Palliative and End of Life Care Raising Awareness Session Welcome and introductions around the room. If you haven’t already, you may wish to try a simple ‘check in’ with people – ie ask people to say their name, where they come from and say something about a piece of clothing they are wearing today. This helps bring everyone’s voice to the room.

Palliative and end of life care in Scotland From today, we hope you will: feel more confident and knowledgeable about palliative and end of life care feel more connected with colleagues and people in my networks to explore how the palliative and end of life care framework can shape our work feel listened to and more involved in the palliative and end of life care framework journey understand how the palliative and end of life care educational framework can help support your practice. Intended outcomes for the session – you may wish to add or alter them.

What is palliative care? ‘One way of thinking about “palliative care” is to talk in terms of providing “good care” to people whose health is in irreversible decline or whose lives are coming to an inevitable close. ‘However, palliative care is not synonymous with death – it is about life, about the care of someone who is alive, someone who still has hours, days, months, or years remaining in their life, and about optimising wellbeing in those circumstances.’ Scottish Partnership for Palliative Care https://www.palliativecarescotland.org.uk/content/what_is_palliative_care/ Perhaps what differentiates ‘palliative care’ from ‘just good care’ is the awareness that a person’s mortality has started to influence clinical and/or personal decision making.

What is end of life care? ‘End of life care is that part of palliative care which should follow from the diagnosis of a patient entering the process of dying, whether or not he or she is already in receipt of palliative care.’ Scottish Partnership for Palliative Care https://www.palliativecarescotland.org.uk/content/what_is_palliative_care/ This phase could vary between months, weeks, days or hours in the context of different disease trajectories. There can be uncertainty involved in identifying when someone might be expected to die – illness can be unpredictable and changes can occur suddenly and unexpectedly. The World Health Organization’s definition of palliative and end of life care can be found here http://www.who.int/cancer/palliative/definition/en/

Activity What do you feel are the skills, qualities and knowledge needed to do your job on a daily basis? (Green PEN) Now, what do you feel are the skills and knowledge needed to deliver palliative and end of life care? (in different colour) Reflect on the similarities/differences. Using the gingerbread person outline, ask attendees to identify the skills and knowledge they need to deliver quality care on a day-to-day basis – ONE colour pen – answers could include; compassion, patience, personality, empathy, listening skills, flexible, adaptable, good communication skills, positive attitude, observation skills, time management skills, ability to understand the needs of each individual, team work etc. The SECOND part is around the skills and knowledge they would need if they are delivering PEOLC – there may be some additions but the core skills and knowledge will be the same. The purpose of this activity is to highlight and reflect with the attendees, the skills and knowledge they have already and need to deliver high quality care on a day-to-day basis, are similar (or the same) as the skills and knowledge required to deliver care with someone who is palliative. This activity aims to increase individual’s awareness and confidence around the delivery of palliative and end of life care.

Why palliative and end of life care in Scotland 46000 will need some form of palliative care 11000 don’t get the palliative care they need 57000 people die every year The figures in this slide are from 2016. Did you know that 57,000 people die each year in Scotland but 11,000 of them do not receive the palliative care needed.

What’s the aim? Vision: By 2021, everyone in Scotland who needs palliative care will have access to it. Commitment 3: We will provide support the workforce by developing a new palliative and end of life care Educational Framework, creating a sense among both health and social care of staff of feeling adequately trained and supported to provide the palliative and end of life care that is needed whilst fostering an integrated and collaborative approach to educational provision. The Scottish Government developed the Strategic Framework for Action on Palliative and End of Life Care – their vision is by 2021, everyone in Scotland who needs palliative care will have access to it. It was in Commitment 3 of the Strategic Framework which asked the Scottish Social Services Council (SSSC) and NHS Education Scotland (NES) to develop a new PEOLC Educational Framework.

Framework Enriching and Improving Experience Palliative and End of Life Care A framework to support the learning and development needs of the health and social services workforce in Scotland Background purpose The Strategic Framework for Action on Palliative and End of Life Care (2015), 10 commitments towards a national vision by 2021 – Scotland has a compassionate and committed health and social service workforce and the PEOLC framework seeks to build on the considerable capacity and expertise that already exists. The framework sets out the knowledge and skills required by all workers who might come into contact with palliative and end of life care, their families and carers. It builds on and supports the learning and development needs of all health and social service worker in Scotland. Health and social care in Scotland is changing. Integration means that more than ever teams from different workplaces are coming together to provide care and support, focused on people’s needs. It is recognised that this framework does not sit in isolation but is closely linked to other work that is going on within health and social services (Linking with to other strategic developments) ie Promoting Excellence Framework (PE people living with Dementia) and Equal Partners in Care (EPiC – Carers). Recognising and building links at local, regional and national level is key to successful implementation.

Getting the best from this framework It’s all about experience: everyone’s experience. The experience of people requiring palliative and end of life care and support. The experience of people providing palliative and end of life care and support.   The framework is all about people’s experience, everyone’s experience.

Domains Five domains reflect core knowledge and skills Domain 1 Fundamentals of palliative care Domain 2 Communication and Conversations Domain 3 Loss, grief and bereavement Domain 4 Care planning and delivery Domain 5 Care in the last days of life Each of the domains reflect the core knowledge and skills considered integral to the delivery of high quality palliative and end of life care. Fundamentals of palliative care: underpinning principles of palliative care approach incorporates elements essential to improving and developing PEOLC service provision eg principles, approaches, MDT working, professional, legal, ethical frameworks, values. Communication and conversation: effective communication and conversations are integral to the provision of PEOLC. Essential skills for supporting people with uncertainty, distress, decision making and for effective teamwork. Loss, grief and bereavement: acknowledgement given to potential impact of living and working with loss and recognises the importance of appropriate support for self and others. Planning and delivery: outlines the importance of working in partnership with the person, family and carers to promote participation, choice and control and address person outcomes and holistic needs. Care in the last days of life: care in the last days of life, death is expected, naturally occurring and all possible reversible causes have been considered.

Levels – knowledge and skills Each domain presents four levels: Informed Skilled Enhanced Expert. Each domain outlines 4 levels of Knowledge & Skills (K&S) that outline what workers need to know and do, depending on their degree of involvement in PEOLC and level of responsibilities in providing care for PEOLC needs. Some of the K&S Integral to H&SC but are applied in context of PEOLC Informed: K&S required by all HSC workers in relation to HSCP Skilled: K&S required by HSC workers by virtue of role and level of responsibilities regularly provide PEOLC and support Enhanced: K&S required by HSC workers by virtue of role and level of responsibilities provide, co-ordinate and manage and support care Expert: K&S required by HSC workers by virtue of role and level of responsibilities provide an expert role in care and support.

Framework structure This is the visual graphic of the framework structure. The link to interactive pdf is embedded in text Framework structure, Click on mouse right button and open hyperlink. To demonstrate usage. Within the interactive PDF you can move between the domain and levels by click on the Hexagon and then going back to the main menu to change domains The hexagon graphic tries to represent how people can move through the framework Each domain has a specified ICON and has four levels of knowledge and skills. The K&S required by workers may differ across the five domains depending on their degree of involvement and role responsibilities Generic framework in that it is not role or profession specific. K&S at each level are incremental in depth and breadth within the domain as it increase at each level. The enables framework to be used flexibly, supports workers to develop their K&S at different levels. http://elearning.scot.nhs.uk:8080/intralibrary/open_virtual_file_path/i2564n4083939t/Palliative%20framework%20interactive_p2.pdf

Structure - key messages Depth and breadth knowledge and skills increases at each level. Knowledge and skills at each level are incremental. Generic – not role or profession specific. Flexible approach -the levels of knowledge and skills across the five domains may differ. It is really important to comprehend these key messages. The framework offers: • the flexibility for all workers to engage at the level most appropriate for them • everyone should be able to get something out of the framework. It may be that it affirms their K&S at one level or indeed identifies gaps or recognise that workers may sit at different levels of K&S depending of the role responsibilities and engagement with people requiring PEOLC and support. The framework also facilitates a benchmark for the K&S required to provide, care and support to meet PEOLC needs. This is helpful to individuals, organisations and education providers.

Who can use the framework Individuals Managers/ organisations Education providers The frameworks flexibility enables it to be used in different ways to support learning and development at individual, service-provider and organisational level.

Palliative and end of life care in Scotland You could use the framework at service or organisational level to: consider the organisational support and resources available map existing learning and development provision use the framework to identify gaps and prioritise learning needs across groups and sectors use the framework to review and support practice to be consistent with the underpinning principles and the knowledge and skills integrate PEOLC learning and development into workforce development plans. Organisational level plus examples of how.

Palliative and end of life care in Scotland As a line manager or supervisor you could use the framework with individuals and teams to: raise awareness of palliative and end of life care and discuss the knowledge and skills required with workers for their role responsibilities and identify gaps use the framework to support staff with their personal and professional development planning and, where appropriate, revalidation contribute to wider organisational workforce planning. Individual level plus examples of how.

Palliative and end of life care in Scotland Education and training providers could use the framework to: ensure that the framework principles, knowledge and skills are integrated review existing content and provision map and benchmark existing learning and development opportunities to the framework domains and levels shape the design and delivery of learning units collaborative and integrated learning. Line Manager or Supervisor – why and how.

Activity – create a spider graph If by, having a personal outcomes approach which underpins your day to day role around enabling people to achieve what matters to them, please discuss: what you feel is working well in your role around palliative and end of life care (red pen) what are the challenges and barriers (green pen) how would you like palliative and end of life care delivered to everyone (blue pen) what support do you need from us? (black)   Spider graph activity The next section brings the skills and knowledge (behaviours) discussed and makes links to the new Health and Social Care Standards (HSCS), other frameworks and pieces of legislation. Please use the slides you feel comfortable talking to.

Palliative and End of Life Care Framework and the Health and Social Care Standards Principles Dignity and respect Compassion Be included Responsive care and support Wellbeing Standards I experience high quality care and support that is right for me. I am fully involved in all decisions about my care and support. I have confidence in the people who support and care for me. I have confidence in the organisation providing my care and support. I experience a high quality environment if the organisations provides the premises. https://www.youtube.com/watch?v=xXd2kbmKZwc If you have time - Henry Mathias from the Care Inspectorate – It’s all about experiences.

Difficult conversations picture

I have confidence in the people who support and care for me Dignity and respect I experience people speaking and listening to me in a way that is courteous and respectful, with my care and support being the main focus of people’s attention. Palliative and End of Life Care Framework – Informed Level Domain 1 – Fundamentals of palliative care Knowledge – know the meaning of person-centred and family-focused care and support in the context of palliative and end of life care. Skills – treat people with dignity and respect and recognise issues related to diversity, culture and inequality in palliative and end of life care. Domain 2 – Communication and conversation Knowledge – know about effective person-centred communication skills and barriers to communication. Skills – engage with people in a way that respects their wishes confidentiality, choices, unique strengths and abilities. Examples of mapping HSCS with the PEOLC Framework at Informed level

Talking is time well spent picture

I have confidence in the people who support and care for me Responsive care and support I am supported and cared for sensitively by people who anticipate issues and are aware of and plan for any known vulnerability or frailty. Domain 4 – Care planning and delivery Knowledge – know about the concept of anticipatory care planning. Skills – recognise when it may be appropriate to engage with anticipatory care-planning. Domain 5 – Care in the last days of life Knowledge – know that dying is part of life, and that uncertainty surrounds how and when someone may die. Skills – respond in a sensitive and empathic manner to people who are dying, their families and carers. Further examples of mapping HSCS with the PEOLC Framework at informed level

The time to share means so much…. picture

Self-directed support Outcomes Informed Choice: What’s important to me, not what’s important to the service Fundamentals of palliative care: Recognise that palliative and end of life care and support should be centred on what matters to people their families and carers, including babies, children and young people.   Communities Participation: I’m actively contributing to my community and society Loss, grief and bereavement: Know that people may experience a range of losses in a palliative and end of life care context. Relationships Involvement: I’m in control of my life and my supports, not just asked for my opinion Communication and conversations: Engage with people in a way that respects their wishes, confidentiality, choices, unique strengths and abilities.   Mapping self-directed support (SDS) with PEOLC Framework The core PEOLC values and principles align really well with SDS which is not just about the four options, it is about the person and what is important to them. Personalisation / individuals own outcomes!

Promoting Excellence Framework Dementia Informed Practice Level – Across all stages of the dementia journey Outcome People with dementia feel empowered and enabled to exercise rights and choice. Maintain their identity and to be treated with dignity and equity. Knowledge – understand the importance of recognising, enhancing and supporting the strengths and abilities of people with dementia. Skill – interact with people with dementia, their families and carers, in a way that recognises their wishes and priorities. Palliative and End of Life Care Framework Domain 4 – Care planning and delivery Knowledge – Know the importance of ensuring that the person, family and carers have choice and control in care assessment and planning. Skills –Recognise that people with palliative and end of life care needs, their families and carers have strengths and assets that can support their wellbeing. Domain 3 – Loss, grief and bereavement Knowledge – know about the importance of self care. Skills – engage in reflection and activities to care for yourself, and recognise when additional support is required.   Mapping Promoting Excellence Framework with PEOLC Framework - Promoting Excellence Framework is used to support delivery of the Standards of Care for Dementia in Scotland

Care and compassion picture - Keeping ourselves and our colleagues healthy and well too!

Whole group discussion: What do you think we should be doing next? And what we plan to do. Opportunity to have a whole group discussion

Palliative and end of life care awareness session – open badge Today’s attendees are able to work towards achieving a palliative and end of life care awareness open badge. https://www.badges.sssc.uk.com/badges/palliative-and-end-of-life-care-awareness-session/ If you would like to know more about Open Badges please go to the SSSC website https://www.badges.sssc.uk.com/ Link to Palliative and end of life care awareness open badge https://www.badges.sssc.uk.com/badges/palliative-and-end-of-life-care-awareness-session

Open Badges – recognition for your continuous learning Open Badges are digital recognition for otherwise unrecognised learning. You can collect, manage and share them online. You can earn Open Badges from over 3,000 organisations across the world who want to recognise learning in new ways. Search Google for ‘Open Badges’. Evidence of your learning, usually a reflective account, is attached to your Open Badge and visible to anyone you show it to. Open Badges allow you to prove that you understand a subject. They help with post registration training and learning (PRTL). You don’t need to be registered with SSSC to earn most of our Open Badges. Open badge information – before delivering this presentation, please watch the video on the SSSC Learning Zone page https://www.badges.sssc.uk.com/

Head – something I have learned from being part of today Do you feel you have learned something from today? Yes/No If yes, please share what you have learned. Heart - something I've felt/experienced from being here today Has today made a difference to you? Yes/No How? Carrier bag - something I’m going do differently and take away with me from being part of today Do you feel session/resources useful to your role and practice context? Yes/No Please give further information. Proposed evaluation questions Lightbulb - anything I would like to change or that was not so good about being part of today Evidence and learning: How will you share the resources and learning with others?

Scottish Social Services Council (SSSC) email contact sdsandintegration@sssc.uk.com Thank you slide and SSSC email address for any further questions