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Transforming end of life care in
acute hospitals [established and
wannabee sites!]
Maggie Morgan Cooke
Jennifer Clemo
Anit...
‘Transform Programme’ for acute trusts
• Provides hospitals with a comprehensive service
improvement framework and improve...
Key enablers:
• Advance Care Planning (ACP)
Identifying and recording a persons wishes and outcomes
of any advance care pl...
Key enablers:
• 5 new Priorities for Care - possibility that a person may die within the
coming days and hours is recognis...
What opportunities are there for you as
part of this programme?
• End of Life Care Facilitators and Champions Network- 850...
More opportunities
• Massive Open Online Course [MOOC]
• Website
• Telephone Coaching Support
• Diagnostic visit around wh...
Welcome to the
NHS Transformathon
Let’s all connect, share and learn to make
the NHS better.
7
@theedgenhs 8
What is the NHS Transformathon?
We all want the NHS to be great.
We can help make it better by sharing and l...
@theedgenhs
What is the Transformathon?
• Its starts at 16.00 GMT on Wednesday 27 January and
ends at 16.00 GMT on the Thu...
@theedgenhs
What type of content will be featured?
10
We want the NHS Transformathon to provide people with
food for thoug...
@theedgenhs 11
Find out more and join the
programme at:
theedge.nhsiq.nhs.uk/transformathon
A national framework for local
action
Six ambitions
Each person is seen as an individual
I , and the people important to me, have opportunities to have honest,
...
Six ambitions
Care is coordinated
I get the right help at the right time from the right people. I have a
team around me wh...
“I can make the last stage of my life
as good as possible because
everyone works together
confidently, honestly and
consist...
Improving the quality of end of 
life care in acute hospitals
Building on the Best
Adrienne Betteley
Anita Hayes
Chris Sut...
Macmillan’s current activities are focussed on four 
core areas
Existing assets and people Advance Care Planning
Partnersh...
What is NCPC?
• The umbrella charity for palliative and end of
life care
• Influences government policy
• Supports all sec...
The Dying Matters Coalition
Dying Matters was set up by the National Council for
Palliative Care, the umbrella charity for...
Partnership Initiative
• NCPC & Macmillan Cancer Support
• NHSIQ, NHSE & TDA
• Hospitals 
• Aiming for;
‐ Continual Qualit...
The challenge
UK wide
quality improvement
within a two and a half year timeframe 
learning from across four nations 
flexi...
Opportunity for improvement
% people who die in hospital
Percentage of people dying in 
hospital 2010‐12 
Marie Curie data atlas. 2010‐
2012. Copyrigh...
82,060,422 outpatient appointments 
in 1 year in England [5]
10% of these were attended by patients aged 80+
36% of the We...
"Those with experience
of relatives dying in
hospitals report
the medical support is
not as good as expected,
while person...
What should the priorities be? 
Patient focused outcomes
Clinicians/Funders/ User & Carer 
engagement
Logic Modelling appr...
‘A logic model’ and shared 
learning and insights
Aim:
2 stones 
lighter!
Energy Out
Energy In
Walk daily
commute
Stairs not 
lift
Exercise
Reduce 
alcohol 
intake
Eat Less...
Transforming End of Life Care in 
Acute Hospitals: driver diagram 
Long List Priorities 
• Hospital outpatients: advance care planning, 
anticipatory planning and co‐ordination
• Emergency ...
Continued.........
• Shared decision making on treatment options 
• Improve pain and symptom management 
• Bereavement and...
Short List to date
• OPD – opportunity for ACP etc
• Communication on handovers to GP / 
Community
• Pain & Symptom Manage...
Your Contribution
• Give us your feedback on Priorities
• Share your learning what works / what 
doesn’t
• Any resources y...
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Transforming End of Life Care in Acute Hospitals AM Workshop 6: Helping you to ‘Transform’ your local services, open to wannabee, new or established organisations participating in the Transform programme. Find out about the Transformathon

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Transforming End of Life Care in Acute Hospitals AM Workshop 6: Helping you to ‘Transform’ your local services, open to wannabee, new or established organisations participating in the Transform programme. Find out about the Transformathon… you will hear it here first! by Maggie Morgan-Cooke, Jennifer Clemo, NHS England and Anita Hayes, The National Council for Palliative Care

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Transforming End of Life Care in Acute Hospitals AM Workshop 6: Helping you to ‘Transform’ your local services, open to wannabee, new or established organisations participating in the Transform programme. Find out about the Transformathon

  1. 1. Transforming end of life care in acute hospitals [established and wannabee sites!] Maggie Morgan Cooke Jennifer Clemo Anita Hayes Maggie.morgan-cooke@nhsiq.nhs.uk
  2. 2. ‘Transform Programme’ for acute trusts • Provides hospitals with a comprehensive service improvement framework and improvement tools to help you to ensure consistency, reliability, safety and effectiveness by implementation of 5 key enablers in a ‘How to’ guide • Supports Trusts to deliver compassionate EoLC of the highest quality, which is accessible to all who need it across NHS England • Over 80 (51%) enrolled in the programme - interest from further 6 by December 2015
  3. 3. Key enablers: • Advance Care Planning (ACP) Identifying and recording a persons wishes and outcomes of any advance care plan • Rapid End of Life Transfer Developing individual plans of care for anticipatory management for a predictable clinical event • The AMBER care bundle A tool and package of interventions supporting teams to identify and respond to end of life care needs when their recovery is uncertain.
  4. 4. Key enablers: • 5 new Priorities for Care - possibility that a person may die within the coming days and hours is recognised and communicated clearly, decisions about care are made in accordance with the person’s needs and wishes, and these are reviewed and revised regularly. • Sensitive communication takes place between staff and the person who is dying and those important to them. • The dying person, and those identified as important to them, are involved in decisions about treatment and care. • The people important to the dying person are listened to and their needs are respected. • Care is tailored to the individual and delivered with compassion – with an individual care plan in place • EPaCCs- Electronic Palliative Care Co-ordination System Promoting choice by helping deliver 100% national coverage of EPaCCS and aligning with the National Information Board agenda
  5. 5. What opportunities are there for you as part of this programme? • End of Life Care Facilitators and Champions Network- 850+ members and still growing! • Creation and distribution of the monthly newsletter- providing over 4000 contacts up to date news, information on resources, events • Transforming End of Life Care ‘Share and Learn’ webinars as a key feature of our learning and virtual networking offer
  6. 6. More opportunities • Massive Open Online Course [MOOC] • Website • Telephone Coaching Support • Diagnostic visit around what is important to you
  7. 7. Welcome to the NHS Transformathon Let’s all connect, share and learn to make the NHS better. 7
  8. 8. @theedgenhs 8 What is the NHS Transformathon? We all want the NHS to be great. We can help make it better by sharing and learning from each other. The NHS Transformathon is an online event bringing global leaders and health and care staff and service users together. It will bring fresh ideas and new perspectives to your screen. Let’s all connect, share and learn.
  9. 9. @theedgenhs What is the Transformathon? • Its starts at 16.00 GMT on Wednesday 27 January and ends at 16.00 GMT on the Thursday 28 January • It’s a free, 24 hour, online event/conference. • It’s a live event. • It will feature change experts, health and care staff, patients and service users. • It will feature people from across the world. • It will feature a mixture of speakers, films, question and answer sessions, debates and discussions. • It will be on a website that most people can access via their computer or mobile, and we will be using YouTube and Google hangouts. 9
  10. 10. @theedgenhs What type of content will be featured? 10 We want the NHS Transformathon to provide people with food for thought that will help them to make change happen and address how change is changing. We also want to bring together people who will share stories of past successes and lessons learnt. We want to feature content that is useful to those working in health and care. The key thread that we will be exploring throughout the 24 hours is: “how is change changing and what does this mean to people working in health and care.”
  11. 11. @theedgenhs 11 Find out more and join the programme at: theedge.nhsiq.nhs.uk/transformathon
  12. 12. A national framework for local action
  13. 13. Six ambitions Each person is seen as an individual I , and the people important to me, have opportunities to have honest, informed and timely conversations and to know that I might die soon. I am asked what matters most to me. Those who care for me know that and work with me to do what’s possible. Each person gets fair access to care I live in a society where I get good end of life care regardless of who I am, where I live or the circumstances of my life. Maximising comfort and wellbeing My care is regularly reviewed and every effort is made for me to have the support, care and treatment that might be needed to help me to be as comfortable and as free from distress as possible.
  14. 14. Six ambitions Care is coordinated I get the right help at the right time from the right people. I have a team around me who know my needs and my plans and work together to help me achieve them. I can always reach someone who will listen and respond at any time of the day or night. All staff are prepared to care Wherever I am, health and care staff bring empathy, skills and expertise and give me competent, confident and compassionate care. Each community is prepared to help I live in a community where everybody recognises that we all have a role to play in supporting each other in times of crisis and loss. People are ready, willing and confident to have conversations about living and dying well and to support each other in emotional and practical ways.
  15. 15. “I can make the last stage of my life as good as possible because everyone works together confidently, honestly and consistently to help me and the people who are important to me, including my carer(s).”
  16. 16. Improving the quality of end of  life care in acute hospitals Building on the Best Adrienne Betteley Anita Hayes Chris Sutcliffe
  17. 17. Macmillan’s current activities are focussed on four  core areas Existing assets and people Advance Care Planning Partnerships and Innovation Influencing • Buildings including palliative day care (20),  palliative inpatient (59), Oncology (40) and  Information Centres (104) • 551 palliative care beds • Approx. 1,700 posts  • L&D offer including face to face courses, e‐ learning and grants • To ensure people approaching the end of life  receive support to die in the place they  choose Pushing for a commitment to  implement free social care at the end  of life (England) Improving healthcare support/services  for people approaching the end of life,  e.g. 24/7 community nursing 
  18. 18. What is NCPC? • The umbrella charity for palliative and end of life care • Influences government policy • Supports all sectors involved in providing, commissioning and people using services • Promotes equity of access to palliative care and good end of life care for all • Key priority-models to support more people people with multiple conditions& dementia • Dying Matters Coalition
  19. 19. The Dying Matters Coalition Dying Matters was set up by the National Council for Palliative Care, the umbrella charity for all those involved in palliative care, to support the 2008 End of Life Care Strategy Our aim is to raise public awareness about the importance of talking more openly about dying, death and bereavement and of making your wishes known Dying Matters has over 32,000 members ranging from health and care organisations, funeral directors, legal and financial organisations and thousands of individual members
  20. 20. Partnership Initiative • NCPC & Macmillan Cancer Support • NHSIQ, NHSE & TDA • Hospitals  • Aiming for; ‐ Continual Quality Improvement ‐ Building on the Best 
  21. 21. The challenge UK wide quality improvement within a two and a half year timeframe  learning from across four nations  flexibly across four nations  best use of all available resource develops service improvement capability  building on success of Transform www.ncpc.org.uk
  22. 22. Opportunity for improvement
  23. 23. % people who die in hospital Percentage of people dying in  hospital 2010‐12  Marie Curie data atlas. 2010‐ 2012. Copyright Marie Curie. 
  24. 24. 82,060,422 outpatient appointments  in 1 year in England [5] 10% of these were attended by patients aged 80+ 36% of the Welsh population had an  outpatient appointment [6] Emergency readmissions within 30 days  are  high xx for patients who had a period of uncertainty during their  inpatient stay who died within 100 days of discharge.   33% of  around 10,000   incidents  related to  discharge in  2012/13 were  due to communication at  handover. England [9] One third of patients die during the one year  follow‐up period. 9.3% of all patients died in  the admission period. 25 Scottish Teaching Hospitals [2] Systematic review showed variation in  home preference estimates ranged  31% to 87% for patients (9 studies),  25% to 64% for caregivers (5 studies),  49% to 70% for the public (4 studies).  [3] Studies included in our efficacy  analysis of advance care planning  were all conducted in an outpatient  setting during scheduled visits. [4] How well pain was relieved during the last three months of life, England, 2013 [7] Around half of the 570,000 people who  die in the UK each year, die in hospital [1] 25% patients who receive ICU / HDU  care are near end of their lives . Around 30k  patients admitted to ICU/HDU in Scotland. Around  16% receive last days of life care in the unit. A further  9% die in a general ward/ post discharge. [8] On average there were  xx  emergency readmissions per  acute hospital in 2011. 
  25. 25. "Those with experience of relatives dying in hospitals report the medical support is not as good as expected, while personal support is poor, but as expected." Sue Ryder, a time and a place[12] 69% of bereaved people whose relative or friend died in a  hospital, rated care as outstanding, excellent or good.  Significantly  lower than hospice (83%), care home (82%) or at home (79%). England,  VOICES‐SF survey 33% reported that the hospital services did not  work well together with GP and other services outside the  hospital. England VOICES‐SF survey  [7] some aspects of the dying  environment as being more  important than physical  location.  [11] Choice  report  More than 73% respondents felt  hospital was the right place for their  friend or relative to die, despite only 3%  of all respondents stating patients  wanted to die in hospital. [7] “Sometimes, it's  the little things that matter, and  that is what you remember.” Expert with lived experience.  [10] While the majority said choice is important, many  said an important consideration was quality. [11] Themes from ombudsman report [13] •Not recognising people are dying, not responding to  need •Poor symptom control  •Poor communication  •Poor care planning (hospitals and GPs liaise) •Delays in diagnosis   Hospital staff received  the lowest proportion always  showing dignity and  respect (58% for  hospital doctors and 51%  for hospital nurses).  [7] Most bereaved people did not  talk to anyone from any support  services since the death, most.  18% said they had not, but  would have liked to. VOICES‐SF 
  26. 26. What should the priorities be?  Patient focused outcomes Clinicians/Funders/ User & Carer  engagement Logic Modelling approach Long List of Priorities to Short List
  27. 27. ‘A logic model’ and shared  learning and insights
  28. 28. Aim: 2 stones  lighter! Energy Out Energy In Walk daily commute Stairs not  lift Exercise Reduce  alcohol  intake Eat Less Pedometer Gym work out 3 days Squash  weekends No pub  weekdays Take packed lunch Low fat  meals Driver Diagrams ‐ weight loss 
  29. 29. Transforming End of Life Care in  Acute Hospitals: driver diagram 
  30. 30. Long List Priorities  • Hospital outpatients: advance care planning,  anticipatory planning and co‐ordination • Emergency care: facilitating the best place of  care for patients • Communication on handover to GP and  services in the community 
  31. 31. Continued......... • Shared decision making on treatment options  • Improve pain and symptom management  • Bereavement and post death care • Sustainability ward and system capability to  sustain improvement
  32. 32. Short List to date • OPD – opportunity for ACP etc • Communication on handovers to GP /  Community • Pain & Symptom Management • Shared Decision making – Patient / family /  clinician 
  33. 33. Your Contribution • Give us your feedback on Priorities • Share your learning what works / what  doesn’t • Any resources you have found helpful • Solutions to barriers • Good Practice examples / case studies

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