HUNTINGTON SOCIETY OF CANADA Survey of Stakeholders

HUNTINGTON SOCIETY OF CANADA
Survey of Stakeholders (Agencies, professionals, providers)

We need your input. The Huntington Society of Canada has initiated a review of its services in order to ensure that we can continue to meet the needs of our clients in an efficient, effective and sustainable fashion. Your views as a key system stakeholder familiar with the needs of individuals with Huntington disease (HD) are important to the study, and will help us shape the nature and direction of our future services.

Please complete this questionnaire no later than 5:00 p.m. Friday, August 19, 2005. Questionnaires are sent directly to the external consultant, so you can be frank and honest in your replies.

If you are unsure, or don't know the answer to a particular question, simply leave that item blank.

The first series of questions deals with your perceptions of the overall system of services and supports for individuals and families affected by HD in your community.

An alphabetical listing of services and supports for individuals and families affected by HD appears below. Please review the list and indicate the five services that you feel are currently experiencing the greatest system pressure in terms of gaps between demand and supply in your community.

Check only five

Assessment and diagnostic services
Care and management of HD for mood, memory and movement
Counselling
Crisis intervention
Domestic support (meals, cleaning, etc.)
Employment supports
Financial support
Housing
Information and referral
Palliative care
Psychological services
Respite care
Social and recreational programs
Support groups
Technical and technological aids
Therapies (physical, occupation, speech and language pathology)
Visiting nursing care
Housing

Are there any necessary services or supports that presently do not exist in your community?

Yes --> please elaborate below...

Do you feel there is any unnecessary duplication of HD services in your community?

Yes --> please elaborate below...

Continue to think about the broad system of services and supports for individuals and families affected by HD in your community and rate its overall effectiveness in accomplishing the following:

	Excellent	Good	Fair	Poor
Responding to unique individual needs
Providing services that are available to all groups
Using resources efficiently
Ensuring individuals receive the right services
Ensuring individuals receive services in a timely fashion
Fostering collaborative working relationships among agencies and health care providers
Identifying and responding to community needs
Having a positive impact on clients

A number of potential obstacles or barriers to individuals and families accessing HD services are listed below. Indicate the extent to which each of these are a problem in your community:

	Not a problem at all	Not too much of a problem	Somewhat of a problem	A large problem
The hours that supports or services are available
The geographic location of where the services are provided
Transportation
The financial cost or out-of-pocket expenses to individuals and families
Language or cultural differences

Are there any other obstacles or barriers that interfere with individuals and families affected by HD receiving the services or supports that they need?

A number of external factors that might have an impact on services for individuals and families with HD are listed below. Rank each item in terms of its significance to your community. Assign a "1" to the most significant factor, a "2" to the next factor, and so on down to "6".

Insert ranks from 1 to 6.

Shifting population demographics
Increased complexity of individual needs
Constraints on health care funding
Changing government policies and practices
Changing diagnostic and treatment methods
Recruitment and retention of qualified staff and volunteers

Are there any other significant trends, events or emerging issues that should be considered in planning for HD services?

This next series of questions deals with specific services offered by the Huntington Society of Canada (HSC) through its HD Resource Centres and support workers.

A list of services offered by HSC appears below. Please indicate the overall level of effectiveness of each service in meeting the needs of individuals and families affected by HD:

Remember, if you are unsure, or don't know the answer to a particular question, simply leave that item blank.

	Excellent	Good	Fair	Poor
Providing information to individuals with HD and their families
Referring clients to community resources
Advocating on behalf of individuals and families
Providing educational and consulting support to professionals
Participating in HD medical clinics
Providing counselling to individuals with HD and their families
Fostering client linkages and running mutual support discussion groups
Offering day activity programs
Offering annual camp programs for individuals with HD

10.

If you gave a rating of "fair" or "poor" to any of the items in Question 9, please explain below:

11.

Now review the list of HSC services again and consider which services should receive priority for future enhancement.

Indicate your suggested priorities by assigning a total of 100 points to the appropriate categories in the "Overall" column. Your highest priorities should get the most points.

Allocate points any way you want, but the column must add up to 100.

Providing information to individuals with HD and their families
Referring clients to community resources
Advocating on behalf of individuals and families
Providing educational and consulting support to professionals
Participating in HD medical clinics
Providing counselling to individuals with HD and their families
Running mutual support discussion groups
Offering day activity programs
Offering annual summer camp programs
*TOTAL POINTS should be:*	100

12.

Are there any other services that should be offered by the Huntington Society of Canada?

Yes --> please specify below...

13.

Please feel free to make any other comments or suggestions to assist us in carrying out this service review:

14.

Please provide the following background information about you and your organization.

Type of Organization:

Acute care
Association
Long-term care
Educational institution
Community agency
Independent practitioner
Other (please specify)

Province:

Type of Community:

Predominantly urban setting
Rural setting
Urban/rural mix

Completed by: (Optional)

Name:
Title:
Organization:

Thank you for your cooperation.