Joint Forward Plan Appendix 11

Appendix 11: Detailed Live Well Domain Plans – Die Well

Read the appendix as HTML web text or download as a PDF.

1.1 Die Well – Giving individuals nearing end of life choice around their care

1.1.1 End of Life

Why is this important for people in Suffolk and North East Essex?

Nationally there are six ambitions for end of life and palliative care. The SNEE programmes and work streams are aligned to these ambitions and form the core basis of all our projects:

  • each person is seen as an individual
  • each person get fair access to care
  • maximising comfort and wellbeing
  • care is co-ordinated
  • all staff are prepared to care
  • each community is prepared to help

The ICB will meet the new obligations relating to Palliative and End of Life Funding as specified in the Health and Care Act.

What do we know about people’s local experiences?

End of Life care will impact everyone in SNEE at some time, including those approaching the end of their lives, those that care for them and those who are bereaved.

Over 10,000 people in SNEE are in the last year of their life and we wish to ensure that over this time they and those who care for them have the best and most equitable care and support from the resources we have available.

How we plan to make a difference

A consultation with the public and with health and social care teams has identified three overarching priorities:

  • the timely identification of the people who are approaching the end of their lives, communicating this with them and those who are important to them with sensitivity and honesty
  • the eliciting, recording, and supporting of people’s preferences for care in the last phase of life ensuring these are accessible to all parts of the health and social care system
  • the treatment of people at the end of life equitably as individuals, with dignity, compassion, and empathy, controlling symptoms 24 hours a day

This plan has been driven and informed by patient and public engagement, local Alliance Health and Wellbeing partners, local and regional stakeholder planning and learning groups, complaints and compliments, clinical audit outcome reviews and national strategy.

Timely identification of people approaching the end of life, communicating this with them and those who are important to them with sensitivity and honesty.

Timely identification of people approaching the end of life allows for conversation, planning and prioritisation. It is a national, regional and local priority that we shall achieve by delivering education to clinical staff, using prognostication tools and frailty scores to allow identification of those who may be entering the last phase of life and to offer optimal care planning. We will offer education and training to clinicians across the system to encourage high quality conversations about the last phase of life and use surveys to assess whether the quality of these conversations is satisfactory and equitable.

Reducing unnecessary stress of navigating the system by providing a single portal (where possible) where our people, carers and professionals can access information on the range of services and support available.

Eliciting, recording, and supporting people’s preferences for care in the last phase of life ensuring these are accessible to all parts of the health and social care system.

Each person approaching the end of their life should be offered an opportunity to share what matters to them most and have their care delivered to enable these preferences. Each Alliance currently has its own system for recording these priorities in a personalised care plan. We shall work together across the system towards an equitable system for recording these advance care plans and sharing them digitally. We shall also roll out the Recommended Summary Plan for Emergency Care and Treatment (ReSPECT) process across SNEE to support holistic personalised care planning.

By supporting advance care planning, care coordination and care provision in the community we will enable people to die at home if this is consistent with their wishes. We will develop current virtual ward services addressing inequalities for people in the last phase of life.

The Outcomes Based Accountability Model – Working together with the community it serves, the SNEE ICB aims to deliver personalised and coordinated care centred around what is important to each person. We will take a population outcomes-based accountability approach focused on delivering the ten priorities of end-of-life care that have been developed in consultation with our community. We will continue to review pathways for the benefit of our people to enable more people to be cared for at home or in the place of their preference and identify the opportunities and resources required to realise this. We will continue the value improvement model launched in North East Essex continuing to demonstrate how better outcomes can be achieved for people at the end of life by investing in community services allowing a redistribution of future resources from acute to community care.

Treating people at the end of life equitably as individuals, with dignity, compassion, and empathy, controlling symptoms 24 hours a day.

We will develop the health and social care workforce supporting recruitment, education, and training. The three hospices within SNEE and the Universities of Suffolk and Essex will collaborate to offer a highquality education covering palliative and end of life care across the system. We will work together to support families who wish to be able to administer medications within the home to enhance timely symptom control. We will offer education to colleagues working in care homes as well as Palliative and End of Life Care accreditation.

The ICB will build on the current models of 24-hour support and care coordination for people at the end of life, learning from each of the Alliance services and addressing service inequality. We shall collaborate with the ambulance services to support appropriate and timely urgent care in the community.

We will continue to work towards making the best use of the resources that we have, using data collection and analysis to identify and address areas for improvement and inequalities that need to be addressed. In doing so, we will ensure our strategy continues to align with the national ambitions for end-of-life care.

Within each service and addressing each priority we will focus on equity of access across all parts of our community ensuring that whatever age, ethnicity, diagnosis, gender, mental health condition or level of deprivation, care is personalised and equitable. Co-production with our community will sit at the heart of our work.

Compassionate Communities: End-of- life care sits within the heart of our community. Each of the Alliance areas has a programme of compassionate community development, raising awareness of death, dying and bereavement and enabling the community to support its members with end-of-life needs.

Each Alliance will work collaboratively to increase social prescribing and support the five pillars of personalised care for people at the end of life and to work towards a Compassionate Charter within SNEE.

We shall work together with carer support networks, the hospices, and the hospitals to improve support for the carers/families of people at the end of life. We shall increase the number of end-of-life volunteers and the range of support offered by these teams. We shall offer financial and practical advice to carers as well as peer support and education to support them within their caring role.

Bereavement Support: We will offer an equitable bereavement service across SNEE, collaborating between organisations to ensure an appropriate range of bereavement services to address people’s needs.

Children and young people: We will create an ICS strategy, supported by a wide professional network, for palliative and end of life care for children and young people. We will learn and share successes within services to address inequalities of care and develop an equitable service for those in transition from paediatric to adult palliative care services.

We will know we are making a difference because we will see:

  • collaboration in this financial year to measure the baseline of how many people are being identified in the last year of life in SNEE
  • incremental annual growth of 5% in the number of people who are identified as being in the last phase of life
  • people’s satisfaction measured with the quality of the conversations by survey and show an annual improvement in the results
  • the achievement of this priority measured by recording the number of people who have recorded an advance care plan, and the equity of access across the community as well as the access to these plans for health and social care professionals to support coordinated care. We shall ensure that residents of care homes are able to access advance care planning and care coordination services
  • an annual improvement from the baseline figure identified in 2023
  • the extent to which care was coordinated around people’s priorities by recording what proportion of people are cared for in their preferred place and by surveying people as to whether they received the right care for their needs and show an annual incremental improvement
  • the dignity and symptom control that people experience measured by survey
  • the patient and carer survey system currently running in North East Essex continuing this year and we will develop an equivalent survey system across Suffolk
  • that we have made a difference by demonstrating annual improvements in outcome feedback results

Quote: ‘This JFP gives us the opportunity to improve dignity and choice for people approaching the last phase of life in Suffolk and North East Essex. It focuses on what people have told us is important to them and allows us to build on what is working well, learning together to address inequalities.’

Dr Karen Chumbley MBBS FRCGP MSc – SNEE ICS Clinical Lead for End-of-Life care

Case Studies

Compassionate communities

Paddy was identified as likely to be entering the last year of his life. His GP matched him with a local compassionate companion volunteer who had been trained to support people by End-of-Life Doula UK. The companion supported Paddy to record his wishes for his end-of-life care and communicate this to his family and health care professionals. She also supported Paddy emotionally and practically. As a result of this, Paddy’s next of kin and health care partners were able to work together to support Paddy’s wishes and, Paddy died in his own home. His family and health care professionals were reassured that his end-of-life wishes were respected.

Paddy was a great advocate of the compassionate companion, and his legacy has continued with Paddy designing a daisy emblem which is now the logo brand for the scheme. The pins are given to all companions once they have completed the training. Paddy also has a starring role in an informational video for compassionate companions.

Addressing inequalities in access to advance care planning

The End-of-Life Care data dashboard was developed in 2021 in North East Essex. It demonstrated that access to advance care planning was inequitable in our community with people living in deprived areas having lower access, with only 40% having an advance care plan before they died compared to an average across North East Essex of 48%.

Identifying this inequality allowed the North East Essex Alliance End of Life group to commission a project offering advance care planning to people identified as approaching the end of life within more deprived areas. Over the first 8 months of this project the chance of being able to create an advance care plan for people in the most deprived areas of our community rose from 40-45% reducing the identified inequality.


St Elizabeth Hospice has been developing Zest since 2015, working closely with children’s hospice services to ensure young adults have a smooth transition into adult care. Zest supports young adults aged 14 and upwards with progressive and incurable illnesses to ensure that they get the specialist care, tailored treatment and services they need to be able to enjoy life to the full.

Through this specialist care, young adults with challenging conditions are able to fulfil their aspirations, whether this is to manage their symptoms, access opportunities in the community and reduce loneliness by enabling them to meet and have fun with friends.

Short break respite weekends are available to provide the independence of a sleepover. Every Friday is a Zest Day at St Elizabeth Hospice which provides social interaction with opportunities for music therapy and activities such as Boccia. The Zest service has been co-produced with the young adults themselves and their families, and the activities programme remains driven by the interests of the group.

Page last modified: 7 August 2023
Next review due: 7 February 2024