where do you guys go to when no one is helping or even listening???

[devientenigma]

I have tried all sorts to get help with my ds numerous issues. No one seems to be able to help....so where do you go when all else fails. TIA x

we have unfortunately discovered that in order to get so called professionals to move their asses, you have to send in written complaints about the service (or lack of it).

sorry for you Devient, dont know what else to suggest other than same as tightrope - write letter of complaint. How about local MP would they be able to help. My heart goes out to you, its hard on a day to day basis bringing up a special needs child never mind having a fight for everything you need. :(

I guess it depends if professionals are acknowledging the problems but say not their area or if sweeping under carpet. If just ignoring can you ask for second opinion, or complain. If not their area can gp refer to new specialists out of area?

sorry to hear things are no better devient Are there any charities contected to your ds' condition that can help you fight for help?

or connected even

I was told by a lovely professional today - strictly off the record of course - that her advice is always to complain to the highest level possible, loudly, formally and demanding a formal written response by a certain date, as its the only way anything ever changes.

How about the local press? Someone said the LEA responded with SALT quickly after she threatened said she was going to the press with her concerns about lack of funding essential services.

sometimes, I think, it's case of, he who shouts loudest. x

All i can think of is local mp or tertiary referral to another hospital if there is a specific place that might be good for particular issues

Hi, I read this thread last night and contacted my local MP about lack of services for children with hidden disabilities. Been waiting for SALT and OT for 6 months and on the waiting list for dx which could be a few years still. I emailed him last night and had a response this morning followed by a phone call. his secretary is looking into it and will call me tomorrow.

Just wanted to say thanks I would otherwise never have even thought to contact him.

I contacted my MP. He has helped. I never banged on desks or lost my cool but made it very clear that the services available to us were not accessible and therefore, useless.

I now have more of the help (specific) needed for my ds.

So sorry you're banging your head against a brick wall.

I'm thinking MP too!!!