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  • Guest's Avatar
    Guest replied
    Rose ended up with two iPads so that she could switch between them and never be unable to 'speak'. One was very old, but still worked and one was a smaller mini.

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  • nicky
    replied
    Thank you all for such quick responses. Katrina you are so lovely offering a donation, thank you but we will work it out. I will get back on to the salt team next week armed with information and will let you know if I get a better response. Thanks Nicky x

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  • Ellie
    replied
    Hi Nicky,


    That is awful to hear. You may need to kick up a stink.
    Below is an extract from the MNDA’s information sheet 7C; Speech and Communication, taken from main website.

    "What funding is available?
    Try not to rush into private purchases before being assessed, as many communication aids are very expensive and your needs are likely to change as MND progresses.
    You may be able to access support and funding for communication aids from: “
    The NHS: you are strongly recommended to consult your SLT for an assessment. They will support requests for equipment trials and funding requests from local authorities or health and social care trusts in Northern Ireland. They can refer you to a specialised AAC service known as a ‘hub’ if complex high-tech equipment is needed.
    Equipment provided under the NHS is normally loaned for as long as you need it and replaced as your needs change. If there is a problem with the equipment contact your SLT. They may be able to solve any issues, or will refer back to the relevant specialised AAC service if necessary.
    The MND Association: we may be able to offer a limited amount of financial support where statutory services cannot supply. This can only be given following an assessment by your SLT.”


    Hope your mum gets the equipment she needs

    Ellie..

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  • Barry52
    replied
    Hi Nicky,

    This treatment of patients is totally unacceptable. Stand up for your rights under guidelines published in March this year. If you google NHS AAC you will find papers on the subject and if necessary involve your local MP. MND connect might help you as we are all entitled to assisted augmented communication (AAC) if our voice fails.

    Barry

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  • Katrina36
    replied
    Hi Nicky, I think that's terrible, I think the iPad should come as a standard part of mnd and losing the ability to speak, are you able to set up like a go fund me page, I'd be happy to make some sort of donation towards the cost of one.... katrina x

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  • nicky
    replied
    Hi Barry I just rang the salt team about getting an iPad for mum. They said there was no funding and the family should club together to get her one. A bit disappointed how put out they sounded. Any thoughts ? Thanks nicky

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  • Barry52
    replied
    Hi Nicky,

    I'm sorry your mum missed the opportunity to record her voice but I hope she is able to communicate via a tablet and speech app. It is great that you are recording on her behalf as family members can sound alike.

    Best wishes,

    Barry

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  • nicky
    replied
    My mum wanted to do voice banking. A lovely lady called Kim came out to show how to do it, unfortunately we left it too late and her voice was not strong enough. Kim is now helping me to do it for her, which I'm very grateful for, but has dawned on me that when her voice finally goes, I will never hear her again. Even if your lucky enough to keep your voice and never need to use the banking you can always donate your voice to someone else.

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  • Barry52
    replied
    Banking your voice is free using modeltalker, it is the software app that costs. If your voice shows any signs of altering then ask for referral to a speech and language therapist. The SALT should then obtain an iPad or android tablet plus app to run a text to speech program.

    I repeat what I said in an earlier post that the provision of this is an NHS statutory requirement.

    Nettie

    It is recognised that 80% of MND patients will experience speech issues during the illness.

    Barry

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  • Guest's Avatar
    Guest replied
    Do most MND patients end up with voice issues? This is something I don't know (along with a lot of other things).
    If so, voice banking should be suggested to and supported for all of you!
    My Trevor's first symptoms were slurred speech and this progressed quickly so it was out if the question for him. He did however find a rather sophisticated gent's voice (Charles I think) that suited his image .... lol) in Predictable but had to put up with a female voice on his mobile phone .... only used in dire emergencies thank heavens!
    Voice banking sounds like a real blessing if you can do it in the early stage of MND and don't wait till speech problems start.
    Love Nettie

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  • Terry
    replied
    Hi;

    I went to a "Assistive Technology" event yesterday, run by the Mnda. One of the thing bought up was the strong possibility of Model Talker soon charging for it's service and it could be about £80. There at least two other companies that do a similar service but they probably charge more.

    So even more reason for trying to do it soon but don't be put off when they charge. I believe that you will still be able to try the first bit free to see if your voice and set up is good enough to be used.

    Love Terry

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  • Barry52
    replied
    Hi Dippy,

    Before you rush out and spend your money, your local NHS should provide an iPad and app to support your voice recording. They have to provide this by law. I have one that came via my speech therapist. Good luck.

    Barry

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  • Terry
    replied
    Well done for completing voice banking Dippy;

    You have been busy, I think that I pad's have better talking apps/programs than Android systems. Speak to your SALT about it. Also Model Talker might give you some guidance. "Speak It" is quite a good app on the I Pad and is cheep. I don't know if model talker works with that but they will know.

    Love Terry

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  • Guest's Avatar
    Guest replied
    Hi All
    I banked my voice and I need advice whats the best ipad etc to transfer and use it on ?
    I'm not very good with technology etc.
    Many thanks
    Dippy

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  • njm
    replied
    Lee:
    thank you for this excellent guide. I too have banked Modeltalker. I too encourage anyone who can talk to get onto it asap. You guide is a superb tool.

    charles

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