More than 1,300 patients a year are being stripped of NHS funding for their palliative care after living longer than expected, a BBC analysis shows.
Terminally ill or rapidly deteriorating patients receive rapid support so they can live outside the hospital.
A total of 9,037 people had this funding checked in England and Wales from 2018 to 2021, with 47% of them losing all support.
The NHS said the patients’ suitability had been assessed in line with government regulations.
A further 15% of patients had their continuous healthcare replaced with more limited NHS-funded care.
Sandra Hanson was referred to the NHS system’s fast track path to continuous healthcare in mid-2020 after her needs were assessed as ‘end of life’ by a clinician.
She was diagnosed with end-stage dementia and had been hospitalized eight times in the past year after multiple falls and pneumonia.
The funding covered the cost of a nursing home, where she suffered fewer falls.
But in March 2021, that funding was reviewed by her local Clinical Commissioning Group (CCG).
These assessments, usually conducted by a multidisciplinary team of health and social care professionals, consider the severity of a person’s needs in areas such as mobility, cognition, and behavior.
Sandra’s daughter, Charlotte Gurney, said the family was represented by a social worker whom they had not previously met and describes the meeting as “traumatic” as she attempted to explain her mother’s needs.
“We just didn’t feel listened to… we were treated like we were trying to cheat the system.
“I felt like their goal was to cut funding to meet the budget and it didn’t matter what I said.”
Sandra was deprived of support and had to be moved to a new nursing home funded by her husband Malcolm.
Shortly thereafter, she broke her wrist in a fall and injured her face. The family believes this could have been avoided if the review had correctly identified Sandra’s needs and risks.
Charlotte appealed the CCG’s decision to cut funding – phase one of which was completed a few months later.
Support was restored but not fully backdated – leaving Malcolm more than £10,000 short.
The appeal was ongoing but since being contacted by the BBC, the South West London CCG has reversed its decision and announced it would put the money retrospectively.
A spokesman said it has worked with “patients and their families, carers and care homes… to carefully consider each individual case”.
The accelerated system of continuous healthcare pays for all of a person’s palliative care needs and is not means-tested.
To qualify, there must be evidence of a rapidly deteriorating condition that may be entering a terminal phase.
The guidelines state that this should not be “strictly construed” as only those with a “short time frame remaining” are meant.
But in many cases where a patient survives beyond their prognosis, reviews are used to decide on their continued eligibility – often they take place three months after their funding began.
Data from 86 of the 117 CCGs and health authorities in England and Wales, compiled by the BBC via Freedom of Information requests, shows that the funding of 9,037 patients with accelerated continued care between 2018 and 2019, through a Decision Support Tool (DST) assessment has been reviewed and 2020-21.
Of these patients, it was found that 47% were no longer eligible for palliative care funding, 15% received NHS funded care and 38% remained eligible.
But there are large regional differences – in some areas more than 80% of reevaluated patients were found to be ineligible. In other areas, the number was below 20%.
When a patient is deprived of funding, evaluators usually refer the person’s family to the social welfare system, believing that this can adequately meet their needs.
Andrew Farley, of specialist law firm Farley-Dwek Solicitors, said the percentage of those who had had their funding withdrawn was “extraordinarily high”.
He described the assessments as “often used as a cost-saving measure by the NHS to remove funding from as many people as possible, although that may not be appropriate”.
In most cases, the cost per patient to the NHS is in the tens of thousands of pounds over a year.
Mr Farley added that the failure of many care home providers to keep “accurate records” of patients’ needs could also result in decisions being made incorrectly.
Dan Harbour, of Beacon, which advises families, said reviews should “focus on whether a person’s needs are still being met and whether the care package is adequate to support them”.
But, he added, in some cases it may be appropriate to reassess eligibility once a person’s condition has stabilized.
In England, responsibility for mandating continuity of care is being transferred from CCGs to newly established Integrated Care Systems.
An NHS spokesman said more than 260,000 people received rapid support across England between 2018-19 and 2020-21.
The Department of Health and Social Care said its ongoing health guidelines allow patients “to receive appropriate care quickly … taking into account the overall needs of the individual”.
Northern Ireland does not operate a fast track system, while Scotland uses an alternative health care continuation system.
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