struggling to get the diagnosis/help they need — Scope | Disability forum
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struggling to get the diagnosis/help they need

Tyrrell2374 Member Posts: 1 Listener
Hello, I have 2 Sons, aged 3 and 5. Both have problems of their own but I am struggling to get the diagnosis/help they need.  It’s so frustrating.

Son has just been referred to Camhs but it’s taking so long and he’s already had a year at school but we are still no further forward.

Any advice on anything I can do to help would be very much appreciated.

Thanks in advance

Claire x


  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @Tyrrell2374, welcome to the community! It's great to have you here.

    Do you mind telling us a little more about what sort of help you're trying to pursue at the moment? Hopefully the community will be able to offer some suggestions! 
  • JennysDad
    JennysDad Member Posts: 2,299 Disability Gamechanger
    Hello Claire @Tyrrell2374 and a very warm welcome to you.
    I'm seconding Pippa's post here - we really do want to help and it would assist the community if we knew more.
    When you feel up to it - there is no hurry and no pressure so far as we are concerned - can you tell us a little more about your situation? It might be useful to know something of the conditions your children have - to have some idea of what their problems/behaviours are, even if you do not yet have a diagnosis, and it would help to know who you have consulted so far and what the results have been. Has your GP been any use, for example? Have you had referrals to others beside CAMHS? I know, for one thing, that CAMHS is massively overstretched through financial cutbacks.
    Don't worry about the number of words it takes to tell your story - it will be read and we will try to find the right people for you talk to and the best advice that can be offered to you.
    Really sorry you're having such a tough time,
    Warmest best wishes,
  • Pippa_Alumni
    Pippa_Alumni Scope alumni Posts: 5,798 Disability Gamechanger
    Hi @Tyrrell2374, how are you doing? 
  • LFC1971
    LFC1971 Member Posts: 1 Listener
    Just seen this post I also am having this problem for the past 8 year now had social services family support referal but at present no one Is Involved my child has had the genetic testing came back negative now peadiatrician has closed as said its not health but being a parent of four children aged from 28 to 11 i know this one has Issues like not remembering what hes been told never realises that hes a sheep within his circle of so called friends getting in trouble with the law but no one will actually help they promise to but dont do anything also in a smaller school for kids with problems been there over a year they wont apply for a EHCP but says my child reads as a 7 year old im really at a loss who to turn to now for the help he needs and a trusted place too.
    thanks for reading.
  • feir
    feir Member Posts: 395 Pioneering
    It took 4 years with social services 'help' to diagnose one of my sons (they didn't actually diagnose him but went through all their protocols to do totally the wrong things and make life harder for my family,he actually got diagnosed with a cleft submucous palette after some dental work), and another couple of years for my other. Honestly if you have disabled kids i would skip SS and start looking to experts for help.

    Use their complaints system also, i actually got their policy on parent and toddler groups changed when i found out they were letting known child abusers near our children in these groups (and in their babysitting groups where we were leaving them not in our care).


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