#EOLC2018

Common themes Recognising the importance of communication Understanding the complexity and multiplicity of needs Countering stigma and stereotyping Addressing symptom and pain management Delivering compassionate and non-judgemental care

Recognising the importance of communication Communication, or lack of, is at the core of the project’s findings Communication between professionals, or professionals with individuals and family members Better communication needed between SU and EoL professionals** Lack of competence or confidence? Poor communication is keeping people in need from engaging with services and getting good EoL care

Between professionals and people with experience Communication Between professionals and people with experience Between professionals and family members Between people with experience and families Between different groups of professionals Between policy and practice

Understanding the complexity and multiplicity of needs Many overlapping needs among this group of people – and their families. ** Identification of needs was limited, negatively impacting on subsequent care and recording/monitoring. Needing to navigate many different systems to get care – not helpful at this point in their lives. Hospice professionals – symptoms from terminal illness or substance use? SU professionals – identifying EoL/care needs; deaths in service

Person with experience of life limiting illness and problematic substance use Financial difficulties Mental ill health Emotional stress or trauma Social isolation Non-substance related physical and mental health conditions Problematic service engagement Single service structures Inadequate care pathways Lack of recording of needs Housing support needs Criminal justice system involvement Complex family relationships Families' own needs

Countering stigma and stereotyping Entrenched stigma and stereotypes around people with problematic substance use. Requires a paradigm shift to maximise engagement with care providers. Fear of disclosing SU at EoL or to social care or health practitioners. Health problems not addressed and attributed to substance use. National anti-stigma campaign is needed.

Addressing symptom and pain management Very common concern among health practitioners - how to alleviate pain safely with people using substances ‘Chemical coping’ – substance topping up their medication due to inadequate pain relief Drug diversion by family members or friends Safes and locked boxes used to counteract this People with historic substance use refusing medication based on opioids Guidance needed – balances adequate pain relief with a person’s choice to continue using

Delivering compassionate and non-judgemental care Anecdotes of caring and supportive individuals/services Heard examples of staff being innovative, creative, advocating Holistic models of service well received – care starting with their priorities Examples of very poor care – from disrespectful treatment, to uncomfortable and undignified deaths Better education and training for health and social care professionals required, preferably in context of better public health messages that address stigma.

Next steps Huge gaps in the research evidence Appetite for practice guidance in a range of areas from what we do know, e.g. asking about substance use to prescribing medication Need for policy review at national and local levels Need for set of standards in policy which can be reflected fully in practice Continue to disseminate and build on this research.

Thank you Sarah Galvani Email: s.galvani@mmu.ac.uk Tel: 07775 680418 Website: endoflifecaresubstanceuse.com Twitter: @SarahGalvani Twitter for research group: @SUABManMet