Covid-19 advice for
ILD patients and carers.

The current pandemic of Covid-19 is understandably a source of considerable concern for all patients with long term respiratory conditions who may be feeling very vulnerable now. The most up to date guidance will be found on the nhs and gov.uk websites which you should always refer to. More disease specific guidance will be published nationally soon but as it is a new virus there isn’t data on everything yet.

Some general points – the elderly and those with chronic lung disease, heart disease, respiratory failure, diabetes etc are at increased risk from Coronavirus. Please do take the government advice very seriously about isolating yourselves to limit contact with the public and family members – prevention is the best way forward. Wash hands frequently especially if you have been in public areas and touching things like light switches, door handles, shopping trolley handles etc as virus may lurk there. Try not to touch your face before washing hands (hard for oxygen users). Avoid kissing close contacts and sharing drinking vessels, towels etc.

Anti-fibrotic drugs such as Nintedanib and Pirfenidone are NOT immune suppressants. You should continue to take these as normal though you may be advised to reduce the frequency of blood test monitoring and it is unlikely you will have any lung function testing done for a while.

Those people taking immunosuppressant drugs such as mycophenolate, azathioprine, methotrexate, cyclophosphamide or rituximab and people on high dose ( doses above 20mg prednisolone daily) are more vulnerable again. It is still important to treat your lung disease to keep your lungs as well as they can be but this may need to be balanced against the increased risks of infection. Again, reduced blood monitoring may become necessary in the next few months but please ring your nurse specialist if any concerns (appreciating that we are all extremely busy at the moment and it may take a little longer to get back to you).

Oxygen dependent people should liase directly with their suppliers to ensure they have the right supplies. You may be asked not to keep so many oxygen cylinders at home if only using oxygen for exercise as they may be in shorter supply and you are less likely to use them if in isolation.

Outpatient appointments are likely to all be done over the phone or may be postponed if safe to do so, if you are cancelling appointments please do still let your hospital know you are not coming for appointments so we don’t lose sight of you. All systems are likely to be under considerable strain in the coming months so do please bear with staff and systems whilst we try to do the best for everyone.

Now is the time to think about how you will safely stay at home, who you can call on for help and how you will keep your spirits up when confined indoors more than usual. Remember there are still books to read, music to listen to, games to play and telephone calls to make.

Please do keep in contact via the Facebook Page and look after yourselves.

The WILD team.