, they do have a protective effect on the wearer, and if you are able to wear one then you should
  • Councils who manage direct payments have been advised to be very flexible during the pandemic. This may include permitting you to hire somebody who lives at your address or a relative, even where this would not normally be allowed. If you wish to do this, you should consult with them
  • Continue attending regular hospital appointments as advised. Where there is no reason for those appointments to take place in person, speak to the clinic about whether telemedicine is available
  • Do not stockpile medication but ensure that you will not run out of it unexpectedly
  • If you have any non-Covid 19 related health problems, ensure that you seek medical help as necessary. Most hospitals now have very good Covid precautions in place if you need to attend A&E for a non-related reason. Most doctors surgeries are now doing telephone appointments.

Pathfinders will continue producing relevant information for people with neuromuscular conditions on the pandemic. We are also running regular online events which you can find via our Facebook page https://www.facebook.com/groups/735642973834731/ 

The Official UK Government site – Coronavirus (COVID-19): latest information and advice

NHS Official page – Coronavirus (COVID-19)

NHS Website FAQ – Common questions

Advice from the Royal Brompton & Harefield NHS Foundation Trust

NMD United have produced a remarkable resource on preparing for the coronavirus as an adult with a neuromuscular condition – COVID-19 (Novel Coronavirus) Plan and Preparation Guide for Adults Living with Neuromuscular Disabilities 

There is more information from the NHS regarding patients using NIV here – Clinical guide for the use of acute non-invasive ventilation in adult patients

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