JayJay - I'm really surprised and sad that you've had such a negative experience. Like you, I have a daughter who has had special medical needs. It was detected at 17 weeks of pregnancy that she had a possibly lethal skeletal malformation. Since then, I was followed very closely by the public hospital system, having a 4D ultrasound every 3-4 weeks, meeting with a geneticist who travelled from QEH to Tsan Yuk to see me, and meeting with the neonatologist who would be in charge of her care in the NICU when she was born.
At birth, she had problems breathing and other complications and she spent her first four months in NICU at QMH. After discharge, she has been seen by many specialists and therapists in the public system. So far, the different specialties that she sees are neonatology, ENT, plastic surgery (for cleft palate), pediatric dentist, orthopedic doctor, physiotherapist, occupational therapist and medical social workers. Some of the doctors I like more than others, some are better than others, but none of them I can fault on their medical expertise. My biggest frustrations are the long waiting times (once I waited nearly 3 hours for an orthopedic appointment) and sometimes the lack of "personal care" (although some of the doctors are brilliant at that as well).
I have found that in general, the doctors take all my concerns seriously. At the ENT appointment recently, I mentioned that hearing loss was common in her condition and while I know she can hear, her speech development was slower than my older daughter's and I was wondering if we could get her hearing retested - and they arranged that for me rather than just blowing me off. Also at our latest neonatology appointment, I mentioned that she seemed to be allergic to dairy and they referred me to the immunologist (yet another specialty) who will perform allergy testing on her.
This is my 2nd child, my first had no health complications and we always followed up through MCHC and had an overall positive experience there as well.
I'm sorry you have had a poor experience with the public system - but for many people, it can be and it is a positive experience.