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Better end of life care in Sussex thanks to early identification of patients


Better end of life care in Sussex thanks to early identification of patients

Sussex NHS Commissioners provide better support for End of Life (EOL) care thanks to early identification of patients.


A group of CCGs in Sussex, working together as Sussex NHS Commissioners, have introduced a clinically-led collaborative approach for better care planning and coordinating of patient care near the end of life. The partnership approach with clinicians, health care professionals and industry, supports early information sharing and embeds joint-working between general practice, hospices, specialist palliative care and community-based services. Working with Docobo, the team developed a process to deliver a proactive care model, rather than a reactive one. Using and adapting Docobo’s ARTEMUS Risk Profiling digital solution, they were able to allow early identification of those reaching end-of-life (EoL) and who might benefit from earlier support to plan their care.

The project was awarded ‘Highly Commended’ in the 2020 HSJ Value Awards in the IT and Digital Innovation Category.

NHS West Sussex CCG’s Head of Integration, Jacqui Nettleton says: “We believe we have delivered an innovative digital solution to identify people early in their end of life pathway and maximised on the benefits that earlier intervention should deliver for the health economy, patients, their families and carers.”

Key results

This new way of working has improved patient care and the patient experience, as well as producing significant savings by reducing the cost of hospital care by decreasing the number of deaths in hospital, reducing A&E attendances and non-elective admissions. COVID-19 has demonstrated how important it is to plan at an individual level and population level for EoL care.

Key issues in EoL care

Nationally there is an average of three unplanned hospital admissions in the last six months of a patient’s life, and primary and community based EoL care can be fractured and reactive, with care planning often ad hoc and frequently in response to crises. There is also limited access to palliative care and for those who are frail and have long term conditions it is often restricted to the terminal phase and focusses almost exclusively on people with cancer.

It is clinically difficult to identify people who are in the last six to 12 months of life particularity for those with progressive long-term conditions and there is a lack of validated tools to support clinical decision making. However, if initiated earlier, palliative care can have a significant impact on patient experience.

The ‘Planning Your Care’ pilot in Crawley

The team at Crawley wanted to deliver a proactive EoL and palliative care pathway to involve multi-disciplinary teams across primary care, community care and palliative care. The team modified their existing risk stratification tool, Docobo’s ARTEMUS, to identify palliative patients in an earlier phase of their disease trajectory, by applying an EoL algorithm to inform case finding. They then implemented a structured process to triage and proactively plan care in GP practices.

The team wanted to increase the number of patients on the palliative care register with non-malignant disease receiving specialist palliative care. They also wanted to increase the number of patients with a care plan recorded and reduce the number of patients dying in hospital and increase the number of patients dying in their place of preference or usual place of residence, while improving the quality of care for patients at end of life allowing them to have a good death.

Work started with a pilot across four practices with a total population of 30,306, which ran for 10 months. The project reviewed 299 patients, which equates to approximately 10% of the pilot population. There were 200 patients on the caseload (0.65% of pilot population) and 27 deaths from the Planning Your Care (PYC) Caseload (0.09% of pilot population). The oldest patient on the caseload was 99 and the youngest 48. Based on the ARTEMUS risk stratification tool 46% of these had a risk of admission below 50%. Patients have an E­frailty risk score ranging 0.56 to 0.03.

Patients have had between one and 14 Long Term Conditions; heart failure and frailty are the most common.

Implementing the solution

The team used the ARTEMUS Risk Profiling tool from Docobo and worked together to extend its functionality. By amalgamating data sets and using a new set of algorithms which are based on other predictive tools they would be able to identify those patients, including: the Charleston co-morbidity score, CriSTAL, SPICT, measurable clinical features of organ and neurological functional deterioration and commonly used frailty indicators. By using a correlation of integrated data sets it can simplify decision making for EoL and become a precursor to clinical decision making.

These factors together provided early indicators for those in the last 12 months of their EoL journey.

ARTEMUS EoL provides quick access to multiple factors which can be viewed at a glance to provide greater insight on the patient.

Greater insight on patient level data

At a glance, multiple factors provide greater insight on the patient level data. Users can now view risk of admission score, frailty score and comorbidity index, along with a number of deteriorating factors plus number of A&E attendances and admissions and whether care processes assigned or not in a continuum.

Positive Outcomes

The improved proactive care co-ordination and planning process was underpinned by developing and embedding it within the GP IT Systems and the National ReSPECT care plan.

The team increased the numbers of patients with a care plan and the number of those on the palliative care register; improved different aspects of the quality of the remaining life of patients with non-malignant disease; and involved patients and their carers in the care planning process at an earlier stage.

The tool has improved care co-ordination and patient choice care planning, while also identifying clinically appropriate GP practice patients for EoL care.

Planning Your Care patients were identified through Docobo’s ARTEMUS

Patients who were considered suitable and then referred to the planning-your-care service (PYC) service, were identified through the Docobo platform. One practice already had a frailty nurse in place. Despite this, the practice was still able to identify 53 patients so far through the Docobo end of life tool that they felt were appropriate for the PYC case load. This led to increased access to hospice review and/or intervention.

A definite positive correlation can be seen between those who had an advance care plan and their place of death.

As of month 7, it was estimated that the Planning Your Care cohort saved:

  • 62 A&E attendances
  • 45 Non-Elective (NEL) admissions
  • 6 deaths in hospital avoided (patients chose to be at home or at a hospice in final days)

There has also been a reduction in avoidable A&E attendances and NEL admissions and deaths in hospital for the CCG. On average, the patients who have died from the pilot practices have made one or less non-elective admission in the last year of life.

A clinical staff member says: ‘Patients coming up to a palliative diagnosis have in the past been more difficult to identify without the use of the Docobo system. Patients who require palliative care have been easily identified through clinical intelligence and incoming hospital letters.’

Value of EoL risk stratification

Jacqui says: “The EoL risk stratification algorithm has supported clinical decision making, identifying a broader range of people who would benefit from earlier access to specialist palliative, primary and community care. We have developed a clinically collaborative process for better care planning and coordinating care, and so doing improved that process so it delivers a proactive care model rather than a reactive one. It has reduced the health burden cost of hospital care in terms of reducing the number of deaths in hospital, reducing A&E attendances and non-elective admissions, and produces significant savings.”

We were so pleased to work on the early identification digital tool with the team, and that it has provided such successful outcomes and the proactive co-ordination of care. The project has added value and delivered a high-quality service experience to patients, family and carers."

Adrian FlowerdayCEO of Docobo


There has been analysis of indicative PCN scope of further roll out using the ARTEMUS tool in Crawley. The risk stratification method is transferable and therefore there is scope to roll out further across Sussex and beyond.

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