Sharing and Learning Together to Deliver High Quality End of Life Care for All


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Sharing and Learning Together to Deliver High Quality End of Life Care for All

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Tuesday 24 June 2014, Congress Centre, London, WC1B 3LS

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Sharing and Learning Together to Deliver High Quality End of Life Care for All

  1. 1. Sharing and Learning Together to Deliver High Quality End of Life Care for All Tuesday 24th June 2014, Congress Centre, London, WC1B 3LS
  2. 2. Welcome • Housekeeping • Today’s agenda • Evaluation • Surveymonkey
  3. 3. Dr. Bee Wee, National Clinical Director End of Life Care, NHS England Welcome, Overview and National Update
  4. 4. Sharing and learning together to deliver high quality End of Life Care for all: Overview and national update Dr Bee Wee NCD for End of Life Care 24th June 2014
  5. 5. Pre-April 2013 5 Department of Health Commissioners, service providers, voluntary sector, stakeholders, etc. National improvement bodies, e.g. NEoLCP Policies
  6. 6. Looking back • Pre 2008 • 2008 - 2013 6
  7. 7. Identification and assessment QS1 Identification QS2 Communication and information QS3 Assessment, care planning and review Holistic support QS4 Physical and psychological QS5 Social, practical and emotional QS6 Spiritual and religious QS7 Families and carers Access to services QS8 Coordinated care QS9 Urgent care QS10 Specialist palliative care Care in the last days of life QS11 Care in the last days of life Care after death QS12 Care of the body QS13 Verification and certification QS14 Bereavement support Workforce QS15 Training QS16 Planning NICE Quality Standard: End of Life Care for Adults
  8. 8. Since April 2013: national NHS England Public Health England (PHE) Improving outcomes Health Educ. England (HEE) 8 NHSIQ Department of Health Mandates and Outcomes Frameworks
  9. 9. Since April 2013: local 9 CCGs Local authorities Health and wellbeing boards Commissioning Support Units Local Area Teams (27) Clinical Senates Strategic Clinical Networks Healthwatch PHE LETBs
  10. 10. NHS | Presentation to [XXXX Company] | [Type Date]10
  11. 11. Looking back: much achieved but…. • Dying Matters • Electronic palliative care coordinating systems • Transforming acute care in hospitals • National End of Life Care Intelligence Network • Core competencies identified • e-ELCA launched • National survey of bereaved people 11
  12. 12. Much more to do: • Variations across the country • ‘Sharp elbow’ effect • Inequitable access for some groups of people • Inconsistent care ‘out of hours’ • Unreliable communication and coordination 12
  13. 13. 2013 - a momentous year • Radical change to the NHS landscape • new structures • new organisations • new people • new ways of doing things • focus shift to outcomes • Growing financial challenge • Fundamentally challenging reports: Francis, Berwick • More Care Less Pathway (Neuberger) • Blows to public confidence and professional morale 13
  14. 14. Click to add title
  15. 15. What the people we serve want wants…. Person centred coordinated care “My care is planned with people who work together to understand me and my carer(s), put me in control, co- ordinate and deliver services to achieve my best outcomes” Communication Information Decision-makingCare planningTransitions My goals/outcomes Emergencies
  16. 16. What’s on the immediate agenda • Refreshing the Strategy • Making progress on legacy work • Focusing on strategic leadership for commissioning • Working together to improve high quality end of life care for all 16
  17. 17. Refreshing the strategy
  18. 18. Organisational and Clinical Processes Person centred- coordinated care Health and Care Professionals committed to partnership working Informed and engaged patients and carers Commissioning The House of Care describes four key interdependent components that, if implemented together, will achieve patient centred, coordinated service for people living with long term conditions and their carers. House of Care
  19. 19. Pre-April 2013 19 Department of Health Commissioners, service providers, voluntary sector, stakeholders, etc. National improvement bodies, e.g. NEoLCP Policies
  20. 20. NHS England Public Health England (PHE) Improving outcomes Health Educ. England (HEE) 20 NHSIQ
  21. 21. Strategic Clinical Networks Palliative and EoLC Networks
  22. 22. Anita Hayes, Programme Delivery Lead End of Life Care, Mental Health & Dementia, NHS Improving Quality NHS Improving Quality priorities for End of Life Care
  23. 23. Key policy alignment
  24. 24. The Individual and Their Carers Discussions as the End of Life Approaches Assessment, Care Planning and Review Co-ordination of Care Delivery of High Quality Services in Difference Settings Care in the Last Days of Life Care After Death Delivering person-centred care Social Care Spiritual Care Services Support for Carers & Families EPaCCS Transform Programme Facilitators and Champions Networks
  25. 25. Improvement capability and capacity building NHS IQ are helping to: • Embed improvement and change expertise through science, knowledge and skills • Develop the science, knowledge and skills infrastructure available across the NHS • Support the implementation of the Berwick recommendations • Build leadership capability in transformational change and improvement across the commissioning system and primary care.
  26. 26. Living longer lives • Delivering elements of the CVD Outcomes Strategy • Engaging with clinicians and primary care on the five big killers • Supporting the NHS Health Check programme • Improving public awareness of symptoms and early diagnosis of disease. Reducing the number of people who die too soon from illnesses through:
  27. 27. Person Centred Care and Support • Supporting the integrated care pioneers • Transforming end of life care in acute hospitals inc. EPaCCS roll out • Developing LTC improvement resources and Year of Care funding models • Improving care for people with dementia, mental health needs and learning disabilities.
  28. 28. Seven Day Services Supporting the adoption into practice of evidence based seven day services at pace and scale across England: • Supporting and developing new models of delivery • Working with early adopter sites to support learning and enable whole system change • Engaging with users in the designing and influencing the right solutions to meet local health needs.
  29. 29. Experience of care Engineering social change through: • Patient-led improvement to empower and support individuals and communities to get involved • Patient-centred best practice to stimulate, learn, share and spread experience best practice • System improvement to help commissioners and providers to use patient experience as a key driver for service improvement • Project services to enable patient experience to inform and influence national policy design, priorities
  30. 30. Leading transformational change in care delivery system • NHS IQ practical programme to provide commissioners tools and support for large scale challenges • Designed for CCG – free of charge • Learning through practical examples and application of new ideas • Help CCG’s demonstrate competence as part of the CCG assurance process
  31. 31. NHS England Business Plan: Long term conditions, older people and end of life care • improve the care and support for people at the end of their lives by ensuring the commissioning of consistent high quality care across the system; implementing the agreed response to the independent review of the Liverpool Care Pathway • supporting the national roll out of electronic palliative care co-ordination systems and ongoing development of the new palliative care funding system
  32. 32. Supporting people to live and die well Delivering Implementation Support: Engaging communities Person-centred care and support Acute Hospitals Care of the dying Supporting networks Supporting commissioning End of Life Care Programme
  33. 33. End of life Care Programme Key elements: case for change Raising awareness Integrated service delivery Workforce, measurement, research, commissioning Societal level Individual level Infrastructure Theory of change - design - methodology- test- reframe -deliver- sustain
  34. 34. End of Life Care Facilitators and Champions Network
  35. 35. Publications update
  36. 36. #nhsiqeolcare Thank you
  37. 37. Liz Maddocks-Brown, Capability & Faculty Development Manager, NHS Improving Quality and Georgina Earle, Programme Coordinator Building Capability and Maturity in Networks
  38. 38. The Power and Potential of Networks Building capability and maturity –what makes a good network? Liz Maddocks-Brown Senior Network and Faculty Manager Sharing and learning together to deliver high quality End of Life Care for all Tuesday, 24 June 2014
  39. 39. 42 Facilitators and Champions Network Your Great Achievements 2010-2014 Enthusiastic, Skilled, Motivated Workforce Working collaboratively across boundaries Over 600 network members Patients, individuals and their carers have benefited tremendously Highly valued and doing what you set our to do …prompting sharing, expertise , experience, best practice and peer to peer support !
  40. 40. 43 Your feedback from the evaluation “Feeling a part of something bigger that will really make a difference to patient care” “Having the network allows you a safe place to find out what you don’t know!" “Feel more confident in my approach as based on evidence from other areas” “Without the end of life care programme , my life would be lot more difficult , I use the resources endlessly” “I`m not alone, motivating e myself when on my own..I'm not going mad !” “End of life care is all about support , we need to show we can support each other , that’s what we do, what its about” “Encouraged me to think about the wider picture and become to parochial”
  41. 41. 44 The NHS Improvement Challenge is tough The long steep “improvement hill“ A gradient of 5-6% recurrent saving for the next 5-10 years (8.5 Billion public sector cuts ) Drive to maintain and improve quality Rising demand, rising expectations Leaders are looking for ideas on how to upgrade their improvement engines to make it up that hill - Networks are the essential source of energy !
  42. 42. 45 Networks- reaching the parts that organisational structures can`t ! Health and care is a highly social business that depends on the behaviours, skills and relationships of the people that deliver and receive it . Trust , discipline ,energy, commitment , collaboration, equality, judgement .
  43. 43. 46 Why Networks? Power and potential Uniquely positioned; the equal platform to leverage the power of social and professional connections ,free people , create new perspectives “Networks are a powerful way of sharing learning and ideas, building a sense of community and purpose, shaping new solutions to “wicked” problems, tapping into hidden talent, energy and knowledge, and providing space to innovate and embed change.” (Learning report: Leading networks in healthcare- Learning about what works –the theory and the practice 2013 the Health Foundation)
  44. 44. 47 The latest evidence based research What it tells us
  45. 45. 48 Network Types Managed (top-down) Hybrid clinical (explicit clinical outcome focus) Developmental (peer-to-peer formal) Agency (pooling of resources) Learning (communities of practice) Learning(enclave/support) Advocacy(champion and role model) Social Movement(peer-to-peer) MoreStructuredLessStructured
  46. 46. 49 The 5C Wheel Learning report: Leading networks in healthcare- Learning about what works –the theory and the practice 2013 the Health Foundation) Ensuring networks are designed and run at their best Interdependent, interact to power up network success
  47. 47. 50 Case Study Networks
  48. 48. 51 Common Purpose A network’s common purpose should unite members from all professions, roles and organisations. It should create widespread engagement, commitment to quality improvement. It should mobilise hearts, minds, hands!
  49. 49. 52 Co-operative Structure A network establishes a co-operative structure that allows individuals to collaborate safely in a non- hierarchical manner, while being structured and influential enough to get things done. Step 1 – Put in place the right leadership model Step 2 – Consider and identify where the resources will come from Step 3 – Identify key people to be involved Step 4 – Encourage co-creation Step 5 - Coach Members
  50. 50. 53 Building Critical Mass Promoting and accelerating different ways of doing things and getting things done. Combine voices, resources and influence! Step 1 – Create a clear and compelling value proposition Step 2 – Define an effective engagement strategy Step 3 – Leverage the founding mandate or external sponsorship Step 4 – Proactively search for members Step 5 – Cultivate change agents
  51. 51. End of Life Care Facilitators and Champions Network Key: Blue: EoLC Facilitator Red: Social Care Champion Yellow: EoLC Lead Green: APCSW White: EoLC role unknown 600 + membership
  52. 52. 55 Collective Intelligence Networks are able to gather collective intelligence by bringing together data, information and ideas from members. Step 1 – Provide infrastructure for people to share data and experience Step 2 – Promote transparency Step 3 – Facilitate discussion, experimentation and innovation Step 4 – Define and quantify network impact
  53. 53. 56 Building a Community Networks are able to build a community that fosters co- operation and trust among members, encourages ongoing participation and commitment. Step 1 – Facilitate personal contact where possible, including social interaction Step 2 – Create opportunities focused interaction on specific topics Step 3 – Create opportunities for focused interaction by smaller peer subgroups
  54. 54. 57 Connecting busy people in their own time and space
  55. 55. 58 Building capability and maturity in networks - Key messages Networks are growing in number and importance in health and care -”the Improvement Hill “ A social system ; cross boundary trusting and collaborative relationships are essential Effective networks have 5 key features 5`Cs wheel a vital tool for success Innovative ways of connecting must be embedded- social media is important What matters to you and your network is important : getting the measure Continuing to develop and improve care for those approaching end of life You are doing great work; keep the energy and momentum !
  56. 56. 2 Minutes 2 minutes End What Matters to You?
  57. 57. Thank You 60 #networksforhealth
  58. 58. Professor Margaret Holloway, Professor of Social Work, Director of Centre for End of Life Studies, Hull University Roles of Social Care Champions and End of Life Care Facilitators
  59. 59. What’s in a name? Champions, Facilitators and the national End of Life Care Network Margaret Holloway, Professor of Social Work and Director of the Centre for End of Life Studies University of Hull
  60. 60. End of Life Care Champions, Facilitators and Leads? What is an EOLC champion? What is an EOLC facilitator? What is an EOLC lead?
  61. 61. Roles - what do they do? What is the role of an EOLC champion? What is the role of an EOLC facilitator? What is the role of an EOLC lead ?
  62. 62. Skills - how do they do it? What skills does an EOLC champion employ? What skills does an EOLC facilitator employ? What skills does an EOLC lead employ?
  63. 63. 3 LEVELS Level 1 Raise awareness of EOLC at every opportunity (Champions, Facilitators, Leads) Level 2 Facilitate the delivery of quality EOLC through own activities and supporting others (Facilitators, Leads) Level 3 Address EOLC at strategic commissioning and service development level (Leads)
  64. 64. What is the difference between an EOLC champion in healthcare or their colleague in social care? WORK CONTEXT
  65. 65. End of Life Care Facilitators and Champions network Connects and maps people with a passion and ambition for enhancing End of Life Care.
  66. 66. Facilitators and Champions Network Purpose 1. To connect like-minded professionals at local level 2. To stimulate eolc developments at local, regional and national level 3. To share best practice nationally
  67. 67. In summary…  Everyone’s a champion  Some people have designated roles facilitating and/or leading others  How you do this depends on your work context and core roles, tasks and responsibilities
  68. 68. How can the network best support you?;
  69. 69. Workshops 12:00 – 12:30pm: Five Workshop Sessions running parallel. W1. End of Life Care Champions Programme (Nottinghamshire) – a multi-disciplinary approach across the community. Halima Wilson and Elise Adam. (Room 1) W2. Skills for Care a) London / South East: Developing local champions across health and social care b) St Luke’s Hospice: Developing the 6 steps mapping tool, qualifications and educational resources for social care professionals. Linda MacEachen and Glenda Cooper. (Room 2) W3. Workforce development in EoLC for staff in social care and regional workshops for the Association of Palliative Care Social Workers. Lesley Adshead. (Room 3) W4. EoLC Discharge coordination pathway and check list to ensure safe transition from secondary to primary care. Carolyn Doyle and Alison Drew. (Room 4) W5. The Circle of Life (interactive session board game): an EoLC training resource to meet learning outcomes on communication, best interests, mental capacity and advance care planning. Gina King. (Plenary Room, Congress Hall)
  70. 70. Lunch time……. … and an opportunity to network and visit the sharing tables
  71. 71. Facilitators & Champions Network Health Check • So far 29 responses • 12 out of 29 scored 20 or above (41%) • 12 out of 20 scored between 20 and 10 (41%) • 5 out of 29 scored 5 or below or incomplete (18%) • 82% are strongly agree or agree / neutral that you have a healthy network to build on
  72. 72. Dr. Bee Wee, National Clinical Director and Anita Hayes, Programme Delivery Lead Priorities for the care of the dying person Update, quality assurance and measurement
  73. 73. The priorities for care
  74. 74. “Health and social care providers, and their staff will be expected to review the care they provide for dying people in regard to each of the five priority areas. This includes consideration of how they will demonstrate attention to these priorities for individuals and those that are important to them”
  75. 75. Discussion How are you approaching this in your organisation? - Share ideas - Discuss challenges
  76. 76. QUALITY ASSURANCE AND QUALITY IMPROVEMENT Practical considerations
  77. 77. Abundance of knowledge and expertise
  78. 78. Quality assurance and quality improvement Considerations - Aims - Measurement - Building into what exists already in your organisations
  79. 79. What is your aim? What is your objective? Spend 2 minutes, reflect and write this down. Witham reflections #2 by Lincolnian 6722
  80. 80. Is it about quality assurance or measurement for improvement?
  81. 81. What are you currently measuring?
  82. 82. Do you have a balance of measures? Structure Process measures Outcome measures Balancing measures Balancing measures are measures of unintended consequences Qualitative and quantitative
  83. 83. What are your priorities “Quite often intuitive information synthesises with information from formal and informal sources. Whilst independently, the information is disparate and vague … when you put it together, you start to see a picture emerging which indicates that something is not right.” Director of Quality and Safety. From The Measurement and Monitoring of Safety, page 52, [6].
  84. 84. Do you feel part of a team?
  85. 85. Practical examples
  86. 86. Baseline Select priority areas Regular measurement of 1-2 questions
  87. 87. Displaying this …. Many audit questions, n=99 one month Multi-disciplinary recognition that the patient is dying. 2 audit questions, n=15 per month
  88. 88. Summary • Build on what you know already • Build measurement and formal / informal feedback into your approach as facilitators and champions • Have a balance of measures • Think practical, be robust, be curious • Have ‘good enough’ measurement
  89. 89. Review Use the worksheet as a prompt for discussion and review. You can work as a table, in pairs or on your own. You have 20 minutes.
  90. 90. Prospective Clinical and operational processes Understanding variation
  91. 91. Finally …
  92. 92. Workshops 2:30pm – 3pm: Five Workshop Sessions running parallel. W6. Supervision in End of Life Care: availability, time/space, compassion fatigue and resilience. Marie Price. (Plenary Room, Congress Hall) W7. a) Situated learning for care homes and domiciliary agencies, b) EoLC ABC education programme and ‘train the trainers’ for care homes, domiciliary agencies, ambulance services and homeless people workers. Jenny Caine, Janet Willoughby and Sally Bacon. (Room 1) W8. Pennine Acute Trust EoLC Transform Programme champions training course. Christine Taylor and Sarah Mullen. (Room 2) W9. Mobilising informal carer support networks. Amanda Gough and Ditch Townsend. (Room 3) W10. Delivering the six steps to success programme: challenges and strategies. Denise Williams. (Room 4)
  93. 93. Andy Pring Senior Analyst, Public Health England Data and Intelligence
  94. 94. Data and Intelligence Andy Pring, National End of Life Care Intelligence Network, Public Health England
  95. 95. Why data ? 100 Intro Measure Categorise Manage Plan Explore Understand Control Evaluate Report Monitor
  96. 96. There is so much data out there ‘Government’ collected • Census • Births • Deaths • Tax • Social security • Office of National Statistics 101 Intro ‘Health’ data • GP patient records • Hospital patient records • Hospital admissions statistics • Audits • Disease registers • Drug trials
  97. 97. Some examples • Encouraging good practice • Understanding and exploring the context • Asking questions 102 Intro
  98. 98. Impact of Electronic Palliative Care Coordination systems (EPaCCs) on place of death Andy Pring, Senior Analyst, Knowledge and Intelligence Team, South West Julian Abel, Palliative Care Consultant Weston super Mare
  99. 99. 104 Impact of EPACCs Source : The impact of advance care planning of place of death, a hospice retrospective cohort study Abel J1, Pring A, Rich A, Malik T, Verne J. BMJ Support Palliat Care. 2013 Jun;3(2):168-73. doi: 10.1136/bmjspcare-2012-000327. Epub 2013 Mar 15 Where people with terminal illnesses choose to die
  100. 100. Implementation of EPaCCs 105 Effect of EPaCCS
  101. 101. Cancer deaths (N=2,022) 106 Impact of EPaCCS All cancer deaths N.E.W Devon CCG and S Devon &Torbay CCG 2010-12 (N=10,463) EPaCCS
  102. 102. Non-cancer deaths (N=985) 107 Impact of EPaCCS All non-cancer deaths N.E.W Devon CCG and S Devon &Torbay CCG 2010-12 (N=26,294) EPaCCS
  103. 103. Conclusion • The process of asking people about their end of life preferences, placing these on an EPaCCS and providing care where patients choose is part of a highly effective intervention in allowing people to die in their place of choice. 108 Impact of EPaCCS
  104. 104. Death in usual place of residence is changing
  105. 105. Death in usual place of residence 110 Place of death 0 5 10 15 20 25 30 35 40 45 50 2001 2003 2005 2007 2009 2011
  106. 106. Changing practice or changing patients ? 111 Place of death Management Technology Environment
  107. 107. The number of deaths England 112 Place of death 0 50,000 100,000 150,000 200,000 250,000 300,000 350,000 400,000 450,000 500,000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012
  108. 108. Age at death – all causes England 113 Place of death 0 2 4 6 8 10 12 14 16 18 20 0-24 25 30 35 40 45 50 55 60 65 70 75 80 85 90 95+ Percentageofdeaths Age at death 2001-03 2010-12
  109. 109. Place of death by age All causes of death except external causes, England 2010-12 114 Place of death 0 10 20 30 40 50 60 70 0-49 50-64 65 70 75 80 85 90+ Percentageofdeaths Hospital Home Care home Hospice DiUPR
  110. 110. The trends in cause of death England 115 Place of death 0 20,000 40,000 60,000 80,000 100,000 120,000 140,000 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 Cancer Cerebro vascular disease Ischaemic heart disease Dementia Respiratory disease External causes Other
  111. 111. Death in usual place of residence by cause of death – over time England 116 Place of death 0 10 20 30 40 50 60 70 80 2001-03 2010-12
  112. 112. Same measure different distribution 2010-12 excluding external causes 117 Place of death 0 10 20 30 40 50 60 Non-cancer Cancer Percentageofdeaths Hospital Home Care home Hospice DiUPR
  113. 113. Place of death by age Non-cancer Cancer England 2010-12 118 Place of death 0 10 20 30 40 50 60 70 Percentageofdeaths Hospital Home Care home Hospice DiUPR 0 10 20 30 40 50 60 70 Percentageofdeaths Hospital Home Care home Hospice DiUPR
  114. 114. Place of death for residents (Y) and non-residents (N) of a care-home 2010-12, England 119 Place of death 0 10 20 30 40 50 60 70 Hospital Home Carehome Hospice Yes NoY N
  115. 115. Variations by where you live EndofLifeProfiles-Percentageofcancerdeathsinhospital 120 Place of death
  116. 116. Significant factors affecting DiUPR 121 Place of death All these changing patterns interact. • Seen individually some may raise the DiUPR figure • Others my reduce it Can we get a sense of what how DiUPR would have changed if patterns of age at death, cause of death, and residence in a care home had remained the same ?
  117. 117. Significant factors affecting DiUPR DeathinUsualPlaceofResidenceStandardised for age,sex,causeofdeath,carehomeresidence WARNING Back of envelope 122 Place of death 0% 10% 20% 30% 40% 50% 2001 2002 2003 2004 2005 2006 2007 2008 2009 2010 2011 2012 Crude Adjusted Change 2008-2012: Crude : 6%, Adjusted 4% i.e. Even allowing for the changes in the patients you see – the outcome in terms of DiUPR has changed in recent years
  118. 118. Hospital Admissions
  119. 119. 124 Hospitals What’s the data for hospitals We might assume that trends in • admissions in last year of life, • emergency re-admissions in last 100 days • total stay in hospital in last 100 days Would crudely follow the number of deaths, or the number of deaths in hospital
  120. 120. But they don’t appear to Average for acute hospital trusts, England (except total & hospital deaths from ONS) Source : Health and Social Care Information Centre / Public Health England 125 Hospitals
  121. 121. 126 Hospitals Does this seem right to you ?
  122. 122. To finish
  123. 123. Keep a diary 128 Finish
  124. 124. Barbara Zutshi Programme Delivery Lead, Patient Experience Programme, NHS Improving Quality NHS England’s Commitment to Carers
  125. 125. Commitment to Carers – why? The facts 5.4 million people in England provide unpaid care for a friend or family member 1.4 million people providing fifty or more hours of unpaid care 600,000 increase in the number of carers between 2001 and 2011- largest growth in unpaid carer category, fifty or more hours per week Carers contribution to society estimated at £119 billion a year Unpaid care increasing at faster rate than population growth 21% of carers providing over 50 hours per week in poor health compared to 11% of non carer population Health professionals identify one in ten carers, GPs only identify 7%
  126. 126. Commitment to Carers A Carer is anybody who looks after a family member, partner or friend who needs help because of their illness, frailty or disability. All the care they give is unpaid
  127. 127. Commitment to Carers
  128. 128. Commitment to Carers 2008 2010 Refresh expected some time in 2014
  129. 129. Commitment to Carers • NHSIQ Commissioned by NHS England summer 2013 • Extensive participation exercise with carers organisations, carers and other key stake holders • Social media, blogs, survey • Tweet #NHSThinkCarer • December workshop • Identified priorities for carers
  130. 130. NHS Improving Quality and NHS England Treat me and my husband as a unit, don't shut me out. All that happens to one of us, impacts on the other and I guess this will be increasingly so as the disease progresses and life gets more difficult for both of us. I was not asked if I was prepared to be the carer, whether I needed help, how I felt about it, nor given any information to help me. To feel like someone cares, at the moment I feel totally isolated dealing with something that has turned my life upside down ……Do not assume that because I am here, I am able to do everything that needs doing, either physically or mentally. I had not initially realised I was a "Carer", until the nurse at our GP's practice happened to use the word while giving a flu jab. But I didn't know what it meant, or what to do about it and it took me years to find out as much as I know now (and I still don't think I know much!) ………when you first start caring, especially if the person you are caring for is very unwell it is so overwhelming to find yourself in the situation that your focus is totally on the person you are caring for. The Impact of Being a Carer
  131. 131. NHS Improving Quality and NHS England Understand, that most carers will not ask for help until they are well past needing it….. we may seem like it is all okay and appear to be carrying on as normal, but what are we supposed to look like, do we all need to be stood at the edge of a cliff screaming? Invite me to meeting with carers who have a positive experience to share. I need HOPE …don't wait for everything to go pear shaped when it is a clearly progressive trajectory but the package only caters for here and now and it then takes another six plus weeks to provide for the changes that were clearly predictable Understand how many unlinked professionals that the family has to deal with They often forget, except my GP he's always looking out for me. Even my employers, the NHS! Forget sometimes! Talk to us, realise that there are lots of different groups of carers, with many areas that overlap, but many that do not. Be flexible in your support, make it person centred we cannot all fit inside the boxes on your forms, we do not all meet the criteria specified. We are people first! Treat each caring situation individually COMPASSION …by offering positive practical help and not being judgemental
  132. 132. NHS Improving Quality and NHS England Speak to me, listen and act on what I say Take the time to actually listen to our problems. Then to help us find solutions. Do not ignore us and surround us with red tape and paperwork Recognise and involve carers right at the start of any conversation about the patients treatment or care, listen to what they have to say and value their expertise by not ignoring them or cutting them out of decision making To be able to have a voice in the care and support when caring for someone and in particular older persons To actually listen and not judge and to be understanding and to put the family at the heart of the issues. They also need to work together better and listen and talk to each other in a key working way so we are not repeating everything to everyone we see …not using the excuse of confidentiality to avoid LISTENING to carers - it might be appropriate not to tell me stuff but it is NOT appropriate to ignore my views and input Listen to what I say - I know MY husband. I look after him 24/7 - you don't!
  133. 133. NHS Improving Quality and NHS England What’s Good? Where health professional have shared their expertise this has helped. I attended the Memory Group with my husband and was given great support, practical help and loads of information useful for now and later, including about support for myself. …allowed me to book urgent Doctor appointments for myself. Offered and had Carers Health check. Husband's GP offered me the opportunity to see her and speak to her, which was great as she was fully aware of the situation at home and was very understanding and empathetic and is now treating me...The one-to-one carers needs assessment was great, but I had to wait a really long time for it The Physiotherapists who assisted my mum showed me the correct way to get her in and out of bed ….. and also what exercises to do to help her both physically and with her speech. GPs have after a lot of work on my part realised that we need home visits when we ask, slot me in if I have a problem, are very sympathetic. Our GP practice has been great. Nothing is too much trouble. If we're clear about how they can help, they do. Personal Care Co-ordinators are an invaluable 'go-to first' for a carer, when problems arise. Having one or two people who you know and who know your circumstances without having to repeat them every time is both stress less and reassuring.
  134. 134. NHS Improving Quality and NHS England What would be good Firstly by treating us as an equal partner in care By being more flexible with appointments, especially when Carers work as well as care for a loved one Ensure that all records flag up when person has caring responsibilities. Meetings to discuss should not just be 9-5 offer help to take out the disabled person giving the carer a break in their own home Make it seamless across hospitals, GP Surgery, dentist, podiatry that carers info is held on the records of the person being cared make it easier for the carer to arrange appointment. …..and ask other questions All carers should be encouraged to have a free health check every year. Prescription medicines for carers should be free Ensure that which I need in terms of equipment, physical and emotional support is offered sooner and without having repetitive and delaying assessments that add to the stress of the situation you are faced with Remembering my name is a really good start Health services records should show that carers/family members are involved in caring for someone so they are fully involved in all aspects of medical, mental. Physical care and attend appointments/ meetings etc. Have a one stop shop for information, when I first started caring for my dad I went round in circles finding the correct information
  135. 135. Commitment to Carers • Publication in May 2014 of NHS England’s ‘Commitment to Carers’ – Launched by Simon Stephens & personally involved – Higher profile
  136. 136. Emerging themes • Recognise me as a carer(this may not always be as ‘carers’ but simply as parents. children, partners, friends and members of our local communities. • Information is shared with me and other professionals. • Signpost information for me and help link professionals togethe.r • Care is flexible and is available when it suits me and the person I care for. • Recognise that I also may need help both in my caring role and in maintaining my own health and well being. • Respect, involve and treat me as an expert in care. • Treat me with dignity and compassion.
  137. 137. Commitment to Carers
  138. 138. Commitments 37
  139. 139. Commitments
  140. 140. Commitments
  141. 141. Commitment to Carers – Evidence summits Commitment 27 • Carers Evidence Summits – North – 1 July York – Midlands and East - 3 July Leicester – London – 8 July London – South – 10 July Taunton • In partnership with NHS England, RCGP and in collaboration with Carers organisations (commitments 13 & 24) • Involving regional leads as much as possible • Social media activity up to and including the events • 80 delegates (100 London) – Carers organisations and Carers, CCGs - Commissioners, Primary Care - GPs, Health & Wellbeing Boards, providers……
  142. 142. Commitment to Carers – Evidence summits Moving on • The outputs will: – Identify what works well to support the health and wellbeing of carers – Help us understand what needs to happen so that good practice is spread – Promote how our health services can improve the life for carers – Improve outcomes through commissioning • Case studies to create ‘principles of practice’ for the commissioning of services to inform the autumn commissioning round • Case studies received from a variety of sources – Over 60 to date plus – Carers organisations, Acute care, CCGs, LAs, strong examples of joint commissioning – 2 specifically on End of Life Care and Bereavement – 60 examples from 11 GP practices and 4 CCGs
  143. 143. Commitment to Carers – Young Carers Event • Event October 2014 (half term) – To ensure that young carers have a say and are heard – Simon Stevens attending – ‘different venue’ – Young carers leading the agenda • Young Carers Festival – 1500 young carers – Hampshire – YMCA & Childrens Society – Health Professionals Question Time
  144. 144. Commitment to Carers Thank you Tweet #NHSThinkCarer 8pm tonight #wenurses
  145. 145. Dr. Bee Wee, National Clinical Director End of Life Care, NHS England Reflections of the Day
  146. 146. #nhsiqeolcare End of Life Care Facilitators and Champions Network
  147. 147. Nottinghamshire End of Life Care Champions Programme – a multi-disciplinary approach across the community Halima Wilson Workforce and Organisational Development Officer, Optimum/Nottinghamshire County Council Elise Adam End of Life Care Trainer, County Health Partnerships
  148. 148. Nottinghamshire 2014
  149. 149. Nottinghamshire EOL Champions • Why have Champions? • Recruitment of Champions • Who are the Champions? • Success of the Champions programme To provide end of life care (EOL) knowledge, information and training to the health and social care sector in Nottinghamshire
  150. 150. Why have EOL Champions? • Using resources wisely • Spread the message further • Share the workload • Harness the passion of people • Motivate each other • Recognise people’s good work in their own workplace and the wider community • Feel part of a group that shares their enthusiasm
  151. 151. Recruitment of Champions • Looked at the national, regional and local EOL picture around EOLC • Developed an action plan • Launched the EOL Champions programme via websites, newsletters, emails, events, training courses and on visits to different organisations • Recruited EOL Champions across different organisations over the last 2 years
  152. 152. Who are the Champions? • Maggie Rhodes – Manager, Landermeads Care Home • Karen Tidy –Manager, Landermeads Care Home • Mercy Cofie Cudjoe – Manager and staff at Alexandra Lodge Care Home • Julie Barker – GP Newark and Sherwood CCG • Zoe Taylor – Senior carer, Alexandra House Care Home • Emma Townsend – Mental Health Nurse, Nottinghamshire Dementia Outreach • Elaine Maddock – GP Nottingham North and East CCG • Michael Osbourne – Volunteer Service User Consultant • Natalie Bryan – Community Care Officer, NCC • Kath Binns – Social Worker, NCC • Jane Zdanowska – Commissioning Officer, NCC • Cathy Burgum - Quality Assurance Manager – HC-One • Hayley Spencer – Manager, Broadlands Care Home • Lisa Rooks – Manager, Mencap • Joanne Polkey – Manager, Nottinghamshire Hospice at Home • Janis Sim - Manager, Nottinghamshire Hospice
  153. 153. Who are the Champions? • Wendy Berridge – LTC Nurse, Primary Integrated Community Services • Gemma Del Toro - LD Health trainer, Nottinghamshire Healthcare Trust • Steph Pindor – EOLC trainer, County Health Partnerships • Elise Adam – EOLC trainer, County Health Partnerships • Halima Wilson- WoD Officer, NCC • Mark Griffin – Community Psychiatric Nurse, County Health Partnerships • Linda Fern – Community Matron, County Health Partnerships • Elaine Watts – Specialist Palliative Care Nurse, Primary Integrated Community Services Ltd • Claire Henley – LD Nurse Specialist, Sherwood Forest Hospitals Foundation Trust • Sue Davies - Calverton Supreme Home Care Ltd • Cherry Rumsey –Palliative Link Nurse, Nottingham Healthcare Trust • Annabel Wilson – Community Staff Nurse, Nottingham Healthcare Trust • Kath Oakley – Patient Participation Group – Keyworth • Heather De’Ath – Trainer, Seely Hirst House • Angela Hopewell – Seely Hirst House • Julie Ward-Daft – Manager, Seely Hirst House • Janet Parry – Seely Hirst House
  154. 154. Success of Champions How can we measure the success of the Champions programme? • Chosen as 1 of 3 national GSF Cross Boundary Care Pilot projects • EOL Champions who attained GSF accreditation now help other care homes who are going through the same process • Involved in Dying Matters Awareness events • Organised and presented at local and national conferences • Submitted articles for the EOL Newsletter/websites • Two of the EOL Champions Gemma and Claire have been recognised nationally for their work around end of life care for people with learning disabilities
  155. 155. A multi-disciplinary approach across the community • Network widely • Work with key people • Share good practice across the community • Demonstrate how this works in practice e.g. at Dying Matters events 2014 • Better understanding of how each other’s roles work • Has improved communication between services • Listened to other people and use their ideas
  156. 156. Working together for better outcomes in end of life care
  157. 157. Background to the HENCEL funded Project • Health Education North Central and East London (HENCEL) through an EoLC Advisory Group awarded funding to 7 EoLC projects in its area • Skills for Care partnered with Skills for Health and worked in association with the NCPC to run a project which started in October 2013 • This project focused specifically on integration at End of Life Care • The project was delivered across 10 of the 13 local authority areas covered by HENCEL: Barking and Dagenham, Camden, City of London, Hackney, Havering, Islington, Newham, Redbridge, Tower Hamlets, Waltham Forest • The project built on other work Skills for Care and Skills for Health had developed on workforce integration • Completion of the project resources and networks is continuing with some additional activities agreed to be completed by March 2015
  158. 158. Project aims • The aim of this project was to improve people’s experiences of end of life care by encouraging people to work together in an integrated way. Its purpose was to provide guidance to individuals in daily practice in both health and social care settings, by finding out what mattered most to people and translating this into: • A set of underpinning key messages • A short one and half hour learning and development session delivering the key messages to front line workers • A film, illustrating the key messages • Additionally, to create a network of champions who would be able to continue to support each other once the project was over and to offer them accredited training opportunities
  159. 159. Project methodology • Emphasis on working together in an integrated way – context end of life care • At every stage of the work people in different roles across health and social care were brought together to enable learning from each other and begin to create new relationships that supported integrated practice • The starting point was listening to people’s experiences - sessions were designed to encourage free-flowing conversations that led people into thinking about what works and doesn’t. These stories and experiences created learning points and shaped the materials produced • A co-production approach was used throughout
  160. 160. Those involved in the project • Project steering group • Expert Reference Group (ERG) – essential for ensuring links with other local strategies and avoid duplication. • Champions - people in a range of roles with an enthusiasm for improving the quality and experience of end of life care. • Front line practitioners who attended learning and development sessions Every event included people from health and social care, people from the statutory and voluntary sector and carers and people who used services (experts by experience) - including carers, commissioners (health and social care); district and hospital based nurses; Social workers; hospice staff; patient representatives; HR/trainers (health and social care) doctors (GPs and consultants); health care assistants; social care workers; managers (team leaders, home managers, voluntary organisation managers)
  161. 161. Numbers involved Members on the ERG 13 Champions sessions run 4 Champions attended the sessions 46 Learning and Development sessions run 18 Number of front line workers reached 296
  162. 162. Project stages One • Identifying and working with the key players across the HENCEL area. • Building the project plan around the already established networks, resources and priorities. • Identifying champions and other resources. Two • Working with the champions, identifying key messages through personal stories and experience, and beginning to connect champions to each other. • Using the messages to develop the learning materials. • Identifying participants and venues for the learning and development sessions. Three • Delivering the learning and development sessions. • Making the film. • Setting up a framework for an ongoing champion network. Four • Launching the products and sharing them • Dissemination of learning and sustaining work started and the network
  163. 163. Project resources produced • Six Key Messages for people working at the front line, to help them in their everyday practice developed into e-learning tool. • Session plan for using the resources to run a learning and development session for front line workers. • A film illustrating the key messages through the story of Pippa who has Motor Neurone Disease and her family • A second talking heads film about the different roles of everyone possibly involved during end of life care with an accompanying booklet • Accredited facilitation training opportunities for champions • Places on accredited End of Life Care qualifications • Creation of a network of champions with 3 face to face sessions and an ongoing virtual network
  164. 164. Project next steps • Completion of the resources and films • Films showcased at National Council for Palliative Care conference on 11th Sept. • Launch of all resources and the champions network 16th October • Champions and front line workers accredited training opportunities offered • Project delivered to missing HENCEL boroughs (Barnet, Enfield and Haringey) • Project learning and resources disseminated across London with cross referencing to the other HENCEL funded projects • Network of champions expanded and sustained
  165. 165. Skills for Care’s resources for EoLC 1. National End of Life Care Qualifications • Level 2 and 3 Awards Awareness of End of Life Care • Level 3 Certificate in working in End of Life Care • Level 5 Certificate in Leading and Managing Services to Support End of Life and Significant Life Events 11 units in all with a specialist communication unit End of Life Care Learning Materials to accompany the qualifications – produced by St. Luke's Hospice Plymouth under contract to Skills for Care National end of life care qualifications – a guide for employers and learners Explains the qualifications and links to the 6 steps programme.
  166. 166. Skills for Care’s resources for EoLC 2 2. Common Core Principles and Competencies These were developed to ensure workers have the training, education, development and support they need to work with people at the end of their lives. Common core competences and principles for health and social care workers working with adults at the end of life 3. Workforce Development resources Developed in partnership with Skills for Health and the National End of Life Care Programme, the guide aims to ensure that workers involved in supporting someone who is at the end of their life are properly trained to be able to undertake their work effectively and appropriately. a guide to workforce development to support social care and health workers to apply the common core principles and competences for end of life care.
  167. 167. Thank you
  168. 168. End of Life Champions Network Workshop Lesley Adshead Department of Social Work, Bereavement and Welfare St Christopher’s Hospice
  169. 169. Palliative Care Social Work - Reaching out to General Social Care Social Care Framework 2010 set the Challenge
  170. 170. Our approach  Flexible - developed in partnership with local councils, taking account of local priorities and responsive to the needs of the organisations as they become apparent  Multi-pronged - aimed at staff groups at all levels, across services, and with crucial buy-in at senior level  Aiming to take local authorities beyond the delivery of isolated training days to the more holistic approach we believe is essential for the culture shift required
  171. 171. Core elements  Strategic reviews and planning with senior and service managers as supporters and enablers of end of life support  Development of end of life champions as an end of life resource for their teams  Training and support tailored to the needs of specific teams and individual team members as professionals confident in supporting end of life  Broader consultancy and development work to embed learning into practice
  172. 172. What we have learnt and what keeps us going? Being realistic Being responsive – grasping opportunities Being flexible Being persistent We have needed vision, willingness to take risks and to challenge, creativity, and commitment to service users
  173. 173. South West Essex Community Services Discharge Coordination Pathway Supporting the transition from Secondary to Primary care for people with end of Life care Needs. Carolyn Doyle Lead Nurse for end of life care Alison Drew End of Life care Facilitator
  174. 174. South West Essex Community Services Why do we need a co-ordinated approach? • High incidents of people coming out of hospital without any evidence of advance care planning in place e.g. PPC/PPD/DNACPR/Anticipatory Meds • More than 70,000 people die in nursing and residential care homes each year yet comparatively little attention has been paid to end of life care and its challenges in this setting (Percival 2013). • People returning to hospital, often inappropriately, often from care homes.
  175. 175. South West Essex Community Services  Poor discharges/lack of communication/unsafe TTA,s  Frequent readmissions  Dissatisfaction with service  Dis-coordination, duplication  High readmission rate from care homes  Stakeholders  Building trust  Integration/partners  Pathway design  Decided to pilot Local landscape
  176. 176. South West Essex Community Services Pilot Criteria  The pilot ran between September 1st 2011- August 31st 2012  The person being discharged must meet the following criteria  Has end of life care needs  Known to Hospital Macmillan team  Known to Complex case management team or  Discharged from St Lukes In patient unit.
  177. 177. South West Essex Community Services Pathway  Joint working with St Lukes/ BTUH CCMT Patient identified as end of life Discharge being planned Discharge notification form completed Fax form to EoL care On Call facilitator will check details Contact discharging professional to discuss Is patient safe to discharge Do relevant services know about discharge Advance Care planning in place Liaison and support if needed Post discharge follow up as required.
  178. 178. South West Essex Community Services Impact  During the pilot period we received a total number of 241 notifications (2 for people who deteriorated and died pre discharge).  Significant increase in advance care planning especially around  Anticipatory medication  Do not attempt Cardiopulmonary resuscitation orders  Significant increase in discharges to care home
  179. 179. South West Essex Community Services Discharged to Home % Care Home % 26 83.87% 5 16.13% 6 60.00% 4 40.00% 15 75.00% 5 25.00% 10 62.50% 6 37.50% 13 56.52% 9 39.13% 15 68.18% 7 31.82% 15 78.95% 4 21.05% 10 52.63% 9 47.37% 10 71.43% 4 28.57% 14 70.00% 6 30.00% 17 70.83% 7 29.17% 13 54.17% 11 45.83% 164 67.77% 77 31.82% Discharged to 2 people were planning for discharge to care home but deteriorated prior to discharge.
  180. 180. South West Essex Community Services Care Home discharges 0 2 4 6 8 10 12 Sep-11 Oct-11 Nov-11 Dec-11 Jan-12 Feb-12 Mar-12 Apr-12 May-12 Jun-12 Jul-12 Aug-12 Discharged to Care Home
  181. 181. South West Essex Community Services Evaluation of Care Home Deaths  75 people discharged and received in to a care home setting.  62 people subsequently died,  2 in hospital (3%) ,  2 died in a hospice (3%)  58 died in the care home (94%).
  182. 182. South West Essex Community Services Anticipatory Meds Number received Discharged with Meds % Authorisation completed % Macmillan advise was sort % Sep-11 31 8 25.81% 6 75.00% 0 0.00% Oct-11 10 3 30.00% 3 100.00% 0 0.00% Nov-11 20 13 65.00% 13 100.00% 1 7.69% Dec-11 16 13 81.25% 13 100.00% 6 46.15% Jan-12 23 11 47.83% 11 100.00% 6 54.55% Feb-12 22 14 63.64% 14 100.00% 10 71.43% Mar-12 19 13 68.42% 12 92.31% 4 30.77% Apr-12 19 15 78.95% 13 86.67% 3 20.00% May-12 14 10 71.43% 10 100.00% 3 30.00% Jun-12 20 15 75.00% 14 93.33% 8 53.33% Jul-12 24 14 58.33% 13 92.86% 5 35.71% Aug-12 24 13 54.17% 11 84.62% 6 46.15% Anticipatory Meds
  183. 183. South West Essex Community Services PPC/PPD No died % No died with PPC % PPD achieved % 28 90.32% 17 60.71% 15 88.24% 6 60.00% 4 66.67% 4 100.00% 17 85.00% 11 64.71% 11 100.00% 15 93.75% 10 66.67% 9 90.00% 22 95.65% 11 50.00% 8 72.73% 19 86.36% 15 78.95% 15 100.00% 16 84.21% 12 75.00% 11 91.67% 15 78.95% 9 60.00% 9 100.00% 12 85.71% 7 58.33% 7 100.00% 16 80.00% 13 81.25% 10 76.92% 17 70.83% 10 58.82% 10 100.00% 20 83.33% 15 75.00% 12 80.00% PPC
  184. 184. South West Essex Community Services DNACPR
  185. 185. South West Essex Community Services Deaths in the Pilot sample Deaths in the pilot sample During the period of the pilot there were 203 deaths, 84% of the 241 notifications. Place of Death People with care co-ordinated via the pilot Home (including Care Home Hospice Hospital unknown 75% 17% 7% 1% Comparison with local data from National end of life intelligence team Home (including Care Home Hospice Hospital unaccounted 32% 4% 62% 2%
  186. 186. South West Essex Community Services 2 years on  April 2013 – March 2014 received 356 referrals  48% increase  98-100% have ACP in place (PPC/DNACP)  100% have medication review  Integration/staff work alongside/shadow  Shared experiences and expertise
  187. 187. South West Essex Community Services What now…..  Roll out across the healthcare economy.  Linking into the coordination care register  Building on a coordination centre (SAAS)
  188. 188. South West Essex Community Services
  189. 189. START FINISH Advance Care PlanningAAddvance CCare PPllanniing Best InterestsBBestt IIntterestts PoliciesPolliiciies Communication © Created by Gina King and Maggie Martin. Artwork and Graphic Design by Cir cle of L ife Cir cle of L ife••Cir cleofL ife Cir cleofL ife••
  191. 191. 2 Background  Oakhaven hospice secured funding following a successful bid in a Hampshire wide project called ‘Situated Learning’  In accordance with (what was) the South Central Strategic Health Authority education strategy  Following the End of Life Care Strategy of 2008  Funding ran out at the end of March 2013....  Oakhaven agreed for the project to now be ‘ongoing’
  192. 192. 3 ‘...diversify hospice care provision into other models of care and care settings’ Jan 2013
  193. 193. 4 What is situated learning?  First proposed by Lave and Wenger (cognitive anthropologists) in 1991  Similar to the work of Dewey (1938)  A model of learning in ‘a community of practice’  learning that takes place in the same context in which it is to be applied  A social process where knowledge is ‘co-constructed’  Learners benefit from the knowledge of others who have ‘more experience’ of a shared interest  Relies on interaction and encourages evolving
  194. 194. 5 Values and principles  Relevant  Builds on experience  Encourages communication  Tailored to perceived need and not just ‘prescriptive’  Focuses on a persons potential and capacity to develop and not on limitations  Helping to develop relationships within the community
  195. 195. 6 Developing a plan.....
  196. 196. Education team  Head of education, Lucy Smith  Education secretary and situated learning project coordinator, Judy Verrell  Educational facilitator, Jenny Caine 7
  197. 197. Phase one – Care homes  Contacted all 43 residential and nursing homes in catchment area  ‘Identify through discussion any palliative care needs your staff may have, and formulating a supportive education/training programme accordingly’  Meet with staff (see example of questionnaires) 8
  198. 198. 9 PLANNING Education session Working alongside staff FILL IN QUESTIONNAIRE/DISCUSS OPTIONS Determine want/need INTRODUCTION TO SITUATED LEARNING Meet with manager And/or staff
  199. 199.  How Many care homes have been involved? Participating homes 76% Non participating homes 24%
  200. 200. Phase two – Domiciliary Care  Identified all care agencies in our catchment area  Around 40  Some based local, others cover a large area  Same introductory process as care homes 11
  201. 201.  How many agencies have been involved? Participating agencies 46% Non- particpating agencies 54%
  202. 202. 13 Content  Some sessions are booked in advance, however some are booked when ‘need’ arises  Working alongside staff while caring for residents with palliative or end of life needs  Liaising with our Community Nurses and Hospice at Home team  Providing ‘overview’ sessions on palliative and Eolc  Some requested specifics ie advance care planning or end of life care plans  Syringe drivers (support only)
  203. 203.  Dementia and pain assessment/ Eolc  Symptom management  Caring for the dying  Communicating with families/self care  A session formulated specific to a resident/clients diagnosis, for example case study analysis and future planning  Storytelling and discussion a REAL focus  Questions and answer session  Reflection plays a big part in all sessions! 14
  204. 204. Resources  End of life care file  Useful websites  Email and phone support  Facebook page  Website  Link nurse groups 16
  205. 205. Link nurse groups  Care home link group meets monthly  Has been running for 2 ½ years  Domiciliary link group meets every two months  Has been running for 8 months 17
  206. 206.  Updates  Information  ‘projects’;  ie communication books, discharge checklist, end of life care checklist for Doctors  Visitors;  ie Ambulance crew, soul midwife, Doctor, nurse prescriber, district nurse, complementary therapist 18
  207. 207. 19 Barriers  Initially, reporting to commissioners  TIME! And finding the ‘right’ time for each setting  Travel and distance  Unrealistic expectations of managers  Cancellations  Turnover of staff  Negative media influence (Liverpool care pathway, assisted dying)  Differences between uptake of care homes and agencies
  208. 208.  Occasionally some people not ‘engaged’ and it can be difficult to manage 20
  209. 209. 21 Looking to the future  Contact homes and agencies again (especially those not involved)  Closer working with Hospice @ Home team  Train the trainer (especially domiciliary care)  Reflective debriefing groups  More work with South Central Ambulance Service  More work within Learning disabilities  Local hospitals
  210. 210. Contact details   01590 646445  22
  211. 211. 23  Dewey J (1938) Experience and education. New York: Touchstone  Lave J and Wenger E (1991) Situated learning. Legitimate peripheral participation. Cambridge: University of Cambridge press
  212. 212. The Route to Success in End of Life Care - Achieving Quality in Acute Hospitals The Transform Programme
  213. 213. Six Critical Success Factors 1. Leadership engagement 2. Strategic alignment 3. Governance 4. Measurement 5. Capability and Learning 6. Resourcing(people)  Ref How to guide for acute hospitals(2012)
  214. 214. Key Enablers Individualised end of life care plan Rapid Discharge Pathway (RDP) Amber Care Bundle (ACB) Electronic Palliative Care Coordination System (EPaCCS) Advance Care Plan (ACP) Core metrics- Organisational Ward identify areas of best practice leading to shared learning RTS Acute Hospitals & How to Guide How to implement on the ward?
  215. 215. Project Plan  Pre audit work: Case note review, skills knowledge and confidence questionnaire, Bereavement Survey.  Deliver the End of Life Care Champions Course  Have an individual plan for each identified ward.  Produce progress reports  Post evaluation and way forward.
  216. 216. End of Life Care Champions 5 day Course  Wards attending  J6,H4,F7,F10, CAU, OASIS UNIT, Ward 6 and 21.  One member of the Medical Team  Ward Manager  Palliative/End of Life Link, Trained Nurse  Senior Care / Care Assistant
  217. 217. End of Life Care Champions 5 day Course  2 days facilitated learning, 16th and 17th June  2 days Hospice placement, 18th June-10th July  1 day facilitated learning, 11th July  6 month learning in action, one hour per month with Facilitator/MDT for After Death Analysis  SPCT shadowing opportunity
  218. 218. Ward based training -10 months.  EPaCCS- co ordinate my care  Advance Care Planning/Difficult conversations  Amber Care Bundle/Difficult conversations  Rapid discharge  Individualised End of Life Care Plan  Pain and symptom control  Syringe driver  Hydration and Nutrition/Mouth care/pamper pack  Care after death  Spirituality
  219. 219.  Support given to ward by End of Life Care Facilitators  Specialist Palliative Care Team  Monthly significant event analysis  Ward Manager and EoLC Facilitator to meet as agreed  A to do list will be completed and updates given for transform board
  220. 220. Influence What is it? Why is it important? How can you be more influential?
  221. 221. What is influence?  The ability to gain commitment from others
  222. 222. How you can increase your influence Create the right impression Do what works and stop doing what doesn’t Develop your job role
  223. 223.  Don’t let your body give the game away  Physical gestures account for more than half the messages we send out in daily life. “Best learn to read them” ••
  224. 224. What will the EoLC Team do?  Tailor Ward based teaching to suit individual ward needs  Facilitate monthly SEA  Offer planned and as required ward based and telephone support  Support Ward Managers with maintaining training record and ensuring targets are reached  Implementation and audit of Transform programme and EoLC Standards
  225. 225. What will the EoLC Team do?  Tailor Ward based teaching to suit individual ward needs  Facilitate monthly SEA  Offer planned and as required ward based and telephone support  Support Ward Managers with maintaining training record and ensuring targets are reached  Implementation and audit of Transform programme and EoLC Standards
  226. 226. Roles and Responsibilities  The End of Life Care Champions  The End of Life Care Team  Specialist Palliative Care Nurses  Spiritual Care Team  Palliative Care Consultant  Dieticians  Pharmacy
  227. 227. Any Questions
  228. 228. Mobilising informal carer support networks A ‘compassionate communities’ initiative DitchTownsend & AmandaGough
  229. 229. MyVision The community is an equal partner in providing appropriate health care at the end of life.
  230. 230. Public Health & PalliativeCare (‘Compassionate communities’) • Health promotion concepts – Prevention – Harm reduction – Early intervention – Sustainability
  231. 231. Public Health & PalliativeCare (‘Compassionate communities’) • Health promotion methods – Authentic participation • WorkingWITH rather than ON • Valuing non-professional knowledge • Learning rather than teaching
  232. 232. Public Health & PalliativeCare (‘Compassionate communities’) • Health promotion methods – Authentic participation – Community development • Mutually defined priorities • Care BY community members • Supportive professionals
  233. 233. Public Health & PalliativeCare (‘Compassionate communities’) • Health promotion methods – Authentic participation – Community development – Partnership • Non-health organisations • Community-led health organisations
  234. 234. Public Health & PalliativeCare (‘Compassionate communities’) • Health promotion methods – Authentic participation – Community development – Partnership – Individual education • Reduce ignorant social responses • Increase support • Address anxiety
  235. 235. Public Health & PalliativeCare (‘Compassionate communities’) • Health promotion methods – Authentic participation – Community development – Partnership – Individual education – Community mobilisation • Promote death education • Promote community support
  236. 236. Public Health & PalliativeCare (‘Compassionate communities’) • Health promotion methods – Authentic participation – Community development – Partnership – Individual education – Community mobilisation – Enabling environments • Address prejudice • Improve social conditions • Address inequities
  237. 237. Circles of Care (Abel et al 2013) Model Inner Outer Community Services Policy PLWD
  238. 238. Situation (2011) • A majority prefer to die at home, but often can’t • Caring can be isolating, exhausting and emotional • Unsupported caring can have a devastating impact • The last 50 years have “professionalised” death • Often services exclude local communities • Individualised care can be blind to the community • Death and dying are not openly discussed in society
  239. 239. Circles of Care Traditional approach Inner Services Policy Outer Community PLWD
  240. 240. Response (2013+) • Dying at home • Connect to ACP
  241. 241. Response (2013+) • Dying at home • State of carers • Mentor support
  242. 242. Response (2013+) • Dying at home • State of carers • Unsupported care • Connect community development and clinical services
  243. 243. Response (2013+) • Dying at home • State of carers • Unsupported care • Professionalisation • Enable and value community responses
  244. 244. Response (2013+) • Dying at home • State of carers • Unsupported care • Professionalisation • Excluded communities • Community forum
  245. 245. Response (2013+) • Dying at home • State of carers • Unsupported care • Professionalisation • Excluded communities • Individualised care • Network development
  246. 246. Response (2013+) • Dying at home • State of carers • Unsupported care • Professionalisation • Excluded communities • Individualised care • Death taboos • Join general community care & development networks
  247. 247. Circles of Care Compassionate communities Inner Outer Community Services Policy Services PLWD
  248. 248. Compassionate Community Networks Project • Objectives 1. Increased support for carers from their own networks 2. Reduced isolation for carers by increased community connectedness 3. Increased capacity to support carers by the community
  249. 249. Compassionate Community Networks Project • Implementation 1. Caring for carers • Mentors (‘Community Companions’ - CCs) • Signposting • Corporate carers strategy
  250. 250. Compassionate Community Networks Project • Implementation 2. Reduced isolation for carers by increased community connectedness • Network development • Community development
  251. 251. Compassionate Community Networks Project • Implementation 3. Increased capacity to support carers by the community • (Inner circle mentors) • (Outer circle transfers) • Community development
  252. 252. Compassionate Community Networks Project • Outcomes “Her husband took over as key person allowing her to be a daughter.” Hospice community nurse specialist “He is now able to use the people already known to him that had wanted to be of help.“ Hospice community nurse specialist “There’s a calmer situation all round for the patient, carer and family.“ Hospice doctor
  253. 253. Compassionate Community Networks Project • Methods – Network development • Conversations • Participatory learning & action (PLA) tools – Ecomap – Rota – (Needs assessment)
  254. 254. Compassionate Community Networks Project • Issues – Referrals
  255. 255. Compassionate Community Networks Project • Issues – Referrals • IPU discharge planning?
  256. 256. Compassionate Community Networks Project • Issues – Referrals • IPU discharge planning? • HCNS agreement?
  257. 257. Compassionate Community Networks Project • Issues – Referrals • IPU discharge planning? • HCNS agreement? • Routine?
  258. 258. Compassionate Community Networks Project • Issues – Referrals • IPU discharge planning? • HCNS agreement? • Routine? • Criteria?
  259. 259. Compassionate Community Networks Project • Issues – Referrals • IPU discharge planning? • HCNS agreement? • Routine? • Criteria? • Early?
  260. 260. Compassionate Community Networks Project • Issues – Referrals • IPU discharge planning? • HCNS agreement? • Routine? • Criteria? • Early? • Explanation?
  261. 261. Compassionate Community Networks Project • Issues – Mentor (CC) retention • Franchising
  262. 262. Compassionate Community Networks Project • Issues – Mentor (CC) retention • Franchising • ‘Training’?
  263. 263. Compassionate Community Networks Project • Issues – Mentor (CC) retention • Franchising • ‘Training’? • Carer’s carer versus Network animator? Mentor (CC) Signpost Animates Listen
  264. 264. Compassionate Community Networks Project • Issues – Mentor (CC) retention • Franchising • ‘Training’? • Carer’s carer versus Network animator? Mentor (CC) Signpost Animator Listen
  265. 265. Compassionate Community Networks Project • Issues – Mentor (CC) retention • Franchising • ‘Training’? • Carer’s carer versus Network animator? • Complexity? Mentor (CC) Signpost Animator Friend Listen
  266. 266. Conclusion – compassionate-community- practitioners-day-registration- 11658523959 September 19th 2014 WESTON HOSPICECARE & HELPTHE HOSPICES –!about1/c1f7j 11th – 16th May 2015 4th INTERNATIONAL PUBLIC HEALTH & PALLIATIVE CARE CONFERENCE – PUBLIC HEALTH & PALLIATIVE CARE INTERNATIONAL (PHPCI - 2014) All health services should have: (1) a population health approach involving education and community development; (2) a primary health care approach involving non-specialist front line workers; (3) a tertiary approach involving specialists and inpatient facilities. Palliative care has emphasised tertiary approaches, with primary health care in evidence in some places . A population health approach is under- developed, yet has the most potential to enhance the quality of life and sense of well being of the widest number of people in dying and in loss. Adapted from PHPCI
  267. 267. Delivering the Six Steps to Success Programme: challenges and strategies for success
  268. 268. Launched to all care homes in locality 35 care homes registered - up to 5 champions per home Four half day teaching sessions each month Four half day support sessions each month Final portfolio assessment Developed session together The Initial Plan Two mandatory sessions each month
  269. 269. The Challenges Retention Recruitment DNA rate Policy development Development time Portfolio development Sustainability Audit Changes
  270. 270. What we did! Give resources to use in practice Take control and stay positive!!!!!!!!!! Session to commissioners and council inspectors One step session per month One-to-one each month on portfolio development Smaller groups - 2 champions Representative if champion can’t attend Changed order - step 4 first with manager Cover induction at Launch Set expectations Charge for catch up session Charge if DNA mandatory session Two mandatory sessions/month No additional dates until all full Involve manager if concerned Simplified audit tool Remind, remind, remind Workbook for staff Care home forum Support with annual audit and action plan Stand alone sessions for those who can’t commit Six Steps Taster sessions