Our daughter isn't getting the help she needs — Scope | Disability forum

Our daughter isn't getting the help she needs

Marty772 Member Posts: 2 Listener
Hi, I'm a RAF Disabled Veteran with severe & complex PTSD & physical injuries/disabilities including chronic & severe pain. My wife had to give up her career as a RSCN. We have 2Daughters, both with different & complex disabilities themselves unfortunately ours youngest we noticed at an early age had learning difficulties which some were identified but the others we had to fight ridiculously for her to be recognised & get help to assist her, almost a year ago now & has been suffering with seizures( epileptic fits). Since it happened we feel that our daughter has been grossly failed by the NHS service which have been ridiculously slow but we think extremely poor in getting the help & support our daughter needs. They still haven't given her any medication to help her, nor have they given us any information following her EEG test which we had to fight for! They never completed anything to help us or our daughter & yet we are still waiting. Plus as she's a special needs child who attends a special needs school, we feel that the NHS are failing our daughter.


  • thespiceman
    thespiceman Member Posts: 6,389 Disability Gamechanger
    Hello @Marty772 Pleased to meet you welcome.

    Thank you for sharing and joining.

    Sorry what has happened I am sure there will be members of our community who can identify your situation and be in touch.

    We are a friendly, supportive community.

    Lots of advice, information. Please ask if we can advise on anything. Please ask.

    Hope that helps.

    Please take care

    Community Champion
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  • Ami2301
    Ami2301 Member, Community Co-Production Group Posts: 7,945 Disability Gamechanger
    Hi @Marty772 welcome to the community!

    Sorry for what you all have been through, this must be a stressful time for you all. Unfortunately I am unsure how to advise, however members of the community may be or have been in a similar position as yourself and they will be more than happy to offer support.

    If there is anything else that we can do to help you then please do not hesitate to ask! :)
    Disability Gamechanger - 2019
  • KellyParentAdvisor
    KellyParentAdvisor Member Posts: 32 Courageous
    Hi @Marty772, welcome to the community. What a stressful time you must be having. Have you approached your own GP again to see if they can chase up the results from the EEG and see about the medication? Or do you have a particular consultant you see at hospital? It sounds as though you've slipped from their conscience and need to shout louder to be heard! 

    What have school said? They must be concerned about her having fits while there? Is there anything they can do to help you get things moving again?