East Suffolk and North Essex NHS Foundation Trust
NHS / Health Body
Noted
No AI summary available.
View full response
Dear Mr Horstead
REGULATION 28 TO PREVENT DEATHS - INQUEST TOUCHING UPON THE DEATH OF JANET SLYVIA DANIELS WHICH CONCLUDED ON 31 JANUARY 2026
I write on behalf of ESNEFT in response to the Prevention of Future Deaths Report dated 02 February 2026, issued pursuant to paragraph 7, Schedule 5 of the Coroners and Justice Act 2009 and Regulations 28 and 29 of the coroners (Investigations) Regulations 2013.
The concerns identified relate to a risk that patients and family members may not be appropriately consulted with respect to the basis for and timing of end-of-life care and, accordingly, that withdrawal of active treatment may be prematurely undertaken.
The Trust fully recognises the importance of patient and family involvement in decisions relating to the withdrawal of active treatment and commencement of end-of-life care plans.
The Trust remains committed to continuous improvement in the quality and safety of care provided to patients and their families.
The information presented below is intended to describe the actions which have been taken/are being taken by the Trust to enhance governance arrangements and patient safety safeguards to mitigate the risk of future deaths and address the concerns you have raised.
DEFINITION OF PALLIATIVE CARE
The Hospital Palliative Care Team are a team of Palliative Medicine Consultants and Clinical Nurse Specialists who provide an inpatient hospital advisory service, working alongside treating teams and co-ordinating with community services.
Palliative care is often provided alongside active treatment and even potentially curative treatment at times. The involvement of the Palliative Care team does not mean that someone is being treated as being in the last days of life.
End of Life Care (EOLC) is defined by GMC as care in the last year of life; and care in the last days of life centres around support for the dying person and those important to them in the last hours and days of life. The individualised care plan for the last days of life (ICPLDL) is an individualised plan of care, enabling us to support the dying person and those who are important to them when they approach the last days of life. This focuses on symptom control, psychosocial, spiritual and carer support.
INVESTIGATION AND GOVERNANCE REVIEW
The Trust has undertaken an extensive Governance review of policies and procedures which has led to:
A review of the Trust’s End of Life Care Policy and associated procedures A review of documentation and escalation processes A review of the training which is offered throughout the Trust The delivering of a presentation at the Trust wide Multidisciplinary Team half day meeting on 19 March 2026, which included recognising dying, communication and Mental Capacity Assessments (MCA) and Lasting Power of Attorney (LPA). A review of the case at the Medicine and Care of the Elderly Governance half day on 11 February 2026. A review the case and EOL policies at the End-of-Life Steering Group
ACTIONS IMPLEMENTED
To strengthen governance oversight, the Trust has implemented the following measures:
Policy Revision The Trust Palliative Care Guidance issued in April 2025 has been amended to provide clearer guidance as to which members of staff can make the decision to commence the EOLC plan. Furthermore, the guidance now provides more information on commencing the ICPLDL and recognising dying.
A new standalone guide has been drafted specifically for care in the last days of life, focusing on recognising dying, communication (how to have sensitive and honest conversations with patients and their families) and starting the ICPLDL. Terms to be avoided when discussing EOLC with patients and their family have been included. The Trust is aiming for completion and Trust wide distribution in May 2026.
The Trust e-learning for EOLC is being aligned with the updated EOLC policy and a new additional ‘Hospital Care in the Last Days of Life Guidance’. This guidance includes Epic (The Trust’s new Electronic Patient Record) processes, clearer wording on ICPLDL and terms to be avoided when discussing EOLC with patients and their family. Again, the Trust is aiming for completion by May 2026.
EOLC conversations and Documentation of the same The updated Palliative Care Guidance now provides detail on mandatory areas of discussion with patients and family and documentation requirements in respect of EOLC, escalations and reversibility of conditions.
The Trust utilises the NHS ‘ReSPECT’ (Recommend Summary Plan for Emergency Care and Treatment) form. This document is filled out collaboratively by the patient, their family (where appropriate) and a healthcare worker. It details what is important to the patient when it comes to decision making about their care and treatment and is particularly relevant for patients with complex care needs and for people who are nearing the end of their lives. It is
designed to assist healthcare professionals to undergo thorough conversations with the patient and their family. The ReSPECT form has now been embedded into the patient dashboard on Epic, so that is easy to access, complete and refer to when care plans are being made.
Additionally, the Trust uses the ‘What matters to me’ (WMTM) approach to patient care conversations. This is an NHS approach which focuses on the understanding patient priorities, values, and needs to guide personalised care and improve wellbeing. WMTM enables patients to document their priorities, using tolls like the “About Me: What Matters to Me” form, which captures information about: Key people and relationships Communication preferences Daily routines and wellbeing Strengths, skills and goals Support needs and concerns Preferences for care and treatment decisions. The completed form has also been added to the Epic dashboard where it used to support and develop personalised care plans. The form can be completed independently, with family and/or healthcare staff.
Patients and Family members are provided with a copy of the ‘Last Days of Life’ leaflet during the first stage of EOLC planning/discussions. The leaflet explains what relatives can expect when someone is thought to be in the last few days of life, and how hospital staff will support both the patient and those important to them. The leaflet provides the following information: What to expect physically during the last days of life Comfort and care Emotional and spiritual support the Trust can provide Visiting and practical support What can occur during the final moments What to expect after death Guidance on organ and tissue donation
Introduction of new Electronic Patient Record (Epic)
Since October 2025, the Trust has implemented a new electronic patient record system, Epic. The Trust has consolidated a vast number of separate systems into one sole system that encompasses all the patient notes. This provides unified, one record per patient for all clinical and administrative data. The impact for patients is as follows: Safer care Better appointment coordination Access via MyChart Improved outcomes Less repetition A lifelong record Secure storage Better communication Streamlined care MyChart app for health record visibility, including a proxy access option
Epic makes it easier for staff to access the ‘How to start ICPLDL’ guidelines via the Epic patient dashboard. Additionally, when a clinician commences the care plan it is now a mandatory requirement within Epic (which cannot be bypassed) for that clinician to document their details. This creates a sole point of reference.
There is a section on Epic where the LPA can be recorded and uploaded. Mental capacity and best interest decisions are recorded in the same section. These are accessible on the patient’s dashboard on Epic.
A medical safeguarding lead has now been appointed to support safeguarding and mental capacity within the Trust.
Communication and Education The Trust has carried out further education and upskilling on MCA and best interest decision making. The Trust continues to deliver on-going face to face education, e-learning and communication skills (this includes how and when to use the ReSPECT forms and WMTM forms). These training sessions have reinforced expectations regarding escalation, documentation, and multidisciplinary communication in EOLC decisions.
The Trust focussed on mental capacity and best interest decision making at the January 2026 Medicine and Care of the Elderly Governance half day. Following on from the writing and sharing of ‘A brief guide to Mental Capacity Act’ at the end of 2025.
The Trust has delivered and continues to deliver Mental Capacity Act training for staff on all wards and has booked additional Mental Capacity Act seminars at the local university.
Band 6s and Band 7s have attended advanced communications training and all staff have attended MCA and Deprivation of Liberty (DOLs) training sessions.
Audit and Ongoing Monitoring To ensure sustained compliance the Trust audits and monitors the following: The Trust completes a monthly data collection for the accountability framework. ICPLDL commencements are measured on this audit at ward, division and Trust level. Any identified non-compliance is subject to review and appropriate remedial action through divisional governance processes. The Trust hopes that the above information demonstrates the actions being implemented by the Trust and adequately responds to your concerns.
I would like to personally extend our sincerest condolences to Janet’s family for their loss.
If I can be of further assistance, please do not hesitate to contact me.
REGULATION 28 TO PREVENT DEATHS - INQUEST TOUCHING UPON THE DEATH OF JANET SLYVIA DANIELS WHICH CONCLUDED ON 31 JANUARY 2026
I write on behalf of ESNEFT in response to the Prevention of Future Deaths Report dated 02 February 2026, issued pursuant to paragraph 7, Schedule 5 of the Coroners and Justice Act 2009 and Regulations 28 and 29 of the coroners (Investigations) Regulations 2013.
The concerns identified relate to a risk that patients and family members may not be appropriately consulted with respect to the basis for and timing of end-of-life care and, accordingly, that withdrawal of active treatment may be prematurely undertaken.
The Trust fully recognises the importance of patient and family involvement in decisions relating to the withdrawal of active treatment and commencement of end-of-life care plans.
The Trust remains committed to continuous improvement in the quality and safety of care provided to patients and their families.
The information presented below is intended to describe the actions which have been taken/are being taken by the Trust to enhance governance arrangements and patient safety safeguards to mitigate the risk of future deaths and address the concerns you have raised.
DEFINITION OF PALLIATIVE CARE
The Hospital Palliative Care Team are a team of Palliative Medicine Consultants and Clinical Nurse Specialists who provide an inpatient hospital advisory service, working alongside treating teams and co-ordinating with community services.
Palliative care is often provided alongside active treatment and even potentially curative treatment at times. The involvement of the Palliative Care team does not mean that someone is being treated as being in the last days of life.
End of Life Care (EOLC) is defined by GMC as care in the last year of life; and care in the last days of life centres around support for the dying person and those important to them in the last hours and days of life. The individualised care plan for the last days of life (ICPLDL) is an individualised plan of care, enabling us to support the dying person and those who are important to them when they approach the last days of life. This focuses on symptom control, psychosocial, spiritual and carer support.
INVESTIGATION AND GOVERNANCE REVIEW
The Trust has undertaken an extensive Governance review of policies and procedures which has led to:
A review of the Trust’s End of Life Care Policy and associated procedures A review of documentation and escalation processes A review of the training which is offered throughout the Trust The delivering of a presentation at the Trust wide Multidisciplinary Team half day meeting on 19 March 2026, which included recognising dying, communication and Mental Capacity Assessments (MCA) and Lasting Power of Attorney (LPA). A review of the case at the Medicine and Care of the Elderly Governance half day on 11 February 2026. A review the case and EOL policies at the End-of-Life Steering Group
ACTIONS IMPLEMENTED
To strengthen governance oversight, the Trust has implemented the following measures:
Policy Revision The Trust Palliative Care Guidance issued in April 2025 has been amended to provide clearer guidance as to which members of staff can make the decision to commence the EOLC plan. Furthermore, the guidance now provides more information on commencing the ICPLDL and recognising dying.
A new standalone guide has been drafted specifically for care in the last days of life, focusing on recognising dying, communication (how to have sensitive and honest conversations with patients and their families) and starting the ICPLDL. Terms to be avoided when discussing EOLC with patients and their family have been included. The Trust is aiming for completion and Trust wide distribution in May 2026.
The Trust e-learning for EOLC is being aligned with the updated EOLC policy and a new additional ‘Hospital Care in the Last Days of Life Guidance’. This guidance includes Epic (The Trust’s new Electronic Patient Record) processes, clearer wording on ICPLDL and terms to be avoided when discussing EOLC with patients and their family. Again, the Trust is aiming for completion by May 2026.
EOLC conversations and Documentation of the same The updated Palliative Care Guidance now provides detail on mandatory areas of discussion with patients and family and documentation requirements in respect of EOLC, escalations and reversibility of conditions.
The Trust utilises the NHS ‘ReSPECT’ (Recommend Summary Plan for Emergency Care and Treatment) form. This document is filled out collaboratively by the patient, their family (where appropriate) and a healthcare worker. It details what is important to the patient when it comes to decision making about their care and treatment and is particularly relevant for patients with complex care needs and for people who are nearing the end of their lives. It is
designed to assist healthcare professionals to undergo thorough conversations with the patient and their family. The ReSPECT form has now been embedded into the patient dashboard on Epic, so that is easy to access, complete and refer to when care plans are being made.
Additionally, the Trust uses the ‘What matters to me’ (WMTM) approach to patient care conversations. This is an NHS approach which focuses on the understanding patient priorities, values, and needs to guide personalised care and improve wellbeing. WMTM enables patients to document their priorities, using tolls like the “About Me: What Matters to Me” form, which captures information about: Key people and relationships Communication preferences Daily routines and wellbeing Strengths, skills and goals Support needs and concerns Preferences for care and treatment decisions. The completed form has also been added to the Epic dashboard where it used to support and develop personalised care plans. The form can be completed independently, with family and/or healthcare staff.
Patients and Family members are provided with a copy of the ‘Last Days of Life’ leaflet during the first stage of EOLC planning/discussions. The leaflet explains what relatives can expect when someone is thought to be in the last few days of life, and how hospital staff will support both the patient and those important to them. The leaflet provides the following information: What to expect physically during the last days of life Comfort and care Emotional and spiritual support the Trust can provide Visiting and practical support What can occur during the final moments What to expect after death Guidance on organ and tissue donation
Introduction of new Electronic Patient Record (Epic)
Since October 2025, the Trust has implemented a new electronic patient record system, Epic. The Trust has consolidated a vast number of separate systems into one sole system that encompasses all the patient notes. This provides unified, one record per patient for all clinical and administrative data. The impact for patients is as follows: Safer care Better appointment coordination Access via MyChart Improved outcomes Less repetition A lifelong record Secure storage Better communication Streamlined care MyChart app for health record visibility, including a proxy access option
Epic makes it easier for staff to access the ‘How to start ICPLDL’ guidelines via the Epic patient dashboard. Additionally, when a clinician commences the care plan it is now a mandatory requirement within Epic (which cannot be bypassed) for that clinician to document their details. This creates a sole point of reference.
There is a section on Epic where the LPA can be recorded and uploaded. Mental capacity and best interest decisions are recorded in the same section. These are accessible on the patient’s dashboard on Epic.
A medical safeguarding lead has now been appointed to support safeguarding and mental capacity within the Trust.
Communication and Education The Trust has carried out further education and upskilling on MCA and best interest decision making. The Trust continues to deliver on-going face to face education, e-learning and communication skills (this includes how and when to use the ReSPECT forms and WMTM forms). These training sessions have reinforced expectations regarding escalation, documentation, and multidisciplinary communication in EOLC decisions.
The Trust focussed on mental capacity and best interest decision making at the January 2026 Medicine and Care of the Elderly Governance half day. Following on from the writing and sharing of ‘A brief guide to Mental Capacity Act’ at the end of 2025.
The Trust has delivered and continues to deliver Mental Capacity Act training for staff on all wards and has booked additional Mental Capacity Act seminars at the local university.
Band 6s and Band 7s have attended advanced communications training and all staff have attended MCA and Deprivation of Liberty (DOLs) training sessions.
Audit and Ongoing Monitoring To ensure sustained compliance the Trust audits and monitors the following: The Trust completes a monthly data collection for the accountability framework. ICPLDL commencements are measured on this audit at ward, division and Trust level. Any identified non-compliance is subject to review and appropriate remedial action through divisional governance processes. The Trust hopes that the above information demonstrates the actions being implemented by the Trust and adequately responds to your concerns.
I would like to personally extend our sincerest condolences to Janet’s family for their loss.
If I can be of further assistance, please do not hesitate to contact me.