Suffolk County Council

As a family with a child with very specific medical and learning disability needs we've found the safeguarding process almost laughable at times. We have even done a safeguarding ourselves to try and get more help but when they've called nothing else is done to address the issue and they just say you're doing your best. They themselves have identified risks but then put nothing in place to address the issue.

One of my children has been awarded respite care. A judge has said that I should have a carers assessment but when I spoke to the team about this I was told that my sons respite is my respite and that I wouldn't be given a carers assessment even though my other children have the same condition just to a lesser extent but still have high needs, so when do I get my respite. A real lack of support for family carers.

We can't even get a social worker for our son. We've been told by other professionals at his London hospital that elsewhere children with his difficulties have one but we are told that he isn't of high enough need. It means that every time we need something we have to go through the tribunal process. To get an OT assessment we were told would take three months but we are now 9 months in and still waiting, you just get to the point where you stop chasing them and find other solutions, may be that's what they want! The assessments written are really poor and at times have been inaccurate.

As a carer I requested respite care for my wife but although I was told that funding was available I had book and arrange the care with in a 3 week timeframe otherwise I would lose the funding. There was just too little time and in the end we didn't use the funding. The whole care system is flawed, every time you ask someone something its never their responsibility and to contact someone else, so much for no wrong door!

Our section 17 report by social services said our son needed '52 week provison paying attention to holiday periods'. When we asked for this to be put into place, the manager of the team simply opened the report and took it out without meeting or speaking to my son or me first.

For children with additional needs it can take a long time to get the support needed. Between our first contact and an actual MDT assessment it has taken nearly a year. In the interim we should get support from the Specialist Health Visitor and although they are very good they have large case loads. Even starting all of this a long time ago it's unlikely that the reports that are needed for our child to go to school and get the support they need won't be done in time. Its often a shocking fight to get children the support they need. Professionals can never answer why they haven't done things when they should've been done and it just delays support for the child. ECHP is due for review but we haven't even had last years report finalised yet.

There are no groups and no health visitor clinic now at my local hub and there is little to no information about support available to new mums. Apart from having a newborn/1 year and 2 year check, there is no activity there. You can't just drop in anymore and a lot of mums can't afford to pay to attend sessions put on by private providers, so they just aren't going to activities.

My child has additional needs and I spoke to a health visitor to get a referral through to the community dental service as he will definitely need to be seen by them but it took 8 months of chasing to get a response and to then be told that I needed to find a dentist to do the referral.

The support offered by speech and language for children really skirts around the issues rather than actually helping in any meaningful way and don't seem to get any meaningful responses from health visitors.

I've found the support offered by speech and language really limited and don't really feel the issues are being adequately addressed.