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Thread: Problems with Headup collar / Sheffield Snood

  1. #1
    Forum Member Julip's Avatar
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    Problems with Headup collar / Sheffield Snood

    Michael has been using his Headup collar for short periods and after about 5 hours of use the adhesive began to lift off the front support leaving the Velcro on the collar and the support peeling off. He laso has a really sore chin from minimal contact, although this is relieved a little by a gel pad given to him by the respiratory physios. I have repeatedly contacted Talarmade, the company who supplies them, with no luck. Has anyone else had similar issues, or is this a new one to you?
    Last edited by Julip; 21st September 2018 at 10:24. Reason: Typo

  2. #2
    Forum Member Ellie's Avatar
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    That's so disappointing to hear Julip.

    Sueb posted recently that her Steve's TalarMade HeadUp collar had issues with the supports too.

    Have you complained to whoever supplied it? Shame on TalarMade for poor customer service

    It's worthwhile giving formal feedback to MND Connect/MNDA and Michael's MND Nurse too, as well as to SITRAN whose project it was.

    I have an original Sheffield Snood, not the Head Up, and have no issues despite wearing it daily for > 2 years. The TalarMade supports are obviously of inferior quality...

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

  3. #3
    Forum Member Ellie's Avatar
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    If anyone is having quality of manufacturing issues with their HeadUp collar by TalarMade (formerly known as the Sheffield Snood), I'd urge you to give feedback to SITraN Neuroscience@sheffield.ac.uk

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

  4. #4
    Forum Member Sueb's Avatar
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    Hi Julip

    Steve has had the same issues, we also know off someone else too. Because Steve had the original he is using the original attachments. We gave feedback to Orthics, but think it is a good idea as Ellie says to report it to SITraN

  5. #5
    Forum Member Barry52's Avatar
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    Hi all,

    I will report this to the research advisory group in SITraN of which I am a member.

    Best wishes,
    Barry
    Iím going to do this even if it kills me!

  6. #6
    Forum Member Julip's Avatar
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    Many thanks Barry. This is the response I got from them:

    Hi Julia,



    Apologies for not responding to your email earlier. I have been out of the office teaching.



    Your feedback on the HeadUp Collar is most appreciated.



    As the collar is now being used increasingly we are aware that some improvements are required despite the exhaustive developmental process.



    The adhesive issue is already being addressed and should be resolved quickly. We will happily replace ant struts where delamination has occurred.



    The fabric section of the collar is currently one size as a one size fits all. Moving forwards different shapes of collar will be manufactured to different body profile shapes. The extensionpanel is being used by around 15% of users at present. Once the reshaping of the fabric components is complete they should not be needed. This is also in progress.



    We have attempted to dissipate heat using Outlast in the material which is thermoregulating. We continue to try to develop ways of making the collar more comfortable and cooler



    Best wishes



    Simon Dickinson

    Clinical Director & Consultant Orthotist

  7. #7
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    Heads up collar yes or no

    Hi to everyone in this thread, my wife has recently started down the road of needing a collar.
    We have had two types so far but both are breaking down the skin under her chin.
    I have asked the physio if the heads up collar would be suitable.
    She is looking into it but has never seen one before.
    I came across it on the internet.
    Sorry you are all having problems with yours.
    But at the moment five hours continually with a collar on would be fantastic for my wife.
    She can only manage a short period of time before taking the ones we have off.
    Even with the problems you are having with the heads up would you recommend it.

  8. #8
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    Quote Originally Posted by Royo View Post
    Hi to everyone in this thread, my wife has recently started down the road of needing a collar.
    We have had two types so far but both are breaking down the skin under her chin.
    I have asked the physio if the heads up collar would be suitable.
    She is looking into it but has never seen one before.
    I came across it on the internet.
    Sorry you are all having problems with yours.
    But at the moment five hours continually with a collar on would be fantastic for my wife.
    She can only manage a short period of time before taking the ones we have off.
    Even with the problems you are having with the heads up would you recommend it.
    Hi Royo
    I have been using the Head Up Collar collar (previously called the Sheffield snood). for three years and I wear it most of the day. I would really struggle without it and I find it much better than any of the other types. Like other contributors I have had issues with some of the latest design of supports but Talarmade have sent me replacements. Hopefully they will solve the problem soon. I would absolutely recommend that you try and obtain the collar for your wife, it could be really helpful for her. I think it should now be available on the NHS. Best wishes Philip.

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