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Dying patients living longer than expected lose NHS funds.


More than 1,300 patients a year are having NHS funding for their palliative care withdrawn after living longer than expected, according to analysis by the BBC.

Terminally ill, or rapidly declining, patients are given fast-track support, allowing them to live outside hospital.

From 2018 to 2021, a total of 9,037 people had this funding reviewed in England and Wales and 47% lost all support while a further 15% of patients had their continuing healthcare support replaced with the more limited NHS-funded nursing care.

One patient, Sandra Hanson, was referred to the fast-track pathway of the NHS continuing healthcare scheme in mid-2020, after her needs were judged by a clinician to be "end of life.”

She was diagnosed with end-stage dementia, and had been in hospital eight times in the previous year following multiple falls and bouts of pneumonia.

The funding covered the costs of a nursing home, where she suffered fewer falls but in March 2021, this funding was reviewed by her local Clinical Commissioning Group (CCG).

These assessments, usually undertaken by a multi-disciplinary team including health and social care professionals, consider the severity of a person's needs in areas such as mobility, cognition and behaviour.

Sandra's daughter, Charlotte Gurney, said the family was represented by a social worker that they had not previously met, and described the meeting as "traumatic" as she tried to explain her mum's needs.

She said: "We just felt not listened to. We were treated as if we were trying to swindle the system. I felt like they had an objective to cut funding to meet budgets and it didn't matter what I said."

Sandra Hanson’s support was withdrawn and she had to be moved to a new nursing home, financed by her husband Malcolm.

Shortly afterwards, she broke her wrist following a fall and injured her face. The family believes that if the review had correctly identified Sandra's needs and risks, this could have been avoided.

Charlotte Gurney appealed against the CCG's decision to remove the funding and Sandra Hanson’s support was reinstated, but not fully backdated leaving her husband a £10,000 shortfall.

Even though the appeal was continuing, South West London CCG has now overturned its decision and said it will backdate the money.

A spokesperson said it worked with "patients and their family, carers and nursing homes to carefully consider each individual case.”

The fast-track continuing healthcare scheme pays for all an individual'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.

Guidelines state this should not be "interpreted narrowly" as meaning only those with a "short time frame of life remaining” but in many cases, where a patient remains alive beyond their prognosis, reviews are being used to decide on their continued eligibility, often taking place as soon as three months after their funding started.

Data from 86 of the 117 CCGs and health boards in England and Wales, collated by the BBC through Freedom of Information requests, shows 9,037 fast-track continuing healthcare patients had their funding reviewed through a Decision Support Tool (DST) assessment between 2018-19 and 2020-21.

Of these, 47% were found no longer eligible for palliative care funding, 15% were provided with NHS-funded nursing care, and 38% remained eligible.

However, there is great regional variation. In some areas, more than 80% of reassessed patients were found to be no longer eligible. In other areas, the figure was below 20%.

Where a patient's funding is removed, the assessors will usually refer the individual's family to the social care system, believing this can adequately meet their needs.

In England, the responsibility for commissioning continuing healthcare is transferring away from CCGs to newly formed Integrated Care Systems.

An NHS spokesperson said across England more than 260,000 people were given fast-track support between 2018-19 and 2020-21.

The Department of Health and Social Care said its continuing healthcare guidelines allow patients to "receive appropriate care quickly,