Dd is hfa, diagnosed at 3. Also HI, epilepsy. Local services have been crap beyond belief, the CDC have NEVER followed the recommendations in their reports, eg the last report said the slt would email me diet help sheets, we’d be invited to a sensory feeding group, have observations, group therapy and advice. I’ve chased until I was blue leaving various messages but still none of this happened. Even refused a referral back to dietician as the foods she eats (strawberries, chicken nuggets, milk, brioche and plain pasta) cover all the food groups so it’s an acceptable complete diet. (I’ve made a bit of progress since to a few more foods).
The 6 month review appt has come up again (after 14 months this time) and we’ve had yet again no contact in between appts despite efforts. Dd is also Home educated so there are now no services to access. I’m thinking of just cancelling and refusing to engage anymore at all (epilepsy is monitored elsewhere). It’s depressing and futile and has served no purpose beyond winding me up. Dd unbelievably has still NEVER even been given a speech therapist appointment (luckily she is now verbal).
I feel weird not taking her in a way, I was a senco/ teacher and always used to go in about the importance of them, but it’s had zero benefit. I am fed up of sitting in a room with a paed who’s never met her, telling them lots of info, watching them write it all down and then do recommendations that never happen. It’s depressing and otherwise we are happy and progressing
Following the last complain we did have a seat down meeting where ways forward were agreed with people present, these were written down and emails etc confirmed. The complaint closed, it did not happen and I’ve probably left around 20 messages on mobiles, answer phones and with receptionists
Yanbu. My 4 year old has a yearly review by his neurosurgeon at a specialist children's hospital 90 minutes drive away. Once he was there himself, rest of the time he sends a different junior Dr every time. I'm not a Dr snob, I don't need to see the consultant but I want to see the same Dr or at least drs who agree with each other. Thankfully ds's local paediatrician is brilliant. She knows everything about ds, has looked after him since he was born and he adores her. These people are supposed to be helping your Dd. If they are not helping, ditch them.
We’ve had the same at hospitals too with staff changes, wild disagreements and one particularly awful one where due to illness a non-specialist doctor covered the epilepsy clinic and seemly couldn’t comment at all.
Change of staff is probably one of the biggest issues in follow up, however big the promise to follow up they ultimately do not see us personally again so you end up in a loop repeating the issues for the first time