Some people who are dying do not receive round-the-clock pain relief, research reveals

People who are dying are receiving inadequate round-the-clock pain relief and poor access to specialist help, according to new research.

Freedom of Information requests to all 209 clinical commissioning groups (CCGs) in England revealed wide variations in provision of NHS end of life care on weekends and during the night.

Some CCGs only offered basic services such as a phone line with no access to consultant advice, while others ran dedicated night-time services, including access to consultants and nursing teams.

Inconsistent

The study, led by Baroness Ilora Finlay, palliative care expert and independent cross-bench member of the House of Lords, found the ‘provision of round-the-clock access to specialist palliative care and pain control is inconsistent’.

Just under a third of CCGs had specialist pain control teams but even most of these operated only during normal working hours, with no cover overnight.

The research found a heavy reliance on hospices to plug gaps, even though many had too few beds to cater for people in need.

Bed supply

Access to specialist palliative care beds varied widely, with one CCG commissioning 61.65 beds per 1,000 people while another provided only 0.55 per 1,000 people.

The research report, published in the journal BMJ Supportive and Palliative Care, also found the amount of money spent on palliative care per patient per year ranged from £52 to £2,329.

Confusion over services meant that people’s choices about where to be cared for and where to die were not always honoured, the report states.

Only half of CCGs said they were committed to improving their services.

Baroness Finlay said: ‘We must ensure that people who need expert palliative care can access the support they need when and where they need it.’

Time pressures

A Nursing Standard and Marie Curie survey, published last month, revealed two thirds of nurses (67%) think they have too little time to provide high quality care to dying patients.

The poll of 996 nurses and healthcare assistants showed that staffing pressures and time constraints were the biggest barriers to good palliative care.

RCN professional lead for long-term conditions and end of life care Amanda Cheesley said: ‘Healthcare staff now have the skills and expertise to ensure that no one has to die in needless distress, yet far too many people are still not receiving the care they deserve.

‘The government’s national commitment on end of life care promised to provide the tools to meet all patients’ needs. However, this research shows that this remains a hope rather than a reality. Without accurate data on how many people need end of life care, too many patients will slip through the cracks.

‘If the government is serious about its commitment, it needs to make palliative care a priority.’

NHS England national clinical director for end of life care Bee Wee said: ‘International comparisons rate the UK as the best country in the world for end of life care, and a recent survey again found that three-quarters of bereaved people rated the overall quality of care for their relative as good or better than good.’

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