During the current pandemic, many of the usual DMD appointments are now taking place online.

We have created this document to help you prepare to make sure you get the most out of all the appointments.

To start with, you should make contact with your specialist center to find out if telephone or video consultation appointments are available. Some hospitals can only carry out phone consultations.

The advantages of virtual appointments:

• Avoiding hospital visit & potential exposure to COVID-19
• You can still discuss concerns, treatment options and clinical trial opportunities
• The doctor can see, if on a video call, generally how the patient’s motor function is, they can look at gait and get a general idea of your health
• It eliminates time needed to travel to appointments

The disadvantages of virtual appointments:

• Examination is in less detail
• Certain aspects can’t be tested e.g. for physio assessment reflexes such as strength testing. For cardio assessment such as ECG and ECHO
• Some people don’t feel comfortable talking on camera or by phone
• You may not be able to see your ‘usual team’ of multidisciplinary experts.
• Problems if transitioning to adult care

Suggestions to get the most out of your virtual appointment:

PREPARE

A nurse or coordinator should contact you in advance of the call. If they do not and you have an appointment coming up, contact them.

Ask them questions to help you understand the process and if you need to do anything before the call e.g. weigh, measure or video the patient.

Ask if you need to have any equipment or medication with you

For physio appointments: Ask if there are aspects of the physio assessment that can be done over the phone or filmed in advance.

Make sure you know who to contact if there are any problems. Get their contact details.

Get to know the technology: Visits can be done on the phone. You don’t have to use video. Some NHS appointments may only use the phone.

Allow time to sign in if on video call.

If you have any specific questions or concerns you want to make sure you discuss, write them down before and have them in front of you during the call

DURING THE CALL

Be honest and open with your concerns.

Make sure the patient is with you, ideally in loose clothing.

Make sure there is space around you for the doctor or physio to evaluate your child if it is a video call. Set time aside.

It’s a learning curve for everyone, be patient.

Don’t be afraid to ask for the actions to be repeated back at the end so everyone is clear.

Be at home so you can show medication and equipment e.g. don’t do in the car whilst travelling.

Have a pen and paper to write down anything you want to remember from the call.

AFTER THE CALL

Don’t be frightened of reaching out to your doctor if you feel there is a problem. They want to hear from you.

If concerns are found during the consultation, remote programs can be put in place to help your child e.g. exercise programs.

It might also mean you have to go into the hospital for further tests. Try not to worry about this. It’s important that your child has these tests done.

In the future - equipment is being developed for patients to use during consultations to access functions

If you have any questions, or would like to speak with us to get further advice, please email us [email protected]