6th Report - Palliative Care

Key findings

• Services across all settings are under significant strain with variable commissioning priorities creating postcode lottery provision; most ICBs lack population-level PEoLC data to commission appropriately.
• Children and young people receive inconsistent care with serious workforce shortages; transition from child to adult services lacks standards or continuity expectations.
• Only 43% of ICBs offer 24/7 telephone advice lines despite NICE recommendations for two decades; medication and in-person out-of-hours care access is severely limited across most regions.
• Specialist palliative care workforce is in 'critical situation' with generalist workforce declining; removal of GP contract incentives for Palliative Care Register will reduce early identification from already inadequate 0.55% population coverage.
• Social care engagement is inadequate with planned removal of local authority ICB representation conflicting with community-shift ambitions; data sharing between services remains inconsistent and underutilised.

Recommendations

• Government must set out clear accountability arrangements in MSF interim report, defining what steps DHSC will take against ICBs failing to meet MSF expectations.
• MSF must include specific standards and guidance for children and young people's palliative care services and the transition between child and adult services; pan-ICB commissioning guidance should address these specifically.
• MSF must include specific guidelines requiring ICBs to provide 24/7 PEoLC services including symptomatic medication access and in-person care where necessary; Government should assess workforce required and potential wider NHS savings.
• Government should increase specialist and generalist palliative care workforce capacity with specific staffing targets for children and young people's services; workforce modelling for 24/7 telephone lines should be completed.
• Government should reconsider removing local authority representation from ICBs to ensure social care is appropriately represented and commissioned for end-of-life care delivery.
• DHSC must mandate ICBs to maintain fully populated PEoLC dashboards actively used for commissioning, service planning, quality improvement and inequality monitoring.
• Department should implement 90% target for individuals in last year of life documented on Palliative Care Register and report annually on progress given removal of GP financial incentives.
• Government must introduce sustainable and predictable hospice funding model covering running and investment costs, reflecting their increasingly central role in delivering end-of-life care.
• DHSC should monitor ICBs' current bereavement service delivery and set out steps taken with ICBs not delivering acceptable service levels.

Key actors

Stephen Kinnock, Minister of State for Care, Layla Moran, Health and Social Care Committee Chair, Professor Dame Jane Dacre, Independent Expert Panel Chair, Dr Amanda Doyle, National Director for Primary Care and Community Services, NHS England, Dr Sarah Mitchell, National Clinical Director for Palliative and End-of-Life Care, NHS England, Marie Curie UK, Hospice UK, Together for Short Lives