Unfair, unsustainable and undeniable; social care is failing people with dementia

Lack of investment in social care has seen too many people, often those affected by dementia, spend their life savings to prop up a broken system.

Social care is failing people with dementia

Lack of investment in social care from central Government has seen too many people, frequently those with dementia, unexpectedly spend their entire life savings and sell treasured family homes to prop up a broken system.

Disgracefully this has been going on for years, but last week we saw yet more evidence on just how truly skewed and unfair the system has becomeLaingBuisson, who are specialists in social care market data, highlighted how it is self-funding care home residents that are keeping the whole sector afloat, paying more than the cost of their care in order to subsidise other residents.

So what does this mean when we break it down?

60% of people in UK care homes rely on the Local Authority (LA) to pay the care home provider on their behalf. The remaining 40% are self-funding residents, who don’t qualify for any help and pay their care provider directly from their savings, or from the sale of their home.

The weighting between the two types of places will vary from home to home, but generally most homes have a combination of both local authority funded and self-funded under one roof.  This means residents from each category - though they will have some difference in care needs – can still expect much the same for certain aspects of their care and overall experience.

The major and systemic problems exist for all residents because increasingly cash starved Local Authorities that can’t actually meet the cost of what providers currently say they need to charge. In fact, LaingBuisson shows that for each person that needs care, the LA is falling short of meeting that cost by £100 a week.

Essentially this means that the remaining 40% of residents who pay for care from their own pocket – because they have savings, a house and car worth more than £23,250 – are forced to pay even higher bills. These bills are more than the genuine cost of their own care, but fees are inflated to effectively cross-subsidise where LAs fall short.

It is self-funders who are filling an overall funding gap in the sector of £1.3 billion a year, and keeping the sector afloat.

So how does this impact on people with dementia and their care?

Social care is failing people with dementia

Of the people in care homes, 70% have dementia. And whichever funding category they fall into, every single person with dementia is losing out under this arrangement.

No one is getting a good deal and no one is getting quality care at a fair price. It is those with dementia that, due to higher needs, already face higher fees. They are already paying catastrophic amounts themselves, topping up, or receiving inept care as the LA can’t afford it.

It is a dangerous and growing disconnect between what providers say they need and what LAs can afford, and the pockets of self-funders only go so deep. Further danger with the current arrangement is that it will eventually destroy the market itself.

Increasingly care homes are questioning the viability of the publicly funded places, and others are opting out altogether. We could face a future where there are no places left.

Local Authorities, providers, and the whole care sector are all in agreement. This crisis will never be fixed without central government investment and intervention. And it needs to happen now. We need to say enough is enough.

What you can do

Are you in receipt of Local Authority funded care? Are you topping up? Or paying for it all?

Let us know.

We want to know so we can tell both the Government and the Opposition just how big a problem this is, and how they can fix it.

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I have complained about all issues on dementia care to David Cameron and J. Hunt when they were in office to no avail. VAL

Could not agree more with all of the statements made here. We are in the process of going through all of the assessments, etc and it is appalling! Have my local MP involved too - don't think these authorities or persons in charge really have a clue as to how this affects the entire family going through it! Change is needed and soon!

Social Services should be forced to pay the true cost of care and not rely on subsidy from self funders, most of whom are already stretched to pay high fees. I would happily pay a higher Council Tax or Income Tax to fund this. Dementia is an issue which affects the whole community and the whole community should pay a fair share towards the cost of care. The extreme difficulty in obtaining NHS funded Continuing Care is another scandal.

It puzzles me since we are repeatedly told that Dementia is on the increase why the Government does not see the immediacy of putting more money into the N.H.S to help people who cannot afford to pay for their treatment in care. When we compare this to other diseases it falls at the bottom of the scale where financial support is concerned. People with a Dementia are so often those who have paid a high price on their health and work in building up the communities we have in this our time. They need our support and help to give them the best we can in this their need in their lives. This is very shameful and it is so painful to see so little is being done especially to help carers who are trying their best to cope with a loved one at home with this disease .

Don't wish to appear negative on this important subject, but I went through this horrendous rigmarole 5 years ago when my wife was ill, including letters to and from my MP and the Minister for Social Care at the time. We've had the Dilnot report since, which tried to address the situation, but all to no avail. Evidently there is no political will to end this iniquity, and as long as the issue remains tied up in party politics I fear nothing meaningful will change. Promising bits of extra funding here and there is a waste of time, the whole health and social care system needs a complete rethink, and if we need to pay more tax, so be it. Our sick and elderly, and their families, should not have to face these problems, particularly at a time when they are under so much stress anyway. We are supposed to be a wealthy country. Sorry for the rant, but I get so mad whenever I read these same stories again and again. Keep trying anyway, maybe one day the scales will fall from their eyes.

I became aware of this situation in 2002. Despite challenging the authorities, all my mother's estate was swallowed up in high fees, partly due to hiked up charges in care homes that were underfunded by social services and the unfair interpretation of The Decision Support Tool for continuing care assessments by NHS staff. I refuse to sign a form which would have allowed the Local Authority to charge me undetermined top up fees. I was told to move my mother to a 1star home from a 3 star. I refused but asked if she could be moved to a less expensive room.
This situation went on until her eventual death in 2010.
The whole experience was so distressing. I could not believe the lengths to which authorities were prepared to go in order to avoid funding.
I did eventually manage to get a refund but the process nearly broke me.

My wife's continuing care was removed as she is no longer aggressive (having had Alzheimer's for 16 years she is as helpless as a new born baby)and despite being rendered helpless by a terminal brain disease she apparently does not have a medical need.
The Local Authority (LA) although fully responsible for funding her care asked me for a top up fee. From reading about it these are only supposed to be asked for if you loved one is in a home in excess of their needs. I asked the LA for a list of homes which would meet her needs within the LA cost constraints - no list was forthcoming and the LA abandoned their demand for a top up fee.
There is a very good report on care homes at http://bit.ly/care-chains. In the 1980's 80% of homes were LA owned - now 80% are privately owned. The company owning my wife's home has reduced its tax liability by shifting from equity to debt financing. In 2005 debt accounted for 33% of its capital but by 2014 this had risen to 85%. This has saved the owners £25 million a year from 2012 to 2014 and cost the Treasury the same amount in lost tax receipts.
The homes operate on a return on capital of 12% and there is little risk involved as if a resident becomes insolvent the LA pays most of the fees. It is reckoned that £100 per week of my wife's care home fees go to repaying the debt incurred to buy the business.
The report concludes that "Putting more money into the system via higher weekly payments per bed will not produce a robust and sustainable care home sector when the financialised providers are so adept at taking money out"
Private sector good public sector bad?

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