CHC (Continuing Healthcare) support thread

[clonkel]

Hi, I am new here so apologies if I have the wrong board.
My MiL has Alzheimer's BPSD and has recently left hospital for a specialist care home which is being funded by the ICB under the discharge to assess. The assessment itself should be in 4 weeks to allow her to settle but the ICB said that they have waived the checklist process due to mums history as she would have received a positive. This means that the DST will be in 2-weeks. I found this out last Friday. I have been reading everything I can on the DST and working on the reasons why she should remain with CHC funding. During this process, over the last 3 days, I have hit a number of points that are causing us all some concern regarding the medication she has been placed on.
The thrust of my argument is that her violent behaviour, which was extreme in the care home where she only lasted 10 nights, and on the ward where she lasted 1 night before DoLS and 24 one to one care, reduced when she was placed onto Risperidone. The ICB have already indicated that mum will be assessed under what they call 'her managed condition'. What we found is that the discharge says review Risperidone after 3 months (0.25mg BD). NICE guidelines say 6-weeks and Dorset CCG (older article) says not to administer to someone who has had blood clots. Mum had a TIA in 2003. She already has constipation, headaches, stomach aches and now diarrhea. She is also suffering from Hyponatremia which is only being managed by restricted fluids. She has a brand new GP as she is out of area with the specialist home. The question we are asking is that if she is taken off Risperidone, given she may not have even been placed on it, if she is not in a specialist home then how can a 'standard' home cope. Also if she does remain on it she has an ongoing health need regarding side effects.
I would be grateful for any comments on the argument we are putting forward for her to remain with the specialist home that has around the clock nursing. Everyday so far mum has seen a nurse and also had a doctors visit, all in the first week.
Thank you

 

[Ruth32]

Hi, I am new here so apologies if I have the wrong board.
My MiL has Alzheimer's BPSD and has recently left hospital for a specialist care home which is being funded by the ICB under the discharge to assess. The assessment itself should be in 4 weeks to allow her to settle but the ICB said that they have waived the checklist process due to mums history as she would have received a positive. This means that the DST will be in 2-weeks. I found this out last Friday. I have been reading everything I can on the DST and working on the reasons why she should remain with CHC funding. During this process, over the last 3 days, I have hit a number of points that are causing us all some concern regarding the medication she has been placed on.
The thrust of my argument is that her violent behaviour, which was extreme in the care home where she only lasted 10 nights, and on the ward where she lasted 1 night before DoLS and 24 one to one care, reduced when she was placed onto Risperidone. The ICB have already indicated that mum will be assessed under what they call 'her managed condition'. What we found is that the discharge says review Risperidone after 3 months (0.25mg BD). NICE guidelines say 6-weeks and Dorset CCG (older article) says not to administer to someone who has had blood clots. Mum had a TIA in 2003. She already has constipation, headaches, stomach aches and now diarrhea. She is also suffering from Hyponatremia which is only being managed by restricted fluids. She has a brand new GP as she is out of area with the specialist home. The question we are asking is that if she is taken off Risperidone, given she may not have even been placed on it, if she is not in a specialist home then how can a 'standard' home cope. Also if she does remain on it she has an ongoing health need regarding side effects.
I would be grateful for any comments on the argument we are putting forward for her to remain with the specialist home that has around the clock nursing. Everyday so far mum has seen a nurse and also had a doctors visit, all in the first week.
Thank you

Hopefully someone will come along with more experience about Risperidone than I am, but re the CHC, if you trawl through the National Framework for CHC there is a section about Managed needs, stating if a need is managed it is still a need, might not be the exact wording, but you should get the idea.

I had the same thing with mum being on the D2A pathway and getting assessed then, she did win the CHC funding, but unfortunately 3 months on after the review, they have withdrawn it. So working on an appeal, and the managed needs is going to be part of this.

Good luck.

 

[clonkel]

@Ruth32 thank you. Yes I agree that what the ICB said does not match the National Framework. I did not know what D2A was so after Google I can see the discharge to assess process which mum is part of. Thank you for that its really helpful

 

[Johnson120]

Hi, new to this site. Hello all.
I am looking for some help about CHC. my mum in law is 84 years old. She was removed from her home (she lived with my sister in law and brother in law) in Feb 2020, deprived of liberty and assessed as lacking capacity and placed in a care home by social services. We have been battling for a NHS CHC assessment and finally had initial assessment today. We were told that she had one last July, I have been 6 months asking if she has ever had such an assessment and if so for a copy of the report. No response. The Nurse doing the assessment today said he will send a copay of the report to us but in his opinion her needs are Social Care related only and well managed by the care home and staff. I dispute his interpretation.
she has vascular dementia, hypothyroidism , delirium and Alzheimer’s disease. Weight is 47.3kg down from 47.8kg 4 weeks ago BMI score 18. Skin assessment score was 26 in July 2022 now 31. She can not weight bear, requires full body hoist and 2 staff with a slide mat for any position changes. She has a bed with cot sides. Double incontinence, requires position change and continence checks every 3-4hours. She also suffers periods of constipation. She can not self feed and has to be fed and encouraged to eat and swallow. she is on a soft fortified diet and 3 x fortified drinks daily. She will, only drink if given her beaker and encouraged to do so. She can not communicate other than by odd sounds and words. She has no understanding of her environment and her needs have to be predicted. She has to be encouraged and assisted to take medication. Some medication has been stopped as she is unable to swallow large, hard tablet. She often goes from laughing to crying and is unable to communicate why. She appears to see things that are not there and is constantly reaching out and pointing at things invisible to the rest of us. Her communication is totally unreliable and she is unable to express herself. She is unable to participate in activities and has no understanding of what is going on around her. When taken to the lounge (very occasionally and for short periods of time) she has to sit in a recliner or she slides out of the chair. Many days she appears to be sleeping most of the day but it is difficult to know for sure as she seems to struggle to keep her eyes open. It’s difficult to determine her level of hearing as she does not respond to stimulation the majority of the time. The Assessors seemed to imply that my expectations were unfounded and that I did not understand the difference between social needs and health needs. I have read the National Framework and I believe she should at least be given a full assessment. Can anyone here help, guide or share similar experiences? I am at my wits end. She has hardly any money left as the local authority have had everything except approx £1000. She is charged just under £1300 monthly which leaves her about £85 a month and does not have any property or assets. I am at my wits end and everywhere I turn for help I get shoved to another office or department who are equally unhelpful. Thank you in advance and sorry my first post is so long.

 

[northumbrian_k]

Hi @Johnson120 and welcome to Dementia Talking Point. I am afraid that I don't know anything about CHC but I know that others do so hope that someone will be able to help with your specific issue.

 

[Louise7]

Hello @Johnson120 and welcome. No need to apologise for a lengthy post, and as you are discovering, the CHC assessment process is stressful and difficult to navigate. From what you have said your mother in law has had the initial - CHC checklist - assessment. Did you attend the assessment and has the assessor already stated that the criteria for a full assessment has not been met? If so they should provide you with a copy of the completed checklist along with relevant supporting documents such as care home notes, GP/Health records etc. As your mother in law has been in the care home for over 3 years hopefully the staff were able to provide a good overview of her care needs and advise you on whether they think she would qualify for full CHC. You should also be provided with a written decision and details of how you can appeal if you disagree with this. With regards to the paperwork relating to last year's assessment, if anyone has health & welfare power of attorney for your mother in law they can submit a Subject Access Request and this should be responded to within 28 days. Others here with more knowledge of the CHC appeals process will hopefully be able to provide more advice if you decide to go down that route. Is your mother in law in a nursing home? If so she may possibly qualify for Funded Nursing Care (FNC) even if she does not qualify for full CHC.

With regards to your mother in law's current funding position, has she had a financial assessment from the local authority? It is usual for the local authority to take into account someone's income when their savings/capital drop below £14,250 but she should still be left with a 'personal expenses allowance' of £25.65 weekly to pay for things like toiletries, clothes, hair dresser, chiropody etc so it isn't clear why the local authority have taken everything apart from approx £1,000 and your mother in law is left with £85 monthly. Does she pay the £1300 monthly charge from her income? The fact sheet below explains the position regarding care home funding in England so that you can check that her care home funding situation is correct, but if she lives elsewhere let us know as the position will be different. Hope this helps.

Paying for care home fees in England

Paying for a care home can be expensive, but you may be eligible to financial help from your local authority. In some cases, you might be able to get financial support from the NHS.

www.alzheimers.org.uk

 

[zomum]

Hello everyone - just a quick question - what happens after a CHC review? My father just had first 3 month review and I'm not sure what happens next. Do they get in touch about whether he will continue to receive funding? Many thanks.

 

[Dave63]

Hi @Johnson120
Is the 'assessment' you mention a full CHC assessment with a multi disciplinary team in attendance? or is it the initial checklist assessment? Who was the nurse doing the assessment? Was it the homes nurse or a CHC nurse assessor?

The checklist is not a thorough assessment in itself, it's basically a screening tool to assess possible eligibilty for having a full MDT assessment. Going by what you have written about your MIL's needs I would have thought a positive checklist was a given. However, as @Louise7 has pointed out, the chc process is not an easy road to navigate.

NHS Continuing Healthcare Checklist assessment - 11 common mistakes - Care to be Different

If you've had problems getting through the NHS Continuing Healthcare Checklist assessment - check out these 11 common mistakes

caretobedifferent.co.uk

What are the NHS Continuing Healthcare assessment guidelines

You may be wondering what Continuing Healthcare assessment guidelines should be followed when your relative is assessed. We've highlighted the main ones...

caretobedifferent.co.uk

NHS Continuing Healthcare assessments | Care To Be Different

NHS Continuing Healthcare assessments – and the legal limit for local authority care. One vital question to ask the social worker in an assessment...

caretobedifferent.co.uk

 

[Dave63]

Hello everyone - just a quick question - what happens after a CHC review? My father just had first 3 month review and I'm not sure what happens next. Do they get in touch about whether he will continue to receive funding? Many thanks.

Hi @zomum

@Ruth32 has just gone through a review recently

Your CHC Appeals support thread

@Ruth32 Not quite, it looks as though the ICB and SSD have come to an agreement, that the ICB will not formally request a social worker's attendance. The National Framework makes clear that if an ICB actually requests a social worker then the SSD must provide one. It's that way round. I suspect...

forum.alzheimers.org.uk

 

[Ruth32]

Hello everyone - just a quick question - what happens after a CHC review? My father just had first 3 month review and I'm not sure what happens next. Do they get in touch about whether he will continue to receive funding? Many thanks.

Hi @zomum

As @Dave63 mentioned, I have recently been through this stage with my mum. What the CHC assessor told me was I would hear the decision with 1-2weeks. I actually didn't hear anything for 3 weeks and then it was from Social Services, followed by my mums Care home and lastly a letter arrived from the CHC.

If they pull the CHC Funding, which they sadly did with my mum. It gave us a date when this would stop which was a month from when the letter is written. If they keep the CHC funding in place, I presume this continues as previously arranged with another review at a later date. I have read this is 1 year later, but I don't know that for definite.

If they do stop the CHC your father might be entitled to Nurse funding instead. One thing I have found with mum's care home is that they don't deduct this from their fees. But that is a different subject totally and might be different with other care homes.

Hope this helps

Ruth

 

[zomum]

Hi @zomum

As @Dave63 mentioned, I have recently been through this stage with my mum. What the CHC assessor told me was I would hear the decision with 1-2weeks. I actually didn't hear anything for 3 weeks and then it was from Social Services, followed by my mums Care home and lastly a letter arrived from the CHC.

If they pull the CHC Funding, which they sadly did with my mum. It gave us a date when this would stop which was a month from when the letter is written. If they keep the CHC funding in place, I presume this continues as previously arranged with another review at a later date. I have read this is 1 year later, but I don't know that for definite.

If they do stop the CHC your father might be entitled to Nurse funding instead. One thing I have found with mum's care home is that they don't deduct this from their fees. But that is a different subject totally and might be different with other care homes.

Hope this helps

Ruth

Hello Ruth (and Dave!)

Thank you so much for your response - that's very helpful.
I'm so sorry to hear your mum lost her funding. This is such a terrible system.
I am fearing the worst for Dad - care home made an absolute mess of the review meeting (which might give me grounds to appeal).
Preparing for the worst.

Many thanks

Zomum.

 

[Dave63]

Hello Ruth (and Dave!)

Thank you so much for your response - that's very helpful.
I'm so sorry to hear your mum lost her funding. This is such a terrible system.
I am fearing the worst for Dad - care home made an absolute mess of the review meeting (which might give me grounds to appeal).
Preparing for the worst.

Many thanks

Zomum.

I have no experience with reviews as we've never got that far. We're still at the appeal stage for two MDT's done 4 weeks apart (long story) which were done over 18 months ago! I've seen public enquiries into politicians parties move at a faster pace

The guidance seems to suggest that a review should only be used to ensure the care package in place is still sufficient for the persons needs. If it is apparent there is a significant change to a persons needs only then should another full MDT be arranged.

Make sure you have a copy of the original DST so you can benchmark any changes to domains that the review may suggest have changed significantly.

 

[zomum]

Hello everyone - I'd really welcome some opinions on this.

I've just heard from the CHC nurse/assessor after the 3 month review that she is requesting that my father has another full assessment because his needs have changed. (They haven't.)
I told her I was confused as I thought that if you got beyond the 3 month review then Dad would be reviewed annually. It's only four months since we went through the full assessment. He's dying of lung cancer and advanced mixed dementia.
Surely his primary health needs were established at the full assessment when they approved full funding?

 

[Ruth32]

Hello everyone - I'd really welcome some opinions on this.

I've just heard from the CHC nurse/assessor after the 3 month review that she is requesting that my father has another full assessment because his needs have changed. (They haven't.)
I told her I was confused as I thought that if you got beyond the 3 month review then Dad would be reviewed annually. It's only four months since we went through the full assessment. He's dying of lung cancer and advanced mixed dementia.
Surely his primary health needs were established at the full assessment when they approved full funding?

Sorry hear that. I've have just been through the exact same thing, with the same comment - needs have changed.
We had the full assessment after the review and they withdrew the chc funding. I am in the process of appealing this as like you I don't think anything has changed for my mum accept she is in a place which is experienced at dealing with advanced dementia and challenging behaviours.
Re the primary health need, I have searched and searched for a clear definition of this and there doesn't seem to be one.
All I can advise is to make sure you are at the full assessment and be prepared for it and also be prepared to fight your fathers corner. Read the National Framework for CHC funding and you will be able to pick up what should happen. In my mothers case a lot of things didn't happen how they should. Also have the original DST with you, so you can clearly ask what needs have changed and compare it to that. Our assessor said she would bring it and didn't.

All the best.

 

[Dave63]

Also have the original DST with you, so you can clearly ask what needs have changed and compare it to that. Our assessor said she would bring it and didn't.

Makes you wonder how on earth they can determine a need has changed if they don't bring the original DST to reference during the assessment. The fact she didn't bring it shows a lack of preparation on her part to ensure a fair and unbiased assessment. The cynic in me makes me think an outcome has been decided before the assessment even takes place.

 

[Dave63]

Hello everyone - I'd really welcome some opinions on this.

I've just heard from the CHC nurse/assessor after the 3 month review that she is requesting that my father has another full assessment because his needs have changed. (They haven't.)
I told her I was confused as I thought that if you got beyond the 3 month review then Dad would be reviewed annually. It's only four months since we went through the full assessment. He's dying of lung cancer and advanced mixed dementia.
Surely his primary health needs were established at the full assessment when they approved full funding?

Are you told which domains have changed and in what way they have changed?

 

[zomum]

Hello Ruth and Dave. Thank you both for your replies.
She has told me the 3 areas where needs have changed but not how they've changed. It's absurd. I'm hoping that when it comes to the full assessment that it will become clear that his needs are the same. The nursing and care staff aren't great at record keeping which is obviously not the same as Dad's needs changing.
Dad's nutritional needs may have stabilised but that's only because the nursing home works so hard to stop him losing weight. It's very strange for the success of a placement to undermine the case for funding. Dad's only been there 4 weeks.
I'll give it a good shot at the assessment but I'm resigned to him losing the funding.
I've just heard from a friend whose father was given fast track EOL that the money is being stopped because, basically, he isn't dying quickly enough.
Good luck with it all. It is a horrible system.

 

[kassy76]

Hello, my Dad moved into residential care in January after me bring his full time carer at home.
He has now been served a 28 day notice by the care home as they say they cannot meet his needs. They say his behaviour is too challenging. They also said that they think there should be a CHC assessment.
The SW has now picked this up and is starting the process.
I’d never heard of CHC before but now I’ve googled some information. I think my Dad would score on the different domains given what the home is saying.
I basically want to make sure the assessment is done properly and my Dad gets what he deserves ( unfortunately I don’t have much faith in the SW)
Any advice or help gratefully received.

 

[Dave63]

Hello, my Dad moved into residential care in January after me bring his full time carer at home.
He has now been served a 28 day notice by the care home as they say they cannot meet his needs. They say his behaviour is too challenging. They also said that they think there should be a CHC assessment.
The SW has now picked this up and is starting the process.
I’d never heard of CHC before but now I’ve googled some information. I think my Dad would score on the different domains given what the home is saying.
I basically want to make sure the assessment is done properly and my Dad gets what he deserves ( unfortunately I don’t have much faith in the SW)
Any advice or help gratefully received.

Hi Kassy,

Couple of links further up this thread regarding the CHC process which may help.

CHC (Continuing Healthcare) support thread

Hi, I am new here so apologies if I have the wrong board. My MiL has Alzheimer's BPSD and has recently left hospital for a specialist care home which is being funded by the ICB under the discharge to assess. The assessment itself should be in 4 weeks to allow her to settle but the ICB said that...

forum.alzheimers.org.uk

Just out of interest, was the current care home chosen by yourself or the SW?

 

[Tsarina]

Hi - my husband has been CHC funded since 2020. The annual review in February seemed to go ok and the assessor said there were no significant change so his funding should continue. However I chased it up for the outcome and was told the report had gone back to the nurse for clarification. I don’t know what that means and there is no info on reviews online. I’m not angry, just defeated and know I can’t fight this.