Hospice and Palliative Care for People with ALS

[Bowler]

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.

[denise]

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.

[LindaB]

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!!!!!

[LindaB]

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 pond👍🏻😉

[Ellie]

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.

[matthew55]

I'm with you 100% girl 💖😁😘🤗xx

[Ellie]

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.

[Johnny5]

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.

[DeeH]

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

[matthew55]

I was bumped from my hospice as I wasn't dying fast enough. 😉😂😁🤗xxxxxx

[Bowler]

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

[Johnny5]

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 :-).

[Johnny5]

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


“Hospice 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 someone’s clinical, physical, emotional, social and spiritual needs with the understanding that everyone will be different.”

//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.

[Ellie]

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.

[Johnny5]

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.