Evaluating a palliative and end of life care programme

The challenge

NHS England’s national palliative and end of life care programme aims to support the delivery of personalised palliative and end of life care for all, irrespective of age, area, condition or setting.

As part of its response to Covid-19, the national programme, which has a devolved model of seven strategic clinical networks, worked closely with 42 integrated care systems to deliver high quality personalised care.

They took a regional approach to delivering a group of activities to improve palliative and end of life care, as well as developing strategic priorities for the following year.

NHSE was keen to understand the impact of the programme, and how successful the approach had been in three areas:

• the balance between national steer and regional delivery
• leadership in response to Covid-19
• decision making on the allocation of resources and activity.

In particular, they wanted to know how these had affected four outcomes that the programme wanted to improve:

• quality of care and support for patients or carers
• profile and prioritisation of palliative and end of life care in the NHS
• sustainability of service provision for patients or carers
• national palliative and end of life care leadership in terms of the wider programme.

Kaleidoscope were commissioned to evaluate the activities of the national Palliative and End of Life Care programme from April 2020 to March 2022.

The evaluation had to engage a wide range of regional and national stakeholders who had delivered and/or supported palliative care during this period.

Our approach

Our thorough approach to engaging stakeholders through co-designed focus groups and interviews was especially impactful.

To design the data collection phase, we facilitated a focused scoping workshop with the client to help define their needs and goals, and how they would use the project outputs.

We then developed an ‘impact analysis’ approach that would support high quality engagement from stakeholders and produce practical recommendations for the national Palliative End of Life Care Programme to adopt.

To understand the experiences of stakeholders during the evaluation period, we co-designed two digital workshops with the national Palliative End of Life Care Programme colleagues to ensure that the workshops would be psychologically safe, accessible and create meaningful insights.

This meant that stakeholders were able to openly share their experiences over the evaluation period, as well as hear the views of other stakeholder groups in order to share learnings for future areas of work.

Results

Using thematic and content analysis, we identified significant recurring themes from the focus groups and interviews. We developed a report of findings and key recommendations that the National Palliative and End of Life Care team could disseminate to its key stakeholders.

The report explores the four outcomes that the programme wanted to improve and cross-analyses these through the three evaluation lenses outlined above.

As well as producing concrete findings on the successes of the National Palliative and End of Life Care Programme, we outlined key learnings for future engagement and activities such as: listening to sector need to lead the production of high quality guidance and best practice, convening stakeholders to facilitate effective collaboration, developing processes to evaluate ongoing impact.

We plan a closing ‘learning dissemination’ workshop to share the key findings of the report with the team later this year.

They are using the information to shape their future activities with stakeholders, and will submit the report as part of their evidence to the UK Covid-19 Inquiry.