(Copied from instagram)
I am SO PISSED OFF. We both are. The fucking head GP didn’t ring, did he? 😡 *rage screams* 🙄 Lyle phoned the surgery this morning to check the call was happening & notes were on the system (they weren’t, staff then promised they would be by 5.30pm). At 5.40pm Lyle rang the surgery, double checking we were still getting called (entirely because they’re useless & we don’t trust them). Receptionist assured us we were definitely getting called, between then & 7.30pm.
Since then we have done NOTHING but anxiously review our notes, goals, & wait for the phonecall…and he DIDN’T FUCKING RING. Honestly, angry doesn’t even come close – fuming, tearful, terrified…
It is CONSTANT fuck ups from the NHS.
Seizures repeatedly blamed on MH by a handful of arsey GPs, leaving me with no support & having to find everything it ourselves. A GP that left me hanging for 6 months about severe ME; who wrote on my records after the first visit that I was “housebound due to anxiety”, then eventually referred me for phone CBT – for severe ME?! 😡 A dr who said she wouldn’t treat me as she’d “never had a patient with ME or CCI before”. Then – FINALLY! – we get a way to talk w/ the ‘good’ dr without waiting months, waiting ‘just’ a week for a phone appt…& he doesn’t ring even after we’ve checked TWICE that he’s going to?!?
I could cry.
I am SO SCARED for my health, & I CAN’T GET HELP FROM THE NHS. What am I meant to do?! We have no money to go private. I’ve emailed a neurosurgeon in the US who specialises in CCI, but I need £300 just to talk w/ him about my scan, & his receptionist hasn’t even replied to tell me if he’s taking on new patients yet. I’m so desperate for help & I DON’T KNOW WHAT TO FUCKING DO.
And now I have a killer headache from all the stressing & waiting for the shitty call, too 🙄
There’s nothing we can do tonight, everywhere is shut. Tomorrow Lyle phones PALS & start a complaint, then Lyle phoned the surgery & demands to know wtf is going on. Ugh 😡🙄😭