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  • Admin_MND
    replied
    Following more off topic comments we have now closed and locked this thread.

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  • Graham
    replied
    Originally posted by John D View Post
    Come on guys. Life with MND is hard enough without the bitterness of individuals’ previous experiences whatever the rights and wrongs. In my experience the NHS from my GP through to consultants has been wonderful and the MNDA is a fantastic charity offering help and support whenever needed.
    Wrong John.

    You wouldn't last 70 days in hospital, let alone 700 in my condition then.

    It was absolutely horrendous! When you lose your voice you will understand but until that time please just keep your counsel politely speaking.

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  • Graham
    replied
    In fact MNDA Admin, whoever you are, one of the better auxiliaries who resigned, came and worked for me as my PCA for a couple of years! The NHS's loss was my gain!

    I know how the NHS works and the MNDA is in lockstep. I could waste my time following your link but I have better things to do developing my comprehensive care app.

    The NHS is way too big and somehow needs breaking up.

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  • Guest's Avatar
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    Comment removed by admin

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  • matthew55
    replied
    Thanks for that I have been banging on about off thread for ages. 👍🤗😚😘xx

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  • Admin_MND
    replied
    Hi all,

    Can we please remind everyone to stay on topic with this thread, there's a few posts recently that have deviated away from talking about the membership scheme into other serious matters. If you do wish to discuss these matters with us, then please message us separately either via PM or to [email protected] and we'll happily discuss and try and resolve any issues you may have.

    Alternatively, if you wish to give feedback about the Association in some way, then we have an online form on our website that you can fill here - https://www.mndassociation.org/about...t-us/feedback/

    Thanks,

    Forum Admin.

    Leave a comment:


  • Admin_MND
    replied
    Originally posted by Streetwise View Post
    Admin_MND
    Forum Administrator
    can you tell me how I can delete my account?
    Hi Streetwise, you can't delete your account by yourself, but we are able to do this for you. Once deleted, you won't be able log in again, you'll need to re-register and any private messages will be deleted. Posts will remain on the forum but instead of your username it will say 'Guest'.
    We are sorry you feel this way, and we don't like losing any members of the forum.

    If you can send a message either via PM or to [email protected] to confirm that is the course of action you'd like us to do, then we will delete your account for you.

    Thanks,

    Forum Admin.

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  • Guest's Avatar
    Guest replied
    John D you are allowed an opinion and we are allowed an opinion we are using our right to an opinion

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  • Guest's Avatar
    Guest replied

    Admin_MND
    Forum Administrator
    can you tell me how I can delete my account?

    Leave a comment:


  • John D
    replied
    Come on guys. Life with MND is hard enough without the bitterness of individuals’ previous experiences whatever the rights and wrongs. In my experience the NHS from my GP through to consultants has been wonderful and the MNDA is a fantastic charity offering help and support whenever needed.

    Leave a comment:


  • Admin_MND
    replied
    Originally posted by Graham View Post
    So true Streetwise.

    To clarify the MNDA's post, Salford hospital investigated themselves and found that they did nothing wrong. I heard that the young attractive bubbly nurse that was pretty useless was promoted ahead of more experienced staff after I left and that triggered many resignations. I don't know what went on but I can imagine.

    We have to learn lessons that authorities will not learn lessons and this has guided me in the development of my app.

    It is essential that family or friends are able to monitor your care in real time.
    Hi Graham,

    We have shared this link with you before but as a reminder you can submit your feedback via our complaints process https://www.mndassociation.org/about...your-feedback/ and this will be looked into in more detail. The forum isn't an official process so the best route is using the link above.

    Many thanks,

    Forum Admin

    Leave a comment:


  • Admin_MND
    replied
    Originally posted by Streetwise View Post
    Don't expect the mnda to fight for you ,get used to fighting for yourself and tell people on social media what happened, like many organisations they don't like losing face
    hi Streetwise ,

    It is disappointing to see this after we have just responded to your direct message explaining that we are looking into your claims above and having initiated the conversation.

    Can we remind you of the Forum guidelines and ask that you have a refresh of these.

    Thanks,

    Forum Admin

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  • Graham
    replied
    So true Streetwise.

    To clarify the MNDA's post, Salford hospital investigated themselves and found that they did nothing wrong. I heard that the young attractive bubbly nurse that was pretty useless was promoted ahead of more experienced staff after I left and that triggered many resignations. I don't know what went on but I can imagine.

    We have to learn lessons that authorities will not learn lessons and this has guided me in the development of my app.

    It is essential that family or friends are able to monitor your care in real time.

    Leave a comment:


  • Guest's Avatar
    Guest replied
    Don't expect the mnda to fight for you ,get used to fighting for yourself and tell people on social media what happened, like many organisations they don't like losing face

    Leave a comment:


  • Admin_MND
    replied
    Originally posted by Streetwise View Post
    Frankly! the tone of voice, that was used ,when I phoned the association's line, wouldn't get me to tell anyone with autistic neurology about the membership on offer, I try to limit contact with the forum as well, autistic people are one of the groups who are still discriminated against.
    Hi Streetwise ,

    We are sorry to hear that you have experienced issues when connecting us.

    If you could message us with further information about your experience we can look into this. We also welcome any suggestions you have for how people with autism could be helped further when calling us.

    Could you please also confirm if it was our MND Connect or the Fundraising line you called? This will really help us with making sure your feedback is shared with the correct departments.

    Many thanks,

    Forum Admin

    Leave a comment:

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