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Palliative Care in Scotland Research Into Practice

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Palliative Care in Scotland Research Into Practice Palliative Care in Scotland Research into Practice Event report: Thursday 11 May 2017 Contents 1. Introduction 2 1.1. About the event 2 1.2. Scottish Government policy 2 1.3. Research and the Strategic Framework for Action on Palliative and End of Life Care 5 2. Palliative care research in Scotland 2006-2015: A scoping review 6 3. Expert insights 10 3.1. Identification and care co-ordination of those who can benefit from palliative and end of life care 11 3.2. Getting services right – care in the community and care homes supporting Integration Authorities with strategic commissioning 15 3.3. Building an education and training evidence base 17 3.4. Examining holistic palliative care for the 0-25 years age group 19 3.5. Support greater public and personal discussion of bereavement, death, dying and care at the end of life 22 4. Themes from discussion 24 5. Links 25 6. References 26 7. Further information 27 Page 1 of 28 1. Introduction 1.1. About the event In 2015, the Scottish Government set out its five year vision to improve palliative care in Scotland in its Strategic Framework for Action on Palliative and End of Life Care 2016-2021. This included a commitment to evidence-based knowledge exchange across Scotland. Researchers from Marie Curie, the University of Edinburgh, NHS Lothian and the University of Glasgow, as part of the new Scottish Palliative and End of Life Care Research Forum, have undertaken a comprehensive scoping review of Scottish palliative care research, published between 2006 and 2015. This has mapped key areas that are relevant to clinical practice, service development and policy. To support the dissemination of the results of this study, and to begin a wider discussion on how this research can inform policy and practice, Marie Curie, the Scottish Government and the Research Forum held a seminar in May 2017. This seminar explored what palliative care research exists in Scotland and how this can help inform and improve the reach and quality of palliative care, as well as decisions on strategy and policy. It also identified gaps in the research and suggested possible future areas of study. The seminar specifically explored how the scoping review’s findings could inform the progress towards meeting some of the ten commitments set out in the Strategic Framework for Action. This short report highlights the key points raised by each of the speakers at the seminar and concludes with a range of recommendations. 1.2. Scottish Government policy The Scottish Government recognises that support and care have a vital role to play in ensuring everyone can enjoy the same human rights – dignity, equality of opportunity and access. Recent policy direction has a common approach grounded in talking to people about what matters to them and involving them in decisions about their own lives. Much of it is intended to help support people to be empowered to make decisions about their own lives, care and support. This empowerment leads to increased confidence and helps people to lead more independent lives. Having greater control of your life and decision making can lead to improved health and wellbeing outcomes, helping people to achieve their aspirations for a happier and more fulfilled life. Some of the key policy areas to support this approach have been highlighted below: The Scottish Government's 2020 Vision is that by 2020 everyone is able to live longer, healthier lives at home, or in a homely setting. Its aims are to have a healthcare system with integrated health and social care, focusing on prevention, anticipation and supported self- management. The integration of health and social care functions from NHS Boards and local authorities came into effect in April 2016. New integration authorities are now responsible for commissioning services to support the needs of their local populations. The Scottish Government believes that integration is about putting people, not services, at the centre of decisions. Realistic Medicine is an approach set out by Scotland’s Chief Medical Officer (CMO), which aims to put the person at the centre of decision-making about their health and care. As part of that its aims are to reduce harm and waste, simplify care, improve innovation, and value and support all health and care professionals to help improve outcomes for people, based on their priorities. The CMO has indicated that she wants all healthcare professionals in Scotland to adopt a personalised approach to their care by 2025. Page 2 of 28 The vast majority of palliative care is delivered in people’s homes and community settings. Last year 87% of a person’s last six months of life was spent at home or in a community setting in Scotland1. Primary care is then often the first point of contact in health care for people, even when palliative. This will also be the case when GP surgeries are closed and people will still need urgent care. A recent Review of Primary Care Out of Hours Services identified a whole system approach to enable safe, sustainable and person-centred care, making sure people are seen by the most appropriate professional to meet their individual needs. The challenge for palliative care is making sure that patients should have extended access to community nursing and advanced nurse practitioner support, with nurses able to verify expected deaths in the community. Anticipatory Care Planning (ACP) is a “thinking ahead” approach to ensure health and care professionals work with people, and their carers, to ensure that the right thing is done at the right time by the right person with the right outcome. It is about having conversations with people about what matters to them, putting people at the centre of the decision-making process about their health and care needs. It helps people make informed choices about how and where they want to be treated and supported and ensures this is communicated to all health and care professionals involved in that care. In its Health and Social Care Delivery Plan, the Scottish Government has committed to ensuring that everyone who needs an anticipatory care plan will receive one by 2021. New National Health and Care Standards now also set out what people should expect when using health, social care or social work services in Scotland. They seek to provide better outcomes for everyone; to ensure that individuals are treated with respect and dignity, and that the basic human rights we are all entitled to are upheld. The Standards are underpinned by five principles; dignity and respect, compassion, be included, responsive care, and support and wellbeing. Self Directed Support (SDS) allows people, their carers and their families to make informed choices on what their support looks like and how it is delivered, making it possible to meet agreed personal outcomes. The Scottish Government’s Strategic Framework for Action on Palliative and End of Life Care is closely aligned with the policy initiatives set out above and aims to bring together acute, secondary and community healthcare, personal and social care to help meet people’s needs and improve outcomes. Its vision is that everyone who needs palliative care in Scotland will receive it by 2021. The framework sets out commitments designed to help achieve this. These commitments are to: 1. Support Healthcare Improvement Scotland in providing Health and Social Care Partnerships with expertise on testing and implementing improvements in the identification and care co- ordination of those who can benefit from palliative and end of life care. 2. Provide strategic commissioning guidance on palliative and end of life care to Health and Social Care Partnerships. 3. Support the development of a new palliative and end of life care educational framework. 4. Support and promote the further development of holistic palliative care for the 0-25 years age group. 5. Support the establishment of the Scottish Research Forum for Palliative and End of Life Care. 6. Support greater public and personal discussion of bereavement, death, dying and care at the end of life, partly through commissioning work to facilitate this. 7. Seek to ensure that future requirements of e-Health systems support the effective sharing of individual end of life/Anticipatory Care Planning conversations. 8. Support clinical and health economic evaluations of palliative and end of life care models. ––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––––– 1 ISD, Percentage of End of Life Spent at Home or in a Community Setting, May 2017 Page 3 of 28 9. Support improvements in the collection, analysis, interpretation and dissemination of data and evidence relating to needs, provision, activity, indicators and outcomes in respect of palliative and end of life care. 10. Establish a new National Implementation Support Group to support the implementation of improvement actions. It is hoped that the framework can help achieve common cross-sectoral approaches to palliative and end of life care, linking the above policy drivers to ensure that health and care services are commissioned around a person’s needs and the focus is on a person-centred approach that leads to better outcomes for people. Page 4 of 28 1.3. Research and the Strategic Framework for Action on Palliative and End of Life Care Shona Robison MSP, Cabinet Secretary for Health and Sport Commitment five of the Strategic Framework for Action is to support the establishment of the Scottish Research Forum for Palliative and End of Life Care. The Forum, established in 2016, is co-chaired by Professor Scott Murray and Professor Bridget Johnston. The cabinet secretary commended the efforts of the Forum and how it has grown and developed into a valuable resource in Scotland since its establishment. She particularly highlighted that the forum has become a place where people can come to learn, collaborate and influence the direction of efforts to improve palliative and end of life care across Scotland.
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