We got a letter through the post this weekend. It was from the NHS saying they’d had a referral asking for an urgent appointment with Anon, because ‘her GP was worried’ about her. It didn’t give us a day or time for an appointment though, it asked Anon to ring them.
This really irked me. First of all we have no money at the moment, and the phone we are having to use because mine is broken is pay as you go. We need all the credit we can get as we are trying to sort out the money stuff.
When I tried ringing the number there was no answer, so that was good.
The letter also said we have five days to get in touch with them before we are automatically discharged from their service, and they will assume we don’t need their help…we have been waiting for this appointment for over two months and they give us five days?!
Secondly (and I know it shouldn’t) but it seriously annoys me how everyone expects Anon to be able to call them. I get that they don’t know she is terrified of phones, but I wish professionals were more understanding of this…I’ve had a social worker in the past (who we had been seeing for several months and was used to talking to me on the phone) tell me to ‘just try giving the phone to Anon’ – guess what, it did nothing but upset her and stress her out! Also she can barely function at the moment she’d never be able to talk to a stranger on the phone!
Anon had an okay day yesterday, so I took advantage of this and wrote out a detailed list of old and new symptoms, and things that cause us huge issues. When I get in touch with whoever it is, I’m hoping I can send this information to them. That way they can read it before we see them, and they shouldn’t need to take as much information from us at the actual appointment…Anon gets so stressed now that she finds it hard to function. Digesting questions and trying to form answers is a real struggle.
I figured it’s good to jot things down anyway, there’s always something we forget to mention at appointments.
Today was a bad day. Anon struggled with rage, bitterness and despair. She was hearing voices, muffled in the distance or whispers that she couldn’t make out, and I could just tell she was trying hard to bounce back and appear ‘normal’.
It’s hard. It’s hard for her and it’s hard for me.
I’m so scared that instead of offering us help and support this appointment will make everything worse.