The experience of substance use services in providing care at end of life

1. The experience of substance use services in providing care at end of life Vicky Lindsay - Aquarius

2. Why examine End of Life Care ? • Recovery focused services cannot ignore the impact of mis-using alcohol and drugs on physical health and mortality rates in those clients over 40 • Spotlight on Alcohol Related Liver Disease, observed gaps in services here • Findings of 2 projects in Birmingham and some suggestions for the way forward

3. Project 1- Befriending Care • Aquarius was awarded Cabinet Office funding to develop a 12 month end of life care service for people with ARLD, provided by volunteers. Social action focus. • Part of national evaluation project conducted by the End of Life Observation, University of Lancaster and NCVO called ELSA • Service commenced in March 2015. funded for 12 months, worked across Birmingham and Solihull • Senior Practitioner & team of well trained and supervised volunteers, who provided Befriending Service to clients at home . • Independent evaluation commissioned to help us develop a plan for continuation.

4. Benefits for those with ARLD • Reduced isolation & improved social networks, including engagement with services. • Practical support e.g. medical appointments, housing, benefits. • Improved coping skills, including management of ARLD. • Reduction in incidence of crisis. • Improved quality of life & feeling of control in planning their future. • Overall, received support regarding ARLD and broader range of needs.

5. Case study 1 – Wider social needs • Male aged 55, long history of alcohol use, abstinent but frequent hospitalisation with ascites, unemployed, anxiety and depression, estranged from family, limited social networks, living in a [wet] hostel. • Befriending Service – support regarding housing, maintained abstinence, resolved some financial matters, engaged with various Aquarius services. • Significantly, after a few months client moved in to own flat became part of the community and remained abstinent for some time, health much improved.

6. Case study 2 complexity of ARLD • Male aged 37 , frequent hospitalisation, ascites, poor nutrition, poor mobility, struggled with medication, memory, anxiety, depression. • Moved back to live with parents in 1 bedroom property (father has cancer). • Befriending Care – stopped drinking, wished to engage with treatment, some health improvements, help with appointments, re-engaged with Church, renewed contact with child, support to parents. • Attempts to involve palliative care by project dismissed by GP and Consultant “client not terminally ill” • Client died three weeks later • Volunteer continued to offer support to parents after death.

7. Trajectories of Decline in Liver Disease

8. Befriending Care -Some of the findings • Clients often told they are at risk of dying if they don’t stop drinking ie as a deterrent • Families and clients often don’t believe they are going to die of liver disease (its not cancer) and they are not told • Doctors are reluctant to estimate length of time left because ARLD is episodic • Hepato- and Gastro -specialists we spoke to had no elements of palliative care in their training • From working with our clients we concluded between specialists and GPs is often sparse

9. Further Activity • Met with groups of consultants and registrars at 4 hospitals • Met with hospice staff,no experience of patients with Liver Disease • Contributed to local End of Life Strategies to promote needs of non- cancer patient groups • Attended Liver forums with local PHE • Consolidated our own evaluation • Devised new project design to discuss with CCGs

10. Project 2 - Liver Matters • Discrete area of South Birmingham CCG , funded 18 months • Senior practitioner, support worker and volunteers • Holistic case coordination of clients to advocate for additional services as well as volunteer service • GPs central in referral process, required visits to all 64 practices to explain service and provoke discussion on End of Life needs • Local hospice, local hospital , Regional Liver Unit

11. Liver Matters - the work • 53 referrals, Range of clients • Drinking, not drinking, sometimes drinking • Complex , more complex with more than one physical health issue or • Mental Health or Mental capacity • Housing, Finances, family /carer needs

12. Support for Clients Practitioners provided • Assessment, risk and action planning, • Advocacy and liaison with relevant services • Access to quality information about liver disease and well being, • Support at key appointments Volunteers provided • Home visits, Emotional support, Peer support, activity groups Practical support, family support groups • bereavement support to family/friend, Public awareness events in hospitals and community

13. Support for staff and volunteers • Time to research other organisations and resources • Training from hospice staff & other specialist teams • Supervision, group and one to one • Allowed space and time to reflect • Consultancy and training to other staff teams

14. Multi-Disciplinary Working • Along side GPs, varied responses • Networking with EOL volunteer – coordinators, help to develop volunteer roles • Local Hospice, admissions team, development staff, training exchange • Developing role at UHB - CNS Hepatology, a turning point - recognition of social needs of clients in medical team • A Model of Joint working – Wolverhampton- End of Life and Hepato -Gastro specialists and D&A team

15. Tools used • Developed Handbook with information on Alcohol Related Liver Disease, self care, for use with clients and family members • Standardised presentation for all professionals on ARLD and End of Life needs • Dying Matters materials - staff and volunteer training • Advanced Care Plan in standard client assessment pack • Surprise Question, SPICT • Flexibility - Be ready for anything

17. Dying Matters

18. Learning for the future - SMS can…. • Identify EOL clients on case load, using the Surprise Question • Discuss in supervision, or mentor using the SPICT tool, and consider client needs • Staff Allocation, specialist(s) in team • What can your wider service provision offer.. activity groups • Look at Volunteer Capacity .. Skills, policies and procedures • Find allies.. share concerns with GP, talk with local hospice re potential ways forward, don’t be afraid to discuss case with anonymity - develop your own multi-disciplinary teams • Transform recovery plan into Advanced Care Plan

19. References • NHS Liver Care http://www.hcvaction.org.uk/resource/getting-it-right-improving-end-life-care-people-living-liver-disease • ELSA: a randomised wait-list controlled trial and embedded qualitative case study evaluation assessing the causal impact of social action services on end of life experience Walshe et al University of Lancaster • Volunteers in End of Life toolkit Lancaster End of Life Observatory https://redcap.lancaster.ac.uk/surveys/?s=PKXXDXDREK • Dying Matters/ NCPC for leaflets • Alcohol-Related Harm: developing a drug and alcohol liaison team Musgrave C. et al Br J Nurs 2018 • SPICT / how to use SPICT in community settings https://www.spict.org.uk/the-spict/ • Evaluations: Befriending Care /Liver Matters written by Lorna Templeton, available from Aquarius

20. THANK YOU