Design for Social Change : Case Study

Through Our Eyes…
Minority Experiences of End of Life Care

BACKGROUND

As a result of our successful Conversations for Life programme, we were approached and proposed a solution that engaged community organizations, the public and the health service: Creating a documentary film “Through Our Eyes’ to explore issues and identify changes needed-and use this as a catalyst for discussion and change. The project was funded under a Regional Strategic Clinical Network.

Problem

Everone wants the best end of life care possible. Yet the outcomes for the BAME community (minority experience) of end-of-life care are very different than for the white/british population. Research identified key gaps in both trust and communication. And though the NHS Trust also had a list of dozens of BAME community services and agencies- that ‘list’ did not = trust. How to improve access to and improve communication leading to improved access and outcomes of care for underserved/minority communities was the task at hand.

The UK is set to overtake the USA as the most diverse society in the western world over the next 35 years.

While socially and culturally we have made great strides in first accepting and then celebrating our diversity, some parts of our healthcare system have been slow to react to the changing demographic landscape.

BME Leadership Forum NHS Confederation
Engaging with BME Communities: insights for impact
Personal views from NHS Leaders 2013

Approach

Through Our Eyes, Minority Perspectives in End of Life Care engaged BAME community support and launched a film-led strategic change initiative, via a facilitated working stakeholder summit with participation from commissioners, care staff, BAME community members and agencies. The aim was to set network-wide priorities informed by personal and professional experience as well as the messages delivered in the film resource.

Process Summary

  • Contract with an innovative funder. In this case NHS and present an opportunity to them, to help solve a current problem.
  • Identify and research the evidence-based need and the gap.
  • Provide a time-limited process to launch including:
  • Engage the stakeholders as an independent part of the solution
  • Extract key messages from their stories; discover aligned opportunities of influence.
  • Work with organization and Map and design opportunities and best ways have impact within the organization, and engage with other communities to engage and spread impact strategically.
  • In this case – Design a working party facilitated strategic conference, with all communities of interest present.
  • Deliver a multilayered exploration of the stories and problems through an integrated, process
  • Deliver to the community, the healthcare staff and the commissioners, to identify points of impact.
  • Discuss Possible change initiatives from their perspective.

Phase 1:

Process/Outcomes:

  • 100’s of community agencies were contacted about the project; Local media and newsletters were engaged.
  • Relationships were established with the local agencies or individuals who responded in alignment with the project aims and objectives.
  • As a result of outreach efforts, filmed interviews were conducted with 16 volunteers from Afro-Caribbean, Hindu, Jewish, and Muslim communities talking about their experiences of end of care for a loved one, as well as an acute hospital nurse, care home staff member and commissioner.

Phase 2:

The second phase of the project was to inform the launch of this film-led initiative via a working stakeholder summit with participation from commissioners, care staff, BAME community members and agencies. The aim was to set network-wide priorities informed by personal and professional experience as well as the messages delivered in the film resource.

Outcomes:

  • 80 delegates participated across the three different delegate groups – commissioning groups/managers, communities and staff groups, all engaged in dialogue and conversation over a full day Summit with workshops.

SOLUTION

The Commissioning priorities and staff and community perceptions changed as a result of this initiative. Participant quotes and joint recommendations are listed in the Summit Report, outlining new possibilities between organisations, partners and communities to take these recommendations to the next level.

  • Resulting priorities from the summit have been summarized and provided as three common themes: system priorities, community engagement priorities and education & training priorities, to enable these to be easily translated into action plans at the various levels. Commissioners and managers who attended the event indicated that one of their priorities was to raise awareness and get this on their agenda going forward.
  • Evaluation of Summit Participants was done in real time: Results: Real-time evaluation summary.
    • At the start of the session, 54% of delegates said they know a specific step or action that they could take to create positive change.
    • At the end of the session, this increased to 94%, with delegates confirming that they now know of a specific step or action that they could take to create positive change.
  • In summary, the results indicated that the delegates had increased their levels of awareness specifically around palliative and end of life care for BAME communities. This met some of the main objectives of the stakeholder summit. Summary of the questionnaire evaluation/Feedback (N=54)
    • 97.62% of delegates ranked speaker presentation 4 or 5 out of 5
    • 89% learnt a great deal (ranking 4 or 5 out of 5)
    • 83% felt the event fulfilled their own learning objectives (4 or 5 out of 5) 76% felt that they were involved in priority setting (ranked 4 or 5 out of 5) 90% ranked the organisation of the event as efficient (4 or 5 out of 5) 90% would recommend this type of event to others (4 or 5 out of 5)
  • A comprehensive Summit report was produced and distributed: summarizing the recommendations on how we can effect change as well as how the film resource can be utilised to deliver some of the priorities highlighted in section four.
  • Through Our Eyes-Minority Perspectives on End-of-Life Care (DVD) was distributed to community agencies and NHS teams across the SCN and STC continues to develop resources.
  • Commissioning priorities and staff and community perceptions changed as a result of this initiative. Joint recommendations have been listed in the report and these reflect some of the possibilities between organisations, patners and communities to move forward the priorities and recommendations to the next level. Quotes and recommendations available in the Summit Report

Maqsood Ahmad, Network Manager for the GMLSC SCNs said:

“On behalf of the SCNs I would like to thank all those that took time out and shared their very personal experiences on film as part of this important initiative. Minority groups are often called, ‘hard to reach’. I don’t believe they are hard to reach. I believe the NHS can be hard to reach and do better. The people in the film have highlighted areas where I and my NHS colleagues can make a difference. I look forward to working in partnership with NHS colleagues and our communities to ensure the experiences (good and bad) of those that took part in the film are shared with the decision makers and implementers of care. This event has provided a significant opportunity for each of us to inform how best we can move this agenda forward to improve care for all.”

Read the Through our Eyes summit report »

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