continuing care fees and costs

[Wirralson]

It's best to get everything in writing borisa.
Also tomorrow ask if you can have a copy of the checklist.

http://www.solicitorsfortheelderly.com/assets/media/NHS_CONTINUING_HEALTHCARE_BOOK_MARCH_2014.pdf

Quote:
Argue that the former deputy or attorney is acting in the
best interests of the person by asking for such medical records in order to maximise
that person’s right to any funding that may be available, whether it be for NHS
continuing healthcare funding or the NHS funded nursing care.
It is best to make a simple request for access initially because an authority may be
willing to grant access.
17.6 What to do if access if refused
The law requires public and private interests in confidentiality to be weighed against
the public and private interests of disclosure.
It has been argued that if a carer requests access to social service or health records
on behalf of someone lacking capacity, for the purpose of bringing a potential
review on their behalf, access should be given, if there is no suggestion of harm to
any person. End quote.

Good luck.

The above slightly over-simplifies things - note especially the "it has been argued" - they omit to add "not always successfully". Actually the argument given is pretty weak, although access would probably be given to a solicitor, even one acting without instructions, on behalf of an applicant.

When trying to obtain access to records for CHC purposes, I'd suggest it is worthwhile writing something aloing the following terms:

"I am [name], and I am the [relationship with patient]. [explain if there is an attorney or deputy, why they are not acting or what your reltionship is. I am writing for access to [patient details, name. dob, address, NHS no (if known)] under section 35 of the Data Protection Act 1998, whcih permits disclosure fo personal data to third parties for the purposes of exercising, defending or establishing legal rights and for legal proceedings, including propspective legal proceedings, and Schedule 3 Paragraph 6, which permits the disclosure of sensitive personal data (in this case, health records) for the same purposes."​

I can't guarantee that this will work, and if I received such a letter in the day job I would still be under an obligation to question a number of things (identity fo requester and proof of relationship and purpose), but success would eb more likely. Oddly, it is easier with a solicitor involved, as when they make a request there is an implicit professional undertaking - in effect, to an extent they can be assumed to have checked the identity and established the good faith of the person making the request.

Good luck

W

Edited to add:

I note you say the NHS and GPs are not a problem - I would expect them to disclose once they were certain of your identity and relationship with the patient. Care Homes usually haven't a clue about the Data Protection Act 1998 and disclosure or Information Governance generally.

W

 

[Wirralson]

By all means, but the problem is inherent in, and consequence of, the original NHS Acts (there were actually 2 - one for Scotland and one for England) and the National Assistance Act. Changing this in a meaningful way is one of the more complex tasks for policy makers and parliamentary drafters. Any change may well not involve an expansion of the use of public funds, but in more comprehensive restrictions on eligibility. Be careful what you ask for: you might get change but not of the kind you want. For all the campaigning mentioned on TP about expanding eligibility, there is also lobbying against such expansion.

W

 

[Saffie]

In the lead up to the election, this issue really needs to be brought up with prospective MPs

Wirralson, could you please edit my name from the quote you used.
The poster's comment regarding the above was not in reference to my post but to what she wrote subsequently.

 

[katek]

Wirralson

My post referred to the fact that funding is a problem that is not going to go away and can only get worse. At present, the government seems to turn a blind eye to the fact that the NHS do not abide by the Coughlan judgement (which set the boundary between what constitutes health and 'social' care) and pass on the costs to the patients. But what will happen when social services can no longer support both the non self-funders and the self-funders whose money has run out? Therefore some sort of parliamentary action is long overdue.

 

[Wirralson]

Wirralson

My post referred to the fact that funding is a problem that is not going to go away and can only get worse. At present, the government seems to turn a blind eye to the fact that the NHS do not abide by the Coughlan judgement (which set the boundary between what constitutes health and 'social' care) and pass on the costs to the patients. But what will happen when social services can no longer support both the non self-funders and the self-funders whose money has run out? Therefore some sort of parliamentary action is long overdue.

The Coughlan judgment did NOT "set the boundary between heath and social care". This is a common misconception. It laid down guidelines as to how the distinction between healthcare (within the scope of the then NHS Act) and s21(8) of the National Assistance Act 1948 should be interpreted. It did not say "if someone is this ill" they get NHS funding". It said, in effect, "this is how the NHS should go about exercising the discretion conferred on it by law deciding if an individual case falls within scope of the NHS Act or not." And contrary to your view, the NHS goes to some lengths to abide by the Coughlan judgment, and the NHS and DH have issued copious guidance and enshrined it in law to prevent some of the more egregious nonsenses perpetrated by SHAs. There are some spectacular exceptions, and more than a few less spectacular ones. It is nevertheless an unfortunate fact that Coughlan (and St Helens) do not actually help applicants for funding as much as some on here think they do. Although MS Coughlan won her case for funding, the appeal the NHS made on a point of law was a point where the NHS actually got what it wanted. (They had conceded the duty to pay on other grounds - essentially a variant of breach of promise.)

And your penultimate sentence makes little sense. When a self-funder's asset fall below the threshold, the public purse (i.e. the local authority in such cases) bears the cost. From a policy maker's point of view it is hard to see real justification for a change. Effectively, and change to NHS funding of more of what is presently considered social care would result in all taxpayers subsidising the inheritances of the wealthy. When presented with this, most politicians baulk at it, which is hardly surprising giving the hostility it would create. If social services "run out of money" they must either cut other services, raise a supplementary council tax charge, seek further support from central government, cut the costs of social care or borrow. LAs are pretty good at scaremongering. I used to have dealings with one London borough who pointed out that by 2024 their entire budget would be swallowed up by adult social care costs. But I don't think Parliamentary action is going to result in the kind of publicly-funded bonanza which you seem to envisage. It's more likely to start the beginning of the end of free at the point of delivery health care. The French and some US states and Canadian provinces pass on the costs to the children of the person needing care - I don't see that happening here.

W

 

[katek]

Wirralson

If the Coughlan judgement did not actually set the boundary between health and social care, it did at least reiterate the 1948 Act stating that there was a legal upper limit as to what healthcare services could be provided by Local Authorities. It said such provision had to be
1) merely incidental and ancillary to the provision of accommodation which a LA is already under duty to provide
2)of a nature that an authority whose primary responsibility is to provide social services can be expected to provide

Ms Coughlan (with her relatively basic daily healthcare needs) was considered to be beyond LA responsibility.

The DST was then introduced as a way of somehow measuring and comparing the level of health needs which might be very different from one patient to another. Ironically, if Ms Coughlan were assessed today on the DST she would score very low and not qualify for CHC. In your personal opinion, do you think that people (with Alzheimer's or other illnesses) who score say, one severe and several highs, should also not qualify? Because that is what is happening. It is happening because current budgets can no longer meet the growing demand. therefore something needs to be done.

Re funding, you say that most politicians would baulk at increasing NHS funding to cove long term care as it would be unpopular with voters. However, it was precisely this 'head in the sand' attitude that I said we should be challenging, as people are clearly not happy with the present system either. You then go on to say that if social services can no longer afford to pay for health care, they could raise council tax or seek support from the government (i.e. taxpayers), but I fail to see why that solution would be any more popular!

I think most people are happy to pay their NI contributions (in line with earnings) knowing that hospital care will be provided should they need it. That is how our NHS works. I therefore think that a small increase (still in line with earnings) would not necessarily be hugely unpopular if it assured the same sense of security should they need longer term care instead.

It would be interesting to see how other posters would like to see dementia care funded in the future.

 

[fr0d0]

If the state are funding elderly care 'at some point', which is what they're doing now, as Wirralson has said in the past at some point, it's a drop in the ocean to the NHS. Even smaller a drop are the private contributions stolen from those with savings over £24k. Rest assured, it is not the very wealthy who are being penalised here. Those with more money can easily afford to protect their assets from the public purse. As it stands in law now, the NHS is acting contrary to the law with its guidelines on CHC funding. Lawyers say so. It's up to the individual to challenge that. It's not hard to find current legal precedent.

 

[Pete R]

I think most people are happy to pay their NI contributions (in line with earnings) knowing that hospital care will be provided should they need it. That is how our NHS works. I therefore think that a small increase (still in line with earnings) would not necessarily be hugely unpopular if it assured the same sense of security should they need longer term care instead.

I doubt an increase in NI would be unpopular at all if it was ring fenced for Adult Social Care and the threat of an unfair "Dementia Tax" is withdrawn.

It would be interesting to see how other posters would like to see dementia care funded in the future.

Yes it would but a new thread about that may just get a tad too political.

 

[katek]

Fr0d0

I couldn't agree more with you in that it is not the true wealthy (who could well afford it anyway) who are bearing the brunt of costs.

Homeowners are too easily branded as 'wealthy' whereas in actual fact, many people who happen to own a property by their old age, may well have struggled very hard to have done that. My own parents lived with my grandparents for the first five years of their marriage to save up for a deposit for a house. They went without many things and have also never had any state benefits apart from their pension (which they obviously paid towards anyway). It is people like this who now find themselves having to give up what they have paid for when they are unfortunate enough to get an illness such as AD.

Nowadays, many people in their 30's and beyond are still unable to get on the housing ladder, so in the not too distant future, there may no longer be a pool of homeowners available to pay nursing home costs for themselves and others. What then?

Pete R - I am so glad you agree that the answer lies in raising the funding through NI/taxation, ringfenced for long-term care. That is how we fund the rest of the NHS, so I don't really see what the objections would be. If, through a democratic vote, the majority favoured the current system, then so be it. The trouble is, we've never been given the chance to do so.

So, if there are any parliamentary candidates reading this, please take note!

 

[katek]

PS to my above post

Pete R - forgot to say, I recognise that there is a danger of a thread getting too 'political', but the fact remains that AD is a growing problem which concerns us all on here, so part of dealing with that problem is to try to look for solutions around it somehow.

 

[fr0d0]

Well said Katek I totally agree with you. I believe in everyone supporting those that cannot pay, but this system seems to be pushing everyone towards living selfishly. So many people are seeing that it doesn't pay to live frugally. The message is, live for now, spend it while you've got it. The future is someone else's problem.

 

[katek]

Fr0d0

Yes - and what is driving it is that people are seeing that the NHS are not playing fair by the rules (re CHC), so think "why should we then?," and do what they can to avoid paying twice.

The NHS should have openly admitted that abiding by the Coughlan judgement was not financially viable on a large scale. If they had, then a way of funding it could have been explored, and agreed through parliamentary channels. Such change is possible. For example, prescriptions were once free for everyone on the NHS, but when that became too expensive, a charge was made - through an Act of Parliament, which we accept.

What they did, however, is to do it 'by the back door', hoping no-one would notice (but we have!), and just move the qualifying bar - cutting services to meet the budget rather than raising funds to meet demand. The result is the unfair situation we are in now, and we never had any say in it. We can't turn back the clock, but the 'raise more money rather than cut support' solution would still be possible if any party were prepared to put it to the vote.

 

[missmarple]

Most interesting comments. I also feel it is grossly unfair that if you are diagnosed with cancer, or kidney failure, or HIV, or another of a large list of physical ailments, all your care is free. With dementia, you pay for everything down to your last £24000. Yes the treatment for dementia isn't chemo or dialysis or antiretrovirals , it is having people around you who are competent and skilled to assist you in living. That's because of the nature of the disease and that;s because it's the only thing so far that makes a difference.
Larger, ring fenced NI contributions are the only thing I can think of to start to address this. Maybe what is holding the debate back is a sense of shame among the relatives of those with dementia, scared of coming across as just caring about their inheritance. Well, I would like to inherit something. There, I've said it.
Does anyone read Private Eye? There was an interesting item in the last issue- there is a huge gap in funding and a crisis caused by the ageing population and the projected numbers of persons with dementia is anticipated. And none of the parties is talking about it. Sooner or later politicians are going to have to.

 

[Pickles53]

Most interesting comments. I also feel it is grossly unfair that if you are diagnosed with cancer, or kidney failure, or HIV, or another of a large list of physical ailments, all your care is free.

Don't have any personal experience of this, but I know a number of TP members do, so would like to ask....

If a person with one of these illnesses needs help with personal care because of that illness, eg washing, dressing or other care which usually comes under the heading of 'social' care at home, is that not paid for on the same basis as a person with dementia?

I'm not so sure either that an increase in NI ringfenced for Adult Social Care only would get unanimous support. There would be many other health/care needs that some would see as higher priorities if we were going down this route.

 

[Saffie]

If a person with one of these illnesses needs help with personal care because of that illness, eg washing, dressing or other care which usually comes under the heading of 'social' care at home, is that not paid for on the same basis as a person with dementia?

I think you are right Pickles though, like you, I have no personal experience of this.
Treatment for Cancer et al may be free but so is treatment for dementia - such as it is. It is the care that is not.

Maybe what is holding the debate back is a sense of shame among the relatives of those with dementia, scared of coming across as just caring about their inheritance. Well, I would like to inherit something. There, I've said it.

Wouldn't everyone, Miss Marple. However, the truth is that the assets are owned by another person and don't become an inheritance until that person no longer has need of them because they have died.

 

[missmarple]

Yes pickles if someone with those conditions needs personal care then if it is not provided in a hospital (eg they are an inpatient) they would be means tested same as a dementia patient. However my point is that social care is the treatment for persons with dementia past a certain point in their illness. So by paying for inpatient care, but not for social care, the state is weighting everything against persons with dementia. To prevent people being victims of a kind of diagnosis lottery, i believe public money should be set aside for the care of persons with dementia. It's a question of justice.

 

[missmarple]

I agree Saffie the money is the property of the person with dementia. That is absolutely how I see it in my capacity of power of attorney for my father. however that money is soon siphoned off into social care because the government has made an arbitrary decision not to provide any care for my father. He doesn't go to hospital. He is not on expensive drugs. He needs a skilled person with him all day and so he pays for everything.

 

[Chemmy]

Most interesting comments. I also feel it is grossly unfair that if you are diagnosed with cancer, or kidney failure, or HIV, or another of a large list of physical ailments, all your care is free. With dementia, you pay for everything down to your last £24000. Yes the treatment for dementia isn't , it is having people around you who are competent and skilled to assist you in living. That's because of the nature of the disease and that;s because it's the only thing so far that makes a difference.
Larger, ring fenced NI contributions are the only thing I can think of to start to address this. Maybe what is holding the debate back is a sense of shame among the relatives of those with dementia, scared of coming across as just caring about their inheritance. Well, I would like to inherit something. There, I've said it.
Does anyone read Private Eye? There was an interesting item in the last issue- there is a huge gap in funding and a crisis caused by the ageing population and the projected numbers of persons with dementia is anticipated. And none of the parties is talking about it. Sooner or later politicians are going to have to.

Treatment, such chemo or dialysis or antiretrovirals as well as drugs like Aricept for dementia, is provided free by the NHS.

Care is means tested. These documents issued by the Stroke Association and Parkinson's UK show that victims of other diseases needing personal care are treated in the same way as those with dementia when it come to paying for care

http://www.stroke.org.uk/sites/default/files/F20%20Accommodation%20after%20stroke%20-%20referenced.doc

http://www.parkinsons.org.uk/content/home-care-and-care-homes

 

[missmarple]

Agreed Chemmy, but my point is there is no effective treatment for dementia. HIV positive persons need antiretrovirals because of their illness, people in renal failure need dialysis etc. They get it for free. Dementia sufferers need skilled care because of their illness, but they have to pay for it. By weighting the assessment of needs the way they do they are discriminating against those with dementia.

 

[katek]

Chemmy

Depending on the illness, people will need an increasing amount of what we call 'social care' as it progresses - whether or not other more 'medical' treatments (e.g. drugs/surgery/chemo) are available alongside it. I think what people are trying to say is that because for people AD the majority of their care is 'social' they lose out even more than people who are eventually charged (equally wrongly) for this.

Whatever the illness, nobody should be charged when an illness is at the level that they are totally dependant 24 hours a day. As Lord Woolf made clear in the Coughlan judgement, when this care arises from an illness, it includes the so-called 'social care', as it did with Pamela Coughlan. When you are in hospital, you are not charged for a bed bath or being helped to use a bedpan! That 'social' need is temporary, so why should you be charged if it is permanent?!

My late sister had advanced MS which also included significant cognitive impairment. At one stage she was having carers coming in 4 times a day to help her, and this level of care carries a charge. When her limited mobility decreased significantly, it led to a month long hospital stay followed by 4 months in an NHS neuro-rehab unit.
All her care there was obviously free, but apart from a little physio and occupational therapy, it was all personal care -simply washing, dressing, feeding, continence care etc - as there was no drug or other treatment availalable.

Because she was obviously unable to live her life in a hospital, she was eventually assessed for discharge to a nursing home, as living at home with 4 care visits would not be sufficient. She needed 24-hour care. Despite that fact, she failed to qualify for CHC meaning that she would now be paying for identical care to what she was receiving in hospital!

The problem is basically lack of funding available for anyone with a long-term incurable illness including Alzheimers, when treatment other than care is not possible.