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Shocking tales of your fight to get NHS care cash

Colin’s stroke left him paralysed and unable to eat, dress or wash unaided. Yet his wife Jean has been denied vital support by penny pinching bureaucrats who say he isn’t sick enough. Their story is one of hundreds told to the MoS that beg the question...

By Pat Hagan and Eve Simmons

JEAN JEFFERSON never imagined her 60s would be like this. She and husband Colin had planned weekends away in the countryside and cycling holidays on the Algarve. Instead her daily routine is an endless slog of hauling her ‘heavy-set’ husband into and out of his wheelchair, emptying bed pans and cleaning soiled sheets.

Five years ago Colin suffered a catastrophic stroke that left him paralysed and unable to speak, walk or go to the toilet on his own.

Since then, Jean, a former hairdresser from Yorkshire, has cared for him largely alone, with care workers dropping by for just 30 minutes a day to help Colin, 61, get out of bed.

But when Jean sought help from the NHS for medical and care costs, she was turned down.

She had applied for Continuing Healthcare funding, which is meant to pay for the longterm care costs for dealing with serious medical conditions such as advanced dementia, Parkinson’s or a major stroke.

But Jean was rejected on the grounds that Colin was not ill enough.

It beggars belief, but the Jeffersons are far from alone in their plight.

In a series of reports over the past month, The Mail on Sunday has revealed the scandal of families denied Continuing Healthcare funds for essential care – and we have been swamped with similar, often harrowing stories.

More in four in five applications for Continuing Healthcare funding are rejected, forcing many families to turn to expensive legal firms to fight their cases. Some who got in touch have fought decades-long battles to get the support they have a right to, with many left with little choice but to sell their homes or raid life savings to cover crippling nursing home and care fees.

EVEN former Continuing Healthcare assessors have written to The Mail on Sunday to voice their concern about the system, which they say is designed to deny funds to as many patients as possible. One nurse told the MoS: ‘I once walked out of a Continuing Healthcare assessment training session. The two NHS staff presenting it started laughing about how good they were at fobbing people off.

‘I worked in and around heath and social care for many years and never once heard of anyone getting Continuing Healthcare funding.

‘I even witnessed a nurse trying to convince her manager that a patient in the last stages of terminal cancer, in constant pain and coughing up blood, really needed NHS-funded care. The manager said no. Another senior NHS manager told me that for every one patient we pay out on, there are a thousand that we don’t.’

When Colin was discharged from hospital in 2017, Jean was told he was ‘talking a bit’ so did not qualify for Continuing Healthcare.

‘They also said he wasn’t suffering bed sores so didn’t need medical help,’ says the mother-of-two.

Last year, after several appeals, local health and care chiefs ruled she was entitled to £187 a week to cover nursing costs.

‘They said he’d only get it if he was in a nursing home, run by medical staff, not a care home,’ she says. ‘And the local one charges somewhere in the region of £1,000 per week, so what they are offering is a drop in the ocean.’

To add to the problem, her local nursing homes do not admit patients younger than 65.

‘He’d have to go to a residential home far away from home and then I wouldn’t get the funding,’ says Jean. ‘Colin is young – we could be paying for his care for 20 years. Paying for carers and other things for him has eaten through our savings already, so my only option soon will be to sell the house.’

Social services has organised for carers to help Jean, and two visit for 30 minutes each morning to help get Colin out of bed, washed and dressed. ‘The problem starts once they leave,’ says Jean. ‘Colin needs to go to the toilet every half hour or so and he needs help every time. I need to be there 24/7 in case he needs to go, gets hungry or even wants a drink of water.

‘Colin worked hard for most of his life, paid his taxes, so why won’t the state pay for his healthcare now he needs it?’

Charities say the time has come for the Government to overhaul the Continuing Healthcare assessment process, to make it far easier for families to access funding they are legitimately entitled to.

‘I’d like Ministers to hear the heartbreak in the voices of the people I speak to,’ says Dr Rachel Daly, a specialist in dementia nursing at Dementia UK and a former Continuing Healthcare assessor herself. ‘The Government needs to give this issue the attention it deserves, and sort out the mess.’

Last week The Mail on Sunday handed the Department of Health and Social Care a dossier of letters from readers who had been denied Continuing Healthcare funding and been left in the most distressing situations, and asked if Health Secretary Sajid Javid or Health Ministers Edward Argar and Gillian Keegan would like to comment. They declined.

Another person to suffer is 100year-old Harold Sutton, a Second World War veteran from Macclesfield. Last year a stroke left him bed-bound, struggling to swallow and doubly incontinent.

His daughter-in-law, 72-year-old Millie, told us: ‘The assessment was done over the phone – they didn’t even come and see him. We have had to sell his home to cover the £1,200-a-week nursing home fees.

‘It was the unfairness of the rejection that made us really unhappy.’

Rosemary Westwell, 64, from Cambridgeshire, was one of the lucky few. She won the Continuing Healthcare funding due to her husband, dementia sufferer John, but only after a 15-year battle.

The ordeal began in 1992 when then 34-year-old John, a salesman, starting exhibiting strange, aggressive behaviours, such as shouting for no reason and setting objects alight. Doctors eventually diagnosed him with early-onset Pick’s Disease – a type of dementia that initially affects personality.

‘I remember one night when I genuinely thought he was going to kill me,’ says Rosemary, who has two

grown-up children. ‘He was shouting and stamping around. I was so terrified I had to sleep in the car. It was devastating – he had always been such a kind, calm gentleman.’

Eventually John was admitted to a mental health ward in a local hospital, where a Continuing Healthcare assessment found him to be ineligible for funding.

‘I didn’t know what to do,’ says Rosemary. ‘It was too dangerous to have him at home. He had a progressive physical illness, so I didn’t understand why the NHS wouldn’t pay.’

Rosemary received visits from doctors, social workers and hospital bosses who told her she would have to move him to a care home or contribute financially should he remain in hospital.

‘We just didn’t have the money,’ she says. ‘We couldn’t afford to pay for either option.’ John remained in hospital while Rosemary continued to be ‘harassed for money’ by local health and care chiefs.

IN THE early 2000s Rosemary asked for another assessment for Continuing Healthcare so that John could be transferred to a care home. Again the application was refused. She says: ‘By then he was doubly incontinent, immobile and his body was bent into a rigid shape from all the time spent in hospital. He needed turning over every few hours to stop bed sores.

‘John had a small pot of savings, and we used it to employ a lawyer to fight his case at a tribunal.’

In 2007 a judge finally ruled that John was entitled to full Continuing Healthcare funding and he was moved to a care home. The local authority was also ordered to cover Rosemary’s legal fees, totalling £13,000.

John died in 2019, from complications related to dementia.

Rosemary says: ‘None of the stress, antagonism and muddle that I experienced should ever have happened. All patients need caring people around them, to help both them and their family cope.’

These stories are just three of hundreds of desperate tales told to The Mail on Sunday.

Here, in their own words, other readers detail their hellish experiences in battling to get the NHS Continuing Healthcare funding they are entitled to…

Health Wealth & Holidays

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