tayside palliative and end of life care managed care … · network which would bring together...
TRANSCRIPT
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Annual Report
TAYSIDE PALLIATIVE AND END OF LIFE CARE MANAGED CARE NETWORK
November 2017 – October 2018
Wordle created at the MCN Network & Engagement Event 31
st Aug 2018 where delegates were asked:
“What Does Palliative Care Mean To You?”
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“It is our vision that those facing serious illness,
those near the end of life and those who are dying have the care they need, when and where they need
it, and that this care is delivered with compassionate attention in a way that is person-
centred and ensures dignity” (TayPEOLC MCN, 2017)
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Contents
Section Title Page
1. Executive summary
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2. Foreward
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3. Background
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4. Population Profile and Projections
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5. Strategic Context
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6. MCN Aims & Objectives 12
7. MCN Steering Group & Sub Groups 13
8.
Palliative Care for Children & Young People
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9. Quality Improvement & Service Developments in PEOLC 20
10. MCN Education Events
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11. Communication & Engagement
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12. Looking Ahead – Plans for 2019
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13. Appendices
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Section 1 Executive summary
The Tayside Palliative and End of Life Care (TayPEOLC) Managed Care Network (MCN) was launched in October 2017. This followed a Steps to Better Healthcare Palliative Care Project, funded by Macmillan Cancer Support, to review current palliative care provision and identify a sustainable solution for the ongoing delivery of high quality palliative care for the populations of Tayside. The aim of the MCN is to bring together partners from health and social care, the voluntary, academic and independent sector, as well as members of the public, to work in partnership and collaborate to improve palliative and end of life care services. The Network’s remit extends across all settings, whether someone is living at home, in a hospice, a care home, a hospital ward, a prison or is homeless. It connects across the full continuum of need and relates to children’s and adult palliative care irrespective of age, stage, diagnosis or prognosis. The Network has made significant progress in its first year and improvement activity is led by a number of small working groups which have been established by the MCN Steering Group to focus on specific areas of work such as data and audit, research, education and end of life care. This report outlines the breadth of work the Network has been engaged in over the past 12 months and includes quality improvement projects and events, such as the Network & Engagement Event in August 2018 at which delegates had the opportunity to give their views on what could be done to improve palliative and end of life care and what the priorities for the MCN should be going forward. The TayPEOLC MCN will continue to build on this success and the Workplan for 2019-2021 outlines the priorities for the next period. The second Network & Engagement Event on 1st May 2019 provides the opportunity to continue to build strong and sustainable parternerships.
Section 2 Foreword
The palliative and end of life care managed care network is a great example of how health and social care integration can support change for the better. The work going on across multiple sectors in all our communities is evident within this report which is a great platform for the future of palliative care within our region. Palliative care is something the people of Tayside feel passionately about. Those working so hard across Tayside should be proud of this progress and optimistic for a future of continuous improvement with compassion at its core.
Alison Clement, Associate Medical Director, Angus Health and Social Care Partnership/ GP Partner – Network Chair
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Section 3 Background
Palliative and end of life care (PEOLC) is not disease or location-specific. It is relevant to all types of serious, life-limiting illness (including cancer, organ failure and frailty) and it can be provided at any point of an illness ‘journey’. It can also be provided to people in any setting, whether they are living at home, in a hospice, care home, hospital ward, to those who are homeless or living in prison.
3.1 Definitions
‘Palliative care is an approach that improves the quality of life of patients and their families facing the problems associated with life-threatening illness, through the prevention and relief of suffering by means of early identification and impeccable assessment and treatment of pain and other problems, physical, psychosocial and spiritual’ (World Health Organisation (WHO) 2014).
Palliative care for children represents a special, albeit closely-related field to adult palliative care. Palliative care for children and young people with life-limiting or life-threatening conditions is an active and total approach to care, from the point of diagnosis or recognition throughout the child’s life and death. It embraces physical, emotional, social, and spiritual elements, and focuses on enhancement of quality of life for the child/young person and support for the family. It includes the management of distressing symptoms, provision of short breaks, and care through death and bereavement (A Guide to Children’s Palliative Care: Together for Short Lives, 2018).
End of life care addresses the medical, social, emotional, spiritual and accommodation needs of people thought to have less than one year to live. It includes a range of health and social services and disease-specific interventions as well as palliative and hospice care for those with advanced conditions who are nearing the end of life (Strategic Framework for Action, Scottish Government, 2015).
3.2 Steps to Better Healthcare (SBH) Palliative Care Project
The Tayside Palliative & End of Life Care Managed Care Network (TayPEOLC MCN) was
established following a Steps to Better Healthcare (SBH) Palliative Care Project (Dec 2014 - Feb 2017), funded by Macmillan Cancer Support and with executive sponsorship of the Chief Executive of NHS Tayside. The purpose of this project was to review current service provision and identify a sustainable solution for the ongoing delivery of high quality palliative care. One of the key objectives of this project had been to establish a Managed Care Network which would bring together colleagues from across health and social care and the voluntary sector to work together to improve the quality of palliative and end of life care for the populations of Tayside. This was supported by the newly established Health and Social Care Partnerships (HSCP) and NHS Tayside.
I The Scottish Government advisory note to Integrated Joint Boards (2018) recognised that
PEOLC needs extend across a broad continuum. There is clear advice to attend to this full continuum – general and specialist - through partnership working that is able to flex across settings, individuals’ needs and variant complexity. The guidance seeks integrated palliative and end of life care to be informed by key stakeholders including generalist PEOLC providers and specialist palliative care services (SPCS). The SBH project described a clear structure to
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enable the right conditions for such partnership working to thrive, linking across Tayside’s three HSCPs, NHS Tayside, Local Authority services and third sector provisions.
T During the lifetime of the SBH project, integration legislation was enacted delegating
responsibility for adult PEOLC to IJBs. In keeping with the Scottish Government advisory note, each HSCP in Tayside has a named lead officer for the full breadth of PEOLC. Each HSCP has taken a different approach to population level PEOLC – in Dundee there is a broad membership Palliative Care Improvement Group, Angus has established a Palliative and End of Life Care Planning Group and Perth & Kinross has linked through HSCP structures and the SPCS service co-ordinator.
The current approach includes each HSCP attending to its responsibility for the provision of
specialist PEOLC for those whose needs exceed the capacity of general health and social care by hosting the Tayside Specialist Palliative Care Service (SPCS) in Dundee HSCP.
The TayPEOLC MCN allows for a structure in which the full breadth of PEOLC can be
understood and connected through the relevant partners and with the lead officers for PEOLC in each IJB being key members of the Steering Group. The interconnection between generalist PEOLC and specialist PEOLC is further built on through the lead officers from each HSCP being part of the Tayside Specialist Palliative Care Service operational meeting and through the broad membership of the MCN Steering Group and subgroups.
These perspectives do not fit a rigid model due to the nature of PEOLC and variance of
individual need in the context of individual settings. However, the above model makes interconnected space for each area of focus to partner locally and/or across Tayside. For example, it is possible to have a specific Dundee, Angus or Perth & Kinross focus, and an SPCS operational focus, with the TayPEOLC MCN providing a partnership structure across these.
3.3 Launch of the TayPEOLC MCN The TayPEOLC MCN was officially launched on 31st October 2017 at an event in Dundee attended by over 200 people, which demonstrated the breadth of work and interest in this area of life and death that affects everyone. The event was attended by a wide range of professionals from health and social care in Tayside and Fife, the care home sector, chaplaincy workers, charitable organisations, education and research, and government. Individuals who had received care from the Tayside Palliative Care Service and members of a public forum who contributed to the development of the network and its vision were also in attendance.
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Health Secretary Shona Robison, who gave the keynote speech at the event said, “We are working to ensure that everyone in Scotland who would benefit from palliative and end of life care has access to it by 2021. The Macmillan Tayside Care Network for Palliative and End of Life Care’s vision for a multiagency managed care network is an exciting and appropriate way to help develop and sustain the services and supports which are crucial to achieving our goal and will provide a helpful model to other health and social care partnerships. It will work across traditional health and social care boundaries to deliver improved person-centred care services, helping people to get the care and support that they need when they need it most.” The establishment of the MCN had wide support from within Tayside and nationally: “We must create the right conditions nationally to support local communities in their planning and delivery of palliative and end of life care services to help ensure that the unique characteristics of each individual are met.” Catherine Calderwood, Chief Medical Officer “This network is long overdue to provide the multifaceted expertise and knowledge to coordinate and oversee the delivery of a meaningful and worthwhile palliative and end of life service.” Sami Shimi, Senior Lecturer and Surgical Consultant, Tayside
“People of all kinds and ages need palliative care. That care is provided in people’s homes and communities, in neonatal units, in medical wards, in hospices and in care homes. It is provided by the NHS, local authorities, the 3rd and independent sectors, by multiple professionals. Straddling this complexity, the Tayside Palliative and End of Life Care Network can join things up and drive improvement.” Mark Hazelwood, Chief Executive, The Scottish
Partnership for Palliative Care
Appendix 1 has further quotes which were provided for the launch event.
Section 4 Population Profile and Projections
In Scotland around 54,000 people die each year, and this number is rising as the population
increases. By 2037 the number of people dying each year will have gone up by 12% to 61,600. It is thought that up to 8 out of 10 people who die have needs that could be met through the provision of palliative care (Strategic Framework for Action on Palliative and End of Life Care, 2015). Death and dying affects everyone at some point in their lives, and the quality of life and supports provided to individuals and their families during periods of life-limiting illness and at the end of life should be at the heart of health and social care service delivery. Ending well is important for everyone as individuals, but it is equally important for those who are bereaved and affected by the death of a loved one.
A study by Clark et al (2010) showed that on a given day there were 10,743 inpatients in 25
Scottish teaching and general hospitals. 28.8% (3,093) of these people died within the subsequent year and 9.3% (1,027) died during that admission. This highlights the importance of ensuring high quality palliative care is provided across different settings, and enhancing communication across transitions of care.
The Scottish Government’s vision as set out in the Strategic Framework for Action on Palliative and End of Life Care (2015) stated that ‘By 2021, everyone in Scotland who needs palliative care will have access to it’. People with life-limiting illness such as cancer and increasingly long-
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term conditions such as circulatory, respiratory and renal disease should all be able to access palliative and end of life care when and wherever they need it.
The following Tayside population projections and demographic information illustrates the ageing
population and level of disease burden in Tayside which will result in an increase in the number of people who will have palliative and end of life care needs.
4.1 Population Projections The population of Tayside is expected to increase by 4.0% over the twenty five years from 2016
to 2041 (based on the NRS 2016 population projections). The predicted increase varies both within Tayside and when further examined by age and gender (Director of Public Health Annual Report 2017/18).
Chart 1- Comparison of the projected population for each of the three local authority areas by age group
4.2 Demographics The estimated population of Tayside on 30th June 2017 was 416,090. The distribution of the
population across Tayside’s three local areas was 116,280 (27.9%) in Angus, 148,710 in Dundee City (35.7%) and 151,100 (36.3%) in Perth & Kinross.
Chart 2 - Age distribution of the population across Tayside
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It is estimated that one in four adults (aged 16+years) report some form of long-term condition (LTC), health problem or disability, and by the age of 65 nearly two-thirds will have developed an LTC such as coronary heart disease (CHD), cancer or chronic obstructive pulmonary disease (COPD). Some of these people will need to be hospitalised at some point (either as an emergency or elective patient) as a result of their LTC.
Chart 3 compares the age standardised rates in 2011/12 and 2017/18 for those Tayside
residents aged less than 75 years who were discharged from hospital with a diagnosis of diabetes mellitus, COPD and CHD. The chart also shows the rate of cancer registrations for the calendar years 2011 and 2016. Dundee City has higher rates than either Angus or Perth & Kinross in all conditions examined.
Chart 3 – Age standardised rates for those aged under 75 years for selected conditions in
Tayside 2011/12 and 2017/18
Cancer and diseases of the circulatory and respiratory systems account for the majority (68.1%)
of premature deaths across Scotland. There is a large variation in mortality rates within Tayside, with Dundee City having above average rates for each of these causes.
All data supplied from the NHS Tayside Director of Public Health’s Annual Report 2017/18.
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Premature (<75 years) mortality by cause of death in Tayside -2017
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Source: NRS
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Section 5 Strategic Context
Scottish Government has published a number of strategic policy documents which have importance for palliative and end of life care service delivery. 5.1 Strategic Framework for Action on Palliative and End of Life Care, Scottish Government (2015) http://www.gov.scot/Topics/Health/Quality-Improvement-Performance/peolc/SFA
Palliative and End of Life Care Aims:
Access to palliative and end of life care is available to all who can benefit from it,
regardless of age, gender, diagnosis, social group or location
People, their families and carers have timely and focussed conversations with
appropriately skilled professionals to plan their care and support towards the end of life,
and to ensure this accords with their needs and preferences
Communities, groups and organisations of many kinds understand the importance to the
well-being of society of good palliative and end of life care
The Scottish Government is also committed to working with stakeholders to deliver on 10 Commitments which are outlined in Appendix 2 of this report.
5.2 Strategic Commissioning of Palliative and End of Life Care by Integration Authorities (2018) www.gov.scot/publications/strategic-commissioning-palliative-end-life-care-integration-authorities/
All Integration Authorities completed their Strategic Commissioning Plans by 1st April 2016. These had a variable focus on palliative and end of life care, which are delegated functions to each Partnership. This advice note (link above) informs future iterations of strategic commissioning plans, and any specific plans developed by Partnerships in respect of palliative and end of life care.
5.3 Achieving Sustainable Quality in Scotland’s Healthcare - A ’20:20’ Vision (Scottish Government, 2011) www2.gov.scot/Topics/Health/Policy/2020-Vision
Our vision is that by 2020 everyone is able to live longer, healthier lives at home, or in a homely setting. We will have a healthcare system where we have integrated health and social care, with a focus on prevention, anticipation and supported self-management. Whatever the setting, care will be provided to the highest standards of quality and safety, with the person at the centre of all decisions’. 5.4 National Clinical Strategy for Scotland (2016) www.gov.scot/publications/national-clinical-strategy-scotland/
This strategy sets out the framework for developing health services across Scotland for the next 15 years. The Strategy makes proposals for how clinical services need to change in order to provide sustainable health and social care services fit for the future, which takes into account the changing demographic composition of our population, the increased demand for health and social care that would follow the advent of Health and Social Care Integration, and significant technological changes in healthcare.
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5.5 Realistic Medicine - The Chief Medical Officer’s Annual Report, 2014-2015 (2016) www2.gov.scot/resource/0049/00492520.pdf
This report describes an approach whereby clinicians can:
Build a personalised approach to care
Change our style to shared decision-making
Reduce unnecessary variation in practice and outcomes
Reduce harm and waste
Manage risk better
Become improvers and innovators
5.6 Practising Realistic Medicine 2015-2016 (2017) www.gov.scot/publications/summary-practising-realistic-medicine/
The Chief Medical Officer's third annual report applies a personalised, patient-centred realistic medicine approach and aims to work in partnership with people through shared decision making. Key elements of this are:
Listening to patients, finding out what matters most to them and helping them make an
informed choice
Addressing over-treatment
Challenging variation in clinical practice
Offering higher value care
5.7 Public Bodies (Joint Working) (Scotland) Act 2014 http://www.legislation.gov.uk/asp/2014/9/contents/enacted
The new arrangements for the integration of health and social care across Scotland to improve care and support for those who use health and social care services came into place in April 2016. They provide an opportunity to progress a partnership approach to the delivery of palliative and end of life care for the populations of Tayside. Each of the Health and Social Care Partnerships in Tayside has delegated responsibility for the provision of community palliative care services to their populations. This provision has been included in the IJB Strategic Commissioning Plans (2016-2021) and support given for the establishment of the MCN to link the partnerships across Tayside. In respect of specialist palliative care services there was agreement that this be hosted by Dundee Health & Social care Partnership on behalf of the other Tayside Integrated Joint Boards (IJB).
Section 6 MCN Aim & Objectives 6.1 Aim The MCN aims to work across traditional boundaries to support the planning and delivery of consistent, equitable, high quality services to meet the needs of patients and their families. It brings individuals and organisations together who wish to see good end of life care and good palliative care accessible to all in Tayside – where and when it is needed. When faced with the reality of deteriorating health, death and bereavement, people of all ages need many and varied
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things from their communities, their families, their friends, the NHS, social care services, charitable organisations and other formal services. The Network remit extends across all settings, whether someone is living at home, in a hospice, in a care home, in a hospital ward, in A&E or in intensive care. It connects across the full continuum of PEOLC need and it relates to children’s and adult palliative care irrespective of age, stage, diagnosis or prognosis. The MCN aims to be accountable at a population and community level. The diagram below illustrates this showing the structure, lines of reporting and accountability for the Network.
Tayside Populations and Communities
Tayside Health and Social Care Partnerships, Local Authorities and NHS Tayside
Tayside Palliative and End of Life Care Network
Wide-broad membership Connected: information, collaboration, education, website, annual meeting
TayPEOLC Network Steering Group
Chair, subgroup leads, PEOLC HSCP leads, children and young people, independent sector , lead nurses, AHP, spiritual care, social care
TayPEOLC Sub Groups
Data & Audit, Education, End of Life Care, Non-Cancer, Pharmacy and Research
6.2 Objectives
Ensure the MCN is guided by the MCN Core Principles (HDL, 2007), the NHSScotland Quality Strategy (2010) and CEL 29 (2012) MCNs: Supporting
and Delivering the Healthcare Quality Strategy
Develop a purposeful, integrated and person-centred approach to audit and data collection which takes cognisance of local, regional and national priorities for improvement and performance review
Support the development of a coordinated approach to the delivery of education and training in palliative and end of life care knowledge and skills
Support and /or undertake high quality palliative and end of life care research and ensure that research knowledge is translated into care settings to improve the quality of care of persons with palliative and end of life care needs
Facilitate development and improvement across all care settings in order to deliver a high quality service which is person-centred, safe and effective
Facilitate integrated and collaborative working between all care sectors and settings and the public to ensure care is delivered in a way which is high quality, holistic and person-centred
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Section 7 MCN Steering Group & Sub-Groups
7.1 MCN Steering Group The Steering Group was established in November 2017 and meets on a quarterly basis to oversee the workplan and coordinate MCN activities, ensuring close integration of the work of the MCN and operational management of services. Moreover it sets the strategic direction for the MCN referring to national policy, regional priorities and evidence-based practice guidelines /standards for palliative and end of life care. Membership of the group (Appendix 3) reflects its function, which seeks to bring people together from health (both primary and secondary care), social care and the voluntary and academic sectors to improve the care of children, young people and adults who have PEOLC needs. A copy of the Workplan for 2019-2021 is shown in Appendix 4.
7.2 MCN Sub-Groups
A number of small working groups have been established by the Steering Group (as outlined in the diagram in Section 6.1) to support service improvement activity focusing on specific areas of palliative and end of life care. Terms of Reference and workplans are in place for each of the subgroups and Quarterly Reports updating on progress within each of the groups are prepared for discussion at the MCN Steering Group meetings. 7.2.1 Data & Audit The Strategic Framework for Action on Palliative Care and End of Life Care includes a commitment to improving data capture and usage. This is linked to the support provided by the Local Information Support Team (LIST) and the use of ‘Source’, which brings together information on health and social care, to assist Partnerships with planning and commissioning locally. Effective support at end of life and investment in supporting people in all settings, but especially at home, can have a beneficial impact on balance of care indicators, the quality of care, and achieving place of death, as well as preventing unwarranted hospital admissions. There are a number of key considerations when planning, designing and commissioning palliative and end of life care, including:
Understanding the mortality rates and patterns for populations within your Partnership
and beyond, and the profile of advanced or long-term conditions that underpin that
Understanding consumption patterns and variation locally, drawing on the person-
linked data, which makes use of routinely-gathered information to systematically
identify opportunities to support and improve people’s pathways of care - so that no
matter which setting a person is in when they are dying, they have the benefit of
effective and high quality PEOLC
(Strategic Commissioning of Palliative and End of Life Care by Integration Authorities, May 2018). Information Services Division (ISD), Tayside Regional Mortality 2016-2017 analyses from existing/available data sets have been produced and reviewed by the Data & Audit Group. This includes:
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Mortality analysis of all expected deaths April 2016 to March 2017
Analysis of patients admitted to hospital in their last week of life
Analysis of patients who spend >10% of the last 6 months of life in hospital
These results will be synthesised into a formal report for wider circulation and regional benchmarking for quality improvement (QI) projects related to PEOLC. Preparation of a recurring annual data report is under discussion with ISD. A Minimum Data Set (MDS) for the Specialist Palliative Care Services (SPCSC) has been implemented. This captures key information about referrals to the service (service activity) and patient characteristics/complexity e.g. Integrated Palliative Care Outcome Scale (IPOS). The Tayside MDS has now been embedded within EMISWeb (except IPOS) and educational initiatives delivered aimed at ensuring reliable data entry by clinical users along with a new user protocol. Reporting structures for the MDS by the Business Unit is to be developed and refined. Implementation of iPOS is underway and is being evaluated through an MSc in Quality improvement. This group meets quarterly and disseminates its work through an Annual Clinical Effectiveness Event - ‘Celebrating Best Practice’ - and MCN Network & Engagement Events.
7.2.2 Education Specialist Palliative Care Services play a key role in the delivery of palliative care education and training to colleagues in health and social care across Tayside. This requires a coordinated approach, and to facilitate this the Tayside Palliative Care Education Group was re-established as part of service developments during the SBH Palliative Care Project. This group now has a wider membership to reflect the MCN approach and, in addition, there is representation from health and social care across the three HSCPs, the University of Dundee and the independent sector. This group meets four times a year and key outcomes for the group include:
Regional work plans devised and reviewed
elearning resource developed and education mapping completed against the NHS
Education for Scotland PEOLC framework – Enriching & improving experience (NES,
SSC, 2017).
Macmillan Foundations in Palliative Care (FIPC) education programme (Dundee) –
remains a priority workstream. Supporting staff training in care homes as part of an
NHS Health Improvement Scotland quality improvement dementia project in Dundee.
FIPC training has been embedded into the core education programme for 2019.
GP Education Events held in Dundee are well attended and evaluated.
Specialist Education Provision – multi professional education sessions delivered.
Bi-annual conference organised by Specialist Palliative Care Services.
Symptom management sessions in palliative care continue to be rolled out across the
localities.
For further information please visit the TayPEOLC MCN Website: http://www.ahspartnership.org.uk/ahsp/taypeolc/palliative-and-end-of-life-care-data-and-audit
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Social care education provision is embedded within the existing education
programme.
GP First 5 Scheme - one post planned in each HSCP in Tayside to build primary care
leadership capacity and knowledge of PEOLC.
Protected Learning Time sessions for Primary Care Teams across Tayside are
contributed to on regular basis via Specialist Palliative Care Services and/or the MCN.
The MCN is also providing guidance and advice as part of a Steering Group for the development of an Enhanced Palliative Care for Generalists course. This will be an educational programme based on the well-established model of a comprehensive, evidenced manual underpinning a two-day interactive course. This course will provide enhanced training in practical palliative care and is aimed at non-specialists in both primary and secondary care.
7.2.3 End of Life Care This group has representation from each of the HSCPs, spiritual care and the independent care home sector in Tayside. Examples of end of life care projects in Tayside include:
• Building on the Best Macmillan project in the acute setting
• Use of the Palliative Care Bundle in the community setting – work is underway
to embed this into Angus and Perth & Kinross HSCP community nursing
• Medical High Dependency Unit EOLC project
• Shared decision-making collaborative project in ENT outpatients
This group has been working to raise awareness with staff about the four principles and guidance within the document Caring for people in the last days and hours of life. (Scottish Government, 2014).
Tests of change underway/being explored:
Just in Case(JIC) medication usage in nursing homes in Angus – to reduce waste and
deterioration of medicines
Oncology ward in Ninewells- to improve the discharge process for patients as regards
the administration of subcutaneous medication after they have returned home
For further information please visit the TayPEOLC MCN Website: http://www.ahspartnership.org.uk/ahsp/taypeolc/palliative-and-end-of-life-care-education
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‘Pop up training for carers’, caring for someone near the end of life - under discussion
Support for registered nurses in nursing homes with education on the use of syringe
drivers and medications used in these, to build knowledge, skills and confidence in
their use
Dundee EOLC@Home partnership model – test of change to enable those in the last
days of life to go home from in-patient care. It also helps to co-ordinate those
providing care through a virtual caseload model
The EOLC group also enables the sharing of learning from projects across different disciplines and provides an external review function for policy documents such as the development of an End of Life Care Policy for A&E and the Policy for the Use of JIC boxes in primary care. 7.2.4 Non-Cancer Palliative & End of Life Care This MCN subgroup held its first meeting in October 2018. There are a wide range of specialities represented on the group including neurology, renal, vascular and respiratory disease, heart failure, specialist palliative care, movement disorders, learning disabilities, frailty and dementia. The purpose of the group is information exchange both within the group and through the wider network. The group will also have the potential to collaborate with others on projects and explore links with the other Tayside MCN subgroups such as Data & Audit and Research. A workshop is planned for 25th February 2019 (‘Perspectives in Palliative Care’) which over 65 delegates have registered to attend. Presentations will be given by each of the specialities and a personal story presented highlighting the lived experience of PEOLC in the non-cancer setting.
7.2.5 Pharmacy The community pharmacy PEOLC network supports individual practitioners to deliver high quality pharmaceutical palliative care to the local population irrespective of care setting. Twenty-seven pharmacies throughout Tayside are network members. Community Pharmacy Palliative Care Pharmacies carry a recommended stock of palliative care medicines. They also provide specialist advice to patients, carers, other community pharmacies and health care professionals as and when required based upon individual patient need. The overall aim is to ensure that people can access palliative care medicines at the appropriate time to enable them to remain in their own home if desired. Network pharmacies are involved in, on average, 1300 episodes of care per annum. A Tayside Annual Palliative Care Update Day for Pharmacists was held on 24th Sept 2018.
For further information please visit the TayPEOLC MCN Website: http://www.ahspartnership.org.uk/ahsp/taypeolc/taypeolc-end-of-life-care
For further information please visit the TayPEOLC MCN Website: http://www.ahspartnership.org.uk/ahsp/taypeolc/taypeolc-non-cancer-palliative-care
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Community and locality pharmacists attended and this was well evaluated. Presentations included PhD research findings from NHS Highland; palliative care experiences of community pharmacy; spinal analgesia; and spiritual care. A further Tayside Annual Palliative Care Update Day for Pharmacy Technicians and Support Staff is due to be held on 27th February 2019. 7.2.6 Research The research group held its first workshop/meeting in May 2018 with the intention of:
Launching the research group as a Community of Practice that supports the generation and translation of knowledge related to PEOLC;
Bringing active/interested people together to talk about PEOLC research; Consider how this network might best support the undertaking of high quality PEOLC
research, and ensure research knowledge is translated into care settings to improve the quality of care of persons with palliative and end of life care needs.
The purpose of this group is to pursue grants (subgroup leads/ collaborators), support early career researchers, teach broad research skills, and establish a Community of Practice. A ‘Sandpit’ event was held in August 2018 which took the form of a discussion forum where creative and innovative thinking was encouraged to explore ideas for potential research proposals. From this, outlines for three research proposals were developed. The group aims to meet quarterly to share success, undertake development work, provide the opportunity for interested colleagues to practice their writing skills and review the workplan. Research Workshops are also planned for 2019 in qualitative and quantitative research methodology, communication skills, and ethics in palliative care research. Exciting developments in PEOLC research in Tayside include:
A research post which is being established at the University of Dundee under Prof.
Judith Sixsmith’s guidance
PhD on Out of Hours contacts in the last year of life by people who have died of
cancer in Tayside
A PhD student has begun their studies in September 2018 working on anticpatory
care planning for people with dementia
Approval for the appointment of a Nurse Consultant in PEOLC for Tayside with time
allocated for bringing evidence into practice
Masters in public health (palliative care research) with an international student
undertaking a research dissertation related to PEOLC pharmacy
Link with realistic medicine and plans to undertake research into this through lived
experience
Exploration of other PhD projects related to early palliative care
Grant submission related to lived experience of palliative and end of life care and how
such experience can be shared to support others facing such circumstances
Further information regarding the network is available on the TayPEOLC website: http://www.ahspartnership.org.uk/ahsp/taypeolc/palliative-care-pharmacy-network
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Participation in a trial of long acting opioids for breathlessness
Participation in the PaSO trial to assess if paracetamol adds benefit when receiving
higher dose opioid medications
Section 8 Children’s Palliative Care within NHS Tayside
8.1 Vision Every child or Young Person with a diagnosis of a Life-Limiting Condition (LLC) is recognised as having a life-limiting condition. They will also have access to sustainable, holistic, co–ordinated, person-centred care appropriate to their needs. This includes referral to the children’s palliative care service “A Guide to Children’s Palliative Care” (Together for Short Lives, Fourth Edition 2018). https://www.togetherforshortlives.org.uk/wp-content/uploads/2018/03/TfSL-A-Guide-to-Children%E2%80%99s-Palliative-Care-Fourth-Edition-5.pdf
8.2 Description of Service The children’s palliative care service within NHS Tayside offers practical, emotional, psychological, spiritual, medical and nursing support. At present the service covers oncology and children with complex life limiting conditions:
The oncology service has 3 paediatric consultants with an interest in oncology / haematology / immunology although none of the consultants have dedicated sessions for palliative care. Each is willing to work outwith dedicated time to offer support / advice to attending clinicians within the acute service. Working alongside the consultants is a paediatric oncology outreach nurse, a CLIC Sargent nurse, and a nurse for research and learning development but also with a clinical remit. The area covered is Tayside and North Fife, providing a flexible service to meet the needs of the child. This speciality liaises with OOH, AHPs and district nurses. Psychology (NHS) and social work input are on a part-time basis. Social work is provided via CLIC Sargent, who has very specific caseload criteria. At the palliative and end of life stage families are offered the use of telemedicine facilities, which includes contact with the on-call consultant for the service.
The service for children with complex life-limiting conditions has a lead consultant for children with complex disabilities and a paediatric associate specialist. Both are community-based. Neither has dedicated sessions for palliative care. Each is willing to work outwith dedicated time to offer support / advice to attending clinicians. There are also palliative care/complex needs specialist nurses working in this team which covers Tayside and North Fife. Specialist AHPs from speech and language, occupational therapy and physiotherapy are also an integral part of the MDT, but there is no psychology or palliative social work input. Although the complex needs service does not have an on call service, in the event of an acute and sudden deterioration appropriate staff can be contacted.
The Children’s Community Nursing Service provides input for some of the children with a complex need living in Tayside. There are no dedicated clinicians for this service. Children
For further information please visit the TayPEOLC MCN Website: http://www.ahspartnership.org.uk/ahsp/taypeolc/palliative-and-end-of-life-care-research
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with complex health needs compete with referrals from respiratory, ENT, surgical and renal clinicians. Within the complex needs service children have access to two special needs schools with appropriately trained nurses. The Developmental Centre encompasses early years’ nursery. Here children have access to specialised AHPs formulating individual care plans for the child. The Early Years Nursery also accepts referrals for those children who are palliative. For those children who have complex disabilities and are non mobile, referral to Glenlaw House is discussed. This is staffed 24/7 by paediatric and learning disability nurses and provides palliative care. Both specialities have access to the Spiritual Care Team within NHS Tayside. The service has been involved in two Short Life Working Groups at a national level:
National Guidelines on taking a child home after death
Anticipatory Care Plan for Babies, Children and Young People, which was recently launched and can be down loaded from the Healthcare Improvement Scotland website.
The service also audits both specialities in the use of anticipatory care plans and CYPADM’s (Children and Young People’s Acute Deterioration Management) plan and their respective content.
Section 9 Quality Improvement & Service Developments in PEOLC
9.1 Palliative Care Nursing Appointments, Angus HSCP Angus HSCP has appointed a Senior Nurse for Palliative Care to provide clinical team engagement and a supportive role for the workforce across all care settings, whose remit includes the development of a palliative care plan for Angus. One of the MCN Clinical Leads is a member of the Steering Group for this project. A Macmillan Community Care Project Nurse has also recently commenced in post in Angus to embed integrated palliative care standards into practice across all care sectors. Both postholders are working closely with the MCN and contributing to service improvement work in care homes in Angus as part of the priorities identified by the MCN End of Life Care Group. 9.2 Patient Involvement – Macmillan Day Unit, Arbroath Patients attending the Macmillan Day Care Unit in Arbroath Infirmary were instrumental in helping to develop a book with the author Alec Finlay, around palliative care, which won the Scottish Design Award for Best Publication. The patients there are also currently helping Macmillan design a patient friendly garden for the Day Care Unit. 9.3 Dementia Palliative and End of Life Care Quality Improvement Project, Dundee HSCP Dundee has a high number of people living with dementia. In 2017 there were 2,546 people
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with a diagnosis of dementia (Alzheimer’s Scotland). The Health Improvement Scotland (HIS) Living Well in Communities team, together with the Focus on Dementia Team, are currently working with stakeholders as part of a 23 month project. This project is testing and evaluating Alzheimer Scotland’s Advanced Care Dementia Palliative and End of Life Care Model to identify ways to make improvements in palliative and end of life care for people with dementia. Care homes in Dundee have been identified and the project team is working with, and supporting, staff to embed a palliative care approach. The Macmillan Foundations in Palliative Care Programme has been adopted in this project using a ‘train the trainer’ approach, and care home staff are testing tools which can help identify those who would benefit from a palliative approach to care. This project is just one of six currently running across Scotland. To find out more about this and other projects go to the link below: https://livingwellincommunities.com/tag/palliative-care/
9.4 Palliative Care Education Project, Perth & Kinross HSCP A 23 month palliative care education project is underway which aims to take an integrated and collaborative approach, to support the development of a health and social care services workforce in Perth and Kinross who are knowledgeable and skilled in the provision of palliative and end of life care. This is being led by a speciality doctor and practice educator who have been meeting with stakeholders, and the following project workstreams are underway:
Use of technology to form communities of practice for community nurses and staff in
community hospitals through project ECHO. The aim of this project is to improve care
using video technology for learning and support with the goal of improving decision-
making by collaborative problem solving;
GP/medical education at PLT and lunch & learn events;
• Care home training interventions - currently developing a facilitated approach to
improving palliative care learning and development in two local care homes;
• Joint palliative care training provision for social care, health and care home support
workers. This two-day course based on Macmillan Foundations in Palliative Care will
be open to support workers from all care sectors in 2019.
9.5 Improving Prisoner Healthcare in Tayside
In May 2018 medical, nursing and AHP staff from specialist palliative care services, the Head of Primary Care and Prison Healthcare in Tayside, colleagues from Marie Curie Hospice, Edinburgh and the Scottish Prison Service, came together to explore palliative care in prison from a national and local perspective. Discussions focused on:
• Changing perspectives of prisons in Scotland • Implementation of palliative and end of life care standards across Scottish
Prisons • Palliative medicine and specialist service provision in prison • Prison healthcare in Tayside and in particular palliative and end of life care
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This initial meeting was welcomed as an opportunity to better understand the delivery of prisoner healthcare and specific issues in relation to caring for patients with palliative care needs. A further meeting has been arranged for early 2019 with the governors and healthcare team in HMP Perth Prison and HMP Castle Huntly, the clinical coordinators from specialist palliative care services, NHS Tayside and the TayPEOLC MCN leads. The purpose of this meeting will be to establish closer links and to clarify referral pathways so that the relevant advice and support can be accessed when required. 9.6 Future Transitions in Palliative Care – Care Across the Lifecourse for People with Life-Limiting Conditions, NHS Tayside Patients, carers and staff in Cornhill Macmillan Daycare Services participated in a programme which was led by the Glasgow School of Art and the University of Dundee, in collaboration with partners from CHAS, University of Edinburgh, University of Glasgow, PAMIS, Scottish Transitions Forum – ARC Scotland, NHS Tayside and the Tayside Macmillan Managed Care Network for Palliative and End of Life Care. Funded by the Scottish Universities Insight Institute, the programme explored the future of palliative care for people with life-limiting conditions to build a contextual understanding of care needs and aspirations across the lifespan, and scope future care models that support the development of person-centred care towards Scotland 2030. This focused on positive and preferable destinations of care where the ethos and values of services provide a seamless transition for people with life-limiting conditions, regardless of life stage. Transitions of care are not simply focussed on the person receiving care but also the wider care circles, such as family, friends, volunteers, and practitioners delivering care, as well as policy and decision makers who impact the care experience. The programme involved a series of seminars. This provided the opportunity to share research evidence and experiences from people with life-limiting conditions and their wider circles of care including family, volunteers and practitioners. Knowledge exchange was facilitated by bringing these stakeholders together with policymakers to identify key policy and practice priorities for meaningful future palliative care needs across the lifespan. The aim was to develop ideas for how transitions in palliative care can happen in future. Further information about this programme can be found following the link below: https://futurehealthandwellbeing.org/future-transitions-in-palliative-care/
Section 10 TayPEOLC MCN Events
10.1 MCN Network & Engagement Event The TayPEOLC MCN held its first Network and Engagement Event on 31st August 2018, in the Dalhousie Building, University of Dundee. Over 120 colleagues from across Tayside working in the primary and secondary health care settings, including staff from specialist palliative care services, joined with others working in care homes, social care, the voluntary sector, and from higher education. Members of the public from NHS Tayside Public Partners also joined the event to participate in an interesting and informative afternoon of talks and workshop sessions. The breadth of interest in the event clearly demonstrated the intent of the Network to be collaborative and inclusive, enabling people to work together to support the planning and delivery of high quality services for patients and their families across the region.
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Facilitated discussions provided the opportunity to ask delegates their views on palliative and end of life care which was framed around two questions. Firstly:
“What do you feel you, your community or organisation could do to improve palliative and end of life care in the future”
The discussions were wide ranging and feedback from each of the groups collated. The main themes arising from this included: Delegates were also asked what they felt the key priorities of the MCN should be going forward:
• Communication & person-centred care
• Information • Education • User Voice • Anticipatory Care Planning • Equality • Refererral pathways • Care for the dying at home (including out of hours) • Hospital care • Workforce issues • Integration & co-ordination of care
1. Consistency and good care for everyone
2. Easier access to bereavement support
3. Appropriate referrals/transitions in to
palliative
1. Keep doing what you are already doing!!
2. Let subgroups flourish and disseminate
3. Ensure patient and carer voice throughout.
4. Co-production will be effective
1. Warm collaboration with and within IJBs
2. Aligning local developments with
national digital developments
3. Attending to cultural change and
supporting compassionate communities
approaches
1. Listening Platform
2. Education for all
3. Support for all
1. Communication
2. Spiritual and holistic well being for
carers and professionals
3. Equity of service
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Further delegate comments are included in Appendix 5. This feedback has been reviewed and discussed with members of the MCN Steering Group and incorporated in to the MCN Workplan for 2019-2021. 10.2 Living & Dying with Dementia As part of the Health Improvement Scotland Living Well in Communities Quality Improvement Project, the MCN coordinated an event on 23rd March 2018. The programme included:
An overview of the HIS national work on dementia
Dementia and care homes training and the integrated care home team
Highlights from the Care Inspectorate Report ‘My Life, my care home - the
experiences of people living in care homes in Scotland’
Palliative and End of Life Care for those who have a diagnosis of dementia
‘A Carers Perspective’
Navigating Identity
HIS QI projects national update
Over 60 delegates from health, social care and the voluntary sector attended this education event which received an excellent evaluation.
Section 11 Communication & Engagement
The Network has worked to identify key stakeholders in PEOLC and to build /strengthen relationships across health and social care, the voluntary, independent and academic sectors, and, importantly, people with life- limiting illness, their families and members of the public. MCN stakeholder groups have been outlined in Appendix 6. Attendance at the initial Launch Event in October 2017 and the subsequent Network & Engagement Event in August 2018 illustrates the breadth of membership and connections which have been achieved so far not only within Tayside but also with colleagues across Scotland. Membership of the ‘Network’ currently stands at 370 and this continues to grow. MCN Contacts – March 2019
Other: Primary Care MCNs Pharmacists National Orgs. NHS Fife
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A variety of methods are used to communicate and share information with MCN members and interested groups:
NHS Tayside Intranet through The Low Down and Upcoming Events
Face-to-face at meetings/events/workshops
MCN Website - http://www.ahspartnership.org.uk/ahsp/taypeolc
Twitter - @TayPEOLC (https://twitter.com/taypeolc)
Section 12 Looking Ahead - Plans for 2019
The TayPEOLC MCN has made an excellent start and achieved much in its first year. The MCN Workplan 2019-2021 outlines the priorities going forward and takes into account the feedback from the first MCN Network & Engagement Event. There will be opportunities to link in with new projects and further develop existing connections with projects already underway such as the Dundee Macmillan ICJ (Improving the Cancer Journey) Service. The MCN is keen to engage more closely with local communities including schools. Initial meetings are planned with one of the HSCPs to discuss the concept of Compassionate Communities and how this could be explored and perhaps tested through community engagement in one of the localities. At the first MCN engagement event delegates were asked ‘What does palliative care mean to you? ‘Compassion’ stands out clearly in the responses given. This year’s event will explore what this means in practical terms for us all as individuals, partners, patients, citizens, groups, communities and organisations. It is hoped that this year’s event will attract interest from a wide variety of interested stakeholders including those from the education sector.
The appointment of a Nurse Consultant for Palliative and End of Life Care for Tayside, which will provide a strong strategic and leadership role, is anticipated during 2019. A research element will be embedded within this role. This post holder will also become a co-clinical lead for the MCN.
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Appendix 1: Quotes from the MCN Launch Event Oct 2017: “Why do you support the Tayside Palliative and End of Life Care Network?” “We must create the right conditions nationally to support local communities in their planning and delivery of palliative and end of life care services to help ensure that the unique characteristics of each individual are met.” Catherine Calderwood, Chief Medical Officer “There is so much opportunity to do things differently to help people, families and their communities to ensure people with terminal illness are cared for in the best way for them, as close to their loved ones as possible and with as much support as they need.” Alison Clement, GP and Clinical Director, Angus Health and Social Care Partnership “This network is long overdue to provide the multifaceted expertise and knowledge to coordinate and oversee the delivery of a meaningful and worthwhile palliative and end of life service.” Sami Shimi, Senior Lecturer and Surgical Consultant, Tayside “People of all kinds and ages need palliative care. That care is provided in people’s homes and communities, in neonatal units, in medical wards, in hospices and in care homes. It is provided by the NHS, local authorities, the 3
rd and independent sectors, by multiple professionals. Straddling this
complexity, the Tayside Palliative and End of Life Care Network can join things up and drive improvement.” Mark Hazelwood, Chief Executive, The Scottish Partnership for Palliative Care “To widen the ‘net’ of what ‘works’!” Michelle Church, Improvement Advisor, HIS “Team working, shared learning, research and expertise, quality improvement, funding, strategic planning, whole system – all contribute to better person-centred care.” Michelle Watts, Associate Medical Director, Primary Care, Tayside “The provision of excellent palliative care requires a collective response, where health and social care and the voluntary sector work together to deliver that care. The Tayside Palliative Care Network can work as a catalyst to help these different groups achieve this goal.” Paul Baughan, GP and National Clinical Lead “To ensure best practice is strived for and shared throughout Tayside to ensure all people have access to the best possible palliative and end of life care.” Gill Reilly, Community Nurse Manager, Dundee “Better together, blether together.” David Stewart, GP, Angus “I am passionate about palliative care and I believe that this is a fantastic opportunity for collaborative, integrated working across Tayside to ensure the highest quality of service delivery for those who need it in the future.” Katharine Thompson, Consultant in Palliative Care, Angus and Dundee “To ensure that the best possible evidence is available to secure effective services which take into account all aspects of the dying process so that people are supported in a dedicated tailored 24 hour network of services.” Judith Sixsmith, Professor of Health-Related Research, University of Dundee
Section 13 Appendices
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Appendix 2: Strategic Framework for Action on Palliative and End of Life Care (2015) Commitments The Scottish Government commits to working with stakeholders 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. 9. Support improvements in the collection, analysis, interpretation and dissemination of
data and evidence relating to need, 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.
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Appendix 3: TayPEOLC MCN Steering Group Membership Name Job Title Role
Karen Anderson AHP Director, NHS Tayside Group member
Lindsay Baillie South Locality Manager, Perth & Kinross HSCP
Co-chair
Deborah Baldie Senior Nurse, Practice Development Research, NHS Tayside
Group member (MCN Research Subgroup Lead)
Fiona Barnett Clinical Co-ordinator for SPCS, Dundee HSCP
Group member
Jill Buchan Dundee Local Integration lead (Independent Sector), Scottish Care (Dundee HSCP)
Group member
Deans Buchanan Consultant in Palliative Medicine/Lead Clinician, NHS Tayside
Group member (MCN Co-Lead/HPCT rep)
Elinor Brabin Consultant in Palliative Medicine, Roxburghe House, Dundee
Group member (MCN Data & Audit Subgroup Lead)
Pat Carracher Medical Director, CHAS Group member
Elaine Colville Senior Nurse for Palliative Care, Angus HSCP
Group member
Judith Crawford Partnership Quality Lead, Macmillan Cancer Support
Group member
Carole Fraser Community Learning Disabilities Nurse, NHS Tayside
Group member
Diane Fraser Head of Community Care, Perth & Kinross HSCP
Group member
Alan Gibbon
Senior Chaplain, Professional Lead: Person-centred Care, Spiritual Care, NHS Tayside
Group member
Buddhi Gunaratne Consultant Paediatrician, NHS Tayside Group member
Beth Hamilton Locality Manager, Dundee HSCP Group member
Jenny Hill Locality Manager, Dundee HSCP Group member
Lesley Howells Maggie’s Research Lead (UK)/Lead Consultant Clinical psychologist (Scotland), Centre Head
Group member (MCN Research Subgroup Lead)
Shirley Kelly Macmillan Lead Palliative Care Pharmacist, NHS Tayside
Chair (MCN Pharmacy Subgroup Lead)
Diane McCulloch Head of Community Care (Operational Services), Dundee HSCP
Group member
Kirsty McQuarrie
Clinical Co-ordinator for SPCS, Perth & Kinross HSCP
Group member
Sarah Mills General Practitioner/Academic Fellow, University of Dundee
Group member (MCN Research Subgroup Lead)
Sandra Gourlay
Karen Fletcher
Lead Nurse, Perth & Kinross HSCP
Lead Nurse, Angus HSCP
Group member (on a rotational basis)
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Wendy Reid Lead Nurse, Dundee HSCP
Iona Philp
Valerie Riddle
Palliative & End of Life Care MCN Manager Senior Practitioner/Acting Team Leader, Perth & Kinross Council
Group member
Group member
Jillian Richmond Service Manager, Older Peoples Services, Angus HSCP
Group member
Jean Sargeant Partnership Manager for the North, Macmillan Cancer Support
Group member
Judith Sixsmith Professor of Health-Related Research, University of Dundee
Group member (MCN Research Subgroup Lead)
Libby Smith
Macmillan Palliative Care Practice Educator, NHS Tayside
Group member (MCN Education Subgroup Lead)
Gill Tomison Palliative Advanced Nurse Practitioner, Cornhill Macmillan Centre, NHS Tayside
Group member (MCN EOLC Subgroup Lead)
Abigail Walton Consultant in Palliative Care, Cornhill Macmillan Centre, NHS Tayside
Group member (MCN Education Subgroup Lead)
Lynsey Webster Senior Officer – Strategy, Performance & Support Services, Dundee HSCP
Group member (MCN Data & Audit Subgroup Lead)
Susan Whyte Primary Care Macmillan Lead GP, NHS Tayside
Group member (MCN Co-Lead/ EOLC Subgroup Lead)
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Appendix 4: TayPEOLC MCN Workplan 2019-2021
Tayside Macmillan Palliative and End of Life Care Managed Care Network
WORKPLAN 2019-2021
‘It is our vision that the Tayside Palliative and End of Life Care Network will work in partnership with and for those who are facing serious illness, those who are near the end of life and those who are dying so that they have the care they need, when and where they need it.’
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Aim
The aim of the Palliative and End of Life Care (PEOLC) MCN Steering Group is to work together across traditional boundaries to support the planning and delivery of consistent, equitable, high quality services to meet the needs of patients and their families in Tayside. The MCN spans palliative and end of life care of all types and across all settings including the person’s own home, community hospitals and care homes, the acute setting and hospices.
Remit
The MCN Steering Group will be responsible for overseeing the workplan and coordination of the MCN, ensuring close integration of the work of the MCN and operational management of services. The MCN Steering Group will set the strategic direction for the MCN referring to national policy and regional priorities, and evidence best-practice guidelines /standards for palliative and end of life care.
Objectives
Quality Assurance and Governance – Ensure the MCN is guided by the MCN Core Principles (HDL, 2007), the NHSScotland Quality Strategy (2010) and CEL 29 (2012) MCNs: Supporting and Delivering the Healthcare Quality Strategy
Data Collection & Audit – Develop a purposeful and integrated approach to audit and data collection, with cognisance of local, regional and national priorities for improvement and performance review
End of Life Care – Support improvements in people’s experience of their or their loved ones’ last hours, days or weeks of life
Non-Cancer Palliative Care – Support improvements in the quality of palliative and end of life care for people with non-malignant disease and their families
Pharmacy - Support individual practitioners to deliver high quality pharmaceutical palliative care to the local population irrespective of care setting
Research – Undertake high quality palliative and end of life care research and ensure that research knowledge is translated into care settings to improve the quality of care of persons with palliative and end of life care needs
Training and Education – Support the development of a coordinated approach to the delivery of education and training in palliative and end of life care knowledge and skills
Quality Improvement – Facilitate service development and improvement across all care settings in order to deliver a high quality service which is person-centred, safe and effective
Communication and Engagement – Facilitate integrated and collaborative working between all care sectors and settings and the public to ensure services are delivered in a way which are high quality, holistic and person-centred
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The TayPEOLC MCN held its first Network & Engagement Event on 31st August 2018. Delegates from health and social care, the independent, voluntary and academic sectors as well as members of the public attended the event. Feedback from the discussion sessions was captured and the key themes arising from these included:
Communication & Person Centred Care
Information Sharing
Education
User Involvement
Anticipatory Care Planning
Equality (issues around equality focused on hard to reach groups)
Referral Pathways
Care of the Dying at Home (including Out of Hours)
Hospital (issues raised around the need for more personalised care)
Workforce (more support and value for frontline staff delivering care)
Transitions (enabling transitions to palliative and end of life care)
Integration & Coordination of Care These themes have been considered by each of the MCN sub groups and were included in their workplans. This Workplan will be reviewed and updated in March 2020
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1. Quality Assurance & Governance
Outcome Actions and Deliverables Outputs Timeframe Lead
The Tayside MCN for Palliative and End of Life Care can demonstrate its effectiveness in delivering high quality services to meet the needs of people living in Tayside.
PEOLC MCN Steering Group established
Meetings Terms of Reference Minutes
Quarterly MCN Steering Group Chair/Co-chair/MCN Manager
Networking & Engagement across the wider MCN membership
Event Annual HSCP Clinical Director (Angus 2018-2020). Rotated thereafter between other 2 Clinical Directors in P&K and Dundee HSCP
Subgroups are established as required to drive forward the key priorities of the MCN
Meetings Terms of Reference Minutes Reports Workshops
Quarterly
Subgroups Leads
Progress against the workplan is outlined in Annual Reports for R2 Groups in the HSCPs and Macmillan.
Report Annual MCN Manager/ Clinical Leads/ Network Chair
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2. Data Collection & Audit
Outcome Actions and Deliverables Outputs Timeframe Lead
Robust collaborative relationships are established with the Integrated HSCPs. Data collection approaches capture the quality of PEOLC across Tayside. Implementation of a Tayside Specialist Palliative Care Minimum Data Set (MDS). The group will act as an information sharing hub for palliative care related audit, enabling collaboration and dissemination of work.
Data & Audit Group established Meetings Terms of Reference Minutes
Quarterly Elinor Brabin Clare Harper (for Lynsey Webster) Local Intelligence Support Team (Angus, Dundee, Perth & Kinross)- Stephen Halcrow
Tayside Regional Mortality Analysis 2016-2017
Mortality analysis of all expected deaths April 16 to March 17
Analysis of patients admitted to hospital in last week of life Analysis of patients who spend
>10% of last 6 months of life in
hospital
Written report to be disseminated by February 2019 for 2016/17 data. Recurring annual data report under discussion with ISD. This work is linked to the national framework and work through the Scottish Partnership for Palliative Care, Scottish Government, ISD and HIS directly.
ISD analyses from existing/available data sets have been produced and reviewed by Data/Audit Subgroup. Results to be synthesised into formal report for wider circulation and regional benchmarking for QI projects related to PEOLC.
Complete Agreement reached with ISD colleagues to repeat this report (April 2019) with the aim of producing this annually.
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Tayside SPCS MDS captures key information about referrals to Tayside SPCS (service activity) and patient characteristics/complexity eg Integrated Palliative Care Outcome Scale
Dissemination of annual data report/summary from business unit to specialist palliative care clinical areas: reports to be broken down by care setting and locality. Tayside MDS embedded within EMISWeb, including IPOS. Evaluation of this to be undertaken by quality improvement student. Educational initiatives aimed at ensuring reliable data entry into EMISWeb by clinical users; user protocol developed and being disseminated. Needs further testing to ensure data retrieval is reliable and accurate. Reporting structures for MDS by Business Unit to be developed and refined.
Ongoing Completed Feb 2019 Launched Nov 2018 Ongoing
Elinor Brabin
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Disseminate work relating to PEOLC Audit/QI with MCN network and other stakeholders
Annual Clinical Effectiveness Event ‘Celebrating Best Practice’ MCN Steering Group Meetings
2019 Date TBC Quarterly
3. End of Life Care
Outcome Actions and Deliverables Outputs Timeframe Lead
People’s experience of their or their loved ones’ last hours, days or weeks of life are improved wherever they are cared for.
End of Life Care Group established. Close integration and partnership working is established with colleagues across all care sectors.
Meetings Terms of Reference Minutes
Quarterly Sue Whyte/ Gill Tomison (until March 2019)
Colleagues in Angus HSCP are currently undertaking work to reduce medicine waste in care homes. The current system for the provision of ‘just in case’ medicines has been identified as a potential source of this waste. Colleagues are keen to look at ways to minimise this waste. Test of Change agreed in South Grange Nursing Home - total of 20 JICB scripts/ patients will be looked at using an audit template. Locality pharmacist will look at dual prescription numbers of scripts and look at Tamperproof envelopes.
SBAR created as a result and sub group agreed to support a baseline Audit if to be carried out in South Grange Nursing Home. Members of EOLC sub group meeting with Angus HSCP Community Care Project Nurse & Locality Clinical Pharmacist to discuss. Meeting arranged with South Grange Nursing Home manager and those involved in
Ongoing 28
th Jan 2019
29
th Jan 2019
Sue Whyte/ Gill Tomison/ Shirley Kelly Marion Gaffney/ Elaine Colville/ Caitlin Macrae/ Sue Whyte
36
GP Macmillan Lead will contact MHC re audit and 2 other homes in the area to ask about their JICB Policies re
checking of controlled drugs.
Test of Change. First Audit Cycle to be completed by end of March 2019
Raising the profile of the four principles and guidance within the document Caring for people in the last days and hours of life (Scottish Government, 2014)
Mentioned as part of presentation at MCN network & Engagement Event and at two education days with nursing staff in Cornhill to raise awareness.
Ongoing EOLC Group
Test of Change – ‘Carer Support’ – delivered once a week for 6 weeks. Purpose is to deliver education, support and signposting to enable the carers to continue in their caring role.
Minutes from EoLC sub group minutes. Evaluation report
Commenced April 2019
Day Care Service Angus HSCP
EoL sub group has been asked to become the policy group for the current policy review of ‘Facilitating Anticipatory Care At The End of Life - Policy For The Use Of ‘Just In Case’ Boxes In Primary Care’
Policy has been circulated amongst members to review and comment re any major/minor changes needed
Ongoing EOLC Group/ Shirley Kelly
37
Raising awareness amongst care homes throughout Tayside that Qualified Nursing staff can access the McKinley Syringe Driver Education on-line and that they can access syringe driver education available from Tayside Specialist Palliative Care Service
Details available on the Tayside Palliative Care Education Programme
Ongoing
EOLC Group/ Palliative Care Practice Educator
Trying to improve the discharge prescription process of patients from the acute sector, who leave with a syringe driver insitu
SBAR created and subgroup agreed to support the work of a pilot project currently being undertaken in Ward 32, Ninewells Hospital, looking at processes involved in discharging patients home with a syringe driver and whether community prescriptions follow the patient home.
Early stages EOLC Group Leads/ nursing staff Ward 32/ Shirley Kelly
38
4. Non-Cancer Palliative Care
Outcome Actions and Deliverables Outputs Timeframe Lead
The quality of palliative & end of life care for people with non-malignant disease and their families will be improved. Members of the group and the wider network will be able to participate in information exchange and to increase their knowledge and understanding of the care of people with conditions other than cancer.
Non-Cancer Palliative Care Group established
Meetings Terms of Reference Minutes Workshops
As agreed Sarah Cathcart Gillian Craig Claire Douglas
Hold workshop – ‘Perspectives in Palliative Care’ - to share examples of case studies from each of the specialities represented on the group and discuss issues arising with the wider group. Service user involvement provides the opportunity to hear first hand and learn from their experiences of care and consider areas for improvement.
Workshop Evaluation
25/2/19 Sarah Cathcart Gillian Craig Claire Douglas MCN Manager
39
5. Pharmacy
Outcome Actions and Deliverables Outputs Timeframe Lead
Practitioners are supported to deliver high quality pharmaceutical palliative care to the local population across all care settings.
Pharmacy Group established Meetings Terms of Reference Minutes Events Reports
Annual Shirley Kelly
Promote and encourage attendance at TayPEOLC MCN and other relevant events to increase knowledge, understanding and skills.
Attendance and evaluation.
Ongoing Shirley Kelly
Deliver Annual Palliative Care Update Day for Pharmacists
Attendance & evaluation
Ongoing. Next scheduled event 11
th November 2019
Shirley Kelly
Deliver Tayside Annual Palliative care Update Day for Pharmacy Technicians and support staff
Attendance and evaluation
Ongoing. Next scheduled event 27
th February 2019
Teresa Souter
Tayside Community Pharmacy Palliative Care Network (TCPPCN)
Explore user satisfaction with the service offered by TCPPCN
Report & action plan April 2020 Shirley Kelly
Offer support and guidance to all TCPPCN members.
Annual one to one contact made with all TCPPCN members
Ongoing Shirley Kelly
Review list of core medicines held by TCPPCN members in conjunction with TayPEOLC MCN EOLC Sub Group
List updated and details made widely available
September 2019 Shirley Kelly
Review & update promotional materials for TCPPCN held on TayPEOLC MCN website and Staffnet
Reviewed materials available to all relevant parties
September 2019 Shirley Kelly
40
6. Research
Outcome Actions and Deliverables Outputs Timeframe Lead
Research knowledge is generated, analysed and translated into real world settings to improve the quality of care of persons with PEOLC needs and the quality of life for carers/family and enable a good death for those at the end of life.
Research group established Meetings Terms of Reference Minutes
Quarterly Debbie Baldie Sarah Mills Judith Sixsmith
Facilitate development events to enhance the amount and quality of research activity and to support grant submissions.
Sandpit Event held to encourage creative and innovative thinking and explore ideas for potential research proposals. Develop research grants for 2 key ideas:
Digital storytelling
Compassionate
communities and
quality of care, of life
and of death
Hold 4 writing workshops per year – for grants, papers and conference papers. Hold 3 workshops per year relating to conducting research in PEOLC. Developing the group as a supportive network that grows world class research.
13th August 2018
November 2019
Quarterly throughout 2019 20
th Feb/8
th May/23
rd
Oct 2019
Quarterly meetings and associated workshops
Debbie Baldie Judith Sixsmith Sara Mills
41
Preparing Wellcome Trust Grant application Developed partnership for
Wellcome Trust Grant
Application.
Completed public engagement
for Wellcome Trust Grant
Grant submitted 11th Jan 2019
Submission to Wellcome Trust in January 2019- completed
Debbie Baldie Judith Sixsmith
Preparing Global Challenges grant
application on quality of life, of care and of
death in LMICs
Beginning partnership building
Debbie Baldie Judith Sixsmith
Dissemination and knowledge mobilization
2 Palliative and End of Life
care articles submitted
concerning night-based care at
home: one on costs of care,
the other on impact of care re.
hospitalisations
Poster accepted for Scottish
Partnership for Palliative Care:
Annual Conference,
Wednesday 28 November
2018, led by Tharin Phenwan,
on ‘Raising Death Awareness
in Thailand, the Case of Life
Unlocking Card Game’
Article in preparation on quality
of PEOLC in Nigeria.
Article in preparation:
Canadian care aides
experience of PEOLC in long-
Awaiting reviewer responses Delivered Judith Sixsmith with David Agom Judith Sixsmith with Laura Booi
Debbie Baldie Judith Sixsmith
42
term care facilities.
Grant submissions- ESRC grant outline
application submitted
Application submitted - not
successful
16th October 2018
Judith Sixsmtih Deans Buchanan
Projects
Finalising Scottish Universities
Insight Institute research on
transitions in palliative and end of life
care
Ongoing project: Care of the frail older person in diverse settings (Antonia Lannie)
Ongoing: an evaluation (with Lynn
Griffin) of the End of Life Care
Exhibitions aimed at raising
awareness of death and dying with
nursing students at Dundee
University, collected data and begun
analysis.
Begun analysis of the evaluation
data from the End of Life Care Public
Exhibitions aimed at raising
awareness of death and dying with
Palliative Care Scotland
Postgraduate work
New PhD student Tharin Phenwan
from Thailand, began studies in
September 2018 at the University of
Dundee in the School of Nursing and
Health Sciences. This is a 3 year full-
time qualitative project on ACP for
Development of the PEOLC Research membership and research projects Stage 1 application for Abbeyfield Society for studentship to fund this research.
Ongoing Submitted Jan 2019- awaiting outcome
Judith Sixsmith Debbie Baldie Judith Sixsmtih Deans Buchanan
43
people with dementia across Tayside
(Supervisors JS, LMc and DB)
Northampton PhD student finalising
thesis on palliative care in Nigeria
(Supervisor: JS)
Canadian student on care aide
experiences including PEOLC in long
term facilities
New Appointments:
School of Nursing and Health Sciences,
University of Dundee – Research Fellow with
a strong background in PEOLC. Research
will focus on placemaking and technology for
older people.
Nurse Consultant for Palliative & End of Life
Care, for Tayside to provide strategic
direction and leadership for PEOLC working
across professional and organisational
boundaries to develop excellence in care.
Thesis submitted. Awaiting viva. Thesis submitted. Viva completed. Successful outcome. Funding applications & publications Strategic nurse leadership in PEOLC across all care settings in Tayside
Nigerian project will be submitted in January 2019 Completed. Appointment to begin March 2019 Recruitment process to be confirmed
44
7. Training and Education
Outcome Actions and Deliverables
Outputs Timeframe Lead
Staff working across health and social care have the appropriate knowledge and skills and feel confident to deliver high quality care to patients with palliative and end of life care needs
Tayside: MCN Education Group
Meetings Terms of Reference Minutes Training programmes Reports Regional work plans E- learning resource Education mapping against framework (NES, SSSC 2017)
Ongoing Libby Smith Abigail Walton
Tayside: Core Education Programme 2019 programme advertised across the regions
Annual Programme Aug 2019 review
Libby Smith
Tayside: Bi Annual Conference Chosen Topic “Community Palliative Care, Wholly Holistic or more to do”.
Conference Date 29
TH August 2019
Fiona Barnett – Chair, Tayside Conference Planning Group
Tayside: Palliative Care Provision - Prisons First Engagement Meeting conducted 14
th Jan Perth Prison
Gail Alan – Macmillan Project Lead for PEOLC prisons
Ongoing 2
nd meeting planned
14th March 2019 – Cornhill
Gail Alan – Macmillan Project Lead for PEOLC prisons MCN links
45
Regional Work streams:
Community Nursing / Community Hospital / Private and Independent Care Providers education provision
GP Events
Education Project Perth & Project Echo (June 2018 - May 2020)
Integrated Response Standards embedding into practice (P&K / Angus ) Already embedded within Dundee.
In- House Specialist Education Provision
Foundations in Palliative Care
Palliative & End of Life Care Plan for AHSCP (completion June 2019).
University Modules
Update embedded
.TayPEOLC MCN - Quarterly Report- Feb 2019.docx
Education Provision diagram.pptx
Priority ongoing work streams
Dundee Libby Smith Perth Dr Abigail Walton Jane Andrew Dr Anne Kelly Angus Elaine Colville - Sharon McFadyen
SBAR has been circulated describing education provision and highlights risks to the sustainability of this current level of education service provision.
Report completed for senior management escalation /
Endowment Funding Bid Completed and submitted (23 month provision)
Beth Hamilton/Libby Smith/Fiona Barnett/Kirsty McQuarrie
46
8. Quality Improvement
Outcome Actions and Deliverables Outputs Timeframe Lead
Formal links established with quality improvement palliative and end of life care projects. Projects are facilitated and supported in partnership with colleagues across the 3 Health & Social Care Partnerships.
Provide advice and guidance to:
NHS Health Improvement Scotland (Living Well in Communities) Quality Improvement Project - Dundee HSCP (focusing on Dementia). Hold education event to raise awareness about this project and generally about providing palliative and end of life care to those with dementia. Explore how best to deliver palliative & end of life care education and training to staff working in care homes with Dundee Local Integration Lead and the Macmillan Palliative Care Practice Educator
Lead Nurse for Palliative Care and Steering Group in the development of a Palliative Care Plan for Angus HSCP
National Steering Group developing an Enhanced Adult Palliative Care for the Generalist course
Meetings Event Palliative Care Plan (Angus HSCP) Meetings
Quarterly Project ends Nov 2019 23
rd March 2018
To be completed by June 2019 2018-2019
Jenny Hill/ Cesar Rodriguez/ Hilary Provan Deans Buchanan/ Iona Philp Deans Buchahan Deans Buchanan/ Iona Philp
Explore the concept of developing Compassionate Communities within a Health & Social Care Partnership locality. Discuss initially with colleagues in Perth & Kinross HSCP to gauge interest, identify what already exists in that locality and engage with the public to ask if this would be something of interest to develop and if so how they would wish to do that.
Possibility of undertaking a test of change in a locality in South West Perthshire. Meeting planned with council colleagues and the volunteer coordinator from Cornhill Macmillan Centre, PRI
12
th February 2019
Iona Philp
47
Link in with project coordinator in a quality improvement project to scope and improve awareness about support which is available within local communities across Tayside for people with palliative care needs.
A directory of services and community support to be available to people with palliative care needs will be developed by Marie Curie
Project commences March 2019 for 2-3 years
MCN Manager/MCN Leads
Facilitate a test of change in Dundee HSCP (EOLC@Home in Dundee) using a partnership approach with Marie Curie nursing to a fast track discharge model for community-based end of life care for someone in their last week/weeks of life and who wishes to die at home and who requires additional support.
Initial meeting with Marie Curie Nursing Team Leader. SBAR developed to describe the proposal to establish a ‘virtual ward- type structure’ and has been shared with key stakeholders and agreement reached to proceed.
Plans to commence pilot week beginning 4
th
February 2019
Locality Manager & Community Nurse Manager, Dundee HSCP/Marie Curie Nursing Team Leader/MCN Lead
Development of the Safer Prescribing of Opioids Tool (SPOT). This is an opioid conversion tool, using Scottish prescribing guidelines, in website, non-native app format.
App developed which is designed to aid clinicians in prescribing opioids, to inform, educate, and to reduce prescribing error in primary, secondary and tertiary care in palliative and end of life care settings.
Looking to test the developed app in 2 or more board areas Linking to Realistic Medicine
Professionals in Tayside from primary care, palliative care and other specialities have contributed to the development of this tool. Realistic Medicine now linked Discussions with NSS and Scottish PEOLC Guidelines group
48
BOBSCOT project –Tayside has participated in this project (AMU and the GI unit, Ninewells Hospital) Other project sites include Edinburgh (REI) and Paisley. (RAH)
Project focuses on shared decision making in the acute care setting.
Paper 1a - BotB
Poster for SPPC conference (2).pdf
Phase 1 completed and reported Will be part of workshop at NHS Scotland event Phase 2 funding and agreed in principle Developing plan and linking to Marie Curie, PATCH, Macmillan, SPPC acute workshop outcomes
Deans Buchanan
49
9. Communication and Engagement
Outcome Actions and Deliverables Outputs Timeframe Lead
The MCN enables integrated and collaborative working across all care sectors and settings, including members of the public and patients and carers to ensure that services are high quality, holistic and person-centred.
Develop and maintain a website to share information about the MCN and information relating to Palliative and End of Life Care locally, regionally and nationally
Website Ongoing Iona Philp/ Sharon McCabe
Prepare MCN updates and reports for dissemination widely through the NHS Tayside Intranet and to wider Network by email
Newsletters/reports Ongoing Iona Philp
Establish links with other related groups eg. Respiratory MCN, colleagues in Primary Care, to share information and identify/undertake joint pieces of work
Meetings Ongoing MCN Manager/ MCN Leads
MCN Network & Engagement Event Compassion in Practice’
Evaluation Report
Annually 1
st May 2019
MCN Manager/ MCN Leads
Co-ordinate Education Events eg. OOHs, Learning Disabilities, Dementia
Evaluation As Required MCN Manager/ MCN Leads
Twitter account set up to share information about the MCN and more generally in relation to items/events of interest
Tweets Ongoing Deans Buchanan
Establish links and identify clear referral pathways with healthcare colleagues in HMPs Perth and Castle Huntly
Meetings 14th January 2019
14th March 2019
MCN Manager/ MCN Leads
50
Appendix 5: TayPEOLC Priorities (MCN Network & Engagement Event 31/8/18)
1. Communication 2. ACP 3. User voice
1. Enabling PPC/PPD choice
2. Support and education for all
partners
3. Improved support and
education around
medicine use and safety
1. IT systems, fluid transfer of info.
communication
2. Children & Young People (transitions, complexity) 3. Co-ordination of care (key/lead care) 4. Education esp. primary care as current GP model is changing (ANP, CN, other
providers)
1. Public health
2. Patient journey
3. Information
sharing
1. Education – public and professionals. PEOLC is
still often not talked about until its needed
2. Social care workers being better supported,
paid
3. Appropriate and timely cascading of
information ie. eHealth improvements, across
areas
1. Transferring learning from malignant
to non-malignant disease.
2. Optimise communication at every
stage before fear sets in.
3. Timely referral
1. Communication and data sharing across
the system
2. Support person-centred care planning
and planning ahead conversations
3. Straight forward honest sensitive
communications
4. An open conversation about dying
including assisted dying
1. Ethos of support and collaborative approach towards staff 2. More personalised ACPs (less tick box) 3. Geographical alignment of teams to promote personalised care
1. Information
2. Sharing
3. Engagement
4. Focus
1. Communication in all formats to be
clear and accessible
2. MCN to have influence nationally and
locally re. importance of ACP and
issues relating to costs of POA
3. Education for all
1. Integration at community level that links
health and social care at all levels
2. Identifying what we don’t know about
health and social care perspectives and
processes
3. Building a directory of who’s who, how
can we do this?
1. Education across all disciplines
2. Equity across all diagnoses
3. Resource and information
management
1. MDT notes accessible to all
2. Seamless transitions and data driving
redesign will help real choice
3. Consistent standards of education
across region
51
Appendix 6: TayPEOLC MCN Stakeholder Groups
Public Health It takes a village MCN Charter Compassionate communities Awareness of PEOLC
Chldren & Young People Teenage Cancer Trust CHAS
Hospital Based Perth Royal Infirmary Ninewells Hospital Stracathro Hospital Community Hospitals
Voluntary Sector Marie Curie Macmillan Cancer Support Alzheimer Scotland CHAS Voluntary Action (Angus/Dundee); PKAVS PATCH PAMIS MND Scotland Lippencare
Specialist Palliative Care Hospital Palliative Care Teams Macmillan CNS Day Care/Symptom Control Clinics Hospices – Cornhill/Roxburghe House
Communities Community Planning Partnerships Churches/Faith Groups
Academic Health Science Partnership
Workplace
Information & Data Information Services Division LIST Analysts HSCPs Data & Performance Leads NHS Tayside Business Unit
Public Engagement NHS Tayside Public Partners
PATIENT/FAMILIES/CARERS
Schools
National Links – Scottish Government Health Improvement Scotland NHS Education for Scotland Scottish Partnership for Palliative Care
Health & Wellbeing /Spiritual Care Chaplaincy Bereavement Support
Higher Education Institutions University of Dundee University of Glasgow University of Edinburgh Glasgow School of Art
Integrated Joint Boards Chief Officers Lead Officers
Health & Social Care Partnerships (Angus/Dundee/Perth & Kinross) Primary Healthcare Teams (including GPs /DNs) Social Work Locality Managers Clinical Directors
Other NHS Health Boards Palliative Care Teams
Independent Sector- Scottish Care (Care Homes)
Medicines- Community Pharmacy (Network) Hospital/Locality Pharmacy
Volunteers