How many people need expert symptom assessment but are not in the last year of life?

Introduction Earlier palliative assessment and support for symptom self management may reduce distress and health resource use in incurable illness. The end of life tariff includes assessment of unstable symptoms, even if not in the last year of life. Current hospital recording systems do not allow timely identification of these individuals. Understanding how many people have palliative needs but are not in the last year of life will be increasingly important.

Aims and Methods To identify people living with cancer at different phases across the care pathway including those at risk of developing complex symptoms, with progressive illness or at end of life. Using available data and clinically led assumptions we make indicative estimates of the number of people in different health states – particularly those with palliative care needs and not in the last year of life.

Results We estimate pathway phases for breast, prostate, colorectal and lung cancers. For example, we estimate that in one year 48,000 women develop breast cancer in the UK and 12,000 are in the last year of life 24,000 have progressive illness and are not in the last year of life.

Conclusion We provide ‘good enough’ estimates of the number of patients with different health needs and transition points in the cancer care pathway to stimulate debate and inform commissioners about areas of need. While cancer is seen to have the most predictable pattern of deterioration, as more incurable cancers become treatable, illness trajectories will become more comparable to other chronic illness. A similar approach might be taken with other illnesses.