STAKEHOLDER ENGAGEMENT FEEDBACK SUMMARY
1. INTRODUCTION
In April 2009, the Champlain Hospice Palliative and End of Life Care Network was given the mandate from the LHIN to develop a regional plan for a more integrated and coordinated approach to the delivery of hospice palliative care (HPC) services. Following an in‐depth planning process involving numerous working groups with representation from across the Champlain region, the draft document entitled “Regional Hospice Palliative Care Program for the Champlain LHIN” was developed. The Plan, which is founded on the primary care service delivery model and the Canadian Hospice Palliative Care Association’s ‘Model to Guide Hospice Palliative Care’, describes the establishment of a Regional HPC Program as a forum to oversee and implement a number of foundational and supporting recommendations designed to improve HPC in Champlain.
In order to provide an opportunity for organizations and individuals interested in HPC to share their views of the draft Plan, a stakeholder engagement process was conducted. Information received through this process will serve to enhance the current plan and ensure the development of a system that meets the needs of the residents of Champlain.
2. STAKEHOLDER ENGAGEMENT PROCESS
During the month of April 2010, 20 facilitated meetings were held involving approximately 350 service providers and 55 individuals with HPC needs, their families and program volunteers to solicit feedback on the draft Regional HPC Program Plan. In an attempt to reach a broader audience, community members were invited to provide feedback via a SurveyMonkey questionnaire.
The document and link to SurveyMonkey were widely distributed by email with a request to circulate the information to anyone they feel would be interested in commenting on the plan. A total of 37 (34 English and 5 French) completed surveys were received through this means. A translated version of the document and questionnaire were also made available.
A list of facilitated sessions held and organizations/groups that received targeted invitations to respond using SurveyMoney is attached.19
The information received through the stakeholder engagement process is highlighted in this section of the report. An initial response as to how each issue will be addressed is also presented. This summary does not provide an exhaustive list of points raised during the discussions and interviews, but presents common issues and recurring themes that surfaced during the conversations and through written feedback.
19 Using a likert scale, SurveyMonkey respondents were asked to rate their level of support for the key
elements, recommendations and the overall Regional HPC Program Plan.. These resulta are found in Attachment 2.
Please note that specific comments related to wording suggestions and clarification on terminology were captured and addressed, but have not been presented within a specific ‘theme’ in this report.
3. FEEDBACK FROM CLIENTS, CAREGIVERS AND VOLUNTEERS
With the assistance of Friends of Hospice and Hospice at May Court, 4 facilitated sessions were held with clients and volunteers within the day programs at these two organizations. A total of 54 clients20 and 28 day program volunteers participated in these discussions. Input from a few caregivers who participated in other engagement sessions also contributed to this feedback.
Much of the conversation with clients focused on their personal experiences with the system and less on the proposed direction of the draft Regional HPC Program Plan. Volunteers also spoke to personal experiences as well as their observations working with individuals participating in the program. The themes of these conversations, summarized below, speak strongly to the need for enhanced integration and coordination of HPC services and more dedicated focus on the needs of caregivers. Actual quotes from participants have been used to further demonstrate these findings .
General Comments
“I am pleased to see something being done to change the current system and I am glad to be
consulted”
“ This plan makes a lot of sense and is long overdue – Unfortunately we won’t see the changes
in our lifetime”
“‘I am angry this has taken so long”
Comments received related to the Regional HPC Program Plan supported the direction, but wished it had come sooner so they could have benefited from a more coordinated and integrated service system. Participants recommended that we explore models of integration that are working well, including the Falls Prevention Program and models of transition with the children’s services sector.
a. Access to Information and Services
“Need to be able to access services outside of 9‐4”
“The 1st step is info to get control of your life back. Without information, there is no ‘patient‐
centred care’. “
“Looking back, I could have used a lot more help with Child care, cooking help, housework help,
etc. but no funding for that. My husband could not help as he works full time. We were not
eligible for assistance.”
What We Heard
Participants highlighted the need for additional support to ensure future clients of HPC services have access to information on the services that are available to them. The concept of a 24‐hour information line, or ‘one‐stop‐shopping’ for information rather than depending on a service provider to ‘have all the answers’ was identified as a service that would have helped them on their journey. b. Service Integration and Coordination
“There is a lack of communication from one staff person to anther and no follow‐up so things
don’t get resolved. Patients don’t know who to talk to make it work better.”
“There needs to be someone in the centre responsible for coordinating services. Too many
people providing home care in silos ‐ Need someone to mediate.”
“There is a lack of understanding of community services by health professionals – scattered
knowledge. Information sharing depends on how efficient & interested health professionals are.”
What We Heard
Clients clearly experience challenges with respect to communication among services and when transitioning within the system. There must be options for the system to assume responsibility for “care” coordination when required and to support clients and families in their efforts to navigate the system.
c. Assistance with System Navigation/Advocacy
“When I was asked by a nurse if l wanted to see a Social Worker, I didn’t know why l would want
to see one. I didn’t have information about what they did.”
“Are family members being told what they have a right to? Are they being encouraged to ask?”