Families 'misled' over care fees

[JPG1]

Misleading information that often remains unchallenged

Marianne, Mark and Clive

I have also written and will let you know if any of them respond! Misleading information is frequently given out, by some charities, and by some of the media too, and information which should be challenged often remains unchallenged, so continues to mislead.

If I could now change the title of this thread, then I would willingly do so, perhaps to “Families ‘misled’ over care fees and other matters’ which would allow for the introduction into the thread of the discussion of other areas of dementia and care and fees and charges, where families are misled.

The reason I posted this originally in the “Raising awareness and campaigning” section was not to preach to the converted, by any means.

But many people read all available threads without registering to be able to post, and it’s possible that many people read even without necessarily having a relation with dementia, but seeking information about homecare, residential care, or any other form of care. Or possibly - hopefully - just to learn more about dementia. But not necessarily with a wish to post.

If ‘awareness’ is raised within the thinking of non-members of TP, that there are other avenues for them to consider, then that can only be a good thing, in my view.

Is there a way to ‘edit’ the title of any thread, just as it’s possible to edit the content of the post?

 

[SilverStar]

Is it possible for the moderators to message every member to poll them on whether or not they or their relatives were told about continuing care funding at the point where their relative was about to move into a nursing home?

I think that would be very interesting.

It would also be good to know how many of those who did apply for continuing care funding actually received it and of those who didn't whether they were told about the appeal procedure.
Thanks

 

[jenniferpa]

Moderator Note:

From the Forum Rules

2.4 The use of the message boards for gathering information for surveys and research studies, or similar, is prohibited unless prior permission has been given by the Alzheimer's Society.

Please note that this includes the use of the PM system for such purposes.

 

[SilverStar]

Sorry to hear the rules are so rigid. This was not a formal request for research material but something I thought would be interesting for your organisation to find out so that if there is a gap in advice you might be able to fill it.

There is very little reliable advice on continuing care funding on the internet and it would be good to see charities taking a lead in forums like this where people could be given accurate information.

 

[jenniferpa]

It's all about protecting potentially vulnerable people: our members are not guinea pigs. I would agree about the accurate information. That's what the help line does, as do the factsheets and such links as this http://forum.alzheimers.org.uk/showthread.php?t=15569

 

[JPG1]

Thanks, Jennifer, for your link to Katherine’s thread of 23.03.2009.

However, the booklet dated 2004, starts by saying “This booklet explains what to do if you or the person you care for have been charged for care that you think should have been paid for by the NHS. It explains what continuing NHS health care is, how you might be able to get it, and how to complain if your request for continuing NHS health care is turned down.

It starts with a focus on “the process of appeal”.

But you can’t appeal ..... if you never knew about Continuing Healthcare from the start. If nobody ever told you or your carers about the existence of something that is called “continuing NHS health care” in your link to 2004 (plus later update) then you can’t appeal against a decision, can you.

Because you never knew about it in the first place.

I haven’t read all 43 pages in detail, but within the first 10 there are so many inaccuracies and so much “out of date” content that it would take a while to highlight them all.

Few examples, though:

“People living in residential homes have not usually been assessed for continuing NHS health care”. Your link does not mention that they should have been assessed for CHC; if only their carer(s) knew that CHC existed they would have asked/requested/demanded that assessment.

“This means that if a person is being cared for at home, they are unlikely to have been assessed for continuing NHS health care”. But they should have been assessed for CHC, if only their carer(s) knew that CHC existed.

It is not the location of care that is important, but the primary health needs. Even if needs are “well managed” – that still allows you to qualify for CHC. A well managed need is still a need.

“The government’s charging policy is, therefore, based on who provides the care (NHS or social services) and not on what people’s care needs are.” Slightly misleading, because it is not the “who” but the “who is best equipped to deflect the request for CHC”. Easy if nobody ever tells you that it exists.

“When people are assessed for continuing NHS health care, assessments do not typically take into account people’s mental health and/or psychological needs.” - They do now! So things have moved on since 2004.

Ombudsman “found that some health authorities had been interpreting the criteria wrongly, with the result that people had been charged for care that should have been paid for by the NHS” Absolutely correct, but ... again, if you had never been told about CHC, then you wouldn’t be aware of the fact that your local health authority had been interpreting the criteria wrongly. So you would meanwhile have been robbed, in splendid ignorance.

Your 2007 update is somewhat better, but not a lot:

“However, NHS continuing health care is often not easy to secure.” It is impossible to secure if you never even knew it existed; if nobody ever told you about NHS Continuing Health care (which in 2004 was your ‘continuing NHS health care’).

Might I suggest that you should consider removing all links to your 2004 and 2007 update until such time as they have been re-written and updated. If onlhy so as to take account of the fact that you, as a person needing care or the family of a person needing care has actually been made aware that the possibility exists of something called NHS Continuing Healthcare, fully funded because of your primary health need which can only be determined by a full assessment of your needs.

.

 

[netsmurfit]

Thanks, Jennifer, for your link to Katherine’s thread of 23.03.2009.

However, the booklet dated 2004, starts by saying “This booklet explains what to do if you or the person you care for have been charged for care that you think should have been paid for by the NHS. It explains what continuing NHS health care is, how you might be able to get it, and how to complain if your request for continuing NHS health care is turned down.

It starts with a focus on “the process of appeal”.

But you can’t appeal ..... if you never knew about Continuing Healthcare from the start. If nobody ever told you or your carers about the existence of something that is called “continuing NHS health care” in your link to 2004 (plus later update) then you can’t appeal against a decision, can you.

Because you never knew about it in the first place.

I haven’t read all 43 pages in detail, but within the first 10 there are so many inaccuracies and so much “out of date” content that it would take a while to highlight them all.

Few examples, though:

“People living in residential homes have not usually been assessed for continuing NHS health care”. Your link does not mention that they should have been assessed for CHC; if only their carer(s) knew that CHC existed they would have asked/requested/demanded that assessment.

“This means that if a person is being cared for at home, they are unlikely to have been assessed for continuing NHS health care”. But they should have been assessed for CHC, if only their carer(s) knew that CHC existed.

It is not the location of care that is important, but the primary health needs. Even if needs are “well managed” – that still allows you to qualify for CHC. A well managed need is still a need.

“The government’s charging policy is, therefore, based on who provides the care (NHS or social services) and not on what people’s care needs are.” Slightly misleading, because it is not the “who” but the “who is best equipped to deflect the request for CHC”. Easy if nobody ever tells you that it exists.

“When people are assessed for continuing NHS health care, assessments do not typically take into account people’s mental health and/or psychological needs.” - They do now! So things have moved on since 2004.

Ombudsman “found that some health authorities had been interpreting the criteria wrongly, with the result that people had been charged for care that should have been paid for by the NHS” Absolutely correct, but ... again, if you had never been told about CHC, then you wouldn’t be aware of the fact that your local health authority had been interpreting the criteria wrongly. So you would meanwhile have been robbed, in splendid ignorance.

Your 2007 update is somewhat better, but not a lot:

“However, NHS continuing health care is often not easy to secure.” It is impossible to secure if you never even knew it existed; if nobody ever told you about NHS Continuing Health care (which in 2004 was your ‘continuing NHS health care’).

Might I suggest that you should consider removing all links to your 2004 and 2007 update until such time as they have been re-written and updated. If onlhy so as to take account of the fact that you, as a person needing care or the family of a person needing care has actually been made aware that the possibility exists of something called NHS Continuing Healthcare, fully funded because of your primary health need which can only be determined by a full assessment of your needs.

.

I could not have put it better,And totaly agree with all you say
Knowledge and Awareness is The only thing lacking for the majority of people across the country,

All to often those who are so called professionals N.H.S & Social Services deliberately avoid telling you about the possibility of fully funded continuing care For A primary health need

Good post Thank you

Mick

 

[jenniferpa]

As far as I'm aware the fact sheets are updated regularly. However, this issue of continuing care is only one part of society's mission to support people with dementia and their carers, so I suppose it is inevitable that some of the information in them may not be entirely up to date. Having briefly reviewed the update, I cannot detect any factual errors, although its focus may not be entirely to an individual's taste.

Can I just remind everyone: while this forum is hosted by the Alzheimer's Society, if you wish to make your views known to the society you should contact them directly. This forum is for support of sufferers and carers, not a "letter to the editors" page. While some threads may be read by AS staff, if you feel an issue is not adequately being covered by the society take it TO the society. http://www.alzheimers.org.uk/site/scripts/contact.php

 

[netsmurfit]

As far as I'm aware the fact sheets are updated regularly. However, this issue of continuing care is only one part of society's mission to support people with dementia and their carers, so I suppose it is inevitable that some of the information in them may not be entirely up to date. Having briefly reviewed the update, I cannot detect any factual errors, although its focus may not be entirely to an individual's taste.

Can I just remind everyone: while this forum is hosted by the Alzheimer's Society, if you wish to make your views known to the society you should contact them directly. This forum is for support of sufferers and carers, not a "letter to the editors" page. While some threads may be read by AS staff, if you feel an issue is not adequately being covered by the society take it TO the society. http://www.alzheimers.org.uk/site/scripts/contact.php

Am i missing something here,is this section named
(Raising awareness and campaigning),Or is this misleading information, From what i have read members here are helping to raise awareness for the benifit of other members, who are asking for help concerning continuing care,Are you saying that this is not alowed on talking point??

Mick

 

[MarkEdge]

Hi all

As far as I'm aware the fact sheets are updated regularly. . . Having briefly reviewed the update, I cannot detect any factual errors, although its focus may not be entirely to an individual's taste.

I've had a look at the two documents on Continuing Care at http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200308&documentID=536 and have some comments:

'When does the NHS pay for care?' (August 2004)
This was written not long after the Ombudsman had produced a report that recognised the fact that many retrospective claims ought to be made. I guess it's no surprise that the emphasis was on 'appealing' rather than tackling the issue at source, i.e. guidance on how to lawfully avoid paying for fees in the first place. The document also, importantly, stressed that dementia is an illness that falls into the scope of continuing care. Up to then, many in the NHS had incorrectly viewed caring for someone with dementia as social care. It also gives details about the important Pointon case. Remember to that this is a pre-Grogan and pre-National Framework document and hence there is, understandly, too much emphasis placed on NHS-speak, especially the four points at the bottom of page 4 and top of page 5 which are now recognised as being unlawfully restrictive. The comments on page 5 under 'The criteria for continuing NHS health care' are also very out of date and again recognised now as being unlawful, e.g. there is no need to have 'very specialised nursing support'. Hence, this document ought to be radically updated and maybe withdrawn for the time being as JPG1 suggests.

'Have you been paying for care?' (undated, but post-October 2007)
This is generally correct, aside from a comment on page 2: "To qualify for NHS continuing care a person must have a high level of health care needs that requires regular care and support." That is incorrect in as much as all needs resulting from an illness are considered. That point might seem semantic, but it is crucial to eligibility.
Although the 'START' point on the flow chart on page 5 says 'Have you had to pay for care?', I imagine it really means 'Have you been asked to pay for care?', i.e. when the needs of a patient have suddenly increased to being a 'primary health need'. It ought to stress that this first step in many cases is before the patient is discharged from hospital.

I can't find any factsheets relating solely to continuing care on http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137. However, a few others mention continuing care:

Factsheet 452 ('Assessments for NHS-funded nursing care', dated July 2008) is factually correct inasmuch as it refers to the fact that NHS-funded nursing care, i.e. the £100/per week you get in a nursing home, is determined after a CC assessment is done.

Factsheet 453 ('Hospital discharge', dated September 2008) mentions that CC assessments must be done prior to discharge etc. but is very out of date, e.g. it says: "Each health authority has its own eligibility criteria that determine who is entitled to this free care. In most cases, only people with high care needs, or people who need specialist treatment, will be eligible for care paid for entirely by the NHS." Both phrases in italics are wrong: odd for a document reviewed only a few months ago.

Factsheet 468 ('Paying for care home fees', dated October 2008) makes the comment: "Occasionally, the NHS provides free continuing care in an NHS nursing home or an NHS-funded bed elsewhere for patients who need intensive care. For more information, ask your GP or consultant, or contact the health ombudsman." This comment is not entirely accurate, e.g. CC covers any setting, not just nursing homes, 'intensive care' is not an appropriate phrase and you should usually contact the PCT in the first instance.

Factsheet 469 ('When does the local authority pay for care?', dated July 2008) simply refers people to the August 2004 document above.

Can I just remind everyone: while this forum is hosted by the Alzheimer's Society, if you wish to make your views known to the society you should contact them directly. This forum is for support of sufferers and carers, not a "letter to the editors" page. While some threads may be read by AS staff, if you feel an issue is not adequately being covered by the society take it TO the society. http://www.alzheimers.org.uk/site/scripts/contact.php

Jennifer, I think we appreciate that, but I think we all agree that in this case, there is merit in flagging up issues with documents that are in the public domain that could mislead opinion about this topic. I agree that continuing care is only a side issue on TP, but we need to ensure that where we do guide carers to documents that they are up to date. From what I can see, several members are seeking guidance on CC generally judging by the number of threads that refer to the topic.

Given the numbers of errors above that could mislead members and guests, could you please pass this thread on to those who own the documents above at the Society or let me know who I contact?

Best wishes

Mark

 

[KatherineW]

Good morning

In relation to the concerns that have been raised about the accuracy of Alzheimer's Society information:

All of our factsheets containing legal information have been checked thoroughly: both internally, at Alzheimer’s Society, and externally, by a solicitor.

I stand by the information that we produce and I would like to assure Talking Point members that our literature around NHSCC is accurate.

Complex information, such as that relating to the NHS continuing care system, is always open to mis-interpretation, however.

We make every effort to ensure that all of our information is factually correct, and we would always withdraw out of date information from circulation.

Anyone with additional concerns about our printed or online information is welcome to contact Alzheimer’s Society, via the feedback form that Jennifer posted a link to. I don’t think that there is much to be gained from discussing different interpretations of AS literature further on Talking Point, however.

Best wishes
Katherine

 

[MarkEdge]

All of our factsheets containing legal information have been checked thoroughly: both internally, at Alzheimer’s Society, and externally, by a solicitor. . . I stand by the information that we produce and I would like to assure Talking Point members that our literature around NHSCC is accurate.

Hi KatherineW

Unless the solicitor specialises in Continuing Care, they may well not grasp the crucial issues. Many don't. I stand by my comments and challenge anyone to say that the points that I pointed out in my previous post are invalid. For example, how on earth did the solicitor miss the point I mentioned in factsheet 453? These are not questions of interpretation, but of fact.

I don't really understand the tone of your reply as it surely is in everyone's best interests that the information provided by the Society on this topic is correct, even if that means someone from the Society simply saying 'thanks for pointing that out, we'll make sure it gets updated'.

However, I will complete the feedback form as mentioned by Jennifer and see if things are changed within a reasonable timeframe.

Your reply

Mark

 

[sue38]

As someone just starting on the CC road, I too have found that most of the information available starts from the premise that you have been wrongly charged for residential care and deals with how to appeal an assessment.

This seems to me to be putting the cart before the horse.

There is very little information on how to start down the road if your relative is reaching the stage where you think they may qualify. Health professionals and Social Workers tend to treat CC as part of the Official Secrets Act, but even once you get to know CC exists (for which I thank TP) you are still in the dark about how to go about getting it.

The best information for those starting out that I have found is at

http://www.nhs.uk/chq/pages/2392.as...egoryID=155&r=1&rtitle=Common+health+question

with links to the Decision Support Tools

 

[Sandy]

I can't find any factsheets relating solely to continuing care on http://www.alzheimers.org.uk/site/scripts/documents.php?categoryID=200137.

I actually do agree with Mark about this. While the booklet, When does the the NHS pay for care (and the supplement) are great resources, most people would feel happier starting with the summary form of a factsheet. I was sure that there was one at one time.

Could not this document:

http://www.alzheimers.org.uk/site/scripts/documents_info.php?categoryID=200203&documentID=399

serve as a factsheet and be listed on the factsheet page under the Health and social care heading?

The Society's website is an excellent source of information, and the factsheets are one of the key places people start to look for information.

Take care,

Sandy

 

[KatherineW]

Hi everyone

Just to let you know that I am copying a link to this thread to our publications team, who would be responsible for making decisions about what topics our factsheets cover.

Thanks very much

Katherine

 

[TyJane]

misled over care fees

Hi Mark

You are not mistaken in what you say, can't wait to see how you get on.

Tyjane

 

[yvonne j]

Hi, I have gained NHSCC retrospectively for my Dad. He died Feb 2007 but I had already stated my belief he was eligible when he went into his care home. I stuck to the fact that he was in a home for health reasons not social reasons. The health board came up with all kinds of diversions such as they would re assess my Dad to see if he needed to be in a nursing home rather than the residential home, but each time I politely referred them to the facts that the type of home is not relevant, he was OK where he was, that the lawful right is for anyone whose need is on health grounds not social need, where ever they are cared for. It took two years of persistence and letters, always stating his need was health. We went 'self funding' which means the family pay but retain control while being persistent. We made the house tenants in common, changing from joint tenancy. My mother willed her half to the children. This persistence was more to do with the fact that my parents generation paid out to start the NHS all be it small amounts, in the belief they would be looked after in their need.I hope this helps. Our elderly deserve the best nursing, Alzheimer's is very cruel and all efforts to care for them is their right.

 

[Marianne]

Yvonnej
Well done. My dad died in July '07 I was awarded NHSCHC funding plus interest retrospectively in Nov'07 and received the cheque in Jan'08. I hope there weren't too many diversions for you along the way.

 

[netsmurfit]

I have won fully funded continuing care for my mother, after compleating The social Services and N.H.S Grand national course

in under a year, If you know the law or can be guided to the starting point, you can also win, Retrospective is another race The derby just a short sprint away and i know who the favourite is on this

Well done to the other members here who have also won justice for their relatives

Mick

 

[Clive]

Thanks Mick.

It is nice to be complimented on obtaining NHS CC for mum. It really did need a lot of hard work but psychologically it was well worth the effort.

It is now over a year since mum got her confirmation of CC, and going on for three years since the battle began. I really do appreciate the support I received at that time from other posters on TP and from the Alzheimer’s Society.

It really is encouraging to read that new members have already obtained NHS CC for their relations. It suggests that the groundwork put in by organisations like AS, and people like my MP and Carers who posted on TP in previous years, did persuade Government to at least make the system a little easier for Carers to master and obtain NHS CC for people with AD.

I am sure there is a long way to go, and there is still a need for better information.

In my book, anyone who can help is more than welcome to contribute his or her knowledge.

Best wishes

Clive