what would you need? If a foundation asked what services you needed with your illness

[demtenjeep]

that was local and you could visit,

That types of services would you want to see?

[demtenjeep]

1. I am thinking beside the fundraising obvious

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]

2. A data bank of specialists who know about my illness

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]

3. Medicare has piloted Cancer treatment in rural hospitals

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.

[demtenjeep]

4. those are great ideas

thank you

Keep them coming

[marybourg]

5. Nothing right now, but if I had to go into a hospital

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.