Help needed with checklist for CHC

[padmag]

Hello, everyone on TP, I haven't been on here for a while. I look after my partner Richard who has dementia and it is getting a lot harder to cope. Anyway I read often and get guidance that way, my favourite go to place for help, from those that really know.
Today I would like some financial advice about my Mum's care. I will outline the facts :-
Mum has been in a nursing care home for the past 6 weeks. She is self funding as she has small savings and a modest property. She is 90 and has Alzheimers diagnosed (4 years). Her symptoms are rapidly increasing, she has lost her speech and cannot communicate, double incontinence, and has to be fed (she shows no interest in food but will take it sometimes if we/carers feed her)She sometimes coughs when feeding which I assume to be dysphagia or start of. Those are her main issues, she is mobile (slow and with support) and is on low medication. She has an anneurism which is monitored.
The nursing home seems ok and I think Mum has settled, it is £1200 per week. It uses the 'butterfly' system, where they have a high ratio of carers, and I can see that it is generally well managed (I have the usual gripes about lost teeth, clothes, giving her meat when she can't chew without her teeth.... I could go on) -
I have asked the home to start the process for CHC (I thought that it would be automatic being a nursing home), and we have a meeting tomorrow with the manager in preparation for the checklist next week. I have read a lot about this and feel that it will just be an exercise with box ticking . The Manager has verbally said that she doesn't think Mum will get it - I feel that she has already made up her mind, I had hoped she would be on our side to help.
This is her response, to an email I sent to her following her comment that it isn't a checklist anymore, but a review, asking for clarity :-
"Up until recently care homes were allowed to submit a Continuing Healthcare Checklist, which would trigger a review by a nurse assessor. We now request a review for a person who is self- funding, on this request we briefly describe an individual’s care needs, the person who comes to do the review will complete the checklist at the time of the review.
I don’t think that your Mum will meet the criteria to receive full continuing care funding but will hopefully meet the criteria for funded nursing care.
Hope this makes things a little clearer, if not we can discuss it further when you come in"

I am confused - what has self funding got to do with CHC? How can she make up her mind about Mum not needing CHC? I am spending all of my spare time on this at the moment, as you can appreciate I don't have much, and having read of other peoples battles, i am not sure I have the energy but will do my best.

 

[Banjomansmate]

My friend is just going through the system but direct from hospital. Last week we had the first assessment (I have LPA) with the ward sister and a social worker. He was assessed on levels
A high nursing need
B some nursing needs
C low need.
On eleven areas such as eating, incontinece, medication, behaviour etc.

I think that 2 As were needed to trigger a further in depth review as to whether full CHC funding was considered. Some nursing needs meant that it could be part funded.

The first check list was quite straightforward as far as I could tell and you might be able to go through it yourself to see if you think your Mum might qualify, I think I have seen a copy of it online but I don’t have enough posts to allow me to post a link for you.

C.

 

[Louise7]

You're right, whether someone is self-funding or not shouldn't make any difference to the actual CHC process. However because the full CHC funding rate is often below care home fees there are some homes which will not take people who are in receipt of CHC full funding. Care home staff will have a lot of experience of the CHC process and based on individuals needs will have a good idea whether someone would qualify or not. Did your Mum go into the home straight from hospital? If so they seem more inclined to complete a checklist for non-self funders in hospital and just leave the self-funders to get on with it. That could be why the manager is specifically referring to the process for self-funders as council funded residents will have tended to have had an assessment prior to placement.

The home would have conducted an assessment of your Mum's needs before they agreed to take her and as this was only a few weeks ago should be in a good position to identify if she is likely to get the funding or not, rather than it being a case of being 'on your side' or not. Plus if they are a home that does not want/accept CHC funded residents then they wouldn't have accepted your Mum in the first place if they felt that her needs were such that she might require CHC. Best to clarify any queries with the manager when you meet but from what you have posted, and based on my Mum's needs which are not that dissimilar to your Mum's, I think it's likely that she would get FNC but not CHC. Prior to the checklist meeting, as mentioned above make sure that you read up on the marking system and have a think about which scores you would give your Mum.

Edit: Here's a link to the guidance. There's a lot to read but it's a good idea to familiarise yourself with the process so that you can ensure that the Framework is being followed (it wasn't in my Mum's case). https://www.gov.uk/government/publi...inuing-healthcare-and-nhs-funded-nursing-care

 

[Beate]

Padmag, almost nobody gets CHC funding. My OH presented just like your mother, only without mobility, and he didn't qualify. The way the scoring works is geared against most people, unless for example they display grave behavioural problems. The manager will know and have experienced this and is just passing this on to you. It doesn't mean she has made up her mind or taken against you or whatever.

Btw, if it is found that she is eligible for FNC, don't automatically assume that her fees will drop. Often enough this is absorbed into more 1:1 care and simply paid to the nursing home as some kind of allowance.

I'd like to pick up on something you mentioned about your Mum occasionally choking on food. Has she been assessed by the SALT team? They deal with eating, drinking and swallowing. Choking is serious and could lead to aspiration pneumonia which could lead to death. It might be that your mother needs a more puréed diet so if she hasn't been assessed yet, please ask for a referral.

 

[padmag]

banjomansmate, Louise7,and Beate.
Thanks for your prompt responses. I have downloaded the checklist and Mum seems to score 7 x C's, 2 x B's and 3 x A's, in my opinion. Yes they did an assessment, but Mum has deteriorated since then (Mum went in from her 3 week respite in another care, not nursing, home -they couldn't keep her there because of her needs).I don't see how the nursing home can base their initial assessment on the fact that Mum will not need CHC in the future, as dementia is progressive, the rate of which is unpredictable too. I understand that if she only gets FNC that the care home may absorb this fund themselves, however FNC does support the fact that she has some nursing need.
I will get a salt assessment organised, and mention it tomorrow to the manager. I'm afraid I look like the bossy daughter ( not to mention the bossy partner) hey ho it goes with the territory! One up side to this? is when we visit Mum, Richard has a great time, talking to the carers freely moving around and eating anything on offer he's a happy soul in there and they all seem to make a fuss of him.
Thank you all again, there when i need you.

 

[Jessbow]

My mother had advanced dementia, was partially sighted, double incontinent and insulin dependant diabetic....and he didn't qualify Until she developed an inoperable heart condition, then, and only then did we get it.

All of her issues were managed by carers, so CHC wasn't awarded until the heart condition was identified.

What bit of your mums care requires a qualified nurse, rather than a carer?

 

[karaokePete]

In the hope that it may be of some use, here's a link to a thread about CHC support https://forum.alzheimers.org.uk/threads/chc-continuing-healthcare-support-thread.86059/unread

 

[padmag]

My mother had advanced dementia, was partially sighted, double incontinent and insulin dependant diabetic....and he didn't qualify Until she developed an inoperable heart condition, then, and only then did we get it.

All of her issues were managed by carers, so CHC wasn't awarded until the heart condition was identified.

What bit of your mums care requires a qualified nurse, rather than a carer?

jessbow, Sorry to hear of your struggle, and glad that you now have CHC, thanks for your reply. The care can be given by anyone, not necessarily a qualified nurse, the law says CHC is given at the point of need (even a managed need), not who gives it, or even the setting, it could be a home or a residential home. even a combination of lower level needs mean there is an overall need. Mum needs skilled care to anticipate her needs, she is withdrawn, I think it is very complex when someone cannot communicate, and cannot do anything for themselves. I have read a lot on this and it is down to the law, not the NHS interpretation of the guidelines, but who has money to spend on solicitors, think I'm rambling now.

 

[canary]

The trouble is, Padmag, that all the things that your mum has trouble with is considered social care. It is only once there is health care needed that the CHC starts to apply. This is why people with dementia only very seldom qualify for CHC, or even the Funded Nursing part. It is a good rule of thumb, that if their needs can be met by a carer (even if it requires an experienced and well trained one) then this will almost certainly be classified as a social need.

 

[Beate]

banjomansmate, Louise7,and Beate.
Thanks for your prompt responses. I have downloaded the checklist and Mum seems to score 7 x C's, 2 x B's and 3 x A's, in my opinion. Yes they did an assessment, but Mum has deteriorated since then (Mum went in from her 3 week respite in another care, not nursing, home -they couldn't keep her there because of her needs).I don't see how the nursing home can base their initial assessment on the fact that Mum will not need CHC in the future, as dementia is progressive, the rate of which is unpredictable too. I understand that if she only gets FNC that the care home may absorb this fund themselves, however FNC does support the fact that she has some nursing need.
I will get a salt assessment organised, and mention it tomorrow to the manager. I'm afraid I look like the bossy daughter ( not to mention the bossy partner) hey ho it goes with the territory! One up side to this? is when we visit Mum, Richard has a great time, talking to the carers freely moving around and eating anything on offer he's a happy soul in there and they all seem to make a fuss of him.
Thank you all again, there when i need you.

The A, B, C list is only the preliminary checklist. The full assessment is called the Decision Support Tool and it categorises needs as None, Low, Moderate, High, Severe or Priority. You need as many Priority and Severe needs as you can (detailed info is in the documents in the below link), and seeing that only 4 out of the 12 categories even go up to Priority and 3 only go up to High, you can see how difficult it is to get the funding.

https://www.gov.uk/government/publi...inuing-healthcare-and-nhs-funded-nursing-care

 

[nitram]

If you think of continuing health care as continuing hospital care things may become clearer.

CHC was set up to cover the position where a person was in hospital with a condition that could not be catered for by standard community health provisions.

If the person's condition did not require the infrastructure of a hospital and only needed specific specialist care this care could economically be funded by the NHS and provided outside of the hospital.

Hence the reason why CHC assessment only considers medical problems.

 

[padmag]

The trouble is, Padmag, that all the things that your mum has trouble with is considered social care. It is only once there is health care needed that the CHC starts to apply. This is why people with dementia only very seldom qualify for CHC, or even the Funded Nursing part. It is a good rule of thumb, that if their needs can be met by a carer (even if it requires an experienced and well trained one) then this will almost certainly be classified as a social need.

hello Canary, I can see what you're saying - but because they are only guidelines and the law isn't clear, it takes benchmark cases to interpret the law, which has been done with a well known case of Pamela Cochlan. She has low level needs, according to the DST and is a benchmark case for this reason of applying it to CHC. I suspect this is rarely done in practice and most people give up as they haven't the funds to go forward with legal representation.

 

[padmag]

The A, B, C list is only the preliminary checklist. The full assessment is called the Decision Support Tool and it categorises needs as None, Low, Moderate, High, Severe or Priority. You need as many Priority and Severe needs as you can (detailed info is in the documents in the below link), and seeing that only 4 out of the 12 categories even go up to Priority and 3 only go up to High, you can see how difficult it is to get the funding.

https://www.gov.uk/government/publi...inuing-healthcare-and-nhs-funded-nursing-care

View attachment 60308

Hello Beate, If the tool was to make a decision then, yes I can understand why it is nearly impossible, but the department of Health says :-

Not a decision making tool, not to make a decision. Mechanistically not a question of counting up the tick boxes.
Not a substitute for professional judgement, should be used for collating information in an organised way so we have a consistent record of what a person needs
Cannot use DST to have an outcome that conflicts with what the law says because what statute/courts say is law made by parliament so guidance cannot trump that.

 

[padmag]

If you think of continuing health care as continuing hospital care things may become clearer.

CHC was set up to cover the position where a person was in hospital with a condition that could not be catered for by standard community health provisions.

If the person's condition did not require the infrastructure of a hospital and only needed specific specialist care this care could economically be funded by the NHS and provided outside of the hospital.

Hence the reason why CHC assessment only considers medical problems.

Hello Nitram, yes it makes sense but the law is the law and it conflicts with what you are saying.

 

[Beate]

Hello Beate, If the tool was to make a decision then, yes I can understand why it is nearly impossible, but the department of Health says :-

Not a decision making tool, not to make a decision. Mechanistically not a question of counting up the tick boxes.
Not a substitute for professional judgement, should be used for collating information in an organised way so we have a consistent record of what a person needs
Cannot use DST to have an outcome that conflicts with what the law says because what statute/courts say is law made by parliament so guidance cannot trump that.

Which is why it's called a Decision Support Tool and not a Decision Making Tool. I completely agree that this funding should be easier to get and that the fact that carers are too busy and tired to go into a lengthy court battle is unfairly exploited by an NHS that is desperate to save money, but ask yourself if it's really worth it to spend all your energy on this. It would be fantastic if you succeeded, but at the expense of your own health and sanity it might be too large a price to pay.

 

[canary]

Do you think we dont know about Pamela Cochlan?
I agree that dementia should be reclassified as a health need, but unfortunately it is not. Your arguments will cut no ice with the assessors, Im afraid.

 

[padmag]

Which is why it's called a Decision Support Tool and not a Decision Making Tool. I completely agree that this funding should be easier to get and that the fact that carers are too busy and tired to go into a lengthy court battle is unfairly exploited by an NHS that is desperate to save money, but ask yourself if it's really worth it to spend all your energy on this. It would be fantastic if you succeeded, but at the expense of your own health and sanity it might be too large a price to pay.

Yes you're right. I know in practice it won't happen, but being me I like to read up about these issues especially as Mum's funds will run out very quickly ( care home about 70k per year rising at 5% per year) and I worry for her, not sure she will be able to stay where she is. I don't have much time or energy and live one day at a time with the challenges I have, we all have on here. Now I've informed myself, at least i will go through the box ticking process, then I will probably call it a day, not a lot of fight left in me. Thanks Beate

 

[padmag]

Do you think we dont know about Pamela Cochlan?
I agree that dementia should be reclassified as a health need, but unfortunately it is not. Your arguments will cut no ice with the assessors, Im afraid.

Sorry I have only just read about the Cochlan benchmark case - from all I have read I doubt whether we will get past the checklist stage. Thanks for your response Canary.

 

[canary]

I think all of us who have a PWD living in residential care have been horrified about how expensive it is. Have you asked this home about how much the top-ups will be once her funding runs out?
You said your mum is in a Nursing home - did you actually mean a nursing home as opposed to a care home? Nursing homes are usually more expensive than care homes and if your mums needs can be met in a care home this may make her funds go further and there will be less top-up fees. There are some care homes that will accept the LA funding and not all of them are horrible! The most expensive places are not always the best. The care home mum was in would have accepted the LA funding once her own funds ran out (she passed away before this happened) and I was very happy with the care mum received. Mum too was happy and thrived there. Perhaps now is the time to think about a permanent place for her.

 

[padmag]

I think all of us who have a PWD living in residential care have been horrified about how expensive it is. Have you asked this home about how much the top-ups will be once her funding runs out?
You said your mum is in a Nursing home - did you actually mean a nursing home as opposed to a care home? Nursing homes are usually more expensive than care homes and if your mums needs can be met in a care home this may make her funds go further and there will be less top-up fees. There are some care homes that will accept the LA funding and not all of them are horrible! The most expensive places are not always the best. The care home mum was in would have accepted the LA funding once her own funds ran out (she passed away before this happened) and I was very happy with the care mum received. Mum too was happy and thrived there. Perhaps now is the time to think about a permanent place for her.

Yes she is in a nursing home, not one of my choice, it was my sister who chose it. It is a good one, I have seen dozens in my quest to find somewhere for respite/ long term care for Richard, so I can see it is a good place for Mum to be - there is another one down the road, part of the same group, also nursing trying to build up their reputation and I like that one, it is around £800 p.w.My sister is Mum's main carer as I am a carer for my partner and live some distance from Mum, whereas sister lives in the same village. We will just have to wait and see, I have a feeling that when Mum's funds run out they will want a top up - but this can't be done from Mum's assets when she reaches the lower limit, and I can't provide one, neither can my sister I don't think.
Thanks Canary for your suggestions, always good to hear what you all think on talking point as it is honest and open.