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Hospice and Palliative Care for People with ALS

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  • Bowler
    replied
    Originally posted by Johnny5 View Post
    I did not feel it was badgering Bowler. I was replying to negative posts on the issue. MND and ALS Associations are mostly in agreement with hospice and palliative care to the best of my knowledge. Giving negative and false information to forum members about this webinar is negative. Meanwhile, the opportunity to review all of this information from the comfort of your home is beneficial to those of us dealing with this issue.
    I was trying to be subtle which obviously failed so I ask directly have you a business interest in a hospice or the webinar hosts.

    Regarding your attack on arguably THE most respected / loved member of the forum I simply say you offend Ellie and you offend me.

    Leave a comment:


  • denise
    replied
    Hi Johnny
    your attitude is rather aggressive you need to chill. We discuss things here like we are in a safe, friendly place not in a boxing ring.
    Cool it and share your thoughts in a nicer way then we might respond more favourably. Keep it up like this and you will be talking to yourself.

    Leave a comment:


  • LindaB
    replied
    Originally posted by Ellie View Post

    I expect an apology for that slanderous comment, thank you.

    I am an ardent supporter of hospices and of palliative care and the fantastic services they offer and have been under their care for over 14 years. Any regular forum user knows that I am quick to suggest new and struggling members make contact with their local hospice and/or palliative care team, if not an integrated service.

    Nobody who knows me can accuse me of negativity towards hospices.
    100% Ellie I've read many posts from you reassuring forum members about hospice/palliative care and singing the praises of the support given. Never ever ever a negative word!!!!!

    Leave a comment:


  • LindaB
    replied
    Johnny5 the USA & UK may have different approaches to Hospice & Palliative Care. That's not to say your webinar may not be of interest however may not reflect the UK experience. Therefore forum members choosing to view need to be very clear about that. I wouldn't want anyone to be 'put off' being supported by their local hospice team. I've found their support invaluable.
    Also useful to point out to those choosing to view that the content could be 'difficult' to hear.

    Thanks for the link. Useful to see how things are done the other side of the pond๐Ÿ‘๐Ÿป๐Ÿ˜‰

    Leave a comment:


  • Ellie
    replied

    Originally posted by Johnny5 View Post
    Giving negative and false information to forum members about this webinar is negative.
    I expect an apology for that slanderous comment, thank you.

    I am an ardent supporter of hospices and of palliative care and the fantastic services they offer and have been under their care for over 14 years. Any regular forum user knows that I am quick to suggest new and struggling members make contact with their local hospice and/or palliative care team, if not an integrated service.

    Nobody who knows me can accuse me of negativity towards hospices.

    Leave a comment:


  • matthew55
    replied
    I'm with you 100% girl ๐Ÿ’–๐Ÿ˜๐Ÿ˜˜๐Ÿค—xx

    Leave a comment:


  • Ellie
    replied
    Johnny, you have missed the biggest and most important difference, which I mentioned in my first reply to you, that is, in the US, people enter hospice care if, and only if, they have 6 months or less to live. This is not false information and, if you reread what I wrote, I was not citing anything about what is involved in the care, merely the 6 month criterium. Here is the relevant wording from the same site you took your quotes:

    When is it time for hospice?

    Deciding when it's time for hospice is difficult and should be discussed with loved ones and a physician. It is generally time for hospice when:
    • The patient has 6 months or less to live, according to a physician.
    • The patient is rapidly declining despite medical treatment (weight loss, mental status decline, inability perform activities of daily living).
    • The patient is ready to live more comfortably and forego treatments aimed at prolonging life.

    Leave a comment:


  • Johnny5
    replied
    I did not feel it was badgering Bowler. I was replying to negative posts on the issue. MND and ALS Associations are mostly in agreement with hospice and palliative care to the best of my knowledge. Giving negative and false information to forum members about this webinar is negative. Meanwhile, the opportunity to review all of this information from the comfort of your home is beneficial to those of us dealing with this issue.

    Leave a comment:


  • DeeH
    replied
    matthew55

    wow that's just crazy.

    Not surprised, dad has been discharged from his dementia consultant back to the GP.

    Really pissed off as he was only seen yearly, what is the hardship.

    He is not cured and get carers twice a day. He has survived 14 years with it and still on his dementia medication.

    Thomas gets 3 hours hospice at home, so I can leave the house. Not had it for 2 weeks as he is always last to be allocated. as the are just sitting keeping him company in case he needs to toilet or move position. Or has one of his scary coughing fits.

    All the best Matthew

    Leave a comment:


  • matthew55
    replied
    I was bumped from my hospice as I wasn't dying fast enough. ๐Ÿ˜‰๐Ÿ˜‚๐Ÿ˜๐Ÿค—xxxxxx

    Leave a comment:


  • Bowler
    replied
    Johnny5 can I ask why you are pushing so hard on this topic. No one should be badgered into doing anything.

    Leave a comment:


  • Johnny5
    replied
    These folks would not do these free seminars online if it were not of use. Please consider this opportunity if you have not already attended to the issue. Eyes wide open and informed is the best approach to what MND does. Be prepared :-).

    Leave a comment:


  • Johnny5
    replied
    From Hospice UK:

    //Quote

    What we do


    We work for the benefit of people affected by death and dying, collaborating with our hospice members and other partners who work in end of life care.

    //end Quote
    //Quote


    โ€œHospice care aims to affirm life and death. It means working with and within local communities to tailor palliative care around the needs of each adult and child with a terminal or life-shortening condition, whatever that may be, and extends to supporting their carers, friends and family before and after bereavement.

    "Hospice care is provided by multi-disciplinary teams of staff and volunteers who offer expert support that places equal emphasis on someoneโ€™s clinical, physical, emotional, social and spiritual needs with the understanding that everyone will be different.โ€

    //end Quote

    Hospice foundation of America:

    //Quote

    Hospice is:
    • Medical care to help someone with a terminal illness live as well as possible for as long as possible, increasing quality of life.
    • An interdisciplinary team of professionals who address physical, psychosocial, and spiritual distress focused on both the dying person and their entire family.
    • Care that addresses symptom management, coordination of care, communication and decision making, clarification of goals of care, and quality of life.

    //end Quote



    So there is no difference.

    Thank you for the clarification.

    Leave a comment:


  • Ellie
    replied
    Originally posted by Johnny5 View Post
    Can you explain the difference you noted?
    As you are much more able bodied than I am and can physically type, I'll leave you to do any research which may satisfy your curiousity.

    Leave a comment:


  • Johnny5
    replied
    Trying to understand what you said about Hospice Care not being the same. Found Hospice UK, which seems to match what they do in the US. Can you explain the difference you noted? Thank you.

    Leave a comment:

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