Where next for social investment in end of life care?
When the End of Life Care (EOLC) team at Social Finance launched the new Macmillan Fund for End of Life Care in May 2021, it wasn’t clear what interest would be generated. Mid-pandemic, would practitioners have the capacity to complete the application form, and engage with our project development process? What would be the themes and trends that came from the expressions of interest (EOIs) and what could they tell us about the state of end of life care in the UK right now?
Sixty EOIs were received, and the breadth and depth of them was impressive. As an experienced palliative care nurse who was involved in reviewing them, here are a few personal reflections.
What sort of people and organisations applied?
There was a broad range of organisations leading on, or involved in, the EOIs – well beyond the specialist palliative care or hospice world that some might have expected. Applications focused on care homes, 999 and 111 services as well as hospital specialist teams, hospices, charities and voluntary organisations. It was good to see some very recognisable names of leading figures in specialist palliative care interested in the social investment approach, as well as those who are new to the field, working in less prominent roles, or working in generalist services.
There was a recognition that much of EOLC is provided by generalist services, and/or in a community setting, and that much of that care is needed 24/7. A significant proportion of applications focused on a 24/7 service provision, or at least an extension of working hours, which felt very important from a patient, carer and professional perspective.
Where were applications from?
Some EOIs covered a small geographical footprint, or small and specialised cohorts of patients, and some covered a whole system at county level – though many of them shared the uncertainty of how the current NHS restructuring might affect which processes. Applications often need support from a governance, financial and contractual perspective to proceed successfully through the development process.
There was a good spread of applications from across England, with some from Wales and Scotland. These all seemed to be (in an entirely unscientific way!) a fair balance of north and south, rural and urban, coastal and inland, London and elsewhere, and poorer and more affluent areas.
What cohorts of patients were highlighted?
Most EOIs were about total EOLC populations, but some focused on the needs of specific diagnostic cohorts of patients. These were usually the primary terminal diagnosis for example people with frailty, advanced liver disease or haematological cancers, but were also those with a secondary ‘diagnosis’ or vulnerability such as dementia, learning disability or mental illness, that was relevant to how they access or use EOLC services. Others focused on those living in specific settings such as nursing homes, supported living, or people who are homeless.
I was pleased by the recognition of the need to find ‘unknown’ patients, those that are likely to have end of life care needs, but have not been recognised as such by professionals, or have not been referred to or accepted care from services. Patients can be ‘unknown’ to services for many reasons, but EOIs that looked to reach an ‘unknown’ as well as a more diverse cohort of people at end of life were of particular interest as we think about ‘levelling up’ care. These patient groups can present a challenge, however, when looking for the right data to form the baseline of a social investment business case.
Were there any gaps or surprises?
I admit to being surprised by the good level of understanding that applicants had about social investment and social impact bonds – the whole concept was entirely new to me a couple of years ago! – and their ideas about how spending money in one part of a system can save money elsewhere AND provide a better service to patients.
I was slightly disappointed not to see more innovation or thinking ‘outside the box’. The majority of EOIs were around increasing the spread of existing proven service models like ‘palliative care coordination hubs/single points of access’ or ‘rapid response community nursing’. All extremely valuable services, but maybe not playing to the strengths of social investment which can take an agile approach to innovation and be comfortable talking about risk. It will provide some future reflection for us to think about whether we need to, and how to, encourage more innovative proposals.
More EOIs from Scotland and Northern Ireland would also have been welcomed and may need a more targeted approach. It would have been good to see more EOIs from social care or addressing the needs of patients who are at the intersection of health and social care provision.
And speaking personally, I’m surprised that there were not more applications driven by nurses, or for nurse-led services. There were some, but not enough – and I am convinced that the social investment model is a good vehicle for nurses to make, and demonstrate, improvements in services that really make a difference to what matters to patients and those that care for and about them.
My overall reflections are that the EOI applications we received were diverse and worthwhile: they focused on improving the care of patients at the end of life, and nearly all of them were a good fit for social investment. Given the events of the past 18 months, this is a testament to how passionate those working in end of life care are to invest in the best possible models of care for patients in their area.
Our work with the teams who submitted expressions of interest has already started, and we hope as many as possible will be funded and launch successfully in 2022 and 2023.
There will be future expressions of interest in the coming years, so watch this space. My main message to future applicants would be to be bold! Use the opportunity of social investment to explore something new and think, ‘what if…?’
The author is an experienced registered nurse with over 30 years’ experience in palliative care. Her former roles include leadership of an EOLC team in a large multi-site hospital.