continuing care fees and costs

iggypop37

Registered User
Mar 2, 2014
13
hi

we are just becoming aware of this potential nightmare of Continuing Health Care fees.

Some background first, my father suffers from vascular dementia and is just now transitioning from residential EMI to Nursing EMI. The decline seem to be fairly rapid. We understand at some point that he will need Continuing Care which is a lot more expensive than the present costs.

The advice we have had regarding the NHS paying for these when the time comes is contradictory, but it seems likely that the local CCG will try to wriggle out of it. We are entirely self-funding and have no wish to pay for additional costs.

Am I right in saying that we are now best advised to gather as much evidence as possible about my father's ailments and symptoms, so we can put together a dossier. The daily records kept at the present care home are perfunctory and brief

Also who makes the decision about when the transition from Nursing to Continuing Care takes place. Is it done on assessment by the nursing home or the CCG ?

I understand that it is not supposed to be not supposed to be means-tested but it appears that it can be by default.

Can anyone advise us on what we need to do to be ready for this.

what should we be doing now ?

Many thanks
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
We understand at some point that he will need Continuing Care which is a lot more expensive than the present costs.
I'm afraid I don't understand your reference to Continuing Care and the fact that it will be more expensive. If you are in receipt of NHS nursing care funding of around £108 per week, that is it. Continuing(Health) Care is what the NHS might pay if your father has health needs which demand more care and usually, one to one attention for at least some of the time. Also, if you are fortunate to be able to get it as it is hard fought and hard won!

You do not need to assume that your father will ever need this extra care as certainly a lot of people with dementia never have need of it as it is for primary health needs only and dementia alone is not considered a health need but if aggression is involved, it is more likely to be granted.
Even people with serious health needs can find it increasingly difficult to obtain as cuts in the NHS continue to cause financial problems

I may be wrong but I think the term Continuing Care refers to that which a patient receives for a period of time after leaving hospital.

If your father has other heath problems as well as dementia, then yes, it is wise to start collating evidence which might be used at an assessment for this funding, though they will usually only accept that which relates to the condition of the person at the time.
I'm hoping someone will add a link to the Checklist and DST for CHC applications.
If not, I will try to find it but it might take a little time! Best wishes and good luck.
 

iggypop37

Registered User
Mar 2, 2014
13
please define primary health needs -is it for example having to be toileted , being unable to move, having to be fed by a member of staff ? (sorry for being lazy !)

I'm afraid I don't understand your reference to Continuing Care and the fact that it will be more expensive. If you are in receipt of NHS nursing care funding of around £108 per week, that is it. Continuing(Health) Care is what the NHS might pay if your father has health needs which demand more care and usually, one to one attention for at least some of the time. Also, if you are fortunate to be able to get it as it is hard fought and hard won!

You do not need to assume that your father will ever need this extra care as certainly a lot of people with dementia never have need of it as it is for primary health needs only and dementia alone is not considered a health need but if aggression is involved, it is more likely to be granted.
Even people with serious health needs can find it increasingly difficult to obtain as cuts in the NHS continue to cause financial problems

I may be wrong but I think the term Continuing Care refers to that which a patient receives for a period of time after leaving hospital.

If your father has other heath problems as well as dementia, then yes, it is wise to start collating evidence which might be used at an assessment for this funding, though they will usually only accept that which relates to the condition of the person at the time.
I'm hoping someone will add a link to the Checklist and DST for CHC applications.
If not, I will try to find it but it might take a little time! Best wishes and good luck.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
please define primary health needs -is it for example having to be toileted , being unable to move, having to be fed by a member of staff ? (sorry for being lazy !)
It is a health need as opposed to a personal/social care need which those are I'm afraid and which apply to many, if not most, dementia sufferers eventually.
Being unable to move is a bit general as many dementia sufferers lose their ability to move much but it would depend on the cause. Is your father paralysed?

It is very much how the CHC assessors mark the severity of things so the best thing for you to do is to refer to the links Nitram has kindly supplied via another thread.
 

MerryWive

Registered User
Mar 20, 2015
55
Hi IggyPop, I am also a little confused as NHS care is not means-tested. I would imagine the CCG will try to avoid taking on extra cases especially when they see you are already self-funding, but if your father qualifies as having primarily a health-care need, then he qualifies and they are supposed to meet the costs of care.

If you are talking about going through an assessment for Continuing Health Care funding then I might be able to offer some experience. My MIL has been cared for at home for nearly 5 yrs now and qualifies for CHC funding (she has ALZ/VD and challenging behaviours). Every year this is reassessed in case her needs have changed. This involves a meeting and detailed questionnaire being filled in by the Health Care Assessor with the CHC. Last year I prepared for the meeting and we were awarded the funding again.

I approached it somewhat as a fundraising application as that is my background. They need to see that the person has substantial medical needs as well as severe cognitive and behavioural difficulties. We keep pretty detailed daily records of what is happening with MIL as that helps us keep on top of things. As you can imagine, sometimes it is a blizzard of work and you cannot remember what happened 5 minutes or an hour ago, so it would be very easy to forget whether she has drunk enough or when she last went to the loo (she is completely dependent on us and cannot articulate her needs). So we have a daysheet where we record hour to hour what her mood is, what she has eaten and drunk and any other notable events. We get the nightcarers to fill it in too. That helped a lot with my application as I was able to go back through and extract relevant information e.g. she woke up screaming on x, y and z days and took 1/2/3 hours to calm down, she vomited at such and such time twice last month, she developed suspected UTIs four times last year which were treated this way, she contracted an ear infection last month which was treated with antibiotics etc etc etc.

I also prepared a spreadsheet where basically I listed all the parts of the body top to toe to make sure I didn't miss anything and went through setting out any medical issues she had and how they were managed. Then I had a couple of sections for overall categories like behaviour, mobility.

That really helped them to get the information they needed to see the whole medical picture.

I guess they would be most interested in what has happened in the last few months, or even weeks as they need to assess the person's needs at that time. I did it as an annual thing as it was for ongoing funding, but they looked most closely at what had happened in the last week or two, to give them a picture.

I realise it is harder to get all the info you need when carers standard notes are so brief, but they should be noting medical events so perhaps you will be able to find what you need. Or maybe you can ask them for help in this respect, I don't know, I have had no experience with care homes. :)

I would be happy to share my documentation with you as long as it was treated strictly confidentially. PM me if you think it could help.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
MerryWive, I think the 'callenging behaviour'will be what helped your application.
This has to be over and above basic aggression too.
My husband was had severe illnesses besides his dementia but was refused CHC funding.
 

nitram

Registered User
Apr 6, 2011
19,707
North Manchester
Going back to

"please define primary health needs -is it for example having to be toileted , being unable to move, having to be fed by a member of staff ?"

Toileted -no

Fed by member of staff - no

Unable to move maybe:-
Need assistance to move safely, scores points.
Bedbound and hoisted, no points.
Bedbound, hoisted, on hoisting suffers pain and/or becomes agitated/violent, scores points.
 

MerryWive

Registered User
Mar 20, 2015
55
please define primary health needs -is it for example having to be toileted , being unable to move, having to be fed by a member of staff ? (sorry for being lazy !)
Being unable to move is not a health care need, being at risk of pressure sores because you cannot move yourself is a health issue. Having to be fed is not a health-care need, being at risk of choking and needing specific foods to avoid upset stomach/constipation is a health-related issue.

If you put your mind to it you can work it out. If you are going to be lazy then you will not succeed!! ;) The way to win is to do their job for them and present the information in the way they need to see it in order to make the decisions you want them to make.
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
Being unable to move is not a health care need, being at risk of pressure sores because you cannot move yourself is a health issue. Having to be fed is not a health-care need, being at risk of choking and needing specific foods to avoid upset stomach/constipation is a health-related issue.
This wouldn't work unless you already have pressure sores which won't heal and have already choked. Specific diets won't either even if connected to serious health problems.
It is difficult to present information in a way that will change the opinion of the CHC assessors. They are the ones who know how to alter the wording to suit themselves.
 

tre

Registered User
Sep 23, 2008
1,353
Herts
We had someone talk to us about this at our support group a couple of months back.There is a website www.caretobedifferent.co.uk on which you might find some useful information.
What I found surprising was that if a patient is awarded CHC there is then a re-assessment, I think after six months, at which point it may be taken away. I was a bit shocked at this as dementia is a deteriorating condition so as far as I could see things could only get worse. She explained that if someone scored highly because of falls but then later became bed bound then that would be enough to lose the funding because the falls risk was decreased. This is just one example.
I think it is a very hard slog to get this funding but that is no reason not to try if you have the energy.
Tre
 

Jessbow

Registered User
Mar 1, 2013
2,953
West Hertfordshire
My mother was extremely dependant, double incontinent, partially sighted, widowed diabetic ( although she did feed herself.) no concept of time or danger = not awarded.

Diagnosed with a heart condition, terminal and inoperable =full CHC funding awarded.
 

nitram

Registered User
Apr 6, 2011
19,707
North Manchester
"...terminal and inoperable =full CHC funding awarded...."

Could have been fast tracked - '...rapidly deteriorating condition and the condition may be entering a terminal phase...' - which means no checklist and DST.
 

MerryWive

Registered User
Mar 20, 2015
55
This wouldn't work unless you already have pressure sores which won't heal and have already choked. Specific diets won't either even if connected to serious health problems.
It is difficult to present information in a way that will change the opinion of the CHC assessors. They are the ones who know how to alter the wording to suit themselves.
Yes you're probably right. It does increase your chances if you present it in a medicalised way though I think. It seemed to work for us. That and the severity and complexity of the issues along with unpredictability - i.e. you have to emphasise that there is no pattern to the behaviour.

I just checked that DST document and it does say you should be eligible if you score Severe Needs on two or more categories, and there are quite clear criteria as to what constitutes Severe, so it should be relatively straightforward :confused:

I know we initially got funding because of my MIL's very difficult behaviour and severe cognitive impairments (constant screaming and aggression and complete disorientation) but we have continued to be awarded funding even when those symptoms calmed down as we managed them. I think she has gone to High in Behaviour and is Severe in Cognition and Mobility. She is also High needs in several other areas. Perhaps it was a case of once you're in it is easier to stay in. We certainly realise now that we were 'lucky' although it was the NHS who administered the anaesthetic that put her in that state....
 

Saffie

Registered User
Mar 26, 2011
22,506
Near Southampton
along with unpredictability
That is a productive word!
Because my husband had had a recent amputation and could not weight-bear on his remaining foot due to a pressure sore which had become gangrenous, he had to be hoisted everywhere. He couldn't lean forward in his special chair nor lift his arms or leg.
His checklist motobility score was B. I said he couldn't move so surely it should be A.
No - he didn't get aggresive enough when hoisted!
Behaviour will win every time!
Incidentally, I'm still waiting for the Full DST assessement after passing the Checklist in September 2013, My husband died last June!
 

MerryWive

Registered User
Mar 20, 2015
55
That is a productive word!
Because my husband had had a recent amputation and could not weight-bear on his remaining foot due to a pressure sore which had become gangrenous, he had to be hoisted everywhere. He couldn't lean forward in his special chair nor lift his arms or leg.
His checklist motobility score was B. I said he couldn't move so surely it should be A.
No - he didn't get aggresive enough when hoisted!
Behaviour will win every time!
Incidentally, I'm still waiting for the Full DST assessement after passing the Checklist in September 2013, My husband died last June!

I'm so sorry to hear that you lost your husband Saffie. How awful. And the system is horrifically unfair. It really is shocking. XXX
 

LYN T

Registered User
Aug 30, 2012
6,962
Brixham Devon
Along with others I agree that Behaviour is one criteria which seems to lead to CHC funding. My OH was VERY aggressive; slapping, hair pulling, thumping, biting and slapping-and not just when he was given personal care. He used to invade other resident's space and he was at risk of being hit himself. He even put his hands round the CH manager's neck and squeezed-that took 3 carers to get him to stop. He also put his hands round my neck and squeezed once. Hoisting was a nightmare:eek: Pete was even violent during the morning on the day he died. I don't like to go over this BUT I'm just trying to emphasise what others have pointed out. Symptoms really have to be extreme to get funding. I'm not saying that is right-just as it is.

Good luck with your application-but you will have to work hard to get it. Lazy isn't an option.

Lyn T