Die well

Getting the best outcomes possible for people towards the end of life

In 2019 local people agreed on ten priorities for the end of life care. We call these the ‘Outcomes that Matter.’

The Alliance is committed to working together to achieve these outcomes as best as possible with the resources available for people in the last year of life in north east Essex.  They are:

  1. To identify and recognise people in the last 12 months of life
  2. To inform people thought to be within the last 12 months of life and their families of the likelihood of death within the next 12 months sensitively and honestly
  3. To elicit and record people’s preferences for care during the last 12 months of life
  4. To respect people’s preferences for care during the last 12 months of their life
  5. To ensure people’s preferences for care are accessible to all parts of the health and social care system/end-of-life-care system
  6. To treat people at end of life as individuals, with dignity, compassion and empathy
  7. To control pain and manage symptoms for people during the last 12 months of life
  8. To minimise inappropriate, unnecessary and futile medical intervention during the last 12 months of people’s life
  9. To ensure that people at end of life have equitable access to flexible 24/7 end-of-life care services irrespective of the place of care or the organisation/s providing care
  10. To provide support to the families and other carers during and after their loved one’s end of life


Why this is important in NE Essex?

Most people at the end of life wish to be cared for outside of an acute hospital and yet 46% of local people die there each year.

An audit of hospital deaths in our local acute trust ESNEFT (East Suffolk and North Essex Foundation Trust) during 2018 showed that many deaths in hospital could have been avoided if people could access care in a place of preference such as the hospice, community hospital, care home or people’s own home.

National strategy recommends that people are identified in a timely fashion as they approach the end of life in order that they may be offered advance care planning, carer support, coordinated care, optimal symptom control, as well as anticipatory management of future symptoms and care in their place of preference.

Accounting for Value report

A report was written in early 2020 that looked at the way end of life resources are funded in north east Essex. This highlighted that there is a great deal of opportunity for reinvestment in this area. Those people involved in the Die Well domain want to realise this opportunity, to ensure that individuals really do have choice at the end of their life. More information on this report can be found via this link.

Domain - Die well

The End of Life Board

The Board is chaired by Dr Karen Chumbley, Alliance Lead for EoL care.

Photo of Karen Chumbley

Karen has been a GP in North East Essex for nearly 20 years and for 5 years was the Clinical Director for St Helena. Karen is the Clinical Lead for the My Care Choices Register, an electronic database where people can record their priorities for future care, including at  the end of life, to support them to receive care in line with their preferences.

Who are the member organisations on the Board?

The My Care Choices Register

The My Care Choices Register is a secure database where people can record their priorities for future care, which can be shared with health and social care professionals that care for them.

The elephant in the room with the My Care Choices logo

People who record and share their priorities are more likely to receive care in line with their preferences. More information about My Care Choices can be found here:  My Care Choices website

From April 2021 it will be possible for people on the My Care Choices register to give feedback on their care via a regular mobile phone text survey. This feedback will enable us to learn where services are working well and where they need to be improved. There will be an area on the My Care Choices register to consent to be contacted for this survey, and once consent and a mobile phone number has been given, the person will receive monthly text survey questions on issues such as empathic communication, symptom control, carer support and dignity.   Flyers to promote this survey can be found here - flyer for patients, colleague flyer.

Data dashboard

One project the Board has been working on is a data dashboard, to drive forward improvements in end of life care across our community.  How people die is important; we want people to have the best possible outcomes in the last year of life.

In this short video, Dr Karen Chumbley explains about the dashboard in more detail: 

Useful documents & information for members of the public

Useful documents for professionals working in end of life - click here

Community of Practice - session recordings

Clinicians across North East Essex come together regularly to share learning on Palliative and End of Life care. Presentations from recent sessions can be found below.  If you are a health or social care professional interested in joining the Community of Practice please email kchumbley@sthelena.org.uk

When you click on the links below, you will be taken to St Helena's YouTube channel.

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