Mum's CHC assessment today

[florence43]

Hi,

I've seen threads like this before, and I know I will have to wait for the official outcome before knowing anything, but wanted to tell you how mum's NHS CHC assessment went.

The assessor was lovely, with a sympathetic nature and clear understanding of how my sister and I felt. The NH staff were thorough but, as suspected, were a bit over-enthusiastic about mum. When asked about her communication, they said they often get a cheery smile, and facial expressions to tell them how she feels. I won't go into that now, because you'll all nod off before you've finished reading...but generally, I got the feeling they unintentionally wanted to get across what a great relationship they have with her and what a good job they were doing with her. However, on the plus side, I was able to stress the "well managed need is still a need" and the fact that she wasn't like that all the time, and that we can't be sure what she's communicating at all most of the time, has to be considered. They kept speaking of her on her good days, when we should have been concentrating on her bad days...

Anyway, here's the breakdown, (tell me if you suspect the worst, like me...):

Behaviour - NO NEEDS
Cognition - SEVERE
Psych & emotional - MODERATE
Communication - MODERATE (we asked for it to be noted that we felt it should be high, or was certainly on the border of both)
Mobility - HIGH
Continence - MODERATE
Skin - MODERATE
Breathing - NO NEEDS
Drugs - MODERATE
ASC - LOW

No matter how much reading I had done ahead of this, and despite all the advice given by fellow TP'ers, I could not have been prepared for how specific this assessment was, and how much of it was semantics.

For each of the points my sister and I had already marked as high, or even severe, in our minds, were were finding marked as moderate. I know the word "moderate" itself was quite emotive because it almost implied her needs were only a small problem...I realise it was the description within the "moderate" we needed to focus on. But even then...

Oh I won't go on.

So...1 severe, 1 high, 5 moderate (one pending as possibly high), 1 low and 2 no need. How does that look? Can this be down to her opinion, or does this outcome work to a formula? Is there point scoring for each category?

She's going back to write up her findings and discuss the Communication category with a colleague, then she'll email my case worker within the week, hopefully.

Can see it going to Panel...(what will that involve?)

I may just be spouting so don't worry if I'm asking too many questions in one post!

 

[noelphobic]

We're in the early stages of this ourselves, although my mum has been dead for 2 months. The more I read up on it the more confused I feel! Have you been in contact with the AS support group for people trying to obtain CHC?

I hope you get a positive outcome. Keep us posted.

 

[piedwarbler]

Hi Annie

Firstly - well done for surviving the day and being together enough to post about it. I would have been lying down with a hot water bottle if it had been me! But I know you have your three little ones to keep going for... you are amazing to do all this! (Are you back home yet?)

Obviously, I don't know your mum but from what you have posted I cannot for the life of me see how her communication can be scaled "moderate". On what grounds?

I also don't know how, if cognition is severe, psych and emotional can be less than severe? Is this because she isn't ranting and raving? Doesn't mean she isn't severe on psych and emotional. Some really disturbed people don't think they are disturbed and don't present that way at all. I am waffling and I don't want to upset you but it seems to me you know your mum best and that day you described her crying, well, it seemed to me that day she was severe even if she hasn't been at other times. As you say, she is well managed, but the need is still clear.

I can see why the nursing home were arguing for her behaviour on a good day in a way but then again I can't see why... surely they should be on your side? It makes you wonder what is going on behind the scenes. They must have conversations you are not privy to. Have they told you if they support your claim, or not?

I hope you get to panel, but it may be worth considering that you may not win this time, with the scores you have quoted. This seems unfair to me. If your mum were that disabled with another health condition I am pretty sure the NHS would be funding her.

I have a friend whose dad is in hospital with dementia - he has been on a long stay ward for years, at least 4 I think, and he has not had to sell his house or anything. It doesn't seem fair that it is seemingly a lottery.

I am thinking of you and wishing you well.

Pied xx

 

[TinaT]

I'm afraid that most Local Authorities now only give personalised budgets/ financial help to cases considered as critical or severe.
This means that any day care, or home help will have to be financed from her own funds. I hope that she gets carer's allowance as this will have to be used to fund any help she needs.

Just one example of how the 'cut backs' in local government funding are hitting us.

xxTinaT

 

[BeckyJan]

So...1 severe, 1 high, 5 moderate (one pending as possibly high), 1 low and 2 no need. How does that look? Can this be down to her opinion, or does this outcome work to a formula? Is there point scoring for each category ?

Looking at this I do not feel too optimistic for you .

If you feel you have big worries here why not speak to one of the Volunteer Support Workers. They are excellent and if you need to appeal they may well be useful.

http://www.alzheimers.org.uk/site/scripts/documents_info.php?documentID=398

When I appealed some two years ago, the peer group review nurses were rating higher than me and we ended up with several severes and highs, only one low.

Once we went through the Appeal the nurses said they would recommend to the Panel. I read somewhere that their recommendation nearly always went through. Maybe things have tightened with economic pressures.

We could all do without this hassle.

 

[TinaT]

I wrote carer's allowance in my previous post when I mean attendance allowance or disability benefit. Even if she was classed as critical or severe, the AL or DB would still be taken into consideration.

Also any free day care is now being changed into a charged for day care fee. In the past the actual day care was free but a small cost often had to be made for transport and any lunches given.

I do know in my own local authority they do up the score somewhat if the relatives do not give care of any kind.

xxTinaT

 

[sleepless]

And how many billions has Mr. Osborne conjured up to bail out Ireland?
Sorry, ranting.
No. Not sorry.

 

[sleepless]

Annie, forgive the previous post, intruding on yours about your mum. I won't delete it though, because posts such as yours, and my own dad having to sell the council house he worked so hard to buy (he is not £-rich, so they take that) -- I try not to be bitter, but your mum NEEDS the care, my Dad would be at home, no trouble to anyone, if he didn't have dementia.
I really do wish you the very best of luck with this, yet I'm sad to have to write 'luck'.
Best wishes to you and yours, sleepless.

 

[ange]

Hello Annie, Well done for getting through your assessment! I have been through about 4 CHC Assessments with my local PCT they are follow ons from recommendations given by my mams social worker on her yearly review. You are so right about these assessments, I find the questions which are asked seem specificially worded to downgrade each section to help the NHS from having to tot up enough points in order to put their hands up and offer to pay for care. My mam is funded at the moment by our local council. (House was sold years ago and money from that is gone :-() I am always told by the social worker that each time she has a review the council points scheme will highlight that mam needs a follow on CHC assessment. Its all a big financial fight between different authorities with our loved ones stuck in the middle of it all. I dread these yearly reviews.
I have spoken to staff at my mams care home and they are of the opinion that CHC funding is only available to those who require a massive amount of nursing care, ie regular insulin injections, drip feeding, oxygen, etc so really enough to almost every category a Severe.
Love to you
Ange xx

 

[Dilys]

Bewildered

Hi Annie

I like many other people are bewildered by the CHC scoring system. My 94 yr old MIL has been in a local pysco-geriatric ward since August. She was admitted from home for assessment, because following a hospital admission in February she became aggresive and wouldn't let the cares at home attend to her personal care. She also didn't eat for nearly a month. The hospital said that she needed 24hr nursing/dementia care. Since being admitted she is know on her secind lot of C Diff infection.

Her CHC assessment came out at:-
Behaviour - severe
Cognition - severe
Psycholigical - moderate
Communication - high
mobility - high
nutrition - high
Continence - moderate
Skin - moderate
Breathing - low
drugs - severe
conscious - no needs
other - no needs

2 of the senior staff were very optamistic that she would get CHC but I heard yesterday that she has not been sucessful, however, they will pay the nursing fees of £108.70
Take care

 

[Lost Perci]

Nhs-chc

Hi Annie

Don't get too hung up on the scoring system - it's a guide. The decision should be based on whether she has complex OR substantial healthcare needs not on how many S, P or H you got. The categories are a aide to making the decision, not the decision that's why it's called a Decision SUPPORT Tool rather than Decision making tool!

You're dead right about the semantics, the descriptions of the boxes make it seem like you have to be on 100% life support and in a coma to qualify but bear in mind the assessment has to cover all patients, including the above mentioned coma case. If you had fainting fits as 'Severe' that doesn't leave space for someone with no periods awake at all. Generally, 'Moderate' means you have a need in this category but staff can deal with it on a routine basis. the higher categories that you have a need and it's causing problems or is impossible to handle. So, using 'Communication' as an example, 'Moderate' would be if you have problems communicating but the staff can work out what you want, the higher categories that no one can possibly understand what you need at any time.

If they turn down funding, you can argue at the review that they have complex or substantial needs. I have had some good sucesses with the Independent Panels, they don't just rubber-stamp the PCT's views. Don't forget the law is based on establishing a 'Primary Medical Need', not how many boxes were ticked.

Good luck and don't give up!

Perci

 

[florence43]

Wrong weights from NH?

Thanks everyone (especially Perci!!! )

Still not sure how I feel it'll go, but I'm actually going back to the nurse assessor on one of the categories because I feel it's important for her to know how much weight has been lost over the last 4 months, since leaving hospital.

The sticking point is, however, that the NH and I have different weights for the period. Don't ask how that happened...it's a mystery (and one that I'll be taking up with the NH once this is over with), but in short I went through mum's entire NH records 2 weeks ago, in preparation for yesterday's assessment. I recorded all weights since admittance, medications, Waterlow charts...the lot. So when the nurse read out the weights in the meeting, I immediately queried them.

She said that in July, her first weight measurement was 55.6kg. When I took the weight from the records it said 58.6kg. Big difference.

She also gave the most recent weight as 55.1kg, (which was taken Oct 5th) and not November's weight which was 54.7kg.

Now...when I looked in her records, the Nov weight wasn't yet in there, and I suspect it still hasn't been updated, hence the most recent being October. (I found out Nov's weight from a separate weight log, held somewhere else.)

So, in short they are claiming that mum has lost all of: 5g, in 4 months. Absurd! Despite her being admitted with a severe UTI at the time, going from soft foods to purees to now puree & fortisip (only in last week or so). She's hardly out of bed, so allowing for muscle loss too, she's done very well to have only lost 5g.

So it doesn't add up. When I queried it at the time, she said they had got the weight wrong and there was a big 5 clearly written over another number, but I was sitting too far away to be sure. In short, I suspect the NH, being new, were under the impression they would also be assessed and I believe they weren't themselves aware of such a dramatic weight loss (4kg), and were worried how that would look to SS and us. So they panicked. After all, why would they remember in late November, (not early Nov, because that's when I was checking the notes...), that they'd made a mistake. How could they know it was a mistake? Maybe they did, but I can't see it somehow...

They said 55.6kg on arrival, my notes said 58.6kg. Every other record matched from that point on. 2nd weight was 56.6kg, meaning she'd lost 2kg (in my book), with settling into the home and recovering from the uti, that seems possible. By their records it would mean she put on 1kg.

It sounds awful, and I have no evidence, and I could have written the weights wrong. We are so happy with all other aspects of her care there, that I think this is a very school-boy error, but it mustn't interfere with mum's chance of the CHC. So I have rung the hospital on the off-chance she was weighed there, but it's doubtful and I am waiting for their response.

Long and short, if my weights are correct, this would put mum into the high category for nutrition, and also demonstrate a very rapid decline. It has to be a health issue and one that despite all best efforts is still declining. I think it would be a very important factor. So even if I don't get evidence of her weight tomorrow I am going to call the assessor and tell her my theories, plus medical opinion to back that up. The hospital thought it unlikely that mum would put on a Kg in the 1st 4 weeks, especially after suffering a UTI, plus 5g weight loss with all mum's problems seems highly unlikely in their opinion, and that my original figures seem more plausible. She would have lost weight on arrival, then it stabilized, then when she went to puress it declined and has done since.

But we know mum, and if they're really saying that mum weighed the same in July as she does now...they're crazy. She was walking around in July. She has always been a bigger lady (size 18-20) and although she's gradually got a bit smaller over time, there's NO WAY she's the same now as she was then. But I can't prove this, so I will just make sure it's noted as the familys strong opinion.

Wish me luck!

(and don't worry too much about the NH issue! I know I sound soft and dismissive about it, but that's just because I'm focusing on the assessment right now. One thing at a time, but...I'll be ready for round two, when I've got some sort of evidence, and also when the assessment results are given. Just try and stop me!! )

 

[piedwarbler]

They weighed my mum on admission to hospital, so I would have thought they should have done the same with your mum?? I hope you get some joy from the hospital. I certainly think your figures sound much more likely.

I can only wish you strength and stamina, for the time to come, as you fight on.

(Do you think the system is set up to see if people get tired? I am sure they make all these hoops hoping that no one will have the energy to try and leap through them! ...)

All power to you Annie, wishing you wings for your journey.

 

[florence43]

Thanks Pied,

I know none of us are medical experts, but often the real life experiences make more sense than the experts anyway...

Think I might start new thread on weight loss issue...the title of this thread doesn't raise a lot of interest generally, and I think I'd like to get a wider feel for general trends in weight gain / loss. Mmmmm. Think I'll do that!

P.S Love the new profile piccie! Very seasonal!

 

[piedwarbler]

I think that's only because relatively few of us have gone through CHC assessments, don't you think? The whole process is so obfuscated that you have to be pretty determined to even start down that road!
But a good idea to post about weight loss, yes, I think a lot of people will relate to that.
Take care x

 

[noelphobic]

I recently got my mum's NH records and, according to them, she was weighed on 14th September which is 2 days before she died. She had been extremely ill for over a week at that time and was not expected to survive, so I find it hard to believe they would have weighed her at that stage. However, she should have been weighed every 4 weeks and at that time it was 6 weeks since a weight had been recorded for her. I'm not sure what to think!

Her last weight recorded was 5 stone 10. She weighed over 8 stone when she first went into residential care.

 

[Westie]

There really doesn't seem to be any hard & fast rules about Continuing Healthcare which make it such a hard process to understand. My husband (aged 55 with Picks disease) was finally assessed yesterday. I have been repeatably told by SW that he was nowhere near the necessary criteria, but they finally agreed to assess him. His levels were:

Behaviour - Severe
Cognition - Severe
Psychological - Low (????)
Communication - High
Mobility - Low
Nutrition - Low
Continence - Moderate
Skin - Moderate
Breathing - No needs
Drugs - Low
ASC - No needs

The assessor amazed me by saying that Peter definitely qualified and, in her opinion, should have been assessed sooner! I won't actually believe it until i get the written report but I'm really hoping she wouldn't say that to me unless she was certain of the outcome.

Having read this, and many other threads about CC, I wasn't optimistic at all and I think this result just shows how different PCT/Assessors view matters quite differently.

Although the lady was lovely and the staff at the care home were very supportive, I still found it a gruelling morning going over old ground/incidents which I had managed to park at the back of my brain. When she gave me her verdict, I dissolved into tears and couldn't stop for a while. Lots of emotions plus HUGE relief that an enormous financial burden could be about to be lifted.

Good luck to anyone going through this process. I was only able to argue Peter's case so strongly because of all the information I had learnt through TP. If I had sat quietly and let the care home staff do the talking, I think it would have been a different outcome. They didn't do anything wrong, but just kept on about how lovely Peter was and they were focused on his good days rather than the bad ones. Each time I mentioned an incident/example they looked surprised and then said....oh yes, we'd forgotten about that event!! In the end I did all the talking and they backed me up with evidence/reports of anything I remembered to tell the assessor. Do as much preparation as possible and include everything, no matter how small it may seem.

Mary-Ann

 

[Heather777]

Mary Ann best of luck today-not sure if that is the write term to use for a CHC assessment!!!

I agree that who knows the actual criteria to receive it? We are having to wait until Dec 21st for our appeal against a decision in February! The assessor thinks my dad should get it and should have had it in Feb but my thoughts are it is all subjective.

I really hope that you are successful and I totally agree that the support and advice on TP helped me have the courage to appeal against the original decision.

Heather

 

[noelphobic]

There really doesn't seem to be any hard & fast rules about Continuing Healthcare which make it such a hard process to understand.

That's part of what makes the process so unfair. There SHOULD be hard and fast rules but they seem to be interpreted differently by everyone. I am sure there are people in better health than my mum was who have qualified for CH simply because they lived in another area or were assessed by someone else. I don't begrudge them that at all but I think it is so wrong that very few people seem to get this without a fight and sometimes not even then.

I wrote to the PCT 2 weeks ago to ask for a review and haven't even had the courtesy of a reply yet.

 

[piedwarbler]

It does seem a bit arbitrary and I wouldn't mind betting some of it depends on how much there is left in the pot, and what time of year it is. Or am I being too cynical?