The Royal Brompton & Harefield NHS Foundation Trust have kindly given us permission to share the following advice sheet that has been sent to some patients.
We would like to state that the situation with COVID-19 is fast changing and advice may change at any time. Also everyone should consult their own specialists and hospitals for advice, not everyone with DMD is the same!
There is also a lot of fake information and advice being spread around both social and print media. Please always consult official information sources and never try medication or treatments without contacting your GP or another medical expert.
Sleep and Ventilation Team
It is important to remember not everyone will get COVID-19 and most people will get better from it.
The evidence from China and Italy suggests that older members of the community and those with co-morbidities including heart disease are more at risk if they contract COVID-19. Being younger counts in your favor and if you contract COVID-19, it might be mild like flu.
We recommend hunkering down at home (including working from home if able). Dull though it can be, we recommend social distancing, avoiding crowds and even small gatherings as per the advice from Public Health England. Remember to wash you hands regularly, avoid touching your face and ensuring if your face needs to be touched, hands are washed first. If anyone you know is unwell or has symptoms of COVID-19 (fever, cough, shortness of breath) ask them to keep away from you. We also recommend that you have the flu vaccine if you have not already had it. It is not too late! Focus on new learning, reading, constructive activities. We know you are a very resourceful group!
If you have a temperature and start coughing and feel breathless you should ring 111 according to most recent guidance. They will be able to advise you and decide what the best course of action for you is.
If it is safe for you to stay at home: use your ventilator more intensively to rest on, take paracetamol for the fever and any joint ache. Ensure that you stay hydrated by increasing your fluids. You may not feel hungry, but it is important to try to eat to keep up your strength. As it is a new virus there is no specific treatment and antibiotics won’t help, at least in first instance. However, it is good to have a reserve course at home anyway and take if you remain poorly and phlegm is green or yellow, or if advised by GP. This maybe something you want to organize now. We do not recommend a specific antibiotic. Your GP will know what antibiotics have worked in the past and if you have any allergies.
If you are admitted to hospital: our Outreach team can offer telephone advice when available.
Don’t forget that this episode is expected to last months only. So, there is light at the end of the tunnel!
Frequently asked questions:
Should I change my ventilator filter more often?
There is no evidence to support this.
Do I need to change my tubing more often?
Again, there is no evidence for this. If you want, you can sterilize it with Milton or put it in the dishwasher. Please make sure you have a spare tube.
Should I ask for nebulisers?
At present there is no evidence to say starting nebulisers will help. You should only add this into treatment if a medical team has suggested it.
How often should I change my tracheostomy?
Most tracheostomy tubes can safely be kept in for 3 months. Therefore, unless recommended otherwise your tracheostomy tube can be changed every 3 months.
Please also visit our DMD Pathfinders statement regarding Coronavirus (COVID-19) page which provides further useful information.