How to stay empowered when your sick child becomes 16?
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How to stay empowered when your sick child becomes 16?
My child has been ill with CFS/ME for 5 years.
Now she is 16 and suddenly she is expected to book appointments or change them herself, despite being bed ridden, noise sensitive (so unable to use the phone) and, due to cognitive impairment, unable to read.
When I asked for permission to be noted on her records that I have her permission to make arrangements for her, I was told that this is not possible. How do we get the hospitals and GP surgery to accept that it is her wish I carry on dealing with this aspect of her health care?
The most difficult thing is the appointment systems that don't have access to the fact that someone over 16 is too ill to come to the phone to give permission for me to book or change an appointment on their behalf.
Now she is 16 and suddenly she is expected to book appointments or change them herself, despite being bed ridden, noise sensitive (so unable to use the phone) and, due to cognitive impairment, unable to read.
When I asked for permission to be noted on her records that I have her permission to make arrangements for her, I was told that this is not possible. How do we get the hospitals and GP surgery to accept that it is her wish I carry on dealing with this aspect of her health care?
The most difficult thing is the appointment systems that don't have access to the fact that someone over 16 is too ill to come to the phone to give permission for me to book or change an appointment on their behalf.
Re: How to stay empowered when your sick child becomes 16?
Put all the requests In writing to practice managers or clinics I know it's exhausting my husband faces the same battle even my IMCA was asked for evidence that se was speaking on my behalf recently!!!