The dementia sufferers stripped of funding ... and turfed out of care homes
How health experts cruelly change their minds on who’s in need — with devastating consequences
ALZHEIMER’S and Parkinson’s sufferers are being stripped of vital care funding and turfed out of their nursing homes by cash- strapped local health authorities.
Some of those affected cannot walk, talk and are incontinent.
A Money Mail investigation found about 21,000 people who suffer from severe conditions are being put through gruelling ‘reassessments’ of their care needs every year.
If they fail to prove they are still ill enough to qualify for financial help, their funding is removed — even if they have received the money for years and their condition has deteriorated.
Figures from Freedom of Information requests to local health authorities indicate a 272 pc rise in the number of people being stripped of funding.
In the worst cases, elderly people face draining their bank accounts to pay for the care they need. Those who can’t are being moved to cheaper nursing homes.
The controversy centres around something called NHS continuing healthcare (CHC) funding.
This payment, typically of around £1,000 a week, is awarded to people with complex, severe or unpredictable health needs to pay for their care.
The rules around who qualifies are vague and just one in three who applies receives the payouts.
If funding is granted, the care recipient is usually reassessed annually.
A panel reconsiders the person’s needs under 12 points, ranging from whether they can communicate, are continent and can move and feed themselves.
NHS bosses say they must check the sick person is getting the right care. But funding can also be withdrawn if the person no longer meets the right criteria. Any care recipient with assets of more than £23,250 must then cover the costs or face being moved to a cheaper home.
Fears are growing that health bosses are taking a hard-line approach that is hitting people with degenerative conditions such as Alzheimer’s, Parkinson’s and motor neurone disease.
NHS ENGLAND has asked Clinical Commissioning Groups (CCG) — the bodies in charge of health care in local areas — to cut £855 million from their CHC and NHS funded nursing care budgets by 2021.
Experts say it is often unclear how decisions to remove funding are being made. They say some patients are having it removed if their condition is under control.
Matina Loizou, senior policy adviser at Parkinson’s UK, says: ‘Forcing people with degenerative conditions to be reassessed for CHC is monstrous. It is a scandal that funding is being removed.’
The cutbacks threaten to cost Pauline Sutton-Harvey, a 79-yearold dementia sufferer, her care home place. For 25 years, Pauline was a much-loved teacher in Sheffield. Today she is unable to talk, walk and struggles to stand. She is doubly incontinent and is fed only liquids.
It is difficult to imagine how her health needs could be any greater.
But three weeks ago Pauline’s family learned she had been reassessed and her CHC funding was being removed.
She faces paying £1,000 a week to stay at Woodland View, the advanced dementia care home where she has spent three years.
Local healthcare bosses had already planned Pauline’s move to another nursing home in the city, which has been rated as ‘requiring improvement’, until her sons David and Richard found out and intervened. They fear the impact of any move on their mother — who lost her husband, Jack, in January — and are appealing the decision. Pauline has been allowed to stay for now.
David, 57, an accountant, says: ‘We were livid when we heard. We’ve not received any proper answers from the local health authority. How can they argue she is less ill than three years ago and her needs no longer qualify for funding?
‘Our mother paid into the system all her life and when she needs help it is no longer there.’ All residents of Pauline’s nursing home — as well as another nearby for dementia sufferers — have been told they will be reassessed.
So far, four residents are understood to have lost their CHC funding. Like Pauline, they face the prospect of being forced to move to another care home which their families fear may not cater specifically for their needs. Or they or their families face dipping into savings or selling property to cover the fees. Sue Harding, an ex-civil servant campaigning for the families, says: ‘Many are not sleeping or eating and it is heartbreaking to see them worry. A man in his 90s comes in daily to help feed his wife. He looked at me with tears in his eyes and said: “They are torturing us with this.” ’
Data supplied by the CCGs that responded to our FOI requests show numbers receiving CHC soared from 30,100 to 72,612 between 2013 and 2016 — a 140pc rise. But those having the payout removed rose more sharply from 593 in 2013 to 2,211 in 2016 — a 272pc increase.
It is unclear how many had degenerative illnesses, but experts say roughly two-thirds of people who receive CHC suffer from one.
Last year, the National Audit Office revealed that, since March 2015, people have been receiving CHC funding for shorter periods. It said this may be because people only get funding in the final few months of life or because more payments are being cancelled.
Alzheimer’s sufferer Jean Chipperfield finally received CHC funding in 2012, after three attempts.
But in 2016 Great Yarmouth And Waveney Clinical Commissioning Group said that Jean’s health needs were not great enough to justify the funding. She died just months later.
Jean’s son Mark, a 54-year- old data manager, used the funding to create a team of carers to help his mother stay at home. He was forced to drain her bank account to pay for nursing care in her last days.
Mark, from St Albans, says: ‘My mother died unfunded and uncared for by the NHS with us fearing about the future when her own funds ran out. Mum’s conditions were clearly impacting her far more than in 2012. It was totally unacceptable to remove the security of funding later on.’
Incidents where Great Yarmouth And Waveney CCG removed CHC payments rose by 468 pc between 2013 and 2016.
Rebecca Hulme, chief nurse with NHS Great Yarmouth And Waveney CCG, says funding recipients are assessed annually by a nurse and social worker: ‘If a patient’s care needs or presentation has changed between reviews, this may affect whether they still meet the criteria for CHC.’
A Sheffield CCG spokesman says reassessments are taking place across the city to update records and check whether patients’ needs have changed and if they are receiving the right care.
An NHS England spokesman says: ‘Spending on continuing healthcare is going up as more people are being supported, but within the national rules it’s then up to local health services to decide who is eligible.’