1. #EOLC2018

2. 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

3. 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

4. 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

5. 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

6. 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

7. 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.

8. 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

9. 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.

10. 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.

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