Improving end of life care through co-designing and scaling new approaches

Since 2015 we have enabled the NHS to introduce eight social outcomes contracts, supporting the co-design and scaling of improvements in end of life care in different areas of England. 

End of life care supports people with advanced, progressive, incurable illness to live as well as possible until they die and to die a ​‘good death’. For many a ​‘good death’ involves being without pain, in a familiar place with friends or family and being treated with dignity and compassion. 

• Every year, around 550,000 people die in England, two thirds of them aged over 75. Three quarters of these people die after a long-term illness and need end of life care.

• The average cost of care in the community in the last three months of life is £1,000 per person who died, while in hospital it is £4,500 per person who died (source: The Nuffield Trust).

• Of the 79% of people who would prefer to die at home, only half are able to due to:

  • A lack of community-based services to support people at the end of life.

  • Disparities and inequalities in provision of services.

  • A lack of integration between services such as hospitals, community care and private care.

As a non-profit organisation responsible for developing the world’s first social outcomes contract, we were invited to work in partnership to see if this approach could improve end of life care and be effective and useful in the NHS. 

We worked with organisations including the Department of Health and the NHS Confederation, with support from Professor Bee Wee CBE, National Clinical Director for End of Life Care for NHS England and NHS Improvement. 

Social outcomes contracts are a funding approach where money is invested at risk and only repaid if and when certain outcomes are achieved – such as enabling more people to die in their preferred place.

They can be a really effective way to bring about change where different organisations or services are involved and aren’t well integrated. This is because social outcomes contracts align incentives across multiple partner organisations and help to build collaborative working relationships. 

In this case, they also offered other important benefits, including:

• Upfront investment that wouldn’t have been possible through NHS funding processes.

• Longer-term funding that wouldn’t have been available otherwise – NHS projects tend to be funded in one-year cycles.
  

• A way to secure investment in something new and unproven that had strong potential to bring about change – without risking money from the public purse. The investment is only repaid if agreed outcomes are achieved.

• Freedom to adapt and innovate according to the needs of different situations, projects or local areas within an overarching funding framework and with a unifying focus on outcomes to benefit people at the end of their lives and health and social care systems. 

We have co-designed, tested and delivered eight end of life care social outcomes contracts across different parts of the UK. Three projects have successfully completed and five are still running. 

We work in partnership with experts and advisors, through a special purpose vehicle – a company – called the End of Life Care Integrator (EOLCI). The work of the EOLCI is supported by investment from Macmillan Cancer Support and Big Society Capital through the Care and Wellbeing Fund. 

Through developing and delivering the eight outcomes contracts, we have provided: 

• Upfront investment and support for community-based projects to improve outcomes for people at the end of their lives and for health and social care systems that support them.

• Access to expertise and rigour in planning, developing business cases, partnership working and performance management for the duration of the contract.

• Data analysis to track the outcomes for people and understand the value of the new ways of working to health and social care systems and services.
  

• Dashboards to support continuous learning and empower people to make change.
  

• Advice on how to develop contracts for outcomes-based commissioning of services.

We have shown that social outcomes contracts can work well to fund and support community-based services within health and social care systems, including the NHS. 

The contracts we developed have:

• Enabled thousands more people to live as well as possible with advanced, progressive and incurable illness by reducing health inequalities and reducing time spent in hospital through:

  • Better coordination between service providers such as care homes and hospitals.

  • Greater integration of decision-making.

  • The creation of new services to support community-based care, for example a service providing rapid access to community-based end of life care, so people can still die in their preferred place even when their situation changes quickly.

  • A reduction in emergency admissions by proactively identifying end of life residents, influencing their management and helping document their wishes. 

• Enabled thousands more people to experience better care in the last year of life and die in their preferred place by:

  • Helping more people create advanced care plans so when they become ill towards the end of their life there’s a plan ready, agreed with family, that can be acted on quickly.

  • Creating community-based support.
    

Finally, we’ve helped to transfer key skills into the team at Macmillan Cancer Support so they can develop and manage social outcomes contracts themselves. 

Macmillan, in partnership with Sobell House, have since launched a new £9m EOLC project using social investment after seeing the impact we have had. It is the biggest social outcomes contract in the NHS and the first one directly contracting with a provider – Oxford University Hospital.

The End of Life Care Integrator is run by Social Finance along with a team of independent experts and advisors, including clinical and NHS staff with a wealth of experience in palliative care, healthcare management, strategy and finance. The EOLCI team at Social Finance has a wide range of backgrounds including NHS senior management, central government policy experience and clinical leadership.