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Thread: Ventilation

  1. #71
    Forum Member Gillette's Avatar
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    Hi Kayleigh,

    Coming home didn't work out quite as planned. The hospital social worker wanted me to stay in hospital until Thursday so that she could assess me. I said no because my family and I were going to be making memories this week. I negotiated with the care company and social services for my area to get the care package to restart on Thursday or Friday of last week. It was all set then the agency told social services that they couldn't provide the care! I think you could say I was angry!

    So, I have been home since Tuesday evening with no care package. My partner is doing his best but my care needs have increased. I now have to wait for a care agency to pick up the package from Brokerage - who knows how long that will take!
    Dina

    Trying to keep positive, but not always managing.

  2. #72
    Forum Member Kayleigh's Avatar
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    Hi Dina,

    I hope you were able to spend some quality time with your family as planned but it must be very difficult for you and your partner to manage without the help of carers.

    I had wrongly presumed that the carers who looked after you before you went into hospital would carry on looking after you once you were home again, with additional hours/carers provided from that agency if necessary. I'm sorry to hear that everything hasn't gone smoothly and you were so badly let down by a care agency at the last minute - I'm not surprised you were angry about the situation and it must be very frustrating for you and your partner that carers are still not in place for you.

    Hopefully social services will chase things up so that carers are put in place very soon - I would have thought they should be doing that urgently but it wouldn't surprise me if the system was too slow and inefficient due to too much beaurocracy!

    It's not fair that you have been let down so badly and I hope the situation for you improves very soon.

    Love
    Kayleigh x

  3. #73
    Forum Member Terry's Avatar
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    Hi Dina;

    Sorry to hear nothing has worked out for you. I guess you let them know of your frustration and anger.

    Do try to involve the Mnda and your specialist team in helping get things sorted.

    Love Terry

  4. #74
    Forum Member Gillette's Avatar
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    Quote Originally Posted by Terry View Post
    Hi Dina;

    Sorry to hear nothing has worked out for you. I guess you let them know of your frustration and anger.

    Do try to involve the Mnda and your specialist team in helping get things sorted.

    Love Terry
    Hi Terry,

    My social worker is coming to see me tomorrow so I shall how that goes, first of all.
    Dina

    Trying to keep positive, but not always managing.

  5. #75
    Forum Member Gillette's Avatar
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    Thank you, Kayleigh. It was probably partly my own fault for being in a hurry to get out of hospital.
    Dina

    Trying to keep positive, but not always managing.

  6. #76
    Forum Member Kayleigh's Avatar
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    Hi Dina,

    I can completely understand why you didn't want to delay getting home - you were well enough to go home and I wonder how many patients are in that situation where they are in hospital longer than they really need to be because of the delay with social workers processing the paperwork (not the patient's fault at all - and can be very frustrating for the patient, as well as the hospital because they probably could do with freeing up the bed!).

    You'd think that with modern technology and the Internet, things wouldn't take so long these days - but there still seems to be far too much beaurocracy and paperwork slowing things down!

    I hope things go well at the meeting tomorrow - hopefully the social worker will be a Speedy Gonzales with the paperwork so that things can get sorted out speedily for you!

    Love Kayleigh x

    P.S ... and getting back on the topic of this thread 'Ventilation' - this forum is a great place to get things off your chest and 'vent your anger' from time to time LOL
    Last edited by Kayleigh; 12th August 2019 at 01:46.

  7. #77
    Forum Member Gillette's Avatar
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    Hi Kayleigh,

    Well, I'm certainly hoping that the provision of care can be sorted soon! And on the subject of using the Nippy, it has been making some peculiar, and loud, noises which stopped me getting to sleep, particularly as the mask and pipe kept vibrating! I'm going to ring the respiratory team about it shortly.
    Dina

    Trying to keep positive, but not always managing.

  8. #78
    Forum Member Kayleigh's Avatar
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    Hi Dina,

    I did notice that, like me, you were a bit of a night owl last night. Some nights I can get to sleep more quickly than on other nights, but there's usually no particular reason for this.

    Sorry to hear you were being kept awake by a rather noisy and complaining Nippy Machine. Perhaps it's as disgruntled as you are about the serious lack of carers you have been provided with - and, unfortunately, it decided to vent it's anger loudly while you were trying to get to sleep!!

    I do hope social services get an urgent wiggle on and promptly sort out some carers for you. Surely it can't be too difficult for them to find enough suitable carers by now, especially considering the large number of care agencies there must be in the Manchester area! Perhaps their excuse is that they only have contracts with certain care agencies - but in urgent situations, I think there should be more flexibility so that social services can provide carers without delay and quickly enough to fully meet every patient's needs.

    I hope the respiratory team can sort out the problems with your grumpy Nippy Machine so that you can get a peaceful night's sleep.

    Love Kayleigh x
    Last edited by Kayleigh; 12th August 2019 at 11:14.

  9. #79
    Forum Member Ellie's Avatar
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    Hi Dina,

    Sorry about the lack of carers - how awfully frustrating and annoying for you Hopefully the social worker sorts it ASAP.

    Re hose & mask vibrations, consider:

    Are the mask straps any looser? They do stretch a bit and the seal can get 'flabby' and vibrate, but I'd say it'd have minimal impact on the nose pillow gel rim/silicone, as it's small?

    Is the hose in a different position than in the hospital? For example, is it hanging or drooping now when before it was high?

    Are you using a humidifier?

    Love Ellie.
    ​Diagnosed 03/2007. Sporadic Definite ALS/MND Limb Onset.
    Eye gaze user - No working limbs - No speech - Feeding tube - Overnight NIV.

  10. #80
    Forum Member Gillette's Avatar
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    Hi Ellie,

    Thanks for the suggestions. The straps are not at all loose. Nothing is flabby (except me!). The hose is well supported and yes, I am using a humidifier.

    The respiratory nurses are going to check it for me tomorrow.
    Dina

    Trying to keep positive, but not always managing.

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