In the second article in our series on end of life care in the system, Kathy Oxtoby explores how Mid and South Essex ICB is working to improve its palliative and end of life care
Nationally, it is estimated that the number of patients requiring palliative and end of life care (PEoLC) by 2040 will be between 25% and 47% higher than in 2014, with more people projected to die at an older age.
Those dying over the age of 85 will rise from 38.8% in 2014 to 53.2% by 2040, and those who need palliative care at this age is expected to more than double over the same period.
In mid and south Essex, just under 10% of the total population is aged over 75. By 2045, this is predicted to rise to more than 25%, according to the ICB’s population health management data sets.
‘This highlights the need for Integrated Care Systems to reform and refocus how we meet the needs of both today’s and tomorrow’s population,’ says Dr Sarah Zaidi, clinical lead for end of life care at NHS Mid and South Essex ICB.
The ICB has ‘clear priorities for improving palliative and end of life care to meet the needs of our local populations, in a manner that respects their preferences’, she says. ‘We are driving an “everybody’s business” approach to end of life care to ensure that provision is high quality, efficient, co-ordinated, equitable and tailored to the needs of our population.’
The ICB’s key principles to drive improvements align to the three principles in the NHS 10 year plan.
Sickness to prevention
With the shift from sickness to prevention, the ICB is driving earlier identification of people with palliative and end of life care needs and undertaking earlier advance care planning (ACP).
Analysis of the ICB’s local population data shows approximately 2.6% of the 1.3 million residents in mid and south Essex could benefit from earlier identification and personalised end of life support.
‘ACP gives people better control of their care and life journey, plus can also help them avoid unnecessary or unwanted unplanned hospital admissions by providing the right care in their preferred location,’ says Dr Zaidi.
Taking a population health management (PHM) approach, the ICB is working toward improving equity and access, so that more of the estimated 2.6% of its local population receive timely palliative care.
‘Our PHM data can now provide us better insights as to which conditions have the highest PEoLC needs, and where the highest needs are located which enables equitable service planning,’ says Dr Zaidi.
Integrating care ‘enables higher quality proactive care rather than reactive care and also benefits people living with complex needs because their needs are often changing and not just health related, but may be social, spiritual and emotional too’, she continues.
Analogue to digital
With the shift from analogue to digital, the ICB is coordinating care across teams through enhanced use of its end of life digital care delivery tools.
These include the Frailty, End of Life and Dementia Assessment Tool (FrEDA), that helps identify people living with frailty, dementia, or any adults living with life-limiting illnesses who for any reason may benefit from personalised, proactive care. And the Electronic Palliative Care Coordination System registers (ePaCCS), which are nationally NHS-recommended data-sharing enablers that ICBs should have in place to improve higher quality PEoLC delivery and ensure people’s care plans, wishes, and clinical needs are visible to all professionals involved in their care.
These help the ICB ‘connect care delivery more effectively in real time across all providers’, says Dr Zaidi.
‘We have ePaCCS data sharing platforms for adults right across our system,’ says Dr Zaidi. She explained that care inputs and the information from FrEDA directly links to ePaCCS, which enables updates of the person’s latest needs, care preferences and their ACPs, better coordination of care between services in real time, reduction in unnecessary hospital admissions, and increased likelihood of people dying in their place of choice.
The ICB is also one of a small number of systems nationally to have recently launched an ePaCCS for babies, children, and young people.
Since its launch in 2022, Dr Zaidi says the impact from FrEDA rollout for adults with PEoLC needs has been ‘transformational’, with 18,000 more people have been identified for proactive, personalised care.
There has been a 40% increase in adults with palliative care needs added to ePaCCS, a 50% increase in ACPs in place, an over 40% reduction in the percentage of the population having repeated (more than three) unplanned hospital admissions in their last 90 days of life, and more than a 5% drop in deaths across the population occurring in hospital since 2019.
For adults living with frailty, including dementia, there has been a 50% reduction in A&E attendances due to falls among older people, and more than a 30% reduction in unplanned emergency admissions from care home residents.
FrEDA and ePaCCs are ‘helping thousands receive more personalised, coordinated, and compassionate care, supporting people to live well and die with dignity, closer to home if that was the person’s preference’, says Dr Zaidi.
Feedback from staff, the public and carers has been positive. For example, one hospice clinician said: ‘We’ve seen fewer hospital admissions and better conversations about what people want,’ and a patient said: ‘Thank you for just listening to what I want and making that happen.’
The initiative has required relatively little cost to mobilise, in comparison to the positive impacts it can potentially achieve, with the ICB securing a small amount of initial mobilisation funding in 2022 from the National Personalisation Institute to help launch the FrEDA tool across the ICS.
The ICB is now focused on scaling up FrEDA and ePaCCS use across all emerging neighbourhood models of care, providers, teams and care settings, and extending adoption/visibility into urgent and emergency care and secondary care parts of the system, says Dr Zaidi. And it is engaging people and families, ‘so that planning for the last phase of life is approached with honesty, dignity, and compassion’.
Hospital to community
Regarding the shift from hospital to community, the ICB is ‘leveraging’ new care models such as neighbourhood health and urgent and emergency care models that can deliver more care to people in the community, in the place many prefer to receive their care.
The ICB’s neighbourhood model delivery is driven by its four alliance place geographies within the developing neighbourhood care models.
‘We have an agreed end of life care delivery blueprint with deliverables for achieving performance improvements,’ she continues. Integrated neighbourhood teams support delivery of personalised proactive interventions, including ACP and having links with hospice teams for specialist support if needed.
With urgent emergency care, the ICB is trying to ensure that new care models that provide urgent care in people’s own homes – such as virtual wards and urgent care response teams -have the required skills and competencies to respond appropriately to meet the acute urgent care requirements of people with PEoLC needs, in line with their goals and preferences for care.
Dr Zaidi says the ICB’s strategic delivery plan for end of life care also focuses on ‘key enablers that underpin higher quality end of life care’, such as workforce training and education, fit-for-purpose data and system reporting along with lived experience feedback from residents.
The ICB is also developing PEoLC performance dashboards to measure and monitor its end of life performance ‘so that all neighbourhoods and our services across our system can drive continuous improvements for their local populations’, says Dr Zaidi.
‘We’re changing the culture of end of life care in mid and south Essex,’ she continues.
‘Digital innovations are helping us connect teams and services far more efficiently than we ever could before, to provide improved and more seamless coordination of care.
‘By driving the delivery of more proactive and personalised care that honours people’s wishes, we’re helping more people to live as well as possible in their final phases of life, and to die well with dignity, control, and support’.
