Continuing Health Care - Preparing to fight PCT's decision

beaujolais-nouveau

monkeyspanner wrote: »

The most obvious answer is kidney function but this can be the result of urinary infection or blood in the urine or heart failure.

The first care home my mother was in (arranged by the social services without reference to anyone else) didn't manage her incontinence well, and her notes show that she had more than one urinary infection. I just wondered if there was something more about this that I should try to understand.

monkeyspanner wrote: »

However a quick search gave a list of 54 medical conditions which can give high protein readings in the urine.

Ah.

Incidentally, by chance I came across on the web an inspection report of that care home made just before my mother was admitted, and the home "passed" the inspection only because the inspectors didn't assess the things that it would have failed on. Bl**ming incredible. The social services actually, in my view, procured my mother for a failing care home. The only reason I don't feel worse about this is that we got her out as fast as possible to an incomparably better-run place recommended by a friend whose own mother was there at the time (has since died).

margaretclare

beaujolais-nouveau wrote: »

Could I ask, please, what it means when there is protein in the urine?

Basically it means that the kidneys are not doing their job properly, and there can be a number of reasons for this. The kidneys act as a filter system - remember my analogy of the central heating system at home - and protein is not supposed to leak from the tiny blood-vessels into the urine and be wasted. Those blood-vessels in the kidney capsule are really tiny - if you want to know how it all works look at http://en.wikipedia.org/wiki/Glomerulus

One of the commoner conditions by which protein (albumin) gets into the urine is high blood pressure, which also causes strokes, whether big ones or small (TIAs). You can also get this in pregnancy, in pre-eclampsia, same thing.

Another obvious one is kidney damage caused by infection, either from within the body - the blood - or tracking upwards from the bladder. Anyone with a catheter for any length of time must be carefully watched for any signs of infection.

HTH

PS: Anyone who is incontinent, whether of urine or faeces or both, is going to be at risk of infection tracking upwards into the bladder and beyond. So obvious that anyone in any of the so-called 'caring professions' should have their licences and qualifications taken off them if they can't see this. Added to the common problem of dehydration - which shouldn't even exist, let alone be a problem - where you haven't got enough fluid going through, and you're almost certain to get bladder and/or kidney infections. Plus, infection and skin damage, pressure sores, the whole scenario. The body can only fight off so many infections at a time and then the whole immune system starts to collapse.

realshannon

thanks very much for the interesting post re ASC - this is exactly what happens! its not what I thought it was then, i thought it was when she is, for example, talking to you, and then just falls asleep! its a bit like narcalepsy - the other day MIL said to her daughter, when is mother coming to see me? MIL is nearly 92. I dont think she has hardly ever even talked about her mum since I have known her (nearly 30 years) but then she said that her sister had been in, and she has been gone for over 35 years. I have asked her what day it is when we visit, not to be mean, but to try and keep her interested but she never knows, we visit once a week as we dont live close and she will frequently say why are we here again, it was only yesterday you came in, where I am, whats happening with the shopping/washing/post etc - I am still waiting for paperwork from the PCT after complaining, hopefully get this soon and then complain to SHA I presume? I dont really see the point of complaining to anyone else as so far all they have done is lie and fabricate everything, but its very handy they have put it in writing for me. is this the right route? to recap, she had a checklist done by SW which was ok-ish and she should have then had an assessment, but the District Nurse superceded this with a very low scoring checklist, we werent told of this. so at the moment we are being chased by the local council to sign over the house etc etc, which we are finding very difficult to do at the moment as this has gone on for so long. her health has got worse - guidance please would be great, as normal thankyou very much x

hortibob

I thought I'd give a quick update on the Scottish perspective of this farce.

As I stated in a previous post, the community and health care act(Scotland)2002 seems to have changed things here to the point where; yesterday we had a meeting with my fathers care manager whom we asked to contact my fathers Parkinson's consultant to ask about CHC....his response was that because there is nothing more that he can do for my father, by way of medication(my father is now taking all available meds and now they're not as effective) my father doesn't qualify for CHC so a specific assessment would be futile!!!!

Not satisfied with this response we are arranging to speak to said consultant who is insisting on bringing along a senior administrator to explain why HE has come to this decision.

We also happened to have a chat with one of the staff nurses( my father's in hospital after having several falls at home and is being treated for a urine infection too), who tells us that no one gets CHC in Scotland unless they are in imminent danger of death!!....and no that doesn't mean terminal...that means on deaths doorstep( we did ask her to clarify!)

Clearly this situation is not acceptable to my family...and so to battle!

Why do we not see more on this topic in the press.....this appears to me to be conspiracy to defraud on a national scale..

monkeyspanner

hortibob wrote: »

I thought I'd give a quick update on the Scottish perspective of this farce.

As I stated in a previous post, the community and health care act(Scotland)2002 seems to have changed things here to the point where; yesterday we had a meeting with my fathers care manager whom we asked to contact my fathers Parkinson's consultant to ask about CHC....his response was that because there is nothing more that he can do for my father, by way of medication(my father is now taking all available meds and now they're not as effective) my father doesn't qualify for CHC so a specific assessment would be futile!!!!

Not satisfied with this response we are arranging to speak to said consultant who is insisting on bringing along a senior administrator to explain why HE has come to this decision.

We also happened to have a chat with one of the staff nurses( my father's in hospital after having several falls at home and is being treated for a urine infection too), who tells us that no one gets CHC in Scotland unless they are in imminent danger of death!!....and no that doesn't mean terminal...that means on deaths doorstep( we did ask her to clarify!)

Clearly this situation is not acceptable to my family...and so to battle!

Why do we not see more on this topic in the press.....this appears to me to be conspiracy to defraud on a national scale..

I am not sure if this is actually the case in Scotland but the "deaths door" stock reply to an enquiry about CHC funding was a typical BS response in England and probably is still being used by badly trained and obstinate NHS staff.

As Scotland has a separate legal system it may be that case law such as Coughlan do not apply in Scotland perhaps someone can chip in here who has more knowledge.

You may find some links to articles on this subject in this specialist law practice archive. http://www.hughjames.com/news_centre/news_library/2010/december/dementia_nursing_care.aspx

sonorman

Could I ask a simple question, why are so many people on this thread going to such great lengths to argue that the NHS should pay for care/nursing in a home when we all know that the NHS is in so much financial trouble?

Surely what matters is that if the patient has funds, then those funds should be used to provide the care/nursing that is needed. If the funds fall below the minimum level, then the state will take over.

I find it extremely worrying that everybody sees that the payment for care/nursing should be the state's.

My father is likely to need a care/nursing home in the near future, but I would hate to think that I have to go through all of this palava to sort how who should pay. With his house, investments etc he has about £500,000. That sort of money will see him through his last days - that is what he has provided for himself.

Personally I wouldn't give a toss if he spent the whole damn lot, he can't take it with him!

monkeyspanner

Many people do not bother to claim what they are entitled to for various reasons. This is not a thread about avoiding paying for care or disposing of assets to avoid paying for care. The thread is about the NHS trying to avoid paying for care in the circumstances which the UK legal system has defined as the responsibility of the NHS i.e. where the person has a primary medical need.

You may believe that the burden of the financial position of the NHS should fall primarily on the elderly and infirm. I happen to believe that there are many other areas of the NHS which could be cut back first and that we as a society should support those upon whose efforts and sacrifice we now live in the main a comfortable life.

Savvy_Sue

sonorman, I don't have a problem with those who can afford it paying for care, but it's the way things are done which is so wrong.

the first question seems to be "what assets does this person have?", not "what needs does this person have and what is the best way in which they can be met?" followed by "can they afford to pay anything towards meeting those needs?"

now, your father is very fortunate to have half a million put by which can be used to fund his care, and I hope you are able to find the very best for him. But very few are that fortunate.

So you find the very best care for your family member, and then after a couple of years the money runs out, what then? you may have to move them, and the disruption may well shorten their life.

And THEN you discover that actually, their needs were such that they should have had their care paid for all this time. And if THAT had happened, the move might not have been necessary.

what is most upsetting is that people are having to spend so much time getting this sorted out, that the person needing the care misses out on their attention. Several have commented on this aspect of things.

It's like a huge miscarriage of justice: you know the person didn't do it, and you want to visit them, write to them, support them, but all your time, energy and money has to go into getting the legal stuff sorted out.

sonorman

Savvy_Sue wrote: »

sonorman, I don't have a problem with those who can afford it paying for care, but it's the way things are done which is so wrong.

the first question seems to be "what assets does this person have?", not "what needs does this person have and what is the best way in which they can be met?" followed by "can they afford to pay anything towards meeting those needs?"

now, your father is very fortunate to have half a million put by which can be used to fund his care, and I hope you are able to find the very best for him. But very few are that fortunate.

So you find the very best care for your family member, and then after a couple of years the money runs out, what then? you may have to move them, and the disruption may well shorten their life.

And THEN you discover that actually, their needs were such that they should have had their care paid for all this time. And if THAT had happened, the move might not have been necessary.

what is most upsetting is that people are having to spend so much time getting this sorted out, that the person needing the care misses out on their attention. Several have commented on this aspect of things.

It's like a huge miscarriage of justice: you know the person didn't do it, and you want to visit them, write to them, support them, but all your time, energy and money has to go into getting the legal stuff sorted out.

I fully understand what you are saying about those being able to pay should. And those with no assets etc should have it provided for free of charge.

What I have a problem with is those in the middle. Those that can afford to pay for a while, with the tax payer picking up the tab after the money runs out. But no, they seem to want to move heaven and earth so that the taxpayer picks the tab up from day 1 leaving untouched the assets & savings.
Would you not think that a little tad greedy?

In addition when the NHS picks up the tab - this is running at up to £52,000pa for just one person.
Surely some sort of moral responsibility comes into play as that money could be better used elsewhere in the NHS.

I know what the law says, but come on, if someone is sat on a house valued at say £150,000, irrespective of what the law says, that person should contribute say 2/3rds towards their care & nursing. That still leaves £50,000 available for gifts to people.

Savvy_Sue

sonorman wrote: »

What I have a problem with is those in the middle. Those that can afford to pay for a while, with the tax payer picking up the tab after the money runs out. But no, they seem to want to move heaven and earth so that the taxpayer picks the tab up from day 1 leaving untouched the assets & savings.
Would you not think that a little tad greedy?

Absolutely, and I've been known to say so, and also that I'd much rather my mother's assets were used to fund her care home (should she ever need one), giving us the CHOICE, rather than attempt to save her house as our 'inheritance'.

As it is, should my mother ever need residential care, I suspect her needs will be so great that she'll be eligible for CHC funding. Either that, or she'll be so far gone that we'll be registering and using her PofA to sort out the move.

sonorman wrote: »

In addition when the NHS picks up the tab - this is running at up to £52,000pa for just one person.
Surely some sort of moral responsibility comes into play as that money could be better used elsewhere in the NHS.

I know what the law says, but come on, if someone is sat on a house valued at say £150,000, irrespective of what the law says, that person should contribute say 2/3rds towards their care & nursing. That still leaves £50,000 available for gifts to people.

I think the moral responsibility cuts both ways. There are already several areas of the NHS where you can accept what you're given or pay private fees (dentistry, audiology, fertility treatment are prime examples). But at least in those cases you are told what the position is with more or less honesty.

Those who are entitled to full CHC funding don't get a lot of choice about where that is offered, as far as I can tell. But they should be told that they have that choice: "these free options or find and fund your own". That does not seem to be what happens: the 'official' response is "what assets?"

I could be wrong about all this: my knowledge comes from reading these threads, and to be fair we seem to see one side of the story here. I know someone who has recently retired as a senior SW manager, doing a lot of joint working with the NHS in elderly care. If I can get their perspective on how it works and whether staff have the 'right' training and attitude, I'll report back ...