Hi, I have never put anything on a forum before so I hope I have posted this in the right place! Can anyone help me? My father had a massive stroke in 2003 and was left unable to communicate (he could not talk, point etc but could mutter hello), doubly incontinent, paralised down one side, peg fed and not often aware of his surroundings. After the initial stroke he was given 2 days to live but through strong will power he managed to survive. My mother had to fight to get a peg put in and had go to a panel as the doctors felt that it wasn't a viable option as he was so ill and brain damaged. After his initial critical care he was admitted to a Paliative Care ward for ten months ( during this time he was still very ill and suffered several chest infections but with medication...he came through). When a place became available in the home next to the hospital my father was moved in Nov 2003. He remained there without any improvement in health and suffering various infections until he died in Jan 2009. My mother had to partially fund my fathers care for most all the time he was in the home. She became fed up with the assessors in 2007 and scored through the report they sent her saying that dad was not suitable for full funding and sent it back to them. My father died in Jan 2009 and we got a letter shortly after to say that he was now eligible for full funding and they paid for the last couple of months of his life!!

In our opinion if he was eligible for full funding at the end of his time in the home then he should have been receiving it from the beginning. His health/ condition didn't really change apart from infections and general degeneration due to age and the effects of living with a massive stroke. Also and rather stupidly we weren't really aware of continuing health care when my father became ill. My brother and I do not live close by my parents and so many of these meetings were left to my elderly mother to conduct with assessors and the home. Also My mothers generation are not the type to rock the boat and generally believe whatever doctors and health professionals say. My primary concern at the time was to visit as regularly as possible and to care for both my parents needs....at the time we also had no idea how long Dad was going to survive. Therefore, although funding was a concern, after the horror stories you hear, we were just grateful that my mum wasn't going to have to sell the family home to pay for dad's care etc. However, as time moved on we became more aware that we shouldn't be paying for dad's care as he was in the home for health reasons and mum did say to the assessors that if dad was not a high risk case then you'd have to be in a coma to be eligible for full funding! Since he has died we have also seen stories on television and in the newspaper about the NHS continuous care funding scandel. So, We have lodged a complaint and have had to go through our MP to get it looked at. My brother and mother had a meeting ( arranged at short notice so I could not attend) with the Continuous Health Care worker assigned his case last week and it has now become apparent that they will only look at his case retrospectively from the date of his last funded nursing care assessment which was may 2007....three and a half years after he went into the home. They are also claiming that the staff in the home could understand dads need through his body language and so this was not high risk. A medical friend of mine has said this would be very difficult for them to prove. His double incontinence and peg feeding also do not come up as high risk and neither does the fact that he had to be strapped into a chair or have a bed with a special mattress and side bar!

At last weeks initial meeting my brother and mother were told there would be a panel meeting next wednesday to discuss his case but were not informed they could be there. I have since found out that we can attend this meeting and have realised (especially after the information that came out from the notes the continous health team have) that I needed to delay the panel meeting so that I can prepare our case. I have requested my fathers medical records and will be in touch with the hospital to get his neurologists initial diagnosis after his MRI scan. I am keen to prove that my father's condition was so bad that he should have been eligible for continuous health care all along.

Can anyone advise me of anything else I need to do and if I'm right in thinking I should be able to make a retrospective claim to the beginning of his illness. Should I be getting a lawyer involved? I have looked at Hugh James website and got the initial enquiry form although it has come via Involegal.

I hope this makes some sense. It's very difficult to explain succinctly exactly what happened and I'm sure I've missed important information and included things that are not relevant but if anyone has any advise it would be much appreciated..... even if it's just to say we don't really have the right case for continuous care.
Thanks

Hi Katherine,

Your position sounds very similar to mine. My mum had a bad stroke in 2007, with similar needs as your dad.

You most definately have a case here and you are certianly in the right place with regard to the forum.

There is something about claims prior to 2004, which I have copied below, but as the majority of your claim period is post 2004, then I would say you have a good chance for the whole period.

You realy need to look here:-
http://freenursingcare.findtalk.biz/t680-links-to-useful-information
and aquaint yourself with the National Framework & Decision Support Tool. You also need to get a copy of the Continuing Healthcare policy your Primary Care Trust used between 2003 and 2007.


"The Government in 2007 closed down claims for retrospective appeals prior to 31st March 2004 officially, but there is an entitlement for cases to be considered if there is good evidence to support that an individual has wrongly paid for their care - whether you were at home, in a care home or a care home with nursing - You may have a case, from April 2004 onwards based on individual needs".

Regards

Also, I would go onto your local Primary Care Trusts website and find their local policy in operation now. This should advice what their policy is with redard to any retrospective appeal process. It should pretty much point towards the National Framework (NF) and Decision Support Tool (DST).

Be preparded for a lot of reading!!!!

Hi Katherine and welcome
Good advice offered by beetle, and I'm sure others will be along also . I'm just here to say you must'nt reproach yourselves for knowing nothing about continuing health care in the earlier stages of your father's illness. My father fell seriously ill in the late 1990's, and we didn't know it existed until until 2003. The so-called health care proffessionals don't ever give you an inkling about it, and your first priority is to look to your relatives day to day needs which doesn't leave much time for anything else. Good Luck.
HK

Hi - I am currently trying to get retrospective funding for my my later mother in law. I have had one IRP and one SHA appeal. Like you I too didn't know anything about CC until just before she died - so don't beat yourself up about not knowing - its not something the powers that be like too many people to know much about. I would try and put off this meeting until you have had the chance to get all the relevant records yourself. You need to be as well armed as possible.

I went through the records and put them together in date order and highlighted all the important details, but be warned you will probably find somethings you were not aware of that may be very upsetting - I know we did.

If you know someone with a nursing/clinical background I would get them to go through the records with you so you can pull out all the relevant details and look at what the needs were and how they all interacted. They should not make stupid comments like the carers could interpret his needs so he was not at high risk, he still had needs whether they were managed or not.

Good luck - Smileymiley1

Thanks very much to all those who have responded so far. It's very encouraging to know that others were in similar circumstances and unaware of CHC. Thanks also beetle for info on National Framework and decision support tool.

Katherine, try not to use a solicitor if possible. It will cost you thousands and if you read as much as you can on this forum you will see others have done their appeals without the use of a solicitor. It can be done alone and you will always get help here if needed. A lot of solicitors are not clued up on FFCC or anything to do with it, so try if you can to do it yourself. You seem to be clued up on a lot of aspects regarding the retrospective claim, and reading your post regarding your late fathers illness I would certainly say you are entitled to all of the money back. They would know this but will lead you to believe you can't have it back, but stick with it and press for all monies paid to be returned. Best wishes and regards

Hi
Thanks for your response. I have been in talks with the Continuous health Care Clinical Lead who is being quite helpful but says that my dad was never diagnosed during his NFC assessments as having high enough scores to rate his care as needing CHC and they say that this is proof that they do not need to go back to 2004 and are only considering looking at our case from mid 2007 even though again he was not scoring high enough at this assessment....I obviously feel that he was wrongly assessed from the beginning and feel that this was a money saving exercise for them... So I guess it will be down to me to prove from his medical notes that he should have been eligible for CHC. The problem I am finding is that because my dad was so disabled and could not cause a fuss or harm to anyone and was strapped into a chair all day he doesn't seem to have been considered a difficult or needy case. The wording of some of the categories in the assessment is obviously designed to be ambiguous and in the NHS favour. I'm sure I'll get there in the end but is quite a complicated procedure!!
Thanks again
Katherine

Katherine,

Take a look at these two links. Even more reading I'm afraid.

http://www.ombudsman.org.uk/improving-public-service/reports-and-consultations/reports/health/nhs-funding-for-long-term-care/6

You need to be up to speed on the Coughlan judgement as this is the comparitor used in the Wigan case above.

Link below is Health Ombudsman's completed investigations 02/03. Page 27 of the report concerning the case of the former Shropshire Health authority is the one to read.

http://webarchive.nationalarchives.gov.uk/20060214034828/http://www.ombudsman.org.uk/pdfs/hicdm03.pdf

Regards

Thanks I will definitely look at those pages...have been on a few sites that discuss the Coughlan case and have tried to understand all the legal jargon. I guess I'll have to prove my dad was at least as ill as her? Their illnesses vary but where as she was mentally fine my dad was not.... although he didn't have the breathing problems she did. From what I can understand she wasn't in a nursing home and was able to partly look after herself and there is no way my dad could so hopefully he will be judged as ill as her. Other stuff I have read seems to say that the criteria they use to determine someone's level of illness is unlawful and as long as his primary need was health care then the NHS should have funded all his care.

Feel like I am getting a bit obsessed with it. Over the last few days I've done nothing but respond to emails from the Trust and read reports.

Thanks again

Katherine

Yeah, it does tend to drag you in somewhat. I would prepare yourself for the long haul though.

Regards

Forgive me if you have already accessed this document, but I include a link to the Department of Health NHS Continuing Healthcare Refunds Guidance. It outlines the procedure and contains references to other documents which you may wish to follow up. (More reading!)

http://www.dh.gov.uk/prod_consum_dh/groups/dh_digitalassets/@dh/@en/@ps/documents/digitalasset/dh_115052.pdf

You will need to be obsessive if you are going to get anyway with all this.

Hi all,

Could anyone clarify a point for me please?

I'm aso plugging away at retro assessment for a relative who has now died. For me, the time in question is May 2008 onwards, for just over a year. (I have already been refunded the care fees for the last few months of life). As this was during the time when the National Framework 2007 was being used, should the assessment be as set out in that 2007 document, or should they be using the 2009 'Revised' NF which replaced it?
I need to be sure I'm using the right one for setting out my case!
Kind Regards
GM

Luke Clements states the 2007 & 2009 versions are fundamentally the same.

Take a look at http://www.lukeclements.co.uk/downloads/NHS_Funding_for_CC_revised_Guidance.pdf

Thanks! I'll have a read,

All I got from the PCT was some drivel about each case being looked at individually, not exactly helpful! Probably meams 'we make it up as we go along'.
GM

Hi Katherine,
I too knew nothing about FFCC, indeed despite my mother being put into care in 2004, I did not know anything until I saw a programme on TV in 2007?2008.
Thanks to this web site and the helpful posts that other people have put here I have attended my first IRP this morning, which I think went well despite the bulling tactics of the "INDEPENDENT" chair person, at least I was prepared for that
by the good advice and learning through this website.

I am prepared to go to the bitter end for the wrong they have done to my mother, when my father died she was in respite care and they dropped me like a hot potato without any advice or information about assessments and such. I FEEL THAT I HAVE BEEN VERY SLOW ON THE UPTAKE BUT I AM CATCHING UP VERY FAST!

terrytops

Hi
That sounds very similar to my state of affairs...only just getting up to speed with all the details as they had pushed to have the IRP very quickly and had been liaising with my 82 year old mum. I have delayed this meeting until after I get more info. They are currently saying they'll consider our claim from 2007 although they say they have evidence that he did not reach the criteria. I have noticed from their needs portrayal document that he had started to become physically abusive to the nurses in 2008 and he was suffering from many chest infections...so this maybe why they are looking at it from then. I however believe he was miss assessed in the first place...how can they say a man that would put my jewllery or jigsaw pieces in his mouth or anything he had nearby and couldn't form a sentence or point to anything was capable of making independent decisions!? Bit confused as to what assessment form I should be looking at as I printed off a copy the NHS continuing Healthcare checklist which had A B and C domains and highlighted area's where I thought they were wrong in diagnoses ( and put this in an email to the CHC clinical lead) but the criteria in the Needs Portrayal document seem to be different. Or should I be arguing my case on the basis that he was in the nursing home on a healthcare basis and they are not being Coughlan Compliant by refusing continuous healthcare as well as going against the NHS principle of free healthcare for all? Bit worried about how to present my case and how they're going to deal with my argument that they should be looking at this from 2003 and not 2007...my mum is obviously worried we're going to upset them and that as it is we might get some repayment but if I push it they'll just say no!!
Katherine

Hi Katherine,

My mother was not assessed for cc, in 2004 she was in respite care put there by social services while my father was in hospital, he died in hospital after 4 weeks,
she was having regular respite care because of her mental health needs anyway, and could have extra, when he died they passed their condolances on to me and then dropped me like a hot potato, we have in fact paid for all her care (after house sold) including the respite which was free as part of her care plan approach due to her mental health needs.I did not realise that we had done this until I started to look into all this. The trap I fell into was revealed when I got her mental health notes and social service records early last year.
At the IRP this morning the social service representive uttered not one word!

terrytops

Katherine,

You need to get hold of their policies pre and post 2007. The post 2007 policy must detail how they will handle retrospective claims including claims prior to 2007. They will need to be compliant with the NF as that was the whole point of it being National.

You need to be shrewd and be stealthy while and in assembling your evidence. At the moment you will probably be overwhelmed by all the reading and maybe not quite got your bearings with all this just yet. You could read literally 24hrs a day for months and months on all this stuff and only scratch the surface. There is no immediate rush. Get your bearings and some reading behind you to form your own opinion before attending any PCT meeting. Everyone's case is unique to them. Only when you are ready should you meet with the PCT. Remember you are the expert on you dad nobody else.

Regards

Hi Everyone

Firstly, I admit that I do this as a vocation and a living!

That said, there are many, many arguments for and against the award of NHS CC to the terminally ill, most of them concocted by employees of the NHS to ensure the longevity of their employment - even though they profess to be on the side of the patient; you only have to look at their salary/holiday/sick pay/pension structure to know on whose side they really are.

I do not advocate my clients going to any other than the first Assessment meeting as the rest are placatory meetings designed to make the relative feel they are being considered, when they are not.

My first argument is: my clients have patients of plus 80 years of age, the very people that paid into the NI scheme from day 1; the very people who scrimped for a deposit on a property, paid off the mortgage - all from taxed pay - and managed to save so that they "would not be any bother to anyone" when they were old.

These people have been systematically raped of their savings by a gargantuan state body that, without any thought or remorse, consistently breaks the law of the land. With the greatest of respect, the feeling I get is you think I am a leech on your body?

I not only fight your case to the absolute end - be that the P& HOS or the Law - I also claim statutory interest of 8% per year - most of which, generally, pays our fee - damages for the effective forced sale of the patient's property and damages for distress and anxiety caused by the PCT's maladministration. If you think 20% of the amount of restitution is excessive for all of this work, you are entitled to your opinion, of course, but we have a 100% success rate and you do not have to suffer the stress.

Thank you for allowing me to voice my opinion.

Hi ct888
In December 2009 you said you needed a solicitor, the only other time you have posted so far as I can see. Now you are saying you are a sort of expert on the subject.

I confess that I do not understand your post. Of course relatives must attend all assessments and reviews in addition to writing out their case - how else can we stand up to them?

It might be helpful to us all on the Forum if you could share a little bit more about yourself and your skills and experiences. Who is the 'we' who get a 100% success rate - a firm of solicitors? Please!

Best wishes

maryjo

Hi everyone - I am at the point where I need a solicitor - can anyone help?

I was thinking the same Maryjo. The only post by ct888 was exactly 2 years ago and the above posting of just 15 words from that time was a post that was written as 'sheer desperation'.
Like you Maryjo, I don't understand how/why ct888 now does this 'as a living'.....
I, probably like others who have seen ct888's post would also like to be enlightened how ct888 now has many clients and has gone from 'Help me', to 'If you think 20% of the amount of restitution is excessive for all of this work, you are entitled to your opinion, of course, but [b]we have a 100% success rate and you do not have to suffer the stress'. [/b]

ct888, what is the name of your company, and how many clients do you have which you have gained the 100% success rate for?
Why haven't you in the last two years if you have gained so much information & knowledge regarding FFCC been back to this forum to give your advice for free like everyone else does? You have come back two years later to offer help but at a price! That leaves a very bad taste in my mouth .

ct888 wrote:Hi Everyone

Firstly, I admit that I do this as a vocation and a living!

That said, there are many, many arguments for and against the award of NHS CC to the terminally ill, most of them concocted by employees of the NHS to ensure the longevity of their employment - even though they profess to be on the side of the patient; you only have to look at their salary/holiday/sick pay/pension structure to know on whose side they really are.

I do not advocate my clients going to any other than the first Assessment meeting as the rest are placatory meetings designed to make the relative feel they are being considered, when they are not.

My first argument is: my clients have patients of plus 80 years of age, the very people that paid into the NI scheme from day 1; the very people who scrimped for a deposit on a property, paid off the mortgage - all from taxed pay - and managed to save so that they "would not be any bother to anyone" when they were old.

These people have been systematically raped of their savings by a gargantuan state body that, without any thought or remorse, consistently breaks the law of the land. With the greatest of respect, the feeling I get is you think I am a leech on your body?

I not only fight your case to the absolute end - be that the P& HOS or the Law - I also claim statutory interest of 8% per year - most of which, generally, pays our fee - damages for the effective forced sale of the patient's property and damages for distress and anxiety caused by the PCT's maladministration. If you think 20% of the amount of restitution is excessive for all of this work, you are entitled to your opinion, of course, but we have a 100% success rate and you do not have to suffer the stress.

Thank you for allowing me to voice my opinion.

Excuse me, but you sound like a lawyer touting for business, is that the case? If so, we don't like lawyers by and large here, and if you just another ambulance chaser, then tell us. If not, then who are you, and why are stating fees for what you do etc?

Do it as a vocation and a living? Pull the other one, you are doing this to make money - period. Lawyers can claim exactly the same questionable "moral" stand.

Just to clarify: some of us here do like some lawyers. (Others dislike them with a vengeance.)

You don’t sound much like a lawyer to me, ct888. If you were a lawyer, I think you’d know that there’s no such thing as the ‘P&HOS’. It’s possibly the OPHSO, Office of the P&HSO that you need.

You’d also know there’s no need for you to mention ‘the terminally ill’. There’s more to CHC than being terminally ill.

Also, your clients don’t have ‘patients of plus 80 years of age’. Your clients have relatives and/or friends – not patients. Care homes don’t have patients either – they have residents.

So you don't sound much like a lawyer to me.

On 11 December 2009 you posted on another forum that you were looking for a solicitor on a ‘no win no fee’ basis, and you asked another poster to give you details of the firm of solicitors they knew of who were successful in dealing with CHC claims. You gave your post the title Care Home Fee Reclaim. The other poster then posted details of the successful firm of solicitors – you never posted there again.

Another member of that forum gave you the link to this forum, and so it came to pass that ........ on that very same day 11 December 2009 you joined this forum and posted here on 15.12.2009 saying that you were looking for a solicitor.

Hi everyone - I am at the point where I need a solicitor - can anyone help?

Exactly two years on, you've turned professional and become an expert in CHC.

If you think 20% of the amount of restitution is excessive for all of this work

You said that before anyone here questioned your fee being 20% of the amount of restitution. Sounds as though you perhaps feel it’s excessive.

we have a 100% success rate

If you’ve had one client for whom you achieved a successful outcome, you will have a 100% success rate.

My guess is that you’ve set up a company – or even more than one - trying to assist people to reclaim care home fees.

Welcome back, ct888 - now be straight with us, please, and let us know how we can help you.

VM

Couldn't have put it better myself VM , couldn't have put it better myself ! I hope ct888 comes back ( not in another 2 years ) to reply to us all with the answers we have asked from them .....

Hello ct888 and everyone

Finn Mickey regards you as a lawyer ""touting for business"" and I think hes right about the last part.
But a lawyer? and one with such success rates? Not with the sort of post you have just put together.
You sound like a Philadelphia Lawyer to me?

Although I dont disagree with your emotive comments about the NHS and its staff, I have never read or heard a solicitor use such contentious wording.

I dont know how many people you have represented but you dont make very much sense? For starters if you think no one should be bothered to attend any other meeting than the first, because there is no point to it. You appear to be clueless as to the importance of the structure of the assessment proceedure itself and how that can be the most vital factor in the successfull outcome of an appeal.

You appear to use as your main point of attack the fact that your clients are over 80 and have paid tax etc, to be the winning gambit. It isnt that argument would get you nowhere either in the Assessment meetings or in a court-room.
You dont appear to know much about CHC work either when you state there are many arguments both for and against awarding CHC to terminally ill people. There are not many, many different arguments and CHC is mainly not about terminally ill patients except within the guidelines of fast track, but is rather about long term care period.

Your P and Hos you write about are meaningless to me and I suspect most other people on this forum.

You dont appear to be very good at mathematics either when you say that the 8 per cent interest you win covers your fees. Given what lawyers charge that is unlikely. You then say that 20 percent is reasonable for all you do
Which if you really always got back everything you claim to would be fine. But answer me this. How many cases are there on record where a PCT or LA/SS have paid damages for the enforced sale of a property? or for distress etc?
I dont know of many at all. Basic interest yes. Even returning the financial position of the damaged person to the state it was prior to the unlawful action is not very often done.and by government rulings that should be done.

If you want to help then please give any advice freely and while we are not all against lawyers on this forum it is not acceptable for someone to offer service for fees which you are clearly doing.

If you are a lawyer or work for one just say so. If you are a con-artist trying to take advantage of people who are very emotionally vulnerable then you dont need me to put in words what you can do.

Very kind regards to everyone except you who have to show me you have a right to them.
Ian

maryjo wrote:Just to clarify: some of us here do like some lawyers. (Others dislike them with a vengeance.)

I only dislike the very bad ones, and there are far too many of them, and again, a fair proportion appear to operate in this "market" for want of a better term.