Barriers to Conducting a Public Forum

for urinary incontinence

I GruenwaldThe National Center for Continence

and the Neuro Urology Unit

Rambam Medical Center, Haifa, Israel.

The National Center for Continence

•Urologist

•Gynecologist

•Geriatrician

•Community nurse

•Geriatric nurse

•Social worker

•Coordinator

•Physiotherapist

•Psychologist

•Secretary

Main aims• Promotion of awareness for incontinence for Professionals

•Developing Educational and treatment tools

•Training of professionals in peripheral clinics

•Establishing satellite centers in other regions

• Training of staff in homes for the aged

ATTITUDE PROBLEM:-From the part of the physicians: Lack of truly understanding the overall QOL

issues that incontinence causes, therefore- an unimportant issue-No physician takes a comprehensive approach to all aspects of incontinence-No real interest in incontinence

Main aims• Promotion of awareness for incontinence for the public

•Lectures & training sessions in the community

•Establishing a helpline

•`Publishing brochures and booklets

Don’t be pissed

off!

Problems with public- forums

• Funding:The locationThe eventThe working hoursThe planning hoursThe travelThe food and beveragesThe Advertisement

Problems with public- forums

• Limited number of participants

• Limited short-term effect

• Very limited long-term effect

• Demands “maintenance” which means more effort and more funding

• Limited methods of evaluating the effect of the forum

Main aims• Promotion of awareness for incontinence

Establishing a patient- based charity

•Lectures & training sessions in the community

•Establishing a helpline

•`Publishing brochures and booklets

•Developing Educational and treatment tools

•Training of professionals in peripheral clinics

•Establishing satellite centers in other regions

• Training of staff in homes for the aged

An Incontinence patient- based Charity-Why & What for?

•Professional responsibility (adheres to the CPC mission statement)

•Increases awareness of the public to an existing, established medical problem

•Serves as a platform for communication between the patients and themselves

•Serves as a platform for communication between the patients and professionals

•Provides knowledge on incontinence for both patients and professionals

•Information on existing medications, products, and all professional disciplines (aides, nurses, doctors, physios etc)

Target your aims

• Strict promotional activity- Not for awareness, not for knowledge:

• Break the barriers, breaking the myths!!!• Emphasize Easiness of reaching cure• Seek- helping• Track to success- give them hope and show them the

way!!!

• Put much less energy in explaining, educating, training in a public forum- just answer questions.

So how do you do it ?

Just make it Happen!!!

Problem #1: basic required activities

•Meetings: Assemblies Directors’ meeting Meeting with Companies’ rep According to activities •Internet site: Updates, Forums, Products etc

•Printed material: Brochures , Newsletter, pamphlets etc

•Mailing lists Letters, announcements, invitations etc

•Additional activities- Research, yearly convention, donation events etc

Problem #2: basic administrative requirements

•Staff: SecretaryAccountantAttorneyChairman, Committee members

•Bureaucracy difficulties: Authorization by governmentPolitical issuesAuthorization by the charity committee legislator

Charities are considered means of money laundry

Administrative paperwork: Many forms to fill out again and

againDemands full cooperation of the

volunteersRunning a charity by unprofessional volunteers

Problem #3: Economical issues

Expenses on:

Marketing the charityMeetingsInternet sitePrinted material- brochures, newsletter, pamphlets etcOther material- Videos, DVD’s etcMailing lists , lettersAdditional activities- lectures, awareness campaigns etc.Staff: attorney, accountant, secretary, chairman

Limited sources of Income:Contributions, DonationsPharmaceutical companies with relevant productsOther companiesMembers- but only for a limited time- until cured

Problem #4: Ethical issues

•Drug companies- Some want sole rights

•In the eyes of the public, the charity may become identified with the supporting companies

•Professionals may tend to promote their preferred medications and products

Why should one join?

As a member:

•Knowledge about his/her medical problem

•Help to cope with incontinence (all aspects)

•Better purchase and acquisition terms for incontinence

products

•An address one can turn to

•Update on new medications and products, new services etc

Why doesn’t one join?

As a member:

•He/she may be exposed- embarrassment

•Some are embarrassed to be embarrassed (survival vs QOL

issues)

•Lack of awareness and knowledge regarding the importance of joining

•Many incontinence patients are from the lower socio economical status, geriatric population, retired etc

•For some, after cure ithere is no real reason to stay.

ATTITUDE From the part of the physicians:

No real interest and truly understanding of incontinence with no comprehensive approach

The basic difficulties for boosting and maintaining such a charity are:

COMMUNICATION:• Absence of professional communication skills• Absence of communication between the professionals and the

general public when it comes to urinary issues.

POLITICAL ISSUES:• Local political situation (status of war-survival issues overcome QOL

issues)

For having public forums on a regular basis- the optimal conditions would be:

Having professional backup (continence center)Having a patient- based charity co-opingNeed to overcome administrative, economical and ethical issues.

The main obstacles to face are:

ATTITUDE, COMMUNICATION, POLITICAL and CULTURAL/ EDUCATIONAL ISSUES

Summary

– We believe that a patient- based charity should be established only after a process of promoting the topic to the professional staff and bringing a change in attitude

– We believe that the best chance for successful public forums is through a patient- based charity

– Targeting promotional aims is essential

– Before starting the journey of establishing a charity, it is important that one knows what he is going to face up against

– For succeeding in such a venture- It is crucial that this committee will come up with some instructions or guidelines or some step by step manual on how to establish a patient- based charity and how to have public forums.

Conclusions