Header May 13 Community Resource

Background About This Resource
Public awareness initiatives in end of life care are being promoted nationally and internationally. In the United Kingdom (UK) this approach is integral to national end of life care strategies. National programmes of work are complemented by local initiatives, engaging with different sectors of the population.

Over the past 5 years a number of programmes have been involved in work to expand the impact of community engagement around public awareness of end of life issues across the Northwest. Independently we have moved this awareness forward. Collectively, we have now reviewed our experiences and have collated our learning to develop this resource which we hope may be of interest to individuals and organisations seeking to undertake public awareness work in this area.

A stakeholder event was held in November 2012 which brought together key individuals who have already been involved in community engagement in their locality across the north west of England in order to share our experiences of this work, develop material for this resource and explore the development of collaborative work for the future. Funding for this Knowledge Exchange Project came from Lancaster University’s Faculty of Health and Medicine in a collaboration with The Conversations for Life Programme social enterprise to further develop and support the evidence base for effective approaches to community engagement around end of life conversations and care.

To view the short film clips below, click on the selected video. Your browser will open a new window. Simply close this window to return to the resource.

This resource was developed following the one-day event and is a snapshot in time.  We would encourage you to go to the project leads and/or their organisations directly as listed in the project overviews for further information. (Given significant role transitions during the course of this project, all titles were valid as of November 2012 and contact details have been updated as of May 2013). For any comments on the resource overall, please contact Katherine Froggatt or Mary Matthiesen directly.


Content
  1. 1. Why this resource? Project Background
    A brief video from Katherine Froggatt and Mary Matthiesen about how this started.
  2. 2. Participant Introductions
    Personal introductions of each of the 11 participating commissioners and practitioners from the day.
  3. 3. Project overviews
    Information about the participant projects across the Northwest including personal perspectives (video), PDF reports, presentations, weblinks and contact details
  4. 4. Catalysts
    What led to these projects starting from commissioner and practitioner perspectives.
  5. 5. What’s working
    Identified assets and strengths that aided and continue to support these projects.
  6. 6. Challenges faced & Lessons learned
    Although we represented different areas and services, the challenges we all faced were similar and lessons learned were collated from the day.
  7. 7. What’s possible now? Looking ahead to the future
    What we wish we’d known when we started, and the future needs and opportunities we identified that could benefit this work in the future.

 

1. Why this resource? A brief video from Katherine Froggatt and Mary Matthiesen about how this started.

Project Background small Community Resource

2. Participant Introductions  Personal introductions of each of the 11 participating commissioners and practitioners from the day.

Personal Introductions small Community Resource

3. Project Overviews To get a sense of the projects we’ve been involved in across the Northwest, read on, watch and listen! (Videos are less than 5 minutes each and will open in a new window)
Please contact participants directly for further information. (NB: Individual titles as of Nov. 2012; contact details have been updated as of May 2013)

Kim Wrigley
Lead, End of Life Care, Greater Manchester Cheshire Cancer Network
Kim Wrigley small Community Resource
Multi-Staff Training & Community Outreach
Across Greater Manchester & CheshireReports & Resources
GMCCN Roundup
Dying Matters Evaluation
GMCCN Results Summary PDF
Website
Email Kim Kim.wrigley@nhs.net

Elaine Horgan,
Care Home Coordinator, End of Life Care, Greater Manchester Cheshire Cancer NetworkElaine Horgan small Community Resource
Multi-Staff Training & Community Outreach
Across Greater Manchester & CheshireReports & Resources
GMCCN Roundup
Dying Matters Evaluation
GMCCN Results Summary PDFWebsite
Email Elaine Elaine.Horgan@manchester.nhs.uk
Mary Matthiesen
Director and Lead Facilitator,
Conversations for Life &
Stories to Change, CIC
Mary Matthieson small Community Resource
Engaging Communities Using An Asset-Based ApproachNHS Cumbria/Conversations for Life Community-Wide Public Health Pilot (2009-2010)Simple Tools to Start the Conversation
multi-staff development days
Reports & Resources
CFL Community Engagement Background
Merseyside & Cheshire Community Engagement Initiative Interim Report Jan 2012
MCCN Convener Poster Final 
IAPC Public Health Approach Poster Final
GMCCN Results Summary PDF
Breaking the Silence DVD (excerpt)
Website
Facebook 
Email Mary
01539 822 343
Elaine Owen
End of Life Care Service Improvement Lead for Acute and Specialist Services, Merseyside and Cheshire Cancer Network.
Elaine Owen small Community Resource
Merseyside and Cheshire Cancer Network: Community Engagement Initiatives using an Asset-Based approach: 6 communities engaging >150 community organisationsReports & ResourcesMerseyside and Cheshire Community Engagement Initiative Interim Report January 2012
Report Jan 2012
Website
Email Elaine
0151 2014 150 ext 6202
Rachel McKindley
The Bucket Project, Marie Curie Hospice, Liverpool
Rachel McKindley small Community Resource
The Bucket Project-Community Engagement with staff lead
Marie Curie Hospice Liverpool
(Part of the Merseyside and Cheshire Cancer Network Project)
Reports & Resources
TBP June Newsletter #1.pdf
TBP Report 2012.pdf
FacebookTwitterCommunity Survey
Merseyside & Cheshire Community Engagement Initiative Interim Report Jan 2012
Email Rachel
0151 8011 488
Karen Livesey
Voluntary and Community Action Wirral
Karen Livesay small Community Resource
Volunteer Community Action Wirral-Community Engagement Project w/3rd sector lead
(Part of the Merseyside and Cheshire Cancer Network Project)Reports & Resources
Online magazine
Merseyside & Cheshire Community Engagement Initiative Interim Report Jan 2012
Website
Email Karen
0151 3539 693
Rachel Zammit
Lead, Macmillan End of Life Public Health Team and Cheshire Living Well, Dying Well Partnership
St. Luke’s Cheshire Hospice
Rachel Zammit small Community Resource
Macmillan /Public Health/EOLC Cheshire Living and Dying Well Partnership:
multi-year regional project with staff lead
Reports & Resources
Cheshire Living Well Dying Well Public Health Programme Update (January 2013)
Cheshire LWDW Partnership Structure
Cheshire LWDW PH Programme – Strategic Focuses July 2012i
Cheshire LWDH PH Programme Overview
CLWDW PH Programme Structure Overview Diagram v10.pdf
Cheshire LWDW Public Health Programme – Briefing Paper
Website
Email Rachel
0160 6551 246 ext 22
Jill Cox
Volunteer Lead, Patient and Carer Support at home
Jill 2013 small Community Resource
(There is no video associated with this image)
PACS: Patient and Carer Support at Home Time banking Project-Cheshire
(Part of the Merseyside and Cheshire Cancer Network Project)Reports & Resources
PACSPromotionLeaflet2.doc
PACS Project Briefing for 29th November MeetingEmail Jill
0182 9751 398
Katherine Froggatt
Senior Lecturer, International Observatory on End of Life Care, Lancaster University
Katherine Froggatt small Community Resource
International Observatory on End of Life Care
Peer Education Project 
Reports & Resources
Froggatt Poster Montreal 2012Website
Email Katherine
01524 503 308
Tony Bonsor
Regional/National
Volunteer Representative
National Council for Palliative Care
Dying Matters Coalition
Tony Bonsor small Community Resource
National Council for Palliative Care
Patients & Parliament Group
and Northwest Regional Dying Matters 
Reports & Resources (websites)
National Council for Palliative Care

Dying Matters WebsiteThe contact for Tony is:
Joanna Black
Involvement Manager,
National Council for Palliative Care
Email: j.black@ncpc.org.uk
Jonathan Ingram Communications and Campaigns, Age UK South Lakeland
Jonathan Ingram small Community Resource
Age UK South Lakeland
Macmillan Community Solutions Project (2009-2010);
Community Engagement Resource; Newsletters/Outreach
Reports & Resources
Finding Community Solutions 
Age UK South Lakeland magazine November-2012.pdf 
Cancer support_pro.pdfWebsite
Email Jonathan
01539 728 118
John R. Ashton
Director Public Health, NHS Cumbria
President Elect, Faculty of Public Health (UK)
John Ashton small Community Resource
Public Health Perspectives on Engaging Communities Around End of Life Conversations & Care (see video)NHS Cumbria/Conversations for Life pilotReports & Resources
Governance, Health and the New Citizenship
Living Well in Cumbria
IAPC Poster Public Health ApproachContact details as of July 2013
President, Faculty of Public Health
Royal College of Physicians UK
4 St Andrews Place
Regents Park, London NW1 4LB

4. Catalysts Motivation and drivers to engage communities around end of life conversations and care come from many places. Click the screenshot below to see some of ours.

Catalysts small Community Resource

5. What’s Working? Existing assets/strengths were identified within the Public Health approach/perspectives used to initiate the above projects.

The following skills were identified as being essential to launching projects and initiatives.

Skills in

  • Leadership
  • Public health lens
  • Facilitation
  • Storytelling
  • Emotional intelligence
  • Influencing
  • Networking
  • Connecting
  • Sowing seeds (“gappers”)
  • Acting as facilitators- personally and professionally (not just during work hours)
  • Making connections between Asset Based Community Development /community engagement/Public Health and End of Life Care

Resources
The following resources were identified as useful to support our projects:

Integration
of messages, information and projects into general processes and events (eg newsletter)

Stories

  • Own experiences
  • Professional stories
  • Work stories
  • Other’s stories

DVDs

  • Breaking the Silence
  • Dying Matters

Conversation Starters

Training Packs

Partnerships & People

Relationships between people and organizations were identified keys to success including:

  • Individuals, Associations and Institutions
  • Use of current networks
  • Committed groups of people to begin
  • Relationships-ongoing

On-going

  • Keep chipping away individually & collectively. Change takes time.
  • Be aware of connection between the professional-personal interface of this work with regard to emotional intelligence.
  • Do not underestimate resources and enthusiasm that service users bring.
  • Continue to bring awareness re: the emotional dimensions of this work & how to support those working in it.

6. Challenges Faced and Lessons Learned

Although we represented different areas and services, the challenges we all faced were similar. Click the screenshot below to hear some of ours.
Challenges small Community Resource

So what have we learned? You may find the following pointers useful.

Roles
Recognise different roles are required

  • strategic facilitation
  • front line delivery/implementation skills

Use a dedicated person/role to facilitate in community if possible (rather than adjunct to established role) role (work goes faster)
Ensure appropriate preparation/orientation of people to these roles (eg field/community engagement-dependent on prior experience
Consider “What is appropriate skill mix for this role?”

  • If Community Engagement/PH background-needs EOL/Emotional skill support
  • If EOLC background-needs CE skill support

Experienced program facilitator provides safety to take a leap
Storytellers

Communication

  • Multi-agency partnership working that works
  • Networks
  • Relationships – existing and new
  • Do not overcomplicate things.
  • Keep documentation simple
  • Don’t make assumptions about ‘knowing your community’

Process

  • Commissioning support, Leadership and Project Management required
  • Timing Intelligence (what’s happening where/when it’s best to begin or hold off)
  • Need for integrated research and evaluation
  • Brand that has multiple meanings for broader reach
  • Tailoring message to initiate support/engagement
  • Being given opportunities and spotting abilities
  • See what works and keep momentum
  • This requires on-going learning
  • Extending reach/feelers via word of mouth/stories-making it personal/accessing established groups
  • Tailor benefits to get buy in pending individual/organisation engaging emotional benefits, financial benefits and organisational benefits
  • Identify gaps and opportunities to reach public including bar staff, hairdressers, co-operative funeral care, ADRTs and solicitors.

7. What’s Possible Now

What can we do now? Click the screenshot to hear our thoughts.
ways forward small Community Resource

The 4 key issues we identified moving forward are:

  •  The need for rigorous evaluation (long-term)
  •  Positioning projects within a wider strategy
  •  Ensuring sustainability amidst changing times
  •  Funding

Evaluation

  • Integrate measurement into process from the start
  • Need for evaluation and outcomes – stories one form of evidence
  • Evaluation to inform KPIs – define what these are

Wider strategy

  • Be ready with initiatives/bids in midst of on-going changes
  • Think about how to influence broader political landscape eg party manifestos
  • Look beyond for strategic partners
  • Create bigger footprint through use of media, partnerships
  • Need for a regional group/Community of Practice

Identified Future Needs & Opportunities (in no particular order)

  • NIHR PH research pro-forma
  • Baseline quality of death
  • Champions-into curriculum
  • Identified skill set for workers in this area:  Better listening – Confidence – Sign posting – Educate to the importance of “just let them talk”
  • Volunteers-recruitment/training/oversight
  • Training initiative
  • Communication strategy (regional/ local areas/ media coverage in free sheets/ North West
  • Shared library
  • List of resources-opportunities for Funding
  • On-going Workshops/meetings (Regional meetings of our group)
  • Annual Progress Conference
  • LETB: Northwest; North East and others
  • Public Health England
  • NHS Commissioning Boards (North)
  • Research: National funding (Public Health with Merseyside/Cheshire plus Greater Manchester plus Lancashire/Cumbria

We hope this resource compiled from our experiences shared in November 2012 will be helpful to you as you engage with these opportunities in your own communities. This resource was developed following a one day gathering as part of a Knowledge Exchange Grant. If you have comments about the resource, please direct them to Katherine Froggatt or Mary Matthiesen directly. Although we cannot respond directly to individual requests for information, we would encourage you to go to the project leads and/or their organisations directly for more information. (All titles and contact details were valid as of November 2012). For further information on any of the individual projects, please contact the individual people or organisations listed in the Project Overviews.

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