Specialist palliative care coding in NHS primary care: too sparse to monitor

A Nuffield Trust and OpenSAFELY analysis using NHS England-approved linked primary care data (Bagri S et al., BMJ Supportive & Palliative Care; PMID 41980783) examined over 970,000 decedent records from March 2019 to August 2023 to evaluate which electronic health record data elements could function as quality indicators for end-of-life care. The headline finding was stark: specialist palliative care contacts were recorded in GP records for only 4–5% of patients on average. The authors conclude that this rate is too sparse to serve as a reliable population-level quality indicator — the data simply cannot support meaningful comparison between services or tracking of change over time.

The study also found that advance care planning documentation improved substantially over the study period, from 19% to 27% of decedents. This is meaningful progress but leaves the majority of people dying without a recorded ACP document. The research identifies a structural measurement gap: the clinical activity that matters most — specialist palliative care involvement — is the least consistently captured in the data infrastructure that commissioners and policymakers will be required to use for accountability under the forthcoming national service framework.

That framework is now imminent. Written Ministerial Statement HCWS88, published 4 June 2026, announced a Modern Service Framework for Palliative and End of Life Care, expected in autumn 2026, which will set identification and access targets for specialist palliative care. Those targets will need to be measured against a coding baseline that, on current evidence, does not yet exist at usable scale. At the same time, Hospice UK’s Financial Benchmarking Report (18 March 2026) recorded that 57% of hospices had made or were considering frontline cuts, with an estimated 380 hospice beds out of use nationally — meaning the coding gap arrives alongside a capacity constraint on the very services that would generate the coded contacts.

The clinical and operational implication is a sequencing problem. Compliance with the Modern Service Framework will require services to demonstrate specialist palliative care reach against a defined population. That demonstration depends on coding. Where specialist palliative care contacts are not routinely coded in GP records — whether because the contact did not occur, or because it occurred but was not recorded — commissioners cannot distinguish under-provision from under-documentation. A systematic audit of current coding practice, followed by a structured improvement programme, is a prerequisite for MSF compliance planning, not a secondary administrative task.