Barriers to Conducting a Public Forum for urinary incontinence I Gruenwald The 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 location The event The working hours The planning hours The travel The food and beverages The 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: Secretary Accountant Attorney Chairman, Committee members Bureaucracy difficulties: Authorization by government Political issues Authorization by the charity committee legislator Charities are considered means of money laundry Administrative paperwork: Many forms to fill out again and again Demands full cooperation of the volunteers Running a charity by unprofessional volunteers

Problem #3: Economical issues Expenses on: Marketing the charity Meetings Internet site Printed material- brochures, newsletter, pamphlets etc Other material- Videos, DVD’s etc Mailing lists, letters Additional activities- lectures, awareness campaigns etc. Staff: attorney, accountant, secretary, chairman Limited sources of Income: Contributions, Donations Pharmaceutical companies with relevant products Other companies Members- 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-oping Need 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