Dying patients living longer than expected lose NHS funds

Sandra Hanson, who has been with her husband Malcolm for 50 years, had her funding withdrawn last year

More than 1,300 patients a year are having NHS funding for their palliative care withdrawn after living longer than expected, BBC analysis shows.

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, with 47% of them losing all support.

The NHS said patient eligibility was assessed in line with government rules.

A further 15% of patients had their continuing healthcare support replaced with the more limited NHS-funded nursing care.

'Not listened to'

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.

Charlotte Gurney describes her mum as the "backbone of the family"

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

"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Sandra's support was withdrawn, and she had to be moved to a new nursing home, financed by her husband Malcolm.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 believe had the review correctly identified Sandra's needs and risks, this could have been avoided.

Sandra broke her wrist and injured her face shortly after moving to a new nursing home

Charlotte appealed against the CCG's decision to remove the funding - the first stage of which was completed several months later.

The support was reinstated, but not fully backdated - leaving Malcolm more than £10,000 short.

The appeal had been ongoing, but since being contacted by the BBC, 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".

How does it work?

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 three months after their funding began.

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

But 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.

'Cost-saving exercise'

Andrew Farley, from specialist law firm Farley-Dwek Solicitors, said the percentage of those having their funding removed seemed "exceptionally high".

He described the assessments as being used "often as a cost-saving exercise by the NHS designed to withdraw funding from as many people as possible, even where it might not be appropriate".

In most instances, the cost per patient to the NHS over a year would be in the tens of thousands of pounds.

Mr Farley added that the failure of many nursing home providers to keep "an accurate record" of patients' needs could also lead to decisions being made incorrectly.

Dan Harbour, from the organisation Beacon which advises families, said reviews "should focus on whether an individual'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 where an individual's condition has stabilised.

Patients receiving care 'quickly'

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... taking into account the overall needs of the individual".

Northern Ireland does not operate a fast-track scheme, while Scotland uses an alternative system to continuing healthcare.