Medical Personnel – Please read this before starting any treatment.
My name is ___________ ___________ and I have Duchenne.
My date of birth is __ __ / __ __ / __ __
My emergency contact person is ________________________
They can be reached on _____________________________
The person who can best help you understand my condition and my needs is:
__________________________________________
Relationship __________________________
I give you permission to talk to the person above about my care
If presenting at an emergency department, contact the neurology or neuromuscular team and respiratory team as soon as possible at:
______________________________________________
Telephone: _____________________________________
Email: __________________________
Specialist Nurse ___________________
Consultant __________________________
Please note:
Tests
- Liver enzymes (AST/ALT) will be high on blood tests: this is normal in Duchenne muscular dystrophy and should not prompt liver investigations unless otherwise indicated.
- Other important things to know about my condition (e.g. precautions to be taken with general anaesthetics, some muscle conditions can be associated with abnormal liver tests or be made worse by electrolyte changes)
Emergency Care
- Please do not give me oxygen without my ventilator.
- Please do not give me oxygen without monitoring my carbon dioxide levels
- I am at risk of anaesthetic complications because of my neuromuscular condition. However my condition should NOT be a contra-indication to having an anaesthetic. Early consultation with a senior consultant anaesthetist for neuromuscular conditions is essential to ensure the best management for me.
- Consideration should be given to alternatives to general anaesthesia. (Could sedation, local, regional or epidural anaesthesia, etc, be used, provided I can be comfortable if the procedure is performed under this type of anaesthesia?)
The person to talk to who can help you understand my condition and me is:
_ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _ _
About My Care
I need someone to help me all of the time/some of the time/ for personal care/ I do not need help.
My preferred language is _________________________
The following things make my condition worse/cause me to deteriorate faster:
____________________________________________________________________________________________
The following things can make my condition better/ ease the issues:
____________________________________________________________________________________________
The equipment I use to get around is:
_________________________________________
When sleeping I need the following: (inc. positioning, mattress, equipment):
__________________________________________
The things to be aware of when treating me are:
__________________________________________
Respiratory Care
- I usually have no problem with my breathing muscles*
- I usually have some weakness in my breathing muscles*
- My breathing tests are usually (if known):
- FVC L while sitting ____________ while lying _____________________
- P cough flow L/min ___________
- Oxygen saturations % _________
- I can usually cough on my own*
- My carer helps with my chest physio*
- I need help from a specialist chest physio*
- I use a cough assist device
- I normally require NIV:
- only at night
- during the day
- 24 hours
- never
- I normally require CPAP:
- only at night
- during the day
- 24 hours
- never
- My pressure settings are:
- NIV: ________________________
- CPAP: _________________________
- If I am admitted with breathing problems, please contact the following for advice about managing my condition:
- Dr: ___________________________ Respiratory Consultant Physician
- Tel:_____________________________________________________
- or my respiratory nurse/physiotherapist:
- Name: ________________________________________________________
- Tel: ________________________________________
Coughing: I use/Do not use a cough assist machine
Cardiac Management
I have no known heart problems*
I have minor heart rhythm changes on ECG*
First degree HB / BBB / Left axis deviation*
I have previously had a very abnormal rhythm / cardiac arrest*
I have a pacemaker* – please specify type of pacemaker** _____________________
I have a cardioverter defibrillator (ICD)*
My last pacemaker / ICD check was on __ __ / __ __ / __ __
My last echocardiogram was on __ __ / __ __ / __ __
At: (name of hospital) ________________________________________________________
I have reduced ventricular function. The ejection fraction was** _______
I have been diagnosed with a cardiomyopathy*
My heart valves are: normal / abnormal *
Please contact my cardiologist for further advice:
Dr: _________________________________________________________
Tel: ___________________________
Pompe Disease 