NHS continuing care for dementia

hopeful56

Registered User
Jun 17, 2009
265
Midlands
Quite right Jennifer. I think we can be sure that, if it is to the advantage of the PCTs/emerging CCGs, they will use it straight away, but if it is to their detriment they will wait until the last minute.

Accuracy is so important and we all know how much the whole system relies on nuances.

Having had a quick look at the new DST I note that the "high" descriptor for Psych and Emotional Needs has changed to say "Due to their psychological or emotional state the individual has withdrawn from any attempts to engage them in care planning, support and/or daily activities - the words in bold are the new ones I think. I argued at Mum's DST that she was completely withdrawn (totally unable to communicate or engage at all) but was told because that was due to the dementia she had not voluntarily withdrawn so it didn't count!!! I guess they have made this change to shut people like me up!

JJ
 

dottyd

Registered User
Jan 22, 2011
1,064
n.e.
Hello Jackie, and no, you're not wrong and no, you're not wasting your time.

At least the NHS hospital did an assessment before discharge from hospital. That's a step forward!

Do you know whether it was just a Checklist? Or was it a full assessment? Were you involved in that, i.e. allowed to have full input so that you could tell exactly as you see it? Were you given a copy of the paperwork connected with the assessment?

That should have included a leaflet explaining the whole process before the assessment was done, plus a copy of the decision made and full reasons given to you.

If that didn't happen, you should most definitely challenge the way they have conducted things, i.e. the process they failed to follow correctly. And you can ask them to start again, from the beginning, with you fully involved and contributing as much as you know to the whole assessment.

If it did happen, and if you were fully involved all the way through, but if you are still unwilling to accept the outcome of 'whichever' assessment was carried out, you still have the right to challenge the outcome. I'm glad you're doing that already. You can't challenge it without having a copy of the full documentation involved, and that may include a copy of the hospital notes/records for the duration of the stay in hospital.

You must have an explanation of whichever document says that your Mum requires 'no care' or 'limited care'. What would happen to your Mum if your Dad wasn't there to care for her? If he's providing most of the care that she needs, the NHS must take on board that he may also need care soon too.

Achieving NHS CHC is not dependent on a diagnosis of anything. Nor is it dependent on whether someone needs care in a care home. Nor is it dependent on the provision of Professional Nurses to carry out the care required. It's dependent on a full, accurate assessment of 'needs' - needs that come about because of someone's health, or rather their illness, disability that results in a need for healthcare.

There are a few TPers who have achieved fully-funded NHS CHC for their relative in their own homes too. And more than a few who have achieved fully-funded NHS CHC for their relative with dementia who is now residing in a care home.

As for the money side of your present situation: if your Mum has less between c£14,500 and £23,500 in her own name, she is entitled to support from the SS. If she has less than c £14,500 her care needs should be fully-funded by the SS at the moment.

Sorry to hear of the struggles you are having to go through. Keep posting - there are many TPers who know a fair bit about the CHC process.

Should that be under 14,000 k and without a house to sell
 

jenniferpa

Registered User
Jun 27, 2006
39,448
Dotty: it should be under £14250 and yes, without a house to sell. So if you have £14249 in total assets then social service will be paying for care (assuming you haven't got NHS CC). However, it's important to remember that the person receiving the care will be expect to contribute the major part of any pensions they have, so while "fully funded" is accurate, the expectation is that they (the LA)will be at least partially reimbursed. I think sometimes people forget to consider that, which I why I always try to mention it.
 

hopeful56

Registered User
Jun 17, 2009
265
Midlands
I think that, once your assets fall below about £23K, the SS contributes on some sort of sliding scale.

And if your house is occupied by a spouse/parter or anyone else who is 60+, or someone who cared for you (although this last point is a bit unclear I think), then your house is also disregarded and you don't have to sell it.

JJ
 

crazyfish

Registered User
Oct 12, 2012
288
No Mick I am not nit-picking. I am simply pointing out that when you are dealing with something as difficult and potentially fraught as NHS CC it is extremely important to be accurate in your information.

I'll say it again: "PCTs can also use these with immediate effect since there is no change to the policy. " is not the same as "should" or "must". I was hoping that you had some further information to support your position. I'm quite prepared to accept that there may be and I was hoping that you would be able to provide this information. What you continue to do, however, simply restate a sentence which uses the term "can"- not must or should, can. I fail to see that that in and of itself supports your position as stated.

Think of it this way. Is the sentence "I can drink coffee" the same as "I must drink coffee"? Clearly it isn't.

As I say, you may be correct in your interpretation, but when you are attempting to provide even amateur advice (the only advice that this forum can provide), I feel it is irresponsible not to ask for clarification when it appears that the information provided is less than complete. I'm very sorry if I haven't explained this adequately.
Hi Jenniferpa,
As far as accuracy is concerned I totally agree and in my opinion the quote is totally accurate as it is stated in black &white by the DOH.(And this process is ONLY opinions)
Yes I agree that you can argue on the phrasing of the DOH documents until the cows come home as that is the way they structure most of their docs (two ways of reading it )
You have YOUR opinion on how it reads and I have mine I think you should let the TP's readers make their own mind up.
I will be advising anyone I am helping to use the new up to date version you can of course continue to advise people to use the old outdated version.

Thanks.
MICK
 
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hopeful56

Registered User
Jun 17, 2009
265
Midlands
I've made my mind up and I agree with Jennifer. Can means they are allowed to, it expressly DOES NOT mean they have to. It is wrong to pick out a couple of words from a sentence in the way you suggest.

I am reminded of something I heard years ago. It was about a review of a play (a comedy) that had not gone well. The reviewer wrote something like "The only thing that had them rolling in the aisles was when a piece of scenery collapsed". The promoters then used the quote "Had them rolling in the aisles" on the adverts for the rest of the tour!!!

Would other TPers post their interpretations of the word "can" so we can put this to bed once and for all.

JJ
 

Jackie3

Registered User
Nov 27, 2012
14
Oldham
These posts highlight the confusion surrounding continuing care and the interpretation of it. I don't even think grass roots nhs staff even understand it so there is not a lot of hope for us lay people. I suspect that this is deliberate due to the fact that if it was open and transparent and every patient and family using nhs services were told about it, it would cost the nhs a fortune. They don't want that so they keep it largely to themselves and just hope that people are not savvy enough or too stressed at the point when chc assessing should be offered to question what is happening. Just like an unpopular piece of news that is published in the middle bottom of a newspaper that will be missed by the majority who skip through the paper. It should be headline news.:mad:
 

JPG1

Account Closed
Jul 16, 2008
3,396
Before another long battle breaks out on TP, and before yet another useful and helpful thread is derailed and rendered useless, I offer the following information:

1. Post No. 35 contains an incomplete quote from the updated NF documentation.

It is the Health and Social Care Act 2012.

It is the Health and Social Care Act 2012 that is effective from 1 April 2013.

The new Health and Social Care Act 2012 (effective from 1 April 2013) creates the new NHS framework and structures. It does not create a new CHC framework. It is the new NHS that is being created.

2. The policy contained in the National Framework for Continuing Healthcare does not change. The policy remains exactly the same. The updated NF merely combines into one document a lot of the information that was scattered around in umpteen docs previously and that most 'normal' people would never have known about before. (I acknowledge that I may not be 'normal'. ;))

What changes are the NHS bodies responsible for the implementation of the CHC National Framework. For example, PCTs disappear; CCGs appear. The words ‘other provider organisation’ appeared once in the 2009 NF; the same words appear more often - six (6) times - in the 2012 NF (revised to reflect the changes in the structure of the NHS brought about by the Health and Social Care Act 2012). The new NHS will be vastly different from the old NHS.

3. I have read the updated NF for CHC.

Differences in policy are not there.

The differences lie in the explanations within it. Those explanations are far better, far fuller, far more user-friendly, not only for patients and their families, but also for the staff who failed so miserably to understand the previous NF.

4. Examples of 'sameness'.
(my highlighting)

The National Framework revised 2009:
Para 54
"In a hospital setting, before an NHS body gives notice of an individual’s case to an LA, in compliance with section 2(2) of the Community Care (Delayed Discharges etc.) Act 2003, it ‘must take reasonable steps to ensure that an assessment for NHS continuing healthcare is carried out in all cases where it appears to the body that the patient may have a need for such care’. This should be in consultation, as appropriate, with the relevant LA."

The National Framework updated 2012:

Para 62
"In a hospital setting, before an NHS trust, NHS foundation trust or other provider organisation gives notice of an individual’s case to an LA, in accordance with section 2(2) of the Community Care (Delayed Discharges etc.) Act 2003, it must take reasonable steps to ensure that an assessment for NHS continuing healthcare iscarried out in all cases where it appears to the body that the patient may have a need for such care. This should be in consultation, as appropriate, with the relevant LA."

Spot the difference between the two paragraphs. :)(Not highlighted by me!)

There were many similar requirements in the NF of 2009 that should have happened but didn’t happen. The words ‘must’ and ‘should’ appeared in 2009 – yet they were not put into effect by those who were charged with the responsibility.

I'm with crazyfish on this debate. The documents are for use by CCGs from 1 April 2013 - for the simple reason that CCGs don't exist yet, and won't exist until 1 April 2013. All we have now are PCTs. The PCTs 'can' use these far more user-friendly updated/revised National Framework documents immediately. So can we, the people affected by them. Especially as they are far more accessible and readable.

Therein endeth my contribution. :) :cool: :rolleyes:
 
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jenniferpa

Registered User
Jun 27, 2006
39,448
You see this is what I was looking for (JPG1's post) . I'm not saying it's clear, because I think we'll all agree that the subject is less than clear, but it makes considerably more sense than simply stating over and over again that can means should.

I will take issue with one point if I may - you state

1. Post No. 35 contains an incomplete quote from the updated NF documentation.
implying that I quoted the text inaccurately. However, as you are aware, the quote I provided is an accurate copy of what is on the page, even if you do not believe it's an accurate version of what is meant.

However, I do not agree with you about the wisdom of attempting to use this document to buttress any case presented at this time (as in before April 2013). By all means use it as a support and back-up for yourself but beware of referencing it in official communications.

People often accuse the powers that be of wrapping this stuff up in multiple layers of red tape, but quoting a document that the PCTs may but do not have to use before its official start date leaves the applicant open to being told that they are not using the appropriate documentation. Applicants do not need to leave themselves open to this sort of accusation. You may believe you are right, you may even be right, but the truth is, that will make no difference: by quoting the "wrong" document you put yourself in an invidious position.
 

JPG1

Account Closed
Jul 16, 2008
3,396
You are entitled to your opinion; we are all entitled to our own opinions.

Not only are you nitpicking, Jenniferpa, but you are now also hair-splitting. I am well aware that you and I have had this 'nitpick' discussion before re. can / would / should / must / might / may / will /.... the permutations are endless and discussion thereof is, frankly, a can of worms that does not need to be opened. (I acknowledge that the 'nitpick' discussions we have had in the past were in reference to my posts that you chose to pick over.)

Read the full document, please, then you will understand why you are wrong, in my opinion.

The new documentation is far more helpful and useful to anyone and therefore potentially, everyone who is about to submit an application for CHC - because it is sequentially positively helpful, clear, user-friendly, and provides much more clarification of the whole of CHC than all the other documents put together.

I never mentioned using this updated documentation "to buttress a case", but I would have done so if I'd thought of it!! Anyone who quotes from the November 2012 documents and references to those November 2012 documents has nothing to fear. Nothing whatsoever.
 

jenniferpa

Registered User
Jun 27, 2006
39,448
We'll have to agree to differ. It's funny: obviously you and Mick feel that accusing someone of nit-picking or hair-splitting is a bad thing or even an insult. I personally wouldn't characterize awareness of the nuances of the English language as this, but if you for some reason feel it is accurate, so be it.

Actually, I'm not insulted. I have never felt that nit-picking or hair-splitting is a bad thing when you are dealing with legal matters and particularly not when you are dealing with an organization (the NHS) who has raised hair-splitting to an art-form.

Best wishes
 

JPG1

Account Closed
Jul 16, 2008
3,396
Please don't put words in my mouth - I was not attempting to use an 'insult'.

You may 'characterize' - I may 'characterise'. You may talk of an 'organization' - I may talk of an 'organisation'. You may speak American English; I may speak English English. Let's call the whole thing off!

I can only see things from where I am sitting now - you may only see things from where you are sitting now.

Personally, I find repeated and endless nitpicking or even nit-picking of the same ground, over and over and over again, fruitless, pointless and destructive.

Especially on what is, after all, a support forum.

You don't see it that way. So be it.

As for raising nit-picking or nitpicking to an art form ..... I couldn't possibly comment! :cool:

(BTW, that's a quote from a very well-known TV political thriller/almost-satire - and a comment that's often used in the House of Commons.)
 

JPG1

Account Closed
Jul 16, 2008
3,396
I'm concerned that the Big Grin :D in my quote doesn't match the smiling smiley :)in crazyfish's post.

I did not edit the quote and bring the Big Grin :D in - honestly.

:confused:
 

hopeful56

Registered User
Jun 17, 2009
265
Midlands
Perhaps I can offer a personal example of how the PCT/emerging CCG is already ignoring this new version. On page 110 you will find:

PG 90Can a personal health budget be used for people eligible for NHS continuing healthcare?
90.1 Yes, CCGs are encouraged to use personal health budgets where appropriate .A personal health budget helps people to get the services they need to achieve their health outcomes, by letting them take as much control over how money is spent on their care/support as is appropriate for them. It does not necessarily mean giving them the money itself. Personal health budgets could work in a number of ways, including:
• a notional budget held by the CCG commissioner
• a budget managed on the individual’s behalf by a third party, and
• a cash payment to the individual (a ‘healthcare direct payment’).
90.2 Direct payments for healthcare can only currently be offered by the Board, or by CCGs that are pilot sites approved by the Secretary of State. However CCGs already have powers to offer other forms of personal health budgets, either as a notional budget or a real budget held by a third party.
Further details are given in Personal Health Budgets: First Steps.


My mum has recently been fast tracked for NHSCC but the PCT is refusing to allow us to continue to use the same carers she has been funding herself for ages. So, despite the fact that continuity is so important for someone with advanced dementia, they are expecting us to allow a change of carers for her, in her last weeks. Unbelievably uncaring.

So, as you can see, although this new version of the framework CAN be used by the PCT, they are NOT using it.

And, for what it's worth, I think Jennifer's resting her case because of the rather amusing comments about American/English English in a posting about nit-picking.
 

JPG1

Account Closed
Jul 16, 2008
3,396
hopeful,

Personal health budgets have only been 'piloted' in 20 areas over recent years, involving 2,700 people in receipt of CHC.

The 'roll out' of personal health budgets to all areas and to all people in receipt of CHC was only announced yesterday, 30 November 2012. The roll-out is intended to be achieved by 2014.

The updated NF was only announced on 28 November 2012 - two days before the announcement about the roll-out of personal health budgets.

The section you quote applies to CCGs - they don't come into being until 1 April 2013. That's when the roll-out starts, with the aim of 2014. So, as there are no CCGs yet, they CANNOT roll out the Personal Health Budgets yet.

Much as I feel for you and your Mum, and yes, I agree there should be continuity of care. But your situation existed before the announcements on 28 and 29 November 2012, so I'm afraid your example is not an example of your PCT ignoring the updated NF.
 

hopeful56

Registered User
Jun 17, 2009
265
Midlands
JPG1
I refer you to
90.2 Direct payments for healthcare can only currently be offered by the Board, or by CCGs that are pilot sites approved by the Secretary of State. However CCGs already have powers to offer other forms of personal health budgets, either as a notional budget or a real budget held by a third party.

This clearly states the they ALREADY have the powers necessary!
 

JPG1

Account Closed
Jul 16, 2008
3,396
Forgive me, hopeful, but I am afraid I don’t know all the circumstances of who currently employs your Mum’s carers, so I have no idea whether they are LA carers or not.

Para 11 of the pre-amble : - "There is an intention to introduce a right to request a personal health budget for people who would benefit from them. People receiving NHS Continuing Healthcare will be the first to have this right from April 2014 subject to the evaluation. This means that all CCGs will have to be ready to implement personal health budgets by April 2014 although they will be able to offer them before this date on a voluntary basis."

It is on a ‘voluntary basis’ at present.

Personal health budgets - first steps: http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_117262.pdf

If I remember correctly (and I am quite prepared to admit I may not), your Mum’s previous care regime was via the Local Authority, prior to CHC being received very recently, so it is quite conceivable (from where I am sitting :)) that once the PCT assumes responsibility for care provision via CHC, the PCT may not be able to go along with the existing carer provision, and that may also include whichever ‘agency’ currently provides the carers.

If it was a privately arranged carer-provision, again without knowing more it's difficult to comment.

We would need to know more about the existing carer-contract before commenting, because it is not beyond comprehension that a PCT may not be able to enter into a contract with the existing care-agency/provider.

The PCT would surely have explained to you - and in writing - the full reasons why they cannot continue with your Mum's existing carer regime. Have you got that in writing?

Sorry, hopeful, but that's all I can suggest at the moment.
 
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