Concerns have been raised over the consistency of how palliative care is provided across England.
Experts have warned that it requires a national framework to ensure patients have equal and fair access to end-of-life services.
“Tragically all too often the right support is simply not provided”
They said palliative and end-of-life care were not being considered as core services by some clinical commissioning groups, with a vast degree of variation across different services and regions.
Their results show CCGs are not using standardised information about their population to commission services and there is confusion about who is responsible for service provision.
As a result, patient choice at the end of life cannot always be honoured and it creates a “postcode lottery”, they warned in the journal BMJ Supportive and Palliative Care.
The study revealed that out-of-hours services rely heavily on hospices rather than NHS funding and less than half of CCGs have plans to review or update services.
The House of Lords team, led by Professor Baroness Ilora Finlay, sent Freedom of Information requests to all 209 CCGs across England in 2015 to assess their commissioning of palliative and end-of-life care services.
Of 81 CCG respondents, only 29 provided information about the number of patients with palliative care needs in their population.
“Far too many people are still not receiving the care they deserve”
The FOI results also revealed that CCGs had budgets ranging from £51.83 to £2,329.19 per patient per annum for palliative care services, supporting concerns about a “postcode lottery”.
In addition, of 204 CCG respondents, 83% commissioned seven-day specialist palliative care services in patients’ own homes, but out-of-hours services relied heavily on hospice-led services.
Meanwhile, 31% commissioned pain control teams, but the majority of these only operated in regular working hours.
The researchers noted that 68% of CCGs reported commissioning palliative care education for healthcare professionals, but the type of educational support was hugely varied.
Under half, 45%, of 194 CCGs said they did not have plans to update or review their palliative care services.
Furthermore, the researchers highlighted that there was “no current national initiative in place to monitor how often services are reviewed, or to support CCGs in developing their services and sharing best practice”.
Concern over ‘postcode lottery’ in palliative care provision
They stated: “This study goes some way to provide evidence that while there is excellent specialist palliative care provision in parts of England, there is a vast degree of variation across the country.”
“Most strikingly, there is little uniformity in the data CCGs are required to hold, and disparity in the responsibility of service provision between CCGs, Trusts and local hospices,” they said.
“As a result, a paucity of services means that patient choice at the end of life cannot always be honoured,” they warned.
They recommended that the Welsh palliative care strategy should be used as a best practice model, with staffing levels determined within the available funding and a dedicated number of palliative care beds ensures fair access to palliative care across seven days.
The study authors said “devolution of decision making down to CCGs suggests that palliative care provision is not being considered as a core service in some parts of England”.
“Despite much evidence of its cost efficacy, the provision of specialist palliative care is in need of a national framework to ensure that patients achieve good end-of-life care everywhere,” they said.
Amanda Cheesley, the Royal college of Nursing’s professional lead for long-term conditions and end-of-life care, 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.
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“Without accurate data on how many people need end-of-life care, too many patients will slip through the cracks,” said Ms Cheesley.
“If the government is serious about its commitment, it needs to make palliative care a priority for the future of our health care services,” she said.
Anna Jewell, director of operations at the charity Pancreatic Cancer UK, said: “Good end-of-life care can make the world of difference to people… but tragically all too often the right support is simply not provided.
“We regularly hear from families that they were left confused about what support was available, that vital conversations about end of life care did not happen soon enough, and that ultimately their loved one was not supported to have the death that was right for them,” she said.
“We urgently need CCGs to ensure that all patients are being supported in the right way at the end of their lives,” said Ms Jewell.
“She added: “We also need healthcare professionals to raise these issues at an early stage with their patients, to make plans for their final weeks and days at the right time.”
“This new research shines a light on the challenges that the government will need to address”
Sue Hogston, chief nurse at the charity Sue Ryder, said: “This new report exposes some shocking evidence on the lack of support for palliative care in the UK.
“In July, the government launched its national commitment on end of life care, which set out what people can expect from their care,” she said. ”The government said that it would “lead on end of life care nationally and provide support for local leadership, including commissioners, to prioritise and improve end of life care.
“This new research shines a light on the challenges that the government will need to address in following through on its commitment. We eagerly await their response and look forward to playing our part in driving these improvements,” she added.