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'I fear I'll lose all I've worked for': Former NHS hospital boss blasts dementia care system

Can you imagine being diagnosed with young-onset dementia at the age of 58?

The debilitating mental effects of the disease are well-documented, and the stress of living with it is hard enough for anyone.

But for people with young-onset dementia, you don’t just fear losing your memories. You fear losing your future.

I would know — for five years ago, at just 58, I received my diagnosis.

Now, as my condition accelerates, I fear that the future I had once mapped out for myself is a mere pipe dream.

For years, I was encouraged by successive governments to save my money wisely. I didn’t smoke, didn’t drink, and always counted my pennies when they came.

Despairing: Wendy Mitchell, who worked as an NHS hospital manager, at home in Yorkshire

One day, I was told I would even be a homeowner.

And if I had a bit left over, perhaps I could leave it to my daughters.

But now, thanks to the current dementia care system’s insistence that people like me need to spend almost all our savings on care, I often ask myself: ‘Why did I bother?’

For everything that I worked hard for, including my house, will one day have to pay for care costs; care that’s often inadequate and degrading.

That’s my future... This is my life.

I spent 20 years working as an NHS hospital manager in Yorkshire. But when I’ll need the NHS most, it won’t be there for me.

Only a wealthy minority can afford the luxury of well-staffed, well-supported homes. Even if I sold my house, the sum I would get would only keep me in a good, reputable care home for a while.

Then what? Will I be carted off to a dusty corner somewhere?

When it comes to people with dementia, the Government has made it clear that we are not a priority.

I spent 20 years working as an NHS hospital manager in Yorkshire. But when I’ll need the NHS most, it won’t be there for me (stock image)

It’s more than happy to cause distress and financial hardship for those caring for loved ones, just to save a few million pounds. Yet the trauma experienced by hard-working families is costing lives.

We have known for decades that our ageing population is constantly increasing. So why have consecutive governments failed to address this social care problem?

If I had been diagnosed with cancer, I would have had an automatic right to free care up until my death.

Why should I be punished financially for having dementia? Why should I have to sell my house to cover care costs, when other conditions are supported? Is dementia really less worthy?

The much-needed Green Paper on social care was finally promised back in April, after a two-year delay. Yet our current Government has delayed it six times. Six!

That review was supposed to bring us hope. But in its place, pain, frustration and financial ruin have run rampant.

This is a disgrace. We should all hang our heads in shame.

Scandal of my sister embarrasses us all 

By Lord Blunkett  

David Blunkett's half-sister, Doreen, who had Dementia

Just over ten years ago, I received a note from then Labour Health Secretary Alan Johnson kindly asking if I would attend the launch of his ground-breaking plan to resolve the dementia care crisis.

He knew I was an ardent critic of what was then the care system, which hung dementia patients out to dry, and that I would support his demand for a £150 million pot from the Treasury which could be used to boost dementia services.

It was an admirable demand — one that, in 2009, we felt was long overdue.If you had told me then that our rotting dementia care system would remain untreated, I would have laughed you out of the room.

Even in the late Seventies, when I chaired the social services committee of Sheffield City Council, we were aware our country’s dementia care system was woefully inadequate.

At Johnson’s policy launch, he asked me to speak but, thanks to some mix up, mistakenly introduced me as the vice-president of the Alzheimer’s Society. It turned out to be a fortunate error, however, as afterwards the organisation’s chief executive actually sought me out and offered me the role. I was thrilled.

But Alzheimer’s soon came to play a different role in my life.

For little did I know at the time that my half-sister, Doreen, who died last year, was on the verge of developing dementia. Her diagnosis hammered home the debilitating impact that this disease can have on an individual with it, as well as their family.

Just imagine being told you have dementia, realising why boiling a kettle, or using a cash machine, has been posing a challenge it never did before; why the words that once sprung to mind so easily now suddenly elude you.

Doreen's diagnosis hammered home the debilitating impact that this disease can have on an individual with it, as well as their family (pictured: David Blunkett, 2005)

Then comes the second, equally frustrating blow: you are told that despite having a life-changing condition — despite the fact that you have paid taxes all your life — the NHS won’t cover your social care.

And so for many families, a diagnosis of dementia is often accompanied by financial punishment.

This is what most terrified Doreen and her husband, Jack, who was physically ill before her condition deteriorated.

Rather than go into residential care, and risk having to spend all their savings and sell their house to pay for it, they coped with care at home for as long as possible.

Eventually, Jack’s deteriorating health meant they could no longer manage, and in 2015 they moved into residential care.

Jack died shortly after, but Doreen spent almost four years in care, which forced the sale of their modest home — an asset which for so many like her is their whole life savings. Dementia is, and has long been, a most discriminated-against condition, which is why the Mail’s campaign is so important.

Pictured: Lord Blunkett with guide dog Cosby

While the NHS provides free treatment for those diagnosed with heart disease or cancer — and rightly so — people with dementia are left at the mercy of a broken social care system. The absence of financial support for every person with dementia should embarrass us all.

As the countless tragic cases highlighted by this paper have revealed, people are having to sell their family homes and use life savings just to pay for their basic care. And it’s not just people with dementia paying the price — the NHS is, too.

According to Alzheimer’s Society research, in just one year more than 70,000 people with dementia were forced to go to A&E because inadequate or scarce social care left them unprotected from avoidable emergencies such as falls, infections and dehydration — at an estimated cost to the NHS of £400 million.

If we want to remedy the betrayal of dementia patients, we must act now. For although the past 20 years has been filled with political promises, successive governments have failed to take much-needed action.

As soon as he was elected in 1997, Tony Blair claimed that he did not want ‘children to be brought up in a country where the only way pensioners can get long-term care is by selling their home’.

A Royal Commission was convened, but its recommendation for free long-term personal care was rejected a year later.

And when Alan Johnson — whose support for a ‘National Care Service’ was also taken up by his immediate successor Andy Burnham — tried to revolutionise social care, Labour’s defeat in the election a year later meant their proposals were also shelved.

In the years since, from the Dilnot review’s proposals in 2011 for a cap on care payments to Theresa May’s call in the last election for the current asset level of £23,250 — above which patients must fund themselves — to be raised, every attempt to improve our care system has fallen on deaf ears.

The 850,000 people in the UK living with dementia deserve better. Rather than delay the current Green Paper on social care for a seventh time in two years, our Government must finally commit to long-term social care reform and find a way to sustainably fund dementia care for the future.

There is no other choice.

By 2021, one million people in the UK will have dementia, and they will all need good-quality social care. Yet as it stands, the number of care homes is actually in decline — from 18,000 to 16,600 in the past nine years.

It’s already taking its toll on our finances: people with dementia have spent one million days in hospital beds when they should have been in care or nursing homes — costing the NHS more than £340 million.

This is the stark reality our new Prime Minister will face.

To end the dementia care crisis, he — whoever he is — must act. We have no time to lose.

One in three dementia payments are forced to sell their home to pay for care, shock new poll reveals

By Ben Spencer, Medical Correspondent for the Daily Mail 

One in three people with dementia have been forced to sell their home to pay for care, an exclusive poll reveals today.

Eight in ten people think politicians have failed to tackle the social care crisis, the survey found, and two-thirds believe the current system – which denies funding to anyone who owns a home or has £23,250 in savings – is unfair. Eight in ten also said the NHS should fund dementia support.

The Daily Mail is campaigning for ministers to end the dementia care cost betrayal, with support flooding in from readers, charities, doctors and MPs.

As pressure mounted on politicians to deliver reform:

Labour MP Clive Betts, chairman of the local government select committee, said: ‘This poll shows how unfair the whole system is.

‘If you are an older person who has a heart attack, your medical care is paid for.

‘But if you get dementia, and own your own home and need care, you have to pay for that care yourself and many have to sell their house to do so. It is completely unacceptable and it needs to be brought to an end.’

Experts called on Boris Johnson to match Tory leadership rival Jeremy Hunt’s promise to act

Sally Copley, of the Alzheimer’s Society, which has led support for the Mail’s campaign, said: ‘No-one should be forced to sell a home they have worked their whole lives for just because they develop one health condition and not another. This cruel lottery has to end.

‘The next prime minister must release plans of how he will find a sustainable funding solution for the social care system in the long term, which doesn’t rely on the houses of people with dementia to pay for it.’

The poll of 1,013 adults, carried out by Survation on behalf of the Mail, lays bare the impact on families.

Some 26 per cent of respondents said a member of their family or a friend had been diagnosed with dementia. Of those, 52 per cent said they had to pay for their care. And an alarming 31 per cent had to sell their home to do so.

Some 27 per cent said they had spent more than £50,000 on care and 6 per cent said the bill had exceeded an astonishing £100,000. Nearly seven in ten of respondents said they would support cutting foreign aid to better fund social care. A third said they would back a small increase in income tax or national insurance.

Boris Johnson arrives at an address in Westminster

The Mail is calling for the urgent formation of a cross-party group to tackle the funding crisis – tasked with dealing with the issue once and for all.

In the meantime, the Government must set up a ‘dementia fund’ to help families pay the extra cost of supporting those affected. And it must end the ‘double subsidy’ which sees those deemed able to afford to pay for care subsidising the costs of support for those funded by the state.

Caroline Abrahams, charity director at Age UK, said: ‘It’s fantastic to see the Daily Mail taking up the cudgels on behalf of the hundreds of thousands who are losing out massively because of the Government’s failure to act on social care. The current system is not only incredibly stingy, it is grossly underfunded too, so some people are struggling to get even their meagre rights recognised and their needs met.

‘Our new prime minister should firstly put out the fire which threatens social care today, and then get good people around him to help build something better, fairer and more fire-proof.’

Professor Helen Stokes-Lampard, chairman of the Royal College of GPs, said: ‘We are pleased to see this campaign directly tackling some of the barriers for patients with dementia. We hope it goes some way to finally addressing what has long been an unacceptable situation in England.’

Labour MP Debbie Abrahams, co-chairman of the all-party parliamentary group on dementia, said: ‘People with dementia are faced with higher costs for their care, costing an average 15 per cent more than if they had standard social care. Social care is in crisis and it leaves people with dementia and their families struggling within a broken and unfair system.

‘The injustice of people battling to get care, on top of battling the devastating effects of dementia can’t go on.’ The Department of Health and Social Care said: ‘People who need social care should not have to pay more than they can reasonably afford and we introduced reforms aimed at preventing people being forced to sell their homes to pay for their own care in their lifetime.

‘We will set out our plans to reform the system at the earliest opportunity to protect people from high and unpredictable costs.’

'Mum worked all her life. She paid taxes. Then her home was sold to pay for her care – and subsidise those who didn’t save. It’s so very unfair, I despair'

It’s just days since we launched our campaign to reform dementia care and we’ve been inundated with your heart-breaking letters about how you’ve had to sell prized family homes to pay for the care of loved ones, while those who have never saved have had their care paid for by the state. Here are a selection of your anguished accounts — and write to us at [email protected] to tell us your own story... 

When my late mother, Peggy, was diagnosed with dementia, I couldn’t look after her as I already had to care at home for my husband, Jim, who had Alzheimer’s.

Sadly, she had to go into residential care, selling her lovely home in the Cotswolds in 2005 for £176,000 to pay for the costs.

After nine years in a home, all that money, as well as her pension, was eventually spent on her care — a total of approximately £220,000.

She died in 2015, having used up her entire savings on helping subsidise others funded by the local authority at reduced rates.

Penalised: Ann Reid (centre) with her mother Peggy (left) and father Bryan

Pictured: Ann Reid's parents in happier days

It is clear to everyone who has watched a loved-one battle with dementia that there simply isn’t enough money being spent on funding care.

It’s completely unfair that people can work hard all their lives and save up for a home — often by not going on holidays — and be penalised for it if they are diagnosed with dementia.

Paying thousands every year isn’t even a guarantee of good care. In 2008, I remember going to visit my mother and found a nasty note left by a nurse, telling her not to bang on the table.

I was absolutely disgusted, and there’s no sign that our care system is improving.

The only way we are going to fix the dementia care crisis is if our Government puts it at the top of its agenda.

Ever since my mother was diagnosed, politicians have made countless promises about how things are going to get better. But time after time, their words have proved meaningless.

One can only despair.

ANN REID, Eastbourne, East Sussex.

AFTER A LIFE OF HARD WORK

When my mother was diagnosed with Alzheimer’s in 2015, she was initially cared for by her husband, my stepfather.

But after he died a year later, her dementia became worse and we had to move her into residential care. To fund the £986 per week costs, we had to sell Mum’s bungalow — and spend all of her savings. To this day, we have spent £118,800 on Mum’s care.

She worked hard throughout her life. Why was she left to fend for herself after a life-time of paying taxes and National Insurance?

SUE MORRISSEY, Brighton, East Sussex. 

The Mail’s articles and letters about those suffering have brought back painful memories of my mother and my mother-in-law, who were both diagnosed with this dreadful illness. Successive governments have — and are still — shirking their responsibilities to solve the current crisis. There are those who say the current situation is a time-bomb.

But that bomb has already exploded and nothing is being done to clear up the mess.

TREVOR HAYES, Knaresborough, N. Yorks.

I feel ashamed

My wife has vascular dementia and to get help we have suffered the insult of the local council carrying out a means-test on our finances.

I left school at 15 and started work, before being called up to do National Service aged 18. Afterwards, I worked all my life, paying every due required.

I finally saved enough to buy my house, only for it to be taken from me to fund my wife’s care. Meanwhile, those who saved nothing get financial assistance. I am now 83 and feel ashamed with the way we are being treated — especially since I’ve spent my life helping make this country the place it is.

A. ROBERTS, Chelmsford, Essex.

Selling mum's home

My mother was diagnosed with vascular dementia about four years ago.

For the next two years, my sister and I tried to support her at home but after she nearly burnt the house down we decided she was safer in a residential home.

Now, after paying £80,000 in costs, we have had to sell the family home to fund her care.

Our parents worked hard all of their lives, saving and investing, believing they were leaving a legacy to their children.

Instead their money is being used to subsidise other people’s treatment.

LES HITCH, Ware, Hertfordshire.

Our vanishing savings

My husband was diagnosed with vascular dementia in 2010. I managed to look after him until my own health deteriorated, when our family persuaded me to put him into care.

He is now 92 and remarkably fit. He no longer recognises me but appears to be contented.

Meanwhile, his £957 per week costs mean our savings are rapidly vanishing.

RHODA MILLAR, Leamington Spa, Warks.

My uncle Felix spent the last two years of his life suffering from dementia in a nursing home in Newry, Northern Ireland. He had worked all his life as a farmer, remained a bachelor and had hoped to pass on his four farms to his brother and sister.

But in 2017, his health deteriorated and he had to go into residential care. To pay for his care, his house and farms were rented out.

By the time he passed away after 17 months in May 2018, we had spent over £50,000 on his care.

PATRICIA O’HARE, Northern Ireland.

And you also expressed your fury...

Almost every family will, at some time, have someone suffering from dementia. Why can’t we maintain just half the foreign aid budget and plough the rest into dementia research?

D. Marks, Featherstone, W. Yorks.

A CARE FUND NEEDED

Everyone earning over a certain amount should have to pay in to a designated dementia care fund, with graduated payments based on their level of income.

J. SAYERS, Hastings, East Sussex.

It is about time the Government ring-fenced part of our taxes and spent it solely on dementia care.

MAIR KENNEDY, address supplied

My biggest worry

I am 75. I left school at 15, as many did in the Fifties and Sixties. Since then, I have worked every day in various forms of employment. I finally retired at 70. Now, I worry that everything I have saved could be spent on care.

ALAN HARMER, address supplied.

I left school when I was 16 and joined the Royal Navy, where I served for seven years.

After meeting the girl of my dreams, we got married and bought a house.

I’m now 83, living on my pension after my wife died last year. If I develop dementia, I will have to sell my home to fund my care. Why did I bother to strive all those years? Why did I bother to be self-sufficient?

ALAN JACOBS, Biddenham, Bedfordshire.

Cross the border!

As the Royal Commission’s recommendation for free care was rejected by the Government in 2000 but adopted in Scotland, I suggest we should take people suffering from dementia over the border.

After all, Scotland costs all of us through our taxes for this preferential treatment of their suffering old people.

Susan Middleton, Keighley, West Yorkshire.

The wrong priorities

The dementia care scandal simply shows that the majority of our politicians are happier splashing billions of our cash on foreign aid than looking after our own.

B. EKINS, Chessington, Surrey.

Hospitals treat for free those people who have smoked or consume copious amounts of alcohol. I have done neither. In fact, I have cost the NHS nothing to treat illnesses that could justifiably be regarded as, at least in part, self-inflicted.

But I do have one condition I have been unable to control.

I am ageing.

Should I have the temerity to develop dementia, I shall be judged so responsible for the illness that I shall be expected to fund my own treatment.

How does that make any sort of sense?

SUSAN YOUNG, Coulsdon, Surrey.

What’s terrible is the effect this dementia tax is having on working-class families.

Those who have scrimped and saved on meagre wages to pay off mortgages throughout their lives, but were still lucky enough to have saved something towards their retirement, are having it guzzled up by this utterly unfair system.

J. HAGUE, Wakefield, West Yorkshire.

Isn’t it amazing that the Government can pay for dementia care for people who have never contributed towards the National Health Service, and make the people who have contributed to the system all their working lives pick up the bill?

G. BRENNAN, Birmingham.

Profligate politicians

If we reined in the excesses of and the likes of profligate politicians and the Department for International Development, perhaps we could start to look after our own.

COLIN WILLIAMS, Devon.

As well as sorting out the disparity in what people pay for dementia care, we also need to ask why care homes have become so expensive.

It’s a scandal.

CASPER GORNIOK, Surrey.

It terrified me 

I am in my late 60s and the thought of being diagnosed with dementia and losing everything I have worked for fills me with terror.

WILLIAM ROSS, address supplied.

Why should a person who has been frugal be worse off than someone who hasn’t, despite both having paid into the same system?

Dementia care funding is completely unfair and needs a thorough overhaul so that all are treated the same.

KEITH MARTIN,

New Milton, Hampshire

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