Research shows that whilst most people wish to die at home, more than half will die in unfamiliar surroundings in a hospital. This costs the NHS on average £23,000 more per person for the last year of care.
In 2016, Independent Lives, partner organisations and NHS commissioners explored how they could support a person’s End of Life choices, to improve quality of life and experience of care and save the NHS money.
The result is a new framework which helps individual’s access a Personal Health Budget (PHB), support End of Life conversations and enable a person’s personal choices so they can have a ‘good death’ in their preferred place.
A PHB is money identified and awarded by the NHS so people can have more choice and flexibility over how they manage their health care.
The organisations behind the innovative framework are:
- Crawley CCG and Horsham & Mid Sussex CCG, who commissioned the project with NHS England’s support
- Independent Lives, a charity supporting disabled people, people with complex health and experts in personalised care and planning
- Helen Sanderson Associates, a social enterprise that creates person-centred plans and toolkits with third sector organisations
- Living Well, Dying Well – End of Life care professionals.
What were the goals of the partnership, and when and why was it established?
Personal Health Budgets are identified and awarded by the NHS so individuals can have more choice and flexibility over how they manage their health needs. The Government hope to offer PHBs to 100,000 people and are consulting with local CCGs to pilot new ways they can offer them.
Independent Lives was involved in the original 2010 pilot programme to implement PHBs within continuing healthcare for people with complex healthcare needs. This new pilot explores how the wider population can benefit.
Our partnership’s goal was to draw on our collective experience to develop and pilot an End of Life PHB framework that put the person requiring care’s personal choices at the centre of everything.
Our pilot hoped to:
- quantify our findings to show financial savings
- develop a streamlined framework with a range of providers who can collectively support people to have a good death
- work collaboratively with local End of Life services across healthcare and third sector
- ensure 100% of the people we worked with had a good death where they chose
The project began in October 2016 with a recently extended completion date to December 2017 allowing us to offer our pilot to a wider audience.
How did the partnership achieve these goals? What resources did the partners put in and what challenges did they face?
We achieved our goals by drawing on our separate specialisms to design and deliver our framework. This required creative thinking at every stage due to shrinking budgets and no previously written guidelines.
The commissioners approached the charity Independent Lives to help deliver the project following several recommendations that we are the organisation to discuss PHBs with.
After an initial planning session, we invited Helen Sanderson Associates to join us. They are an industry lead in ‘person-centred service design’ working with numerous organisations creating toolkits and supporting patient materials.
Our project also relied on experts in their field so we invited End of Life organisations to an event. We chose to work with Living Well Dying Well who train ‘End of Life Doulas’, people who support and advocate for individuals and already produce supporting material for End of Life care. Like other small community services they would not normally be able to access NHS contracts so have welcomed the opportunity.
One of the challenges we faced together was finding enough people willing to join our pilot. At present we would like to at least double the number of participants.
Another challenge is finding extra money within the NHS to free up for PHBs when they are already working within financial constraints. However, we have shown that if the NHS invest in support upfront and provide resources to plan a good death, that person centred End of Life planning promises an overall cost saving to the NHS, even though these aren’t immediately visible.
How successful has the partnership been?
We feel our partnership has been very successful as for the first time it has pulled together the collective expertise of healthcare, funding, support planning and care professionals to discuss and develop a framework that looks at how End of Life can be supported.
Ultimately, the greatest success from this is that 100% of people who received a PHB through the pilot were able to plan for End of Life and died where they said they would like to. They received support to access and manage their funding and were able to use the person-centred materials to have healthy conversations with loved ones and professionals to choose their ‘good death’.
Another area we identified for quantifying our results was to establish a system that showed how much End of Life care currently costs and how savings can be made. As part of our ‘Toolkit for Commissioners’ we provide a six step process that works with existing hospital IT data so each local area can calculate cost savings.
By the end of March 2017 we have not only a Commissioners’ toolkit so other local areas can efficiently roll out the framework, but we have also developed resources for Patients and NHS Referrers. This ensures both parties have everything they need to develop funding cases for personalised care.
Whilst we have been offered an extension on the project to continue rolling out the framework, by March we have achieved the 4 aims highlighted in the previous section.