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what would you need? If a foundation asked what services you needed with your illness (Original Post) demtenjeep Dec 2016 OP
I am thinking beside the fundraising obvious demtenjeep Dec 2016 #1
A data bank of specialists who know about my illness DeadLetterOffice Dec 2016 #2
Medicare has piloted Cancer treatment in rural hospitals dixiegrrrrl Dec 2016 #3
those are great ideas demtenjeep Dec 2016 #4
Nothing right now, but if I had to go into a hospital marybourg Dec 2016 #5
 

demtenjeep

(31,997 posts)
1. I am thinking beside the fundraising obvious
Wed Dec 7, 2016, 01:04 AM
Dec 2016

but the local things:

Information about your illness from fellow sufferers-daily/weekly classes

Place to go for resources

optional courses for treatments-where to go when the current stops working

Q and A

Sometimes just a shoulder when you feel like you are the only one?

DeadLetterOffice

(1,352 posts)
2. A data bank of specialists who know about my illness
Wed Dec 7, 2016, 01:45 AM
Dec 2016

Having a rare (1 in 5000) chronic illness bites, because doctors don't know anything about it. And my illness is multi-systemic, so I need orthopedics, cardiology, rheumatology, GI, ophthalmology, neurology, pain management, PT/OT...

Having a database of knowledgeable doctors would be... life changing.

dixiegrrrrl

(60,010 posts)
3. Medicare has piloted Cancer treatment in rural hospitals
Wed Dec 7, 2016, 02:02 AM
Dec 2016

and would you believe the program was started in my local/rural hospital 2 weeks before I was diagnosed with breast cancer.
almost everything related to cancer can be treated ..on an outpatient billing, yet....at our hospital now.
The oncologists come once a week to the clinic, are on call the rest of time, treatment is under the care of nurse practitioners who can call in scripts, provide chemo, take blood tests.

THAT is what I would wish for, in other areas, cause this is a pilot program only available in selected areas in the country.

We need more service centers in county seats, say, instead of only in cities, which are hours and hours away.
In my case, 200 miles round trip to go to the closest city. That is a grueling ride for someone who needs daily chemo or tests.

It would be wonderful if in home care were provided....not nursing ( we do have that) but weekly house keeping, shopping, etc.

marybourg

(12,622 posts)
5. Nothing right now, but if I had to go into a hospital
Wed Dec 7, 2016, 04:11 PM
Dec 2016

I'd need higher level of personalized dietitian and food prep services than seem to be available.

The same, but more difficult to achieve, if I ever needed to go to an assisted living, rehab or skilled nursing facility.

I need a person who could consult and advise on my ( and many others' ) special dietary needs whenever we need to access a health care facility.

Latest Discussions»Support Forums»Chronic Health Conditions Discussion and Support»what would you need? If ...