Transforming end of life care: Three key insights from Waltham Forest
To mark the two year anniversary of our programme, we reflect on the main learnings, achievements and aspirations for the future.
Photo by Mitchell Luo on Unsplash
The End of Life Care Integrator (EOLCI) was established by Social Finance in 2015 to enable health and social care systems to make change happen so that people are able to live and die well in the last phase of life.
In 2018 the team supported the development and mobilisation of a transformation programme around end of life care in Waltham Forest.
At the time, Waltham Forest had one of the lowest rates in the country of people being supported to die in their usual place of residence. While 86% of patients in Waltham Forest reported wanting to die at home, only 33% of them were supported to do so. This compared with a national average of 46%.
It was clear that something needed to be done to improve outcomes for patients.
Stakeholders noted that while great services existed across Waltham Forest, patients often ‘fell through the gaps’ because of a lack of effective coordination across the system.
In response, partners developed a vision for improving care and choice at the end of life, so that the entire health and social care system worked together to improve the identification and support of end of life care patients and their families. Social investment was a catalyst to bring individuals and organisations together.
Since the start of the programme non-elective admissions from care homes have steadily declined: in 2019–20 admissions were 11% lower than in the previous 12 months. And for the last year the average number of bed days for patients who die in hospital is below ten demographically comparable CCGs.
To mark the two year anniversary of the programme, key representatives in Waltham Forest and Social Finance reflected on the key learnings, achievements and future aspirations for implementing transformation in the NHS, three of which we would like to share with you here.
1. Decision making at a systems level: addressing the challenge of getting everyone involved
Since the inception of the programme the Operational Delivery Group, consisting of senior operational staff from primary care, hospitals, community specialist palliative care, social services, the ambulance service and commissioners, has met monthly to set priorities and action change in critical areas of need
This forum is recognised by stakeholders as instrumental to providers and commissioners in understanding the challenges faced by different parts of the system, and to work together to find solutions.
‘The programme has enabled us to develop a shared vision of change for end of life care in Waltham Forest’
While the feedback from the group is positive, many see room for improvement. For example, to have decision making power, the group is structured so that all members are at least Band 8a (a senior managerial position in the NHS). However, this means that more junior members may not be sufficiently included in the discussions about the challenges faced.
To tackle this, the team intends to set up working groups in which some of the operational challenges discussed at the Operational Delivery Group can be addressed. For example, it hopes to set up a taskforce on implementing the end of life care education strategy, and one on better support for palliative care patients at GP Multi-Disciplinary Team Meetings.
2. Establishing programme priorities in a dynamic health system
Core to this programme’s philosophy is that solutions for the system need to be continuously adapting to the changing nature of need. While stakeholders value the programme’s commitment to understanding the system, it has also seen a lot of changes to its priorities as a result.
Indeed, the programme had a ‘reboot’ one year in, to better align with new leadership and shifting priorities across the patch.
‘Having a set of priorities has enabled the group to be focused in its discussions, and has allowed us to identify and address the ‘quick wins’ in the system’
One of the key pillars of the programme was the Enhanced Palliative Integrated Care Team (EPIC) service: a collaboration between partners in Waltham Forest and Social Finance to invest in palliative care support in the community in the form of designated support for care home staff, and in the provision of a ‘sitting’ service for dying patients. In practice some roles were difficult to recruit to, and the team felt the service would better meet patients’ needs when redesigned with a different skill mix.
In addition, the impact of Covid-19, whilst exceptional (particularly in the Waltham Forest population), shows how priorities, services and resources can change very quickly.
3. Understanding the impact: measuring transformation at a system level
Since the programme started, Waltham Forest has slowly but steadily reduced the proportion of its population dying in hospital. The programme worked hard to develop a system wide dashboard of end of life care metrics, bringing together data from multiple sources (e.g. Clinical Commissioning Group Business Intelligence (CCG BI) unit, Hospital Episode Statistics (HES), Office for National Statistics (ONS), Electronic Palliative Care Coordination System (EPaCCS), and the results looked positive.
‘We have made subtle changes to ways of working that have been transformational’
While Waltham Forest consistently had a greater percentage of its end of life care population dying in hospital than its ‘Right Care Cluster’ (the average of ten demographically similar CCGs) up to mid-2019, it has since managed to support more people to die at home.
Furthermore, while Waltham Forest ranked near the bottom of the 32 London CCGs in terms of its adoption of Coordinate My Care (the EPaCCs system used across London) at the start of the programme, it now ranks 16/32.
Whilst these results are encouraging, it is challenging to attribute improvements in end of life care to the programme directly. This is because the programme focuses on a number of priorities across different services in the system, so there is no direct baseline against which to measure success. This poses a particular risk for commissioners who need to make the case for continued investment in the programme.
Much of the programme’s value is more subtle, making it harder to quantify. Setting up groups with representatives from across the system has allowed a shared vision for change to be developed and has enabled key stakeholders to develop more integrated solutions. Moving forward, it will be crucial for the team to demonstrate the value-add of these relationships.
Where do we go from here?
We have learned that transformation in healthcare takes time and perseverance to materialise, and we are privileged to have been working with a group of incredibly energised and committed commissioners and health and social care providers.
Stakeholders in Waltham Forest recognise the value of the system-wide end of life care platforms that we developed, and we will ensure that these continue to be fora for change moving forward.
‘We are still learning, still on an evolution trail but we are in such a different place from where we started’
We also learned that agility is key in transformation programmes, and that while a huge amount of energy can be spent on developing a brilliant three year plan for system transformation, key stakeholders move on and priorities change, so adaptability is key. We therefore hope to:
- Work on emerging key priorities such as improving the quality of Co-ordinate My Care (CMC) plans and increasing education for health and social care providers on how to identify and refer patients who are at the end of their lives;
- Challenge ourselves to incorporate the views from across the health and social care system into the programme’s strategy;
- Maintain the motivation and commitment in the team to continually ensure the programme’s effectiveness to meeting local need;
- Work with data leads from across the system to better understand the tangible outcomes that can be attributed to the programme so that commissioners can better make the case for continued investment in the future
We continue to learn more about transforming end of life care every day, and would love to grow our community of interest, sharing learning across sites and across networks. If you are working on similar topics, or have a general interest in outcomes-based commissioning in end of life care, we would love to hear from you!
If you would like to hear more about our work please email email@example.com.
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