1. Connecting Health and social care to Offer Individualised Care at End of Life Dr Caroline A.W. Dickson, Senior Lecturer in community Nursing, QMU, Edinburgh Helena Kelly, Lecturer Glasgow Caledonian University Janice Logan, Lecturer, St Columba’s, Hospice Edinburgh

2. Overview To develop and test an initial framework of integrated working to facilitate person-centred care for patients and families at the end of their life who are being cared for in their home.

3. Background Key national drivers – integration and person- centredness (NHS Scotland 2013; DH 2014) Enabling ‘everyone to live longer and healthier at home, or in a homely setting’ (SG 2008; 2013; DH 2014) Integrated ways of working (SG 2013; DH 2014) Little research underpinning the role of the care worker or integrated working in this area of practice (Herber and Johnston 2013; Devlin and McIlfatrick 2009) Queen’s Nursing Institute: Nursing Creating Connections Project Grants

4. Methodology Realist synthesis (Pawson 2008) Participatory research McCormack & McCance (2006) Practice Development (McCormack et al. 2007)

5. Stakeholder involvement Refined by stakeholders Steering Group Project Group Focus groups Practice Development Group Ethical approval sought and granted.

6. Rapid review of literature drawing on realist synthesis Aim 'to articulate underlying programme theories and then to interrogate the existing evidence to find out whether these theories are pertinent and productive' Intention to uncover theories about interventions - what makes it work (or not) in a given context adopting particular mechanisms of action

7. Identify the question Clarify the purpose of the review Articulate programme theories Search for the evidence Appraise the evidence Extract the results Synthesis findings Consultation & refinement of findings

8. Clarify purpose of review Identify the question: ‘ In maintaining person-centred end of life care for patients and their families at home, what aspects of integration work, for whom do they work, in what circumstances and why?’ Sub questions based on the key question above: What is the nature of Health and Social care Integration? What are the prerequisites for its use? What policies drive integrated care at end of life at home? What is the expected impact of integrated Health and Social Care at end of life care at home?

9. Policies driving integrated care at EoL at home Living and Dying Well (SG 2008) Routemap to 20 20 Vision (NHS Scotland 2013) Caring for People in the Last Days and Hours of Life (NHS Scotland 2014) Gold Standards Framework (http://www.goldstandardsframework.org.uk/) Quality Strategy (SG 2009)

10. Nature of health and social care integration Cooperation-coordination (e.g. MCNs) fully integrated (joint planning and management/ pulled funding and MDTs) (Kodner and Spreeuwenberg 2002; Eyre 2010; Karlsson and Berggren 2011: Gardiner et al 2012) Focus on prevention/anticipation and focused SM to ensure minimal risk and unnecessary hospital admission (Bower et al 2010; SG 2013; Beland 2013) Working in partnership with patients and families (Nikanen 2002) Each member of the team aware of patients needs and others roles and responsibilities (Alsop 2010; DeMiglio and Williams 2012; Gardiner et al 2012) Early intervention/effective planning/same day assessment (Bower et al 2010) Patient focused/person-centred; Based on a holistic model of care (Ahmed 2011) Based on a patient pathway (Robertson 2011) An inter-agency approach to care planning Values based model of care (Payne 2007)

11. Pre-requisites

12. Improved patient experience Expected Impact Increased job satisfaction Dignified care Support for carers Support for professionals Equity Enabling families and carers Respectful working relationships Sharing good practice Seamless care Person- centredness Openness/accessibility Making every contact count Effective teamwork Responsive services Overcoming professional boundaries Increased collaboration with GPs Consistent policies Easy referral process

13. Synthesising evidence Brainstorming project team Brainstorming steering group Focus groups –Family carers –Community nurses –Social care workers

14. Articulate programme theories A Person- centred approach drives integrated working for patients at end of life at home. Workplace and Organisational cultures affect successful integrated care at end of life. Working in partnership with patients and families will enable self-management and improve the patient and family experience of end of life care at home. Good case management features effective leadership supported by integrated organisational structures. A holistic person-centred model of end of life care will be enhanced by effective collaboration.

18. Practice Development Group

19. Testing using Practice Development Vision Prioritising Action planning Evaluation Refinement (McCormack et al. 2011; Manley et al. 2013)

21. Shared vision Integrated person-centred EOL Care at home is…….. Skilled health and social care staff working together, supporting each other to build a relationship with the ‘cared-for person’ and family and/or significant others to provide holistic care where everyone feels valued, has choice and dignity through open communication. We will work together with ‘cared for persons’ to asses, plan and evaluate care of their choice giving sufficient time to give streamlined, coordinated care with staff continuity to achieve a dignified death.

23. Action planning Identified priorityRelationship to model Identify social care workers interested/keen to engage with EOL care Ensure skilled staff (education and training) Shadowing opportunities Organisational structures – robust selection and recruitment Education and training Integrated team meetings (?monthly) Early intervention Effective care coordination Effective discharge Organisational structures – Integrated teams with a shared vision and goals A culture where everyone feels valued Team structures - Identified care coordinator Improve communications – systems, team, and care plan? Joint visits and joint communication (inc documentation) Organisational structures – A culture where everyone feels valued Building resilience and capacity Support for everyone involved.

24. What next? Further refinement Questions for you – What are the strengths of this model? How could it be further refined? https://www.google.com/search?site=&tbm=isch&source=hp&biw=1152&b ih=605&q=map+of+the+world&oq=map+of+the+world&gs_l=img.3..0l10. 2903.5355.0.6118.16.16.0.0.0.0.97.1006.15.15.0.crnk_zc...0...1.1.64.img..1. 15.988.xj3NJjDpNfY#tbm=isch&q=the+thinker&imgrc=UljXmqH5nkW7f M%3A

25. References DEPARTMENT OF HEALTH 2014. The Five Year Forward View. DH London. GOLD STANDARDS FRAMEWORK http://www.goldstandardsframework.org.uk/ [Accessed 24 th April 2015]http://www.goldstandardsframework.org.uk/ HERBER, O. and JOHNSTON, B., 2013. The role of healthcare support workers in providing palliative and end-of-life care in the community: a systematic literature review. Health and Social Care in the Community. Vol. 21, no. 3, pp. 225-235. DEVLIN, M. and MCILFATRICK, S., 2009. The role of the home-care worker in palliative and end-of life care in the community setting: a literature review. International Journal of Palliative Nursing. Vol. 15, no. 11, pp. 526-532. MANLEY, K., TITCHEN., A. and MCCORMACK, B., 2013. What Is Practice Development and What Are the Starting Points? In B McCormack, K Manley and A Titchen (2013) Practice Development in Nursing (Vol 2). Wiley-Blackwell Publishing, Oxford. pp: 45-65 MCCORMACK, B., DEWING, J. and MCCANCE, T., 2011. Developing Person-centred Care: Addressing Contextual Challenges through Practice Development. The Online Journal of Issues in Nursing. Vol. 16, no.2 NHS SCOTLAND 2014. Guidance: Caring for people in the last days and hours of life. Edinburgh: NHS Scotland NHS SCOTLAND.,2013. A Route Map to the 2020 Vision for Health and Social Care. Edinburgh: Scottish Government. PAWSON. R., 2006. Evidence-based Policy: A Realist Perspective. London: Sage Publications Ltd SCOTTISH GOVERNMENT., 2008. Living and Dying Well: A national action plan for palliative and end of life care in Scotland. Edinburgh: Scottish Government.