2. What Is Advocacy?
Advocacy is a set of actions to create awareness and have a positive influence on a policy or a cause.
It is done through education, reason and making a case for something.
Question: What are the aims of ISCAP?
This slide and the following slide will enable you to introduce the aims of ISCAP and discuss with the group why there was a need to develop the programme.
For example to :
Improve access to screening and diagnosis
Improve availability of stoma care products
Improve understanding and knowledge about stomas
Improve social acceptability of stomas 5 5

3. What Is Advocacy?
Advocacy operates on the assumption of a collective set of values and common good on behalf of others.
In social advocacy the people are the beneficiaries of the stated good to arise from such actions.
Question: What are the aims of ISCAP?
This slide and the following slide will enable you to introduce the aims of ISCAP and discuss with the group why there was a need to develop the programme.
For example to :
Improve access to screening and diagnosis
Improve availability of stoma care products
Improve understanding and knowledge about stomas
Improve social acceptability of stomas 5 5

4. ISCAP AIMS Encourage the development of advocacy initiatives
Assist ostomy associations/clubs achieve essential needs for people with a stoma.
Positively influence healthcare awareness regarding stomas and its practices, public opinion and attitudes.
Assist ostomy associations in empowering their members.
Question: What are the aims of ISCAP?
This slide and the following slide will enable you to introduce the aims of ISCAP and discuss with the group why there was a need to develop the programme.
For example to :
Improve access to screening and diagnosis
Improve availability of stoma care products
Improve understanding and knowledge about stomas
Improve social acceptability of stomas 5 5

5. The key ways in which ISCAP seeks to work
Provides a framework for ostomy clubs/associations to work in partnership with Healthcare Professionals and opinion formers.
Provides tools/resources
Shares ideas/experience across associations/clubs
Question: How does ISCAP work?
This slide will enable you to describe how ISCAP works, introducing briefly at this point the Tool Kit and the Case Studies as well as describing your role in supporting ISCAP activities in your region. 6

6. Participating in ISCAP
Experience shows that ISCAP:
Increases understanding of the needs of people with stomas
Encourages the adoption of appropriate healthcare policies.
Assists Ostomy Clubs in empowering their members
It may also helpful to give some of the positive feedback received from the
participating countries. 17

7. Forming and Strengthening New Associations/Clubs
Initiate New Stoma Groups
Strengthening existing stoma groups
Sustaining groups for the long term
Create Awareness of Ostomates needs amongst Healthcare Professionals and Society.
Made changes to slide 9

8. Key personnel to form and Strengthen Stoma Clubs/Associations
Surgeons
E T’s and other health professionals
Ostomy product/appliance providers
Ostomates

9. To form and Strengthen Stoma Clubs/Associations
Others who may help:
Cancer Societies
Hospitals
Health Authorities
Local organisations
Other Medical firms

10. The Most Important Group to Help are The Medical Professionals
Why?
Understand the ostomates needs to lead a normal Life
Can identify and assist ostomates
Can contact and encourage Ostomates to join the Stoma Clubs
Can provide opportunities through meetings

11. An Effective and Successful Stoma Club/Association
Identifies Partners
Strives to work with them
IOA has found that when all the groups work together, it has led to successful Stoma Clubs
Change slide 13. The title and the points do not agree. The chinese givernment will not agree to groups working together

12. THE ROLE OF THE STOMA GROUP
Before contact is made with potential members,
it is essential to
Identify a clearly defined goal.
Main goal is “To reach as many people with ostomies as possible and to aid in their rehabilitation”.
I question Continent procedures. Are these surgeries being conducted in China?

13. ACHIEVING THE GOAL
encourage ostomates to resume their everyday activities as soon as it is physically possible, thereby helping
them regain confidence and self esteem:

14. ACHIEVING THE GOAL
B. demonstrate to the medical profession that ostomates can resume their pre-surgery lifestyle to help avoid any misconceptions about their general well-being

15. ACHIEVING THE GOAL C. educate the general public as to the
employability, social acceptability and general well-being of the person with an ostomy

16. ACHIEVING THE GOAL
D. serve as a advocate within the society/club in matters of discrimination and provision of affordable, good quality ostomy appliances.

17. THE MEANS TO MEET THESE GOALS CAN INCLUDE
a. visiting program b. regular meetings c. newsletters/brochures/information leaflets

18. THE MEANS TO MEET THESE GOALS CAN INCLUDE
d. educational programs for
people with ostomies
family members and friends
medical professionals
the community

19. THE MEANS TO MEET THESE GOALS CAN INCLUDE
e. display of necessary medical equipment
and supplies
f. affiliation to a Stoma Club.

20. HOW TO START A LOCAL/REGIONAL GROUP
Make contact with as many ostomates as possible.
Surgeons, Healthcare Workers can help.
Local Doctors could be requested to mail a letter of introduction and Invitation to a meeting to each of their ostomy patients.
Do not ask for names in advance as it would be unethical to reveal them.

21. HOW TO START A LOCAL/REGIONAL GROUP
Product suppliers can be asked to include a
“flyer” with product orders. This letter of
introduction, or flyer, should set out the purpose
of the meeting. It is beneficial to include a reply
slip giving those unable to attend the meeting
an opportunity to be kept informed of future
developments.

22. HOW TO START A LOCAL/REGIONAL GROUP Resources to Contact
A. surgeons and other medical professionals. B. the cancer societies C. medical suppliers D. pharmacies E. social service departments in hospitals F. social service agencies G. discharge planners H. nursing associations I. newspapers and radio stations.

23. THE FIRST MEETING A. The place should be centrally located. Among
the possibilities of places in which to find a meeting room are:
hospitals or medical professional facilities
cancer society offices
health centers
businesses which have special meeting rooms

24. THE FIRST MEETING
B. The date - a weekday evening or Saturday/Sunday afternoon, should be selected far enough in advance to allow enough time to publicize it.

25. MEETING AGENDA
an explanation of the purpose of having an ostomy group ( stoma club)
an indication of interest in having such a group
an indication of the expectations of those present
formation of a leadership committee
scheduling the next meeting; this will be in response to the general preference of a meeting time and place
light refreshments provide an informal atmosphere after the meeting; this is an appropriate time for people to share personal experiences.

26. FINANCE Some ostomy groups need to charge a
fee to in order to cover costs and become a member of an ostomy association.
Appreciate that in some areas ostomates cannot afford dues to become a group member.
I don’t know that I would bring up having to pay membership dues at the first meeting. Maybe in major cities but not outside.

27. FINANCE Other sources of income and support to explore include:
Cancer societies
State authorities
Manufacturers
Commercial enterprises
Media companies
Humanitarian Aid Charities

28. Plan for 6-12 Months. Some things you may do
identify ostomates
construct a letter to send to ostomates or give to patients after or before surgery
plan -meetings
- seminar
- newsletter
-social gatherings
expand awareness among ostomates and medical and healthcare professionals that will identify the needs of the group

29. Plan for 6-12 Months. Some things you may do
A stoma survey (a copy is available as a guide)
Ostomates Issues meeting
train ostomates for a visitor programme
build numbers of ostomate (stoma) clubs
prepare press pack and stories for the media
participate in World Ostomy Day

30. Barry Maughan
ASPOA Conference Seoul