‘NHS cut funding to my 98-year-old grandmother because she didn't die on time'

Telegraph

3 days ago

The NHS has been accused of leaving a 98-year-old to 'die without dignity' after cutting vital care funding with just days' notice.
Pearl Henderson, a grandmother from Bradford with end-stage dementia, was fast-tracked on to NHS Continuing Healthcare (CHC) in 2023. Under this valuable scheme, the NHS pays for care if a patient has serious long-term health problems.
But on Friday, the NHS West Yorkshire Integrated Care Board (ICB) axed Ms Henderson's funding despite her extremely weak condition requiring 13 hours of care per day.
It comes as experts warn of a 'troubling' rise in NHS CHC patients getting their funding axed in end of life care, particularly in cases involving the Fast Track Pathway due to widespread budget cuts.
The decision means the local authority will now foot the bill for Ms Henderson's care, but they can only afford to pay for 2.5 hours worth of visits every 24 hours. Ms Henderson's family fear the sharp drop in care hours will cause the 98-year-old's condition to rapidly deteriorate.
'They're bringing forward her death'
Her granddaughter Kirstie Lumley, 36, from North Yorkshire, said: 'She's really frail, she probably weighs about four and a half stone now, she needs constant care, she has absolutely no mental cognition any more.
'We're not trying to extend her life at all, she's 98, but we're trying to get her to die with some kind of dignity.
'She's going to be sat for 21 hours a day alone, soiled. All they're doing is bringing forward her death, leaving her unsafe and unclean. The thought of it is heartbreaking.'
Ms Lumley is concerned the ICB ended her grandmother's care package in order to cut costs.
'She was fast-tracked with dementia in 2023 and she's basically lived longer than expected. From their perspective, she hasn't died on time. She was expected to die within six weeks of leaving hospital.'
Judith Cummins, MP for Bradford South, said her constituent's situation was 'deeply distressing'.
She said: 'I have been in contact with the West Yorkshire ICB to seek an urgent review of Pearl's case, and I will continue to support Pearl, Kirstie, and their family on this matter.
'I will always fight to ensure that my constituents can live with dignity.'
Extreme funding cuts
A growing body of evidence suggests this is not an isolated incident but part of a concerning trend.
Data obtained by The Telegraph shows a rise in the number of vulnerable patients stripped of critical funding by the NHS.
Last year 1,600 individuals lost access to continuing healthcare following a review by the ICB, up from around 1,300 the year before, according to figures from 16 of England's 42 ICBs. These organisations are responsible for deciding who qualifies for CHC funding.
Of the 16 ICBs that provided data in response to Freedom of Information requests, 12 had seen a year-on-year increase in funding withdrawals.
In some cases, the number of withdrawals had more than doubled over time.
For example, NHS Norfolk and Waveney ICB cut funding for 127 individuals last year – up from 72 the year before and just 23 in 2021-22. Similarly, NHS Greater Manchester ICB decided 191 individuals were no longer eligible for funding last year following an assessment – up from 185 the year before and just 107 in 2021-22.
Meanwhile the NHS Suffolk and North East Essex ICB stopped paying for care for 62 individuals last year, compared to 15 in 2023-24 and fewer than five in 2021-22.
Experts blamed the cuts on funding pressures. Jane Townson, of the Homecare Association, said: 'The driver is that NHS ICBs are required to reduce running costs by 50pc, so there is cost cutting all over the place.'
This year, ICBs were asked to reduce budgets as part of the Government's major NHS reforms. But this has put more pressure on local councils – who must often step in to cover the cost of care.
Almost three quarters of social care directors have seen an increase in the number of people requesting care from local authorities because they no longer qualify for NHS CHC following an assessment, according to a recent survey by the Association of Directors of Adult Social Services.
James Urquhart-Burton, of Winston Solicitors, said he had noticed a 'troubling' rise in NHS CHC patients getting their funding axed, particularly in cases involving the Fast Track Pathway.
Fast Track is intended for patients who may be approaching the end of their life. But Mr Urquhart-Burton said he had seen ICBs cutting Fast Track CHC funding 'within weeks' of granting it.
He went on: 'These cases often involve individuals who are rapidly deteriorating and entering a terminal phase – precisely the circumstances Fast Track CHC is designed to support.'
Ms Henderson, who first obtained funding under the Fast Track, requires regular visits throughout the day to feed and clean her and prevent her from accidentally harming herself, for example, by falling out of bed.
She used to receive eight 30-minute visits plus a nine-hour night sit, totalling 13 hours of care every 24 hours. But the local authority can only stretch to four 30-minute visits per day and one 30-minute visit at night.
Ms Lumley believes the NHS West Yorkshire ICB failed to follow the correct procedure when reassessing her grandmother's needs.
Vulnerable patients pay the price
ICBs use a complex set of criteria to assess health conditions. According to NHS guidelines, reviews should take place after three months, and at least every 12 months after that, to check if the care package remains appropriate. After that time period, the person may be fully reassessed.
However, the guidelines state it is not appropriate to reassess a person given funding through the Fast Track who is rapidly deteriorating.
Ms Lumley said there was no evidence a review took place before her grandmother was reassessed.
In addition, an assessor told her the funding was going to be cut before they had even finished the assessment.
'When the CHC assessor came into the meeting, she said, 'I'm not here to make a decision, I'm just here to fact find.' And then before she'd even left the meeting she said, 'Look, usually we'd go away and discuss it but, I'll be really honest with you now, we're going to pull it.''
Mr Urquhart-Burton said he had seen more ICBs giving up on preliminary reviews. 'In many instances, these assessments are being arranged without a preliminary review of whether the care arrangements remain appropriate, as outlined in the National Framework for NHS Continuing Healthcare.
'This not only undermines the intent of Fast Track funding but also places undue pressure on families, who are often given very short notice and little support in navigating the process.'
Ms Lumley said: 'We were so proud of the NHS, it stood out across the world. And now, you look at it and think: 'What happened?'
'My grandmother has paid tax all her life, and she's never claimed a penny. All the hundreds of thousands of pounds she's paid in tax throughout the years, and it doesn't give you the ability to die with dignity in the UK.'
A spokesman for NHS West Yorkshire ICB said: 'We have a responsibility to ensure that continuing healthcare decisions are fair, transparent, and based on assessed need, in accordance with the National Framework for NHS continuing healthcare and NHS-funded nursing care.
'These assessments often involve people who are frail or have multiple needs, with families and carers providing considerable support. We appreciate that continuing healthcare decisions can be significant for individuals and families, especially in complex and sensitive circumstances, with outcomes potentially causing some disappointment and distress.
'While we cannot comment on individual cases, we can confirm that we are reviewing the matters raised here in line with our policy and complaints process.'
A spokesman for NHS England said: 'Eligibility for NHS continuing healthcare funding is determined on an individual basis by health and social care professionals in line with government guidance and regulation, to ensure there is a consistent approach across the country.'
A spokesman for NHS Greater Manchester ICB said: 'While we've seen a rise in referrals and fast-track cases across Greater Manchester, which can lead to more reviews and occasional funding changes, all decisions are made using a nationally governed framework that ensures consistency, fairness, and transparency.
'Our priority remains to support individuals with compassion and ensure their care needs are fully met.'