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Please HELP!

NAS96565

Hello all, 

The short version of our story so far…. My child had just started nursery back in 2016 when it was noticed by teachers she was expressing traits relating to ASD.

She was referred by her GP at this time. We began attending various appointments at the local paediatrics hospital, and all reports said the same thing. She was indeed showing traits of autism and that she would be going to panel for diagnosis.

Fast forward to today. She’s 11 and has just started high school. she is struggling with various aspects related to her autism and has also expressed ‘she’s hopes she dies’. Without diagnosis she has very minimal support and it’s beginning to take its toll. 

I am still waiting for her case to be heard at panel! It’s been 8 years and not one professional has told me why it has taken so long! I’ve had various apologies and recognition that she had been ‘let down’ but we are still no closer! I’ve lost all hope and patience and I need help but don’t know where to go or who to ask. 

I’ve raised this with PALs twice but no one is reaching out with any useful information or answers. 

Can anyone offer any advice? I’d be very appreciative 

  • I suggest you take legal advice. If cost is an issue, check if you can get initial free advice under your household insurance policy, as a member of a trades union etc., or go to a Law Centre, CAB etc.. Sometimes a first solicitor's letter is enough to get attention.

    I have concerns about PALS being a bit too close to the health authority. Have you used the NHS complaints procedure? It is quite complex, but you can escalate complaints to the Health Service Commissioner.

    If your child has an EHCP, it might be possible to take the case to SENDIST. It depends on the circumstances, and you would do well to take advice from a specialist advice service.

    Finally you can write to your MP.

    The old adage  " the squeaky wheel gets the oil"  applies here ... sadly one sometimes has to keep on making a  fuss until the service takes notice.

  • Hi

    Really sorry to hear of your story. That should never happen to a young person or anyone really. My main focus for my son was to get the diagnosis before high school and it sounds like that was your preferred route.

    I did a right to choose pathway for my son with Clinical Partners, it was a 7 month wait and they are NHS affiliated. I have literally just got a referral from the Gp’s for myself today. From what I can gather the wait is 7-10 months now but at least you will get the assessment your daughter needs.

    Good luck

  • in reply to Peter

    Thank you for taking the time to reply. This will definitely be something I’ll be looking into Blush

  • I read recently that 40% of clinical negligence lawsuits these days are for delayed diagnosis or treatment. https://www.theguardian.com/society/2019/mar/22/patients-nhs-long-waiting-time-watchdog-national-audit-office

    Psychological damage also counts. In fact you can actually sue someone for personal injury if the psychological damage is serious, just like you could for a broken leg. And personal injury law has no win no fee lawyers.

    If a delay in diagnosis has caused your child so much psychological damage that it amounts to personal injury ... maybe go and see lawyer on your daughter behalf.

    Money can't heal all ills ... but it can buy a private diagnosis.