Practice Certificate in Equity, Diversity & Inclusion for Palliative & EOLC

PLEASE NOTE PART FUNDING IS AVAILABLE FOR HOSPICE STAFF VIA HUK’s GRANT PROGRAMME .

Palliative care emerged in the 1960s in response to the increasing number of people dying with cancer and the quality of care that was available. However, despite many years of development most patients who get access to palliative care are white people with cancer. There are numerous research studies that describe the challenges of access faced by people from ethnically diverse communities, people who identify at LGBTQ+, people who are homeless and those who have other diseases that would benefit from palliative care.

There are many reasons for this including funding and capacity. There are though other reasons relating to a lack of community engagement, institutional parameters around system design and a focus on ‘services’ and not the strengths of community.

The practice certificate is in three parts which all need to be completed to complete the award: -

1. Introduction to the programme and what to expect

1. 7 workshops

1. 2 peer support / debrief discussions

1. A practical project that can take place over 6 months

The workshops include: -

1. Introduction including the historical context, data and evidence of the challenge of access to palliative care

2. Power and privilege and how this impact care design

3. Forms of discrimination and intersectionality

4. Racism and Anti-Racism in palliative care

5. Community Engagement and co-production skills – shifting power to communities

6. Institutional challenge and change

7. EDI and the workforce

Anyone who works in Palliative and End of Life Care in the UK knows that there are ongoing challenges with regards to equity of access. This is not just for people from ethnically diverse communities but also people with a diagnosis other than cancer. In addition, groups that do get access are reporting not feeling that they or their families are accepted e.g. people who identify as LGBTQIA+

"The benefits of palliative care are not experienced equitably. Many racialized people have suffered discrimination at the hands of the health system and are affected by intergenerational racial trauma. Racialized individuals have less utilization of palliative care services, experience worse symptom control, and are less likely to have their end of life wishes documented or respected" (Silva MD et al, 2016)

"Well, this doctor, a female doctor, stood outside the door saying, ‘I need a chaperone’. I’m lying there, really ill and thinking: what? Why does she need a chaperone? And she must have called out about a dozen times, … then eventually one of the nurses came up to her and said, ‘What do you need a chaperone for?’ She answered, ‘Because she’s a lesbian!’ I can’t tell you how furious I was, but I was just simply too ill to deal with it.” (Hiding Who I am, Marie Curie 2017)

A public health approach to palliative and end of life care is population based – with no one left behind. However, it is also an approach that celebrates diversity, the talents, insights, cultural riches and different approaches to care giving, death, dying and loss.

The aim of this programme is to dig into some of the more uncomfortable areas of equity including power and privilege, intersectionality, racism and anti-racism, how to lead change in your organisation, how to be an ally and why the Equalities Act doesn’t go far enough. Most importantly it is also about taking action via a project and individual reflection.

The team includes:-

• Balwinder Kaur, Interim Director of Adult Social Care, Surrey County Council

• Dr Gurpreet Gupta, Palliative Medicine Consultant, St Luke’s Hospice, Northwest London and chair of the race equity committee, Association for Palliative Medicine

• Helen Juffs, Independent Health and Wellbeing Practitioner and End of Life Care Doula

• Suzanne McArthur, Community Development

• Dr Julian Abel, co-founder of Compassionate Communities UK and retired Palliative Medicine Consultant

• Dr Emma Hodges, Development Director of Compassionate Communities UK

Learning Objectives: The overarching learning goal for the course is to facilitate a programme of learning that supports a reduction in systemic prejudice and improved patient, family and community outcomes in the field of end-of-life care.

Each module has a set of three learning objectives which will be evaluated throughout the course via session interaction, short module reflective questions and a final assessment via an assignment.

Module 1 - 7th May – Historical context, definitions and data. This module will set the context for the course including a celebration of diversity, why we need to focus on active steps and accepting that most people do not set out to be prejudiced.

Learning Goal - To provide historical context and data to describe the challenge and impact of inequity in palliative and end of life care

Learning Objectives – following this module you should be able to: - 1. Be able to explain data and trends regarding inequity in palliative and end of life care 2. Be able to outline the historical context in relations to inequity in palliative and end of life care 3. Be able to explain the key definitions and their relevance in the field of equity and palliative and end of life care

Module 2 -14th May - Understanding power and privilege. This module will develop confidence in use of language, identification of, and approaches to power and privilege. It will illustrate that power and privilege is historical in origin and has impacts into the present day and learn how they can be used to decrease rather than increase inequity.

Learning Goal – To provide insight into the issues of power and privilege to evaluate practice examples

Learning Objectives - – following this module you should be able to: - 1. Be able to compare approaches that celebrate diversity in comparison to those that focus on deficits 2. Be able to explain the historical context and current impact of power and privilege 3. Be able to evaluate approaches in the workplace and in health and care and their impact on power and privilege

PEER SUPPORT SESSION - 21st May

Module 3 - 4th June - Forms of discrimination including examples within palliative care and intersectionality – this module will discuss the range of examples of inequity and the importance of a broad and inclusive approach.

Learning Goal – To provide a focus on equity via the nine protected characteristics of the equality act, intersectionality to explain the broad nature of inequity in the field of palliative and end of life care

Learning Objectives - following this module you should be able to: - 1. Explain the pros and cons of the nine protected characteristics as a focus for inequity 2. Compare data and literature from different studies in relation to excluded groups 3. Illustrate your own personal or professional experiences of intersectionality as a reflective exercise

Module 4 - 11th June - A focus on racism and antiracism, calling it by its name. This module focuses specifically on the issue of racism, both the impact on individuals who are subject to racist language and behaviour and the strengths of diverse communities.

Learning Goal– Apply the learning so far to the issue of racism and the concept of anti-racism

Learning Objectives - following this module you should be able to: -

1. Be able to explain the difference between racism and anti-racism and the shift from advocate to ally 2. Evaluate traditional approaches to inclusion to one that celebrates racial and cultural diversity 3. Plan some actions you can take to shift to an anti-racist approach in your practice/organisation

PEER SUPPORT SESSION - 18th June

Module 5 - 25th June - Power relationships – shifting from power and dominance to Community participation. This module will discuss the impact of power-based service delivery design and the negative impact on communities, community treasure mapping as a catalyst for change and a discussion about implementing a community development approach in practice.

Learning Goal – To demonstrate and plan a community development approach to equity in palliative and end of life care

Learning Objectives - following this module you should be able to: -

1. Explain how power relationships from a service delivery perspective have a negative impact on communities 2. Apply community development approaches to the issue of equity and community inclusion 3. Compare practice examples of community development in palliative and end of life care

Module 6 - 2nd July - EDI strategy for organisations and institutional change – this module will discuss EDI strategies and approaches including a focus on belonging, engagement, governance and institutional change

Learning Goal – To advocate for a holistic approach to EDI as a whole organisation strategy and approaches institutional change.

Learning Objectives - following this module you should be able to: -

1. Explain the benefits of a whole organisation strategy, 2. Understand models of institutional change 3. Create a basic EDI strategy for your organisation

Module 7 – 9th July – EDI and the workforce – this module discusses key areas of action and approaches to improving equity, diversity and inclusion in the workplace.

Learning Goal – To help create a culture of belonging in our workplaces

Learning Objectives – following this module you should be able to: -

1. Better understand everyday discrimination in the workplace, 2. Explain how key policies and bias can create change and 3, understand active inclusive allyship.

16th July - Debrief session.