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.

Covid Vaccines

Advice from Professor Francesco Muntoni, Professor Ros Quinlivan, Dr Adnan Manzur and Dr Chiara Marini-Bettolo who are four neuromuscular experts leading the paediatric and adult North Star and SMA Reach networks of neuromuscular health professionals:

In line with the national and international guidelines, we can advise that the Pfizer/BioNTech, Moderna, and Oxford/AstraZeneca vaccine should be fine to receive for those living with a neuromuscular condition including those on immunosuppression treatments. We therefore encourage you to get vaccinated at your earliest opportunity.

Those on immunosuppression may have a reduced immune response (i.e the vaccine will be less effective) but can still have the vaccine.

In line with recent Medicines and Healthcare products Regulatory Agency (MHRA) guidance people under 30 who have had the first AstraZeneca (AZ) vaccine are advised to take the second one. People under 30 who have not had their first vaccine will be offered an alternative to the AZ vaccine.

Please make every effort to avoid exposure to COVID-19. If you feel unwell then please seek a PCR-based test from the national testing centres. If this is positive please let your specialist teams know as soon as you can.

It is important to remember that the Medicines and Healthcare products Regulatory Agency (MHRA) would not have licenced the vaccine if there were any doubts as to its safety.

The latest NHS advice on the AstraZeneca vaccine is as follows:

Reports of extremely rare blood clots

The MHRA is carrying out a detailed review of reports of an extremely rare blood clotting problem affecting a small number of people who have had the Oxford/AstraZeneca vaccine.

The problem can also happen in people who have not been vaccinated and it’s not yet clear why it affects some people.

The COVID-19 vaccine can help stop you getting seriously ill or dying from COVID-19. For people with neuromuscular conditions, the benefits of being vaccinated with the Oxford/AstraZeneca vaccine outweigh any risk of clotting problems.

About Covid19

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 shielding for most of the pandemic. Amongst those who were not officially advised to shield many have concluded that it was safest to do so anyway. 

With more of us getting vaccinated and cases decreasing the advice to shield has now come to an end.

The general guidance on protecting yourself from Covid 19 remains to:

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

We know that outdoor transmission, when not in crowds and when maintaining a 2m social distance, is relatively low risk. When socialising indoors, rooms should be kept well ventilated. Wear a mask if possible when mixing with other households.

For people whose neuromuscular conditions involve respiratory compromise, we would advise a higher level of caution, including considering a return to shielding if cases become 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
  • Balance your perception of the risk of Covid 19 with the effect on your mental health.
  • 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 use PPE when in your property
    • 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 consider it.
  • 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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