Dementia : NHS Or Social Care ? Letter To The Guardian In 2014

Interlocks with the SOCIAL CARE GREEN PAPER THREAD …my conundrum for a cancer patient also suffering from dementia … two different systems / two different funding methods … madness ?

The following letter is well worth a read … and finished off by a visit to the main SCGP thread.

**_If you have cancer, the NHS will pay for care. Got dementia ? You’re on your own.

Andrea Needham

My mother’s dementia is arbitrarily classed as a social, not medical, condition, so she gets little help with her care costs. This is unfair._**

**_Last week, my father received a call from the care home that looks after my mother.

Due to cuts, incontinence pads were now being rationed by the local GP surgery. We would have to start paying for extra pads for my mother, who has severe dementia. We had previously fought a long battle with the district nurse to enable Mum to be provided with incontinence pads, and now it appeared that we might as well not have bothered.

This new measure came as no surprise; after five years of dealing with dementia, our family is only too aware that if your loved one is unlucky enough to have the disease – as opposed to, say, cancer – the NHS is of limited help. Unless you have almost no money of your own you will be solely responsible for paying for all your needs.

A new report by the Alzheimer’s Society on the cost of dementia estimates that almost £6bn a year is spent on privately funded care in the UK. In addition, family members provide unpaid care worth a further £11.6bn a year. Overall, people with dementia and their families are picking up two-thirds of the costs of the disease, more than £17bn a year. This is a staggering sum, which the Alzheimer’s Society has described as a “dementia tax”.

In response to the report, the health secretary, Jeremy Hunt, has claimed that the government is “transforming the way people pay for care, capping the amount they have to pay and providing more financial help”. He was referring to the proposed implementation in 2017 of the recommendations of the Dilnot report into the funding of social care. These plans sound great: there will be a lifetime cap on care costs of £72,000. However, this will not be backdated, so even if you have spent well over £72,000 on your care when the new cap comes in, you will be back to zero.

In addition, the cap does not include the so-called “hotel costs” of living in a care home, which will be charged separately and have been set at £12,000 a year. I don’t know how many hotels Hunt has stayed in, but my guess is that most will have been a little more salubrious than the average care home. This is simply a further tax on those with dementia. Were my mother able to live at home, she would not be spending anything like £12,000 a year simply to feed and house herself, but because she’s in a care home that’s what she’ll have to pay.

In reality, the new system is likely to benefit only a few. A study by the Institute and Faculty of Actuaries found that only 8% of men and 15% of women entering care at the age of 85 would benefit. One of the authors of the report stated that “anyone who is expecting that the cap will pay for care is in for a shock”.

My mother is better off than many of her generation and some would say it is only fair that she pays her way at a time of austerity. But if she had smoked all her life and now had lung cancer, all her care would be paid for. This would also be the case if she had been grossly overweight and was now suffering from heart disease or type 2 diabetes. She could have driven recklessly, crashed and spent months in hospital without having to pay a penny.

She did none of these things – she was a slim, fit, vegetarian, non-smoker – yet has to pay for all her care because she was unlucky enough to develop a condition that is arbitrarily classified as a social rather than medical problem.

This is not to say that people who could be considered liable for their condition in some way should be made to pay. If we have an NHS that is free at the point of use, it should be free for everyone; there is no room for moral judgment. Rather, it is an argument against the randomness of a system that will pick up all the costs for one disease, but none for another.

Currently, my mother is paying £36,000 a year for care. This will continue until almost all her savings are gone. At that point, although she will stop paying upfront, the local authority will put a charge on my parents’ house. When my father dies, they will collect on it. Mum worked as a teacher for most of her life, paid her taxes and probably troubled the NHS with some minor ailment less than once a decade. But when she finally needed it, it wasn’t willing to provide her with as much as a few incontinence pads.

How can this be right ?_**

In a word … NO !

It’s a political decision that leads to one illness being treated under NHS criteria … free at the point of delivery , and funded through general taxation … with the second being determined by the size of your bank balance.

Time to recombine those ugly twin sisters … NHs and Social Care … under one roof , and both funded through general taxation.

Anything else ?

Not an option … either in the short / medium or long term.

Dementia CAN be funded by NHS Continuing Healthcare - google the Grogan case.

**_In 2005 Maureen Grogan challenged the NHS in the High Court for care funding…

Court cases for NHS Continuing HealthcareMaureen Grogan’s family challenged her local Primary Care Trust’s (PCT) decision to deny her Funded Nursing Care.

(At the time it was a PCT, whereas now it would be a Clinical Commissioning Group – CCG.)

In January 2006 she won her case.

Like the Coughlan Case, the Grogan Case has given families who are pursuing NHS Continuing Healthcare further clout in their legal argument.

Challenging the NHS can be a hard fight, and it helps enormously to be able to refer to and take courage from people who have already succeeded.

As with Pamela Coughlan, Maureen Grogan and her family also deserve our immense gratitude.

Criteria “ Fatally flawed. "

The judgment in the Grogan Case in the High Court for England and Wales showed that the criteria used by the NHS in their care funding decision had been " Fatally flawed ” and that Maureen Grogan’s should not have had to pay for her own care.

Clear primary health need

At the time Maureen Grogan, 65, was chronically ill with multiple sclerosis and additional health needs, including dependent oedema and the associated risk of ulcers. She had nil mobility, was totally dependent and also experienced cognitive impairment. She was in a Nursing Home and she had already had to sell her house to pay for care.

Incorrect decisions

The NHS had care assessed her three times as ‘" Ineligible " for NHS Continuing Healthcare – even though the care assessments showed she had substantial health needs. She was receiving the (then) top band of Funded Nursing care (FNC) – also known as Registered Nursing Care Contribution (RNCC).

High Court judgment

The Grogan Case came after the landmark Coughlan case and relied heavily on the legal argument that came out of that case. The final judgment in the Grogan Case found that Maureen Grogan’s local NHS Trust (Bexley) had moved the goalposts in terms of defining her level of need – with the result that Maureen Grogan had repeatedly been found ‘ineligible’ for NHS care. The judge ruled that the NHS should pay for her care.

The PCT had not followed the Coughlan Test in it’s decision-making process.

Since the Grogan case, new national guidelines about NHS Continuing Healthcare funding have been drawn up in an attempt to make things clearer. However, despite this, tens of thousands of elderly people with health care needs as their primary need are still being forced to pay for their own care.

Find out how Care To Be Different can help.

Read about the Coughlan case.

The Coughlan case and the Grogan case: Your 9-point Checklist for NHS Continuing Care_**

Which takes us over to the main CHC / NHS CONTINUING HEALTHCARE thread :
And the link at the bottom of the article already posted thereon :

Coughlan case and Grogan case checklist for NHS Continuing Care

In a broader context , does that mean ANYONE with a " Dual " condition … say cancer / dementia … should apply for CHC / NHS continuing Healthcare funding ?

Seems so … HOW MANY OUT THERE EVEN KNOW OF THE COUGHLAN / GROGAN CASES … one spinning off from that main thread … and yet another one … RATIONING ;\

Different issue or … paramount to the argument for NHS and Social Care to be recombined … in some cases ?

Therein lies a discussion for the REAL professionals out there … in the mode of Professors Clements and Beresford ???

Could get interesting … once that GREEN PAPER is published ???

The new rules are actually tougher, to the extent that if she was applying now, Coughlan would not have been eligible, yet it was her case that was supposed to be influencing these rules. Utter nonsense.

It seems that CHC / NHS Continuing Healthcare needs to be in the same discussion as social care funding.

Logical as it’s a " Hybrid " of both.

Not for us to try to introduce it as our interest is one party removed.

BUT … still affects all family / kinship carers living in property with carees needing " Assistance " …what that " Assistance " is … NHS / CHC / NHS Continuing Healthcare / Social Care … a matter neediing claification within the Green Paper.

Which brings us back full circle to … THE FUNDING OF SOCIAL CARE.

Even then , cannot be discussed in isolation of the NHS and Uncle Tom Cobley … and all ?

Brexit ?

That’s the easy one … social care ?

As a byeline , I did request CUK to consider inviting certain guests for a forum session :

4 montha and a few days later , nothing back.

Professor Luke Clements was top of my list …

I actually don’t have that much sympathy for those wanting dementia care paid for under the NHS!

The cost of dementia care is what it is - ie, £100 a day.

Until we find a cheaper way of caring for those with dementia (or, ideally, a cure - or, better still, reliable ways of preventing it!), that exorbitant cost will remain.

SOMEONE has to pay for it.

At the moment, the NHS is ‘free at the point of care’ to EVERYONE - it is not means tested. Social care (ie, dementia care), IS means tested.

Maybe it’s the NHS that should be means tested AS WELL! (ironically, ‘rich folk’ actually mostly subsidise the NHS as in, as with education, they ‘go private’ and so never actually use what their own taxes pay for!).

I don’t think it is ‘right wing’ to say that those in need of social care should pay for it themselves if they have the financial means.

After all, one very LEFTIE political recommendation is that there should a 100% death duty for ALL of us, that not a single one of us can pass ANY of our own wealth to our children - the whole estate should be ‘consfiscated to the state for redistribution to the poor’.

(We’ll leave aside what that would do to incentivising ‘wealth creation’! I myself refuse to earn money if I have to pay 40% higher rate tax on it. I just WILL NOT work for only ‘half’ the worth of my work, so the state can pocket the other half!) (20% tax I’m OK with!) (well, it’s 30% anyway, once you throw in National Insurance contribs!).

So, isn’t it actually MORE ‘left wing’ to insist that dementia care IS means tested, and that if you are rich enough to own a house then you are rich enough to pay for your own residential care, and your kids can go off and earn their own money and not expect to inherit your house ‘free’! (ie, while having your care paid for by tax payers!)

So, my own take is that I don’t think dementia care should be on the NHS without means testing.

Has anyone (eg Carers UK!), done any calculations on what a non-means-tested dementia-care system would cost the country right now>

ie, how much is the total being forked out by dementia patients who are self-funding, both per annum, and for, let’s say, a five/ten year horizon (ie, however long they are likely to need dementia care for)

I can see that my MIL, three years in full time residential dementia care, spent £100,000 (a hundred pounds a day, therefore £36,500 a year)(oh, and another extra hundred in a leap year!)

How many self-funding dementia patients are there in the UK right now? Any idea?

Because however many they are, if the NHS had to pay for them, that’s what it would be on our collective tax bill for the NHS!

Maybe one ‘compromise’ would be for there to be some kind of annual ‘per capita’ for ALL ‘elder care’, whether it is dementia or anything else.

Just as the education system is based on a per capita for school children (more for secondary school children than primary, as the former is ‘more expensive’ than the latter), so maybe the UK could do similar for ‘elder care’ (after, say, the age of 80/85).

That ‘per capita’ could be set at a level that would ‘co-fund’ care, so that families could hope to salvage ‘some’ of the estate of their parents??

But, again, unless it were means tested, we’d still end up paying more in taxes.

BUT, yet again, since it I the ‘wealthy’ who pay MOST of the tax revenues in this country, maybe it is just a question of circulating the money from Peter to Paul! The rich pay either way - either in direct fees for their dementia care, or in higher taxes to get it ‘free’ from the NHS!

Plenty of the above for the main SOCIAL CARE GREEN PAPER thread.

Social care … depending on one’s bank balance ?

Still … that’s for the main thread … after all , how many MILLIONS will be affected by it.

And , for the 14 million or so who are on " The Street " … a two tiered system ?

An Issue which is only part of the bigger picture … starting with income inequality … and all stops to the big one … just what type of society do we want to live in … perhaps ?

What we REALLY need - until either a cure for, or reliable means of preventing, dementia - is a CHEAPER way of caring for them.

WHY does it have to cost £100 a DAY?

The trouble is, the ONLY way to reduce that cost is via, I fear, ‘sleepy cocoa’. Maybe not ‘the Big Sleep’ (a tad controversial!!!), but at least to make them ‘sleep all day and all night’ maybe in rows in a dormitory, where they are ‘blissfully unconscious’ and basically ‘sleeping towards their own death’.

ie, we just totally ‘give up’ on anyone with dementia, and our sole aim is to ‘hasten death coming naturally’ as unobstructedly as possible.

Trouble is, some would say that is (in Swiftian terms) too much of a ‘modest proposal’…???

But if we don’t do that, then, yup, it’s going to go on costing £100 a day.


it’s going to go on costing £100 a day.

NHS costs per day per patient … some needing more treatment than others ?

Equal footing … and funding ?

Still … that’s for the MAIN thread.

Yes, I’m sure an inpatient in a hospital costs more than £100 a day!

Probably more like two or three hundred.

But that isn’t really the point, is it? No one ‘lives in hospital’ for years and years (except if you are in a coma or whatever!). ie, no one expects to ‘live out their life’ in a hospital ward.

The only important calculation is what the current total spend on self-funded dementia care is per annum.

Add that to whatever the councils are forking out for the sub-£23,500 residents, and you have the total annual cost of dementia care in the UK right now.

Do we dump that entire figure on the NHS??

We really are only talking about the self-funders, though. Otherwise it’s just an arbitrary question of whether (non-self-funded) dementia care comes off the SS budget (DWP?) or the NHS budget (DoH). It’s all the same tax money!

It all boils down to the asymmetry between the SS and the NHS.

NHS is NOT means tested, SS though IS means tested.

Again, it would interesting to know how many people who have private health care (Bupa etc), actually use the NHS at all?

There are most likely ‘tiers’…

eg, folk like me who use the NHS for (1) GP services and (2) medications (free to me now I am ‘old’!) and (3) A & E services (ie, anything I don’t have to ‘queue’) for.

Everything else I go private (ie, all hospital care).

But I now some rich folk who go to private GPs. I guess they would still agree to ‘slum’ in and NHS A&E department if they were in a car crash etc!!!

By the way, if this thread is based on a whingeing letter to the Guardian, I’m astonished!

ie, I’m astonished that the Guardian should sympathise with a ‘capitalist pig’ house-owning person trying to wriggle out of paying for their own dementia care!

Now, if it were an illegal immigrant trying to get free dementia care, that would be right up the Guardian’s self-righteous street!!!


Do we dump that entire figure on the NHS?? >

In my opinion , yes … and fund through general taxation.

It’s the politicians that make the distinction as to what is what.

The present system does no favours to either " Half " of the carer army … those above and those at / below the Official Poverty Line.

A home is NOT income … yet it is used as such under the present system … and having hardly any income prevents millions accessing social care through the sheer cost of it.

A level playing field for all … funded through general taxation based on the ability to pay ?

Inequality in society is a much bigger issue !

Again , plenty more on the MAIN thread … time for anyone with an interest in this issue to add their contribution to it ?

Once that Green Paper is published , all bets are off !

Whatever that says won’t affect me … how about you ?

“In my opinion , yes … and fund through general taxation.”

Well, as I say, ironically it won’t make much difference in the end, as most tax revenues come from the better off anyway!

So, whether I sell my house to pay for my eventual dementia care or just pay more in tax so the NHS can pay the care home fees, won’t really make much difference to me…IF I GET DEMENTIA!

The trouble is funding it through general taxation is that you are forcing all those who DON’T get dementia to pay for those who DO.

Just like state pensions in fact! my poor husband paid in THOUSANDS in National Insurance during his working life, and never lived to claim a penny of it back in his own state pension.

So, should the ‘healthy’ pay for the ‘unhealthy’…???

What if the ‘unhealthy’ are unhealthy through their own selfish irresponsibility (obesity, addiction, etc etc)(or, of course sporting accidents!!!)

“Inequality in society is a much bigger issue !”

Inequality of WHAT?


Genetic health/illness?

Inherited wealth?

Maybe taxation to fund the NHS should be based on the following -

Those who KEEP HEALTHY do NOT pay the ‘NHS-contribution’ in their tax!

That would INCENTIVISE people to stay healthy!

At the moment, the problem is there is no DISINCENTIVE to NOT stay healthy! ie, I can get as fat as I damn well like, and STILL get treated on the NHS ‘free’.

If we rewarded people (ie, through lower taxes) who make an effort to have health lifestyles, then the eventual cost to the NHS would more than cover the ‘loss of tax revenue’ !

It’s a question of finding the right motivation - carrots as well as sticks.

“Inequality in society is a much bigger issue !”

Inequality of WHAT ?

Every sector of society one cares to look ?

The degree of " Inequality " is governed by political decisions.

Even ability can be stifled if the monies to progress are not there.

One born with a disabled will have an uphill struggle for the remainder of his / her life.

Even the cradle lottery … being born to the " Right " parents.

As carers , we know that inequality only too well … with half of the whole army with no option other than to be close / at / below the official poverty line … no choice during our caring days … unless , of course , said caring done within a family unit with at least member the breadwinner ?

We even see that in CUK … all energy expended on one half , leaving the other half swinging in the wind.

It’s how a society deals with " Inequality " that is the true judge of what kind of a society it really is.

The " Trickle down " policy seen over the decades in this country is fast being shown up for what it is … a flawed policy … the maintaining of wealth and power at the expense of the many … Austerity being it’s current God.

I would say that few people would disagree that those who are worse off through no fault of their own deserve some help from others.

But, say, does a very ,very elderly person, who has had a LOT longer life than many folk, deserve huge amounts of other people’s money spent on them just so they can go on living EVEN LONGER??