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  • Ellie
    replied
    Aisling Byrne If you know the name of your local hospice, check their website on their referral procedure, some hospices take self-referrals.

    If you don't know which hospice covers your area, google hospice in xxxxx (the London borough or suburb)

    Love Ellie xx

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  • matthew55
    replied
    I've been in email contact with my hospice just this morning.

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  • Heather R
    replied
    Well done Linda taking this step, glad it's being fruitful. I met someone ages ago from Hospice, but haven't seen them since. Maybe time to try re-engage.

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  • LindaB
    replied
    Hi Aisling Byrne I was referred by my GP to my local hospice. They do have a community hospice team which is different from my community Neuro rehab team (also MDT)

    So many teams πŸ‘
    Last edited by LindaB; 19 August 2021, 17:03.

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  • Aisling Byrne
    replied
    Hello everyone. I was wondering how to get connected to a hospice team in London. Perhaps this is the same as the community care team that regularly visit and contact us (multidisciplinary). This was coordinated by the GP. They are wonderful. Advice appreciated.

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  • LindaB
    replied
    Originally posted by Mary C View Post
    Hi Matthew, my right hand tremors now so writing is erratic hence I intend to use Predictable App.
    Best wishes
    Mary
    I'm getting the predictable app any day soon. I'll also ask SALT to show me how to use it...IT known to confuse me πŸ™„πŸ‘

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  • matthew55
    replied
    Don't blame you girl. I'm probably going to have give up the pen soon. πŸ˜šπŸ˜„πŸ˜πŸ˜xx

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  • Mary C
    replied
    Hi Matthew, my right hand tremors now so writing is erratic hence I intend to use Predictable App.
    Best wishes
    Mary

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  • matthew55
    replied
    Very true but while I can I will πŸ‘πŸ˜πŸ˜˜xx

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  • Ellie
    replied
    Originally posted by matthew55 View Post
    I still advocate writing before voice apps
    ... providing you can hold a pen well enough. xx

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  • matthew55
    replied
    I still advocate writing before voice apps but that's just me. 😁😘xx

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  • Mary C
    replied
    Hi Jane, my palliative care nurse answered my questions on end of life care in a reassuring way.She prescribed the anticipatory drugs so they are in my home if and when I need to use them as my wish is to remain at home.My husband and family also feel reassured that the palliative team will aim to keep me comfortable at end of life stage.

    She explained at my request how they are used and for what symptoms.
    For me it is important I know what support is possible at home and my family know who to contact any time for advise when I can no longer do so.
    Next week for me its seeing SALT team member to ensure I know how to use the Predictable App(as not IT savvy).My voice is weakening so I want to be prepared that I can communicate even simply via the App.when speech is lost.
    I hope Jane you get answers you need as it might reassure you and offer you the choice if you wish to remain at home.
    Best wishes
    Mary

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  • bromleycross
    replied
    Thank you Ellie that’s the sort of explanation I needed , suppose it’s possible that the Pallative care nurse was vague on her first visit not wishing to upset me. I shall certainly contact them for further information .Jane x

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  • Ellie
    replied
    Warning: contains end of life information - skip post if necessary.

    Originally posted by bromleycross View Post
    I did find the discussion on pain relief quite vague and it would appear I need to express a wish to come off NIV then I would be given something to make me comfortable.
    Just to clarify, pain relief and deciding to discontinue NIV are 2 different things.

    Pain relief is self-explanatory and hospices/palliative care nurses are more likely to recommend stronger, round-the-clock pain relief than a GP, in keeping with their ethos.

    Discontinuing NIV, on the other hand, mostly leads to air hunger, anxiety and, as food and liquid are usually discontinued, the meds given control hunger and thirst feelings too. Opioids, sedatives and secretion supressing meds are typically given using a syringe driver. (I have had several end of life chats with my palliative team)

    I'm not trying to sway you away from Dignitas, who certainly fill a need, but didn't want things left hanging, so to speak.

    Love Ellie.

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  • matthew55
    replied
    I would digi but out of my price bracket. Happily I think nature will provide sooner rather than later πŸ˜‰πŸ˜†πŸ˜„πŸ€—xx

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