Drink and Drugs News End of Life Care_Supplement_FINAL | Page 4

End of LifE CarE DIGITAL RESOURCES: ‘INSIDER INSIGHTS’ – THE COLLECTION IN ADDITION TO OUR FORMAL REPORTS AND RESEARCH BRIEFINGS, our community partner, VoiceBox Inc, led by Amanda Clayson, produced the audio resources listed below. They provide emotional and raw snippets of our research with people with experience, as well as with family members, friends and carers. They explain, power - fully, the difficulties people with substance problems, and their families, can face when seeking support at the end of life. All participants gave their permission for their voices to be used in these audio clips. Please note: some people may find these upsetting, so be mindful of that. We suggest you listen to the short introduction first before dipping into the rest. INVOLVING PEOPLE WITH EXPERIENCE IN THE RESEARCH PROCESS Under the guidance and leadership of our community partner, a separate group – the People with Experience Advisory Group (PWEAG) – was set up to offer people flexible and creative participation in the research process. The PWEAG’s report describes the important process of PWEAG involvement: https://endoflifecaresubstanceuse.com/2-people-with- experience-perspectives/ As a community partner, VoiceBox Inc’s main contribution was to extend the reach and access beyond the scope of the other practice partners – in particular, people with direct experience who may sit outside the parameters of substance use services and palliative care services. The process was a blend of initiation and opportunity, facilitation and exploration, responsiveness and reactivity to circumstances and diverse contexts. Working closely with the MMU researchers was key to the approach. COMMUNITY OF PRACTICE At the request of practitioners, we have set up a Community of Practice for people wanting to share information on policy and practice around end of life care for people with AOD problems. Please send us your email address if you would like to be added to this group. FURTHER INFORMATION The project website gives an overview of the project as well as providing links to our project reports and digital resources. These can be found at: https://endoflifecaresubstanceuse.com/reports-and- resources-2/ FOCUS OVERVIEW OF CONTENT INTRODUCTION 01. A brief overview of the background and content of the collection PEOPLE WITH EXPERIENCE Individual stories and personal impacts of care. Lack of information / Difficulty asking for help / Impact of needing support 02. Common barriers to accessing information and support 04. Some of the challenges families/carers experience in getting help Impact of denial / Not thinking about themselves / Asking and receiving 05. The emotional impact of caring Responsibility and recrimination / Powerlessness and anger / Guilt and self-blame 06. Grief and bereavement support How grief is experienced / Does support help or hinder? / Moving beyond despair PRACTICE Messages for practitioners in specialist and non-specialist services across hospital, community and home. 07. Communication around ‘end of life’ – what helps and what doesn’t? Timely and direct / Interpretation and sensitivity / Involving and proactive 08. Compassionate care is crucial! At home and in hospital / The ‘look and feel’ / When it’s lacking 09. What influences the experience of compassionate care? Perceptions of stigma / Trust and relationship building / Vulnerability and humanity SYSTEM Policy and resource implications around substance use and end of life care across a range of settings. From Manchester Metropolitan University: Professor Sarah Galvani, Dr Gemma Yarwood, Dr Cherilyn Dance, Dr Sam Wright, Dr Lucy Webb, Dr Jo Ashby, Dr Gary Witham, Professor Josie Tetley, Professor Carol Haigh, Dr Marian Peacock. External consultants: Lorna Templeton – independent research consultant, Bristol, Amanda Clayson – founder, VoiceBox Inc, Dr Fiona Duncan – independent research consultant, Manchester. Contact details: For further details on this project, or to be added to the Community of Practice, please contact Sarah Galvani, [email protected] or Sam Wright, [email protected] VoiceBox Inc: Email – [email protected] Mobile – 07734 204564 Twitter – @voiceboxinc1 LENGTH LINK 2m 20s https://youtu.be/BuJgReRoIwk 4 m 19s https://youtu.be/zITwcSuy7Ug 3 m 41s https://youtu.be/hoYPXfUsnjw 3m 12s https://youtu.be/lyH3kOP9a8s 2m 57s https://youtu.be/wPTEf45cpGU 2m 49s https://youtu.be/VtLtxgfL48s 3m 52s https://youtu.be/YZqaM1Tamf8 2m 50s https://youtu.be/-XLrBx6zgBE 4m 45s https://youtu.be/kmW_upr0pFI 4m 15s https://youtu.be/BiDB21dUPNY 3m 41s https://youtu.be/mLGyqk3ydWE 3m 56s https://youtu.be/NVxnloO-cjs 03. Some specific issues to consider Struggles around medication / Feeling stigmatised and judged / Seeing beyond substance use ‘behaviour’ FAMILY MEMBERS, FRIENDS AND CARERS Personal experiences of caring and support, before, during and after death. MEET THE TEAM 10. Availability and access to appropriate care What’s needed? / When and where? / Who can provide it? 11. What’s needed to give real choice? Understanding the issues people face / Challenging stigma and shame / Confidence in and coherence of support 12. Training and development themes Understanding impact of substance use / Connecting with the ‘lived experience’ / ‘Humanising’ practice 4 | DDN | End of life care for people with problematic substance use and their families www.drinkanddrugsnews.com