Re: Starting a Support Group - Teri

[Guest guest]

Don,Thank you so much for that... I have been wanting to pay it forward for so long. I even told the doctor and nurse when I was going thru treatment that I wanted to do that... the nurse said she'd help and speak and get the doc to speak as well.. I am going to do this. It's like I'm doing it anyway just over the internet... I'm talking to a girl now on Facebook who is in the UK and just had her treatment stopped after 24 weeks because her viral load went up. I'm trying to get her to join us. She is devastated. I am devastated for her. I have her looking for our group now. I take all this to heart... This is something I need to do.

TeriFrom: Christ <ludichrist2000@...>WebWarriors grp < >Sent: Sun, April 25, 2010 3:18:51 AMSubject: [ ] Starting a Support Group - Teri

Hi Teri - and everybody

Maybe I could help to answer this question - 'how to start a support group'? -

I am trying to build a support group in my area, and here are some of the things one needs to concider.

[1] Location to hold gatherings -

Ideas - your home, a hall, a church, hospital/doc conference room

[2] Advertising your group -

Doctors are NOT allowed to give out names of HCV patients, however a doctor can give the patient info about a HCV group.

Other ideas - posters, fliers, newspaper ads, radio public service ads, bus cards, etc.

[3] Matterials and Resources -

Its good to have Lit to give out, and have info resources.

[4] Professional speakers -

A Med Professional speaker is nice to have to provide topic info, and answer questions.

[5] Group phone contact number -

This is a must, so that folks who want to come can make contact.

[6] Refreshments ??? -

Be sure to provide plenty of BEER.

JUST KIDDING !!!!!!!!! Do not do this. <----------

[7] Times and dates -

Decide when, what times, and how often to meet.

[8] Transportation -

A critical issue for many people. - No car, handicapped, health, distance, fuel money, etc.

Most of the basics are easy enough to do.

The hard stuff is providing a regular location/time, Med speakers, advertising, and Lit resources.

Starting is not all that difficult.

Keeping it going is the problem.

EXAMPLE:

There used to be a support group set up here by the Hospital and Medical staff.

At first it went well.

After a year fewer and fewer folks showed up, until finally they closed down.

Lack of interest - for whatever reason.

This is one reason keeping a support group going is so difficult.

I hope this info helps.

love

don in ks

Gloria,

I know of more than a handful of people who are dealing with Hep C just in the small town I live in... maybe like 12. I would love to start a real live in person support group, I actually talked to my Gastro about it when I was on treatment... any ideas on how to go about starting one? I have to make an appointment to see the Gastro anyway and I could talk to him, I know his old nurse said she'd help as well.... But how do you even start something like that?

Teri

[Guest guest]

I still believe that if a group is started with an AA/NA concept that it might work!!!

Hi Teri - and everybody

Maybe I could help to answer this question - 'how to start a support group'? -

I am trying to build a support group in my area, and here are some of the things one needs to concider.

[1] Location to hold gatherings - I'd have no problem with this

Ideas - your home, a hall, a church, hospital/doc conference room

[2] Advertising your group - Believe that it should be word of mouth or small posters in Dr's offices etc.

Doctors are NOT allowed to give out names of HCV patients, however a doctor can give the patient info about a HCV group.

Other ideas - posters, fliers, newspaper ads, radio public service ads, bus cards, etc.

[3] Matterials and Resources - There are lots of materials online that can be downloaded OR sent for and cost nothing

Its good to have Lit to give out, and have info resources.

[4] Professional speakers - Absolutely, but only on occasion. Let it be more about sharing our own experience, strength and hope

A Med Professional speaker is nice to have to provide topic info, and answer questions.

[5] Group phone contact number - Usually done by someone who isn't hiding in shame about their illness

This is a must, so that folks who want to come can make contact.

[6] Refreshments ??? - It only takes a coffee pot to get a meeting going in AA

Be sure to provide plenty of BEER.

JUST KIDDING !!!!!!!!! Do not do this. <----------

[7] Times and dates - Would depend on the availability of a meeting room.

Decide when, what times, and how often to meet.

[8] Transportation - I'm sure the people that will come would be willing to pick up anyone along their way. That's how it's always been done in AA

A critical issue for many people. - No car, handicapped, health, distance, fuel money, etc.

Most of the basics are easy enough to do.

The hard stuff is providing a regular location/time, Med speakers, advertising, and Lit resources.

Starting is not all that difficult.

Keeping it going is the problem.

EXAMPLE:

There used to be a support group set up here by the Hospital and Medical staff.

At first it went well.

After a year fewer and fewer folks showed up, until finally they closed down.

Lack of interest - for whatever reason.

This is one reason keeping a support group going is so difficult.

I hope this info helps.

love

don in ks

Gloria,

I know of more than a handful of people who are dealing with Hep C just in the small town I live in... maybe like 12. I would love to start a real live in person support group, I actually talked to my Gastro about it when I was on treatment... any ideas on how to go about starting one? I have to make an appointment to see the Gastro anyway and I could talk to him, I know his old nurse said she'd help as well.... But how do you even start something like that?

Teri

[Guest guest]

Gloria, I know you didn't mean this to be funny but I just cracked up because I started thinking about what the 12 steps would be for liver disease.... Sorry... my mind is kinda nutsy today! Somebody help me! Stop the world I need to get off!Teri From: Gloria <gadamscan@...> Sent: Sun, April 25, 2010 3:04:24 PMSubject: Re: [ ] Starting a Support Group - Teri

I still believe that if a group is started with an AA/NA concept that it might work!!!

Hi Teri - and everybody

Maybe I could help to answer this question - 'how to start a support group'? -

I am trying to build a support group in my area, and here are some of the things one needs to concider.

[1] Location to hold gatherings - I'd have no problem with this

Ideas - your home, a hall, a church, hospital/doc conference room

[2] Advertising your group - Believe that it should be word of mouth or small posters in Dr's offices etc.

Doctors are NOT allowed to give out names of HCV patients, however a doctor can give the patient info about a HCV group.

Other ideas - posters, fliers, newspaper ads, radio public service ads, bus cards, etc.

[3] Matterials and Resources - There are lots of materials online that can be downloaded OR sent for and cost nothing

Its good to have Lit to give out, and have info resources.

[4] Professional speakers - Absolutely, but only on occasion. Let it be more about sharing our own experience, strength and hope

A Med Professional speaker is nice to have to provide topic info, and answer questions.

[5] Group phone contact number - Usually done by someone who isn't hiding in shame about their illness

This is a must, so that folks who want to come can make contact.

[6] Refreshments ??? - It only takes a coffee pot to get a meeting going in AA

Be sure to provide plenty of BEER.

JUST KIDDING !!!!!!!!! Do not do this. <----------

[7] Times and dates - Would depend on the availability of a meeting room.

Decide when, what times, and how often to meet.

[8] Transportation - I'm sure the people that will come would be willing to pick up anyone along their way. That's how it's always been done in AA

A critical issue for many people. - No car, handicapped, health, distance, fuel money, etc.

Most of the basics are easy enough to do.

The hard stuff is providing a regular location/time, Med speakers, advertising, and Lit resources.

Starting is not all that difficult.

Keeping it going is the problem.

EXAMPLE:

There used to be a support group set up here by the Hospital and Medical staff.

At first it went well.

After a year fewer and fewer folks showed up, until finally they closed down.

Lack of interest - for whatever reason.

This is one reason keeping a support group going is so difficult.

I hope this info helps.

love

don in ks

Gloria,

I know of more than a handful of people who are dealing with Hep C just in the small town I live in... maybe like 12. I would love to start a real live in person support group, I actually talked to my Gastro about it when I was on treatment... any ideas on how to go about starting one? I have to make an appointment to see the Gastro anyway and I could talk to him, I know his old nurse said she'd help as well.... But how do you even start something like that?

Teri

[Guest guest]

No apology needed, Teri !!! I think a lot about whether the 12 steps actually fit into this kind of support.Gloria

Gloria, I know you didn't mean this to be funny but I just cracked up because I started thinking about what the 12 steps would be for liver disease.... Sorry... my mind is kinda nutsy today! Somebody help me! Stop the world I need to get off!Teri From: Gloria <gadamscan (DOT) ca> Sent: Sun, April 25, 2010 3:04:24 PMSubject: Re: [ ] Starting a Support Group - Teri

I still believe that if a group is started with an AA/NA concept that it might work!!!

Hi Teri - and everybody

Maybe I could help to answer this question - 'how to start a support group'? -

I am trying to build a support group in my area, and here are some of the things one needs to concider.

[1] Location to hold gatherings - I'd have no problem with this

Ideas - your home, a hall, a church, hospital/doc conference room

[2] Advertising your group - Believe that it should be word of mouth or small posters in Dr's offices etc.

Doctors are NOT allowed to give out names of HCV patients, however a doctor can give the patient info about a HCV group.

Other ideas - posters, fliers, newspaper ads, radio public service ads, bus cards, etc.

[3] Matterials and Resources - There are lots of materials online that can be downloaded OR sent for and cost nothing

Its good to have Lit to give out, and have info resources.

[4] Professional speakers - Absolutely, but only on occasion. Let it be more about sharing our own experience, strength and hope

A Med Professional speaker is nice to have to provide topic info, and answer questions.

[5] Group phone contact number - Usually done by someone who isn't hiding in shame about their illness

This is a must, so that folks who want to come can make contact.

[6] Refreshments ??? - It only takes a coffee pot to get a meeting going in AA

Be sure to provide plenty of BEER.

JUST KIDDING !!!!!!!!! Do not do this. <----------

[7] Times and dates - Would depend on the availability of a meeting room.

Decide when, what times, and how often to meet.

[8] Transportation - I'm sure the people that will come would be willing to pick up anyone along their way. That's how it's always been done in AA

A critical issue for many people. - No car, handicapped, health, distance, fuel money, etc.

Most of the basics are easy enough to do.

The hard stuff is providing a regular location/time, Med speakers, advertising, and Lit resources.

Starting is not all that difficult.

Keeping it going is the problem.

EXAMPLE:

There used to be a support group set up here by the Hospital and Medical staff.

At first it went well.

After a year fewer and fewer folks showed up, until finally they closed down.

Lack of interest - for whatever reason.

This is one reason keeping a support group going is so difficult.

I hope this info helps.

love

don in ks

Gloria,

I know of more than a handful of people who are dealing with Hep C just in the small town I live in... maybe like 12. I would love to start a real live in person support group, I actually talked to my Gastro about it when I was on treatment... any ideas on how to go about starting one? I have to make an appointment to see the Gastro anyway and I could talk to him, I know his old nurse said she'd help as well.... But how do you even start something like that?

Teri

[Guest guest]

It just took me in a totally different direction and it was funny. Isn't one of the steps making amends? We could apologize to our livers for the damage we have inflicted on it... oh somebody stop me.Teri From: Gloria <gadamscan@...> Sent: Sun, April 25, 2010 9:46:39 PMSubject: Re: [ ] Starting a Support Group - Teri

No apology needed, Teri !!! I think a lot about whether the 12 steps actually fit into this kind of support.Gloria

Gloria, I know you didn't mean this to be funny but I just cracked up because I started thinking about what the 12 steps would be for liver disease.... Sorry... my mind is kinda nutsy today! Somebody help me! Stop the world I need to get off!Teri From: Gloria <gadamscan (DOT) ca> Sent: Sun, April 25, 2010 3:04:24 PMSubject: Re: [ ] Starting a Support Group - Teri

I still believe that if a group is started with an AA/NA concept that it might work!!!

Hi Teri - and everybody

Maybe I could help to answer this question - 'how to start a support group'? -

I am trying to build a support group in my area, and here are some of the things one needs to concider.

[1] Location to hold gatherings - I'd have no problem with this

Ideas - your home, a hall, a church, hospital/doc conference room

[2] Advertising your group - Believe that it should be word of mouth or small posters in Dr's offices etc.

Doctors are NOT allowed to give out names of HCV patients, however a doctor can give the patient info about a HCV group.

Other ideas - posters, fliers, newspaper ads, radio public service ads, bus cards, etc.

[3] Matterials and Resources - There are lots of materials online that can be downloaded OR sent for and cost nothing

Its good to have Lit to give out, and have info resources.

[4] Professional speakers - Absolutely, but only on occasion. Let it be more about sharing our own experience, strength and hope

A Med Professional speaker is nice to have to provide topic info, and answer questions.

[5] Group phone contact number - Usually done by someone who isn't hiding in shame about their illness

This is a must, so that folks who want to come can make contact.

[6] Refreshments ??? - It only takes a coffee pot to get a meeting going in AA

Be sure to provide plenty of BEER.

JUST KIDDING !!!!!!!!! Do not do this. <----------

[7] Times and dates - Would depend on the availability of a meeting room.

Decide when, what times, and how often to meet.

[8] Transportation - I'm sure the people that will come would be willing to pick up anyone along their way. That's how it's always been done in AA

A critical issue for many people. - No car, handicapped, health, distance, fuel money, etc.

Most of the basics are easy enough to do.

The hard stuff is providing a regular location/time, Med speakers, advertising, and Lit resources.

Starting is not all that difficult.

Keeping it going is the problem.

EXAMPLE:

There used to be a support group set up here by the Hospital and Medical staff.

At first it went well.

After a year fewer and fewer folks showed up, until finally they closed down.

Lack of interest - for whatever reason.

This is one reason keeping a support group going is so difficult.

I hope this info helps.

love

don in ks

Gloria,

I know of more than a handful of people who are dealing with Hep C just in the small town I live in... maybe like 12. I would love to start a real live in person support group, I actually talked to my Gastro about it when I was on treatment... any ideas on how to go about starting one? I have to make an appointment to see the Gastro anyway and I could talk to him, I know his old nurse said she'd help as well.... But how do you even start something like that?

Teri

[Guest guest]

Hi Teri and everyone,

Here's a link to a 32 page support group manual put out by the Hepatitis C

Support Project:

http://www.hcvadvocate.org/hepatitis/factsheets_pdf/SG_Manual_09.pdf

In Boise the Hep C support group meets once a month on the 2nd Monday at 7pm, in

a house owned by the hospital. I saw a flyer for it at the hepatologist's

office, and there are also online listings. I've only gone to it once but it

was a great experience and I learned a lot -

Kathleen

>

>

> Gloria,

> I know of more than a handful of people who are dealing with Hep C just in

the small town I live in... maybe like 12. I would love to start a real live

in person support group, I actually talked to my Gastro about it when I was on

treatment... any ideas on how to go about starting one? I have to make an

appointment to see the Gastro anyway and I could talk to him, I know his old

nurse said she'd help as well.... But how do you even start something like

that?

>

> Teri

>