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

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Marty772
Marty772 Community member Posts: 2 Listener
edited October 2018 in Children, parents, and families
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.

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  • thespiceman
    thespiceman Community member Posts: 6,388 Disability Gamechanger
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    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

    @thespiceman
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  • Ami2301
    Ami2301 Community member Posts: 7,942 Disability Gamechanger
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    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
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  • KellyParentAdvisor
    KellyParentAdvisor Community member Posts: 32 Courageous
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    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?
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