CHC (Continuing Healthcare) support thread

[Dave63]

Hi @luggy

the ICB stated that mum must go to a nursing home and that they would make the necessary arrangements.

CHC funding is not dependent on setting. It can be awarded to someone who is at home, in residential care or a nursing home. I'm assuming if your mum has been fast tracked they feel her needs would be better met in nursing rather than residential care?

"the NHS will only pay towards your assessed care needs; it will not ordinarily fund a resident's choice to live in an attractive, comfortable and well-resourced home, such as those run by ******** The difference between what the care home of your choice charges and the amount the ICB will pay.........remains payable by you as it is regarded as a non-refundable lifestyle choice to live in such a home."

The NHS is responsible for covering the full cost of a persons care including accommodation and there is no cap. If that is the only home willing to accept your mum then the responsibility to meet that cost is the NHS's not you or your mum.

Top up's to CHC funding are unlawful. There was a case brought against Care UK for doing this and it cost them over £1m to refund those affected. There are some homes who try and get around this by dressing it up as payment for additional services beyond those provided for a persons essential care. In the quote from the brochure it strikes me that's exactly what they are doing. In what universe do they think moving into a nursing home with possibly complex health needs is a ******* 'lifestyle choice'. A home being attractive, comfortable and well resourced should be expected, not something you have to pay extra for.

Paying Unfair Top-Up Fees? You are not alone - read this now

Paying Unfair Top-Up Fees? Top-up fees are back in the public domain again as the Competition and Markets Authority (CMA) is reported to

caretobedifferent.co.uk

Is There An Upper Limit To Amount NHS Continuing Healthcare Funding Will Cover? • Continuing Healthcare

The untruths, misunderstanding and myths surrounding NHS continuing healthcare continue to astound us and cause distress to our clients, here we clarify a recent funding related query.

continuing-healthcare.co.uk

 

[luggy]

Hi @luggy

CHC funding is not dependent on setting. It can be awarded to someone who is at home, in residential care or a nursing home. I'm assuming if your mum has been fast tracked they feel her needs would be better met in nursing rather than residential care?


The NHS is responsible for covering the full cost of a persons care including accommodation and there is no cap. If that is the only home willing to accept your mum then the responsibility to meet that cost is the NHS's not you or your mum.

Top up's to CHC funding are unlawful. There was a case brought against Care UK for doing this and it cost them over £1m to refund those affected. There are some homes who try and get around this by dressing it up as payment for additional services beyond those provided for a persons essential care. In the quote from the brochure it strikes me that's exactly what they are doing. In what universe do they think moving into a nursing home with possibly complex health needs is a ******* 'lifestyle choice'. A home being attractive, comfortable and well resourced should be expected, not something you have to pay extra for.

Paying Unfair Top-Up Fees? You are not alone - read this now

Paying Unfair Top-Up Fees? Top-up fees are back in the public domain again as the Competition and Markets Authority (CMA) is reported to

caretobedifferent.co.uk

Is There An Upper Limit To Amount NHS Continuing Healthcare Funding Will Cover? • Continuing Healthcare

The untruths, misunderstanding and myths surrounding NHS continuing healthcare continue to astound us and cause distress to our clients, here we clarify a recent funding related query.

continuing-healthcare.co.uk

Thanks @Dave63 for your reassuring reply, which is as I understood the system. I was a bit taken aback by the wording in the brochure which made me doubt myself.

Yes, as mum was fast tracked, the ICB were insistent that she needed to go into a nursing home and, in any event, there's no doubt that mum's needs are complex and require nursing. Mum will not be making use of any of the 'lifestyle choices' on offer at the home, as she is bedridden in the last stages of dementia.

Due to the lack of nursing homes in my area, this particular home is much further away from where I live than is ideal, and from the home which she has to leave. There's no advantage to mum or me that she has been relocated there (apart from the the posh visitors loo and the fact that there is posh coffee and cake available!)

Oh well, it looks like I'll have another battle to contend with at some point.

 

[jimkd]

I didn't find the checklist that helpful for my dad, as i found the wording problematic. Someone could apply the wording literally and precisely like a lawyer and come up with a completely different interpretation and score from someone just taking an 'in the spirit' of the text view. I also found the process of evaluation a bit sketchy, My understanding was that it would then go through an evaluation after the assessment to come up with a decision. However the NHS and social worker just agreed there and then at the assessment what the outcome would be. Whilst my dad might get a 'severe' rating going by the exact checklist wording the assessors would just say they've seen a lot worse than my dad and mark him down. Overall, I did think the outcome we got was fair, but perhaps not exactly what the process should have come out with if we took the 'lawyer' view

 

[Dave63]

Someone could apply the wording literally and precisely like a lawyer and come up with a completely different interpretation and score from someone just taking an 'in the spirit' of the text view.

I think this is one of the main issues with the assessment process. A different outcome can depend on who is assessing on a particular day, what part of the country you are in and what a particular ICB's agenda is.

My understanding was that it would then go through an evaluation after the assessment to come up with a decision.

That's correct. After the assessment it's usual for the assessor and the social worker to hold a 'private council' and decide on a recommendation as to eligibility based on the evidence and how it impacts the four key indicators. That recommendation is then forwarded to a ratification panel who are supposed to approve the recommendation unless there is significant reason not to. If the panel believe there is not enough evidence to ratify an eligible decision they are obliged to go back to the assessor and ask for further evidence to justify their recommendation.

Whilst my dad might get a 'severe' rating going by the exact checklist wording the assessors would just say they've seen a lot worse than my dad and mark him down.

If this is what you were told then that is a significant failure of process. It's immaterial how another person has been evaluated, the only thing they should be looking at is how your dads needs are being impacted within a particular domain, what evidence there is to prove that impact and where it fits within the low to severe table. If there is disagreement about how he scores then it should be clearly noted in the DST by the assessor. I would also suggest that if the social worker and assessor have made a decision immediately then they have failed to properly consider the four key indicators and how they impact collectively across all domains. This is the most important part of the assessment and is crucial to proving a primary health need. Just on this aspect alone I would consider appealing their decision.

 

[Soli99]

Could someone let me know when I should be looking in to CHC. My Mom is still living at home and I (son) am her sole carer at the moment, she also visits a day care centre once a week which she enjoys. My mother has some savings and a SIPP but most of it came from my father who recently died. I'm wondering if I should be looking in to CHC before it reaches the point when I have to start looking at care homes or well before that. I am also awaiting a carers assessment.

Thanks for any info.

 

[Chizz]

Hi @Soli99
What area are you in?
As you are no doubt aware, CHC is all about the care needs of the PWD.
Does you mom need medical and/or nursing care and treatment now for her condition(s)? Only if she does might CHC be relevant, and if she doesn't at present need medical treatments then CHC will not apply.
CHC is not a "stage" a PWD goes through

There's a lot of info on the Alz's Soc website for you to read through that will help.

 

[Soli99]

Hi Chizz thanks for the reply. At the moment no medical need is required other than me making sure she has her tablets which is often a complete nightmare getting her to take them. As for nursing need, nothing at the moment but I am getting more concerned about her not really looking after herself even when I'm there trying to help. I'm fairly sure when she says she has washed she usually hasn't and as for cleaning teeth I try and get her to do that but she just argues about it. I also have to clean the toilet and floor a several times a week. She keeps wearing the same clothes as well and won't let me clean them so I have to grab them when she isn't looking and put them in the wash. Good knows what would happen if I wasn't around.

 

[sdmhred]

Hello! It’s sounds like a social care assessment might be the next best step. Your local authority social care team carry those out and then decide if carers etc are needed. If your mum has more then £23k of savings however you can start these yourself if you have power of attorney for her.

it sounds like she needs some more help…or you do ,,,

 

[Dave63]

Hi @Soli99, I agree with @sdmhred that your mum probably needs a care needs assessment. As well as highlighting her specific needs it would also give an idea as to whether an initial chc checklist assessment would be appropriate. From what you have described it doesn't sound like your mum is at a level which would warrant a checklist assessment but the care needs assessment would clarify that and also identify what support she should be getting.

The Care Needs Assessment Explained | Age UK

You will need to complete the Care Needs Assessment in order to be eligible for support from social services. Find out more from Age UK.

www.ageuk.org.uk

If you haven't done so already it may be worth checking what support is available for you as your mums sole carer.

Carer's Assessment - Advice and help for Carers | Age UK

If you care for someone you may be eligible for support from your local council. To receive help, you need to have a carer's assessment. Find out more from Age UK.

www.ageuk.org.uk

 

[Soli99]

Hi Dave63 , sdmhred,

Thanks for the info. I contact the carers trust in Solihull and explained the situation and I'm going for a carers assessment tomorrow. The lady I spoke to mentioned a care need assessment but said she would discuss it tomorrow and possibly contact social services on my behalf and my mother tends to listen in on all calls! God knows how she will respond to having one as she is says there is nothing wrong with her.

 

[try again]

Hi Dave63 , sdmhred,

Thanks for the info. I contact the carers trust in Solihull and explained the situation and I'm going for a carers assessment tomorrow. The lady I spoke to mentioned a care need assessment but said she would discuss it tomorrow and possibly contact social services on my behalf and my mother tends to listen in on all calls! God knows how she will respond to having one as she is says there is nothing wrong with her.

My mum was in a care home in coleshill and I needed to move her last month to a nursing home. Coleshill is under Solihull ss and I didn't find them very responsive. Get all the assistance you can!

 

[Soli99]

Yes I will thanks @try again . I had a carers assessment today, useful and they are sending me various bits of info. So I'll wait for that and decide what to do next. Oh also the council will make a payment to help with something, I mentioned the gym so I will get a payment to fund that.

 

[luggy]

Hello.

I'm looking for some advice and experiences on obtaining care home records for the purpose of a CHC full assessment (MDT).

I have a fair amount of experience with the CHC process and obtaining the necessary records (care, medical etc) to support the evidence required. However, mum moved to a different care home at the beginning of November and her Fast Track funding has been due for review for a couple of months. In anticipation of this, I asked the new care home if I could have access to mum's care records. I made this request on 7th December. The new care home were given a copy of my LPOA at the time mum became resident. The care home told me that they could not release mum's records without authorisation from the data protection team at head office.

After a couple of weeks, I asked for an update and was told that I also needed to provide my Driving Licence to prove my identity, which I did. Yesterday, I finally received a date from the ICB for the review - it's tomorrow and I'm unable to attend as I have an appointment for a hospital procedure. However, there's likely to be an MDT in a couple of weeks, so I contacted the care home today to ask for the records and it seems that nothing has been done and the release of the records has yet to be authorised by data protection.

In the meantime, I did ask the care home how they were getting on with my request, and was told that they were getting the records ready. It seems not.

It's been 6 weeks since I made the request, which doesn't seem acceptable. I've also had to jump through more hoops than I've previously experienced. Mum's old care home just photocopied whatever I asked for and I had them within a few days. Mum's GP and hospital records have also arrived very promptly following a Subject Access Request.

If I don't get the care records in time for me to read them before the MDT, can I ask that it's delayed until I have received them?

Any thoughts, experiences, suggestions would be appreciated. Thank you.

 

[Dave63]

Hi @luggy, you'll have to refresh my memory, it's Tuesday and I'm always terminally stupid on Tuesdays.
You say your mums Fast Track funding is due for review, is this fast track CHC funding? Also, why is it likely there'll be an MDT? An MDT shouldn't be arranged unless there is a significant change in needs and this can only be determined during the review.

When your mum got her fast track funding was there paperwork involved which detailed her levels of need? If so, could you use that as the baseline during the review to show there has been no change? During my mums review I used the original DST as the baseline, although it turned out I need not have worried as the assessor was really good (they do exist )

Sorry if I have the wrong end of the stick.

 

[luggy]

Hi @luggy, you'll have to refresh my memory, it's Tuesday and I'm always terminally stupid on Tuesdays.
You say your mums Fast Track funding is due for review, is this fast track CHC funding? Also, why is it likely there'll be an MDT? An MDT shouldn't be arranged unless there is a significant change in needs and this can only be determined during the review.

When your mum got her fast track funding was there paperwork involved which detailed her levels of need? If so, could you use that as the baseline during the review to show there has been no change? During my mums review I used the original DST as the baseline, although it turned out I need not have worried as the assessor was really good (they do exist )

Sorry if I have the wrong end of the stick.

Hi @Dave63 I'm terminally stupid everyday at the moment. My head is about to spin off my neck lately with everything I have on my plate.

This isn't anything to do with the appeal. At the end of last August, mum was Fast Tracked for CHC funding because she was rapidly declining and everyone thought that she was about to......pass away. I requested the Fast Track process and it was approved. I didn't get any paperwork from the ICB - just a phone call to let me know that the referral had been accepted. (I did get a copy of the referral which was made by the District Nurse, which is an extremely condensed version of the DST).

I was told that the Fast Track funding would be reviewed after 3 months - it's been nearly 5 months for some reason, but that was fine by me. The assessor doing the review phoned me yesterday to tell me that she is doing the review tomorrow, but I can't attend as I have to go to hospital for a procedure.

Obviously, mum has rallied a bit (again) and she is no longer in imminent danger of dying, which is what Fast Track is all about.....isn't it? Anyway, because of this, the assessor told me that it was likely that the review would trigger another MDT. Mum's care needs haven't changed since her referral for Fast Track, apart from that she has started eating again, albeit not very much. She has also quietened down a bit due to medication changes, but we know all about managed needs still being needs, and they are still maintaining behavioural charts.

So, around about the same time that the LRM for the separate issue of the appeal has been rescheduled (1st Feb), I will also have the added bonus of having another MDT to contend with. I anticipated that this MDT would probably happen some time ago - 6 weeks to be precise, which is when I requested the care home records, which have yet to materialise.

I hope that makes sense?

 

[Dave63]

Fast track review, LRM and an MDT..... that's more fun than one person could possibly stand!!

Obviously, mum has rallied a bit (again) and she is no longer in imminent danger of dying, which is what Fast Track is all about.....isn't it? Anyway, because of this, the assessor told me that it was likely that the review would trigger another MDT.

I'm not that familiar with the fast track process but I do recall that there is no timeline constraint with regard to funding. If your mum has a terminal illness or receiving EOL care then using timeframes as a basis for reviewing eligibility wouldn't be inline with the guidance and I would be tempted to ask her to refer you to the section of the national framework which sets out what that timeframe is (there isn't one so she won't be able to).

Still not clear about the MDT. Are you saying the assessor is stating that mums fast track review will likely trigger an MDT? I might be wrong but I was under the impression that MDT assessments play no part in the fast track process. If your mums needs have not changed and they're making eligibilty decisions based on someone not passing away quick enough then that's surely a breach of process and the guidelines?

 

[luggy]

Fast track review, LRM and an MDT..... that's more fun than one person could possibly stand!!


I'm not that familiar with the fast track process but I do recall that there is no timeline constraint with regard to funding. If your mum has a terminal illness or receiving EOL care then using timeframes as a basis for reviewing eligibility wouldn't be inline with the guidance and I would be tempted to ask her to refer you to the section of the national framework which sets out what that timeframe is (there isn't one so she won't be able to).

Still not clear about the MDT. Are you saying the assessor is stating that mums fast track review will likely trigger an MDT? I might be wrong but I was under the impression that MDT assessments play no part in the fast track process. If your mums needs have not changed and they're making eligibilty decisions based on someone not passing away quick enough then that's surely a breach of process and the guidelines?

Morning @Dave63

Unfortunately, as with everything relating to CHC, the guidance is open to interpretation and the ICB's use this to their own advantage and work with their own locally applied criteria which is not consistent with other geographical areas. You're right, mum is in terminal decline, has been deemed to be EOL and has been found to have a primary health need. This ought to be enough to keep the Fast Track CHC funding in place. However, because mum has started eating again, she may no longer be considered to be 'rapidly deteriorating', and of course, the ICB will latch onto this.

It's about time that the guidance was made into legislation but it is what it is I'm afraid, and I'm not in a position to fight mum's corner at the review today. Giving insufficient notice for assessments etc is one of the tactics our ICB likes to play - 2 days notice for this review, 1 days notice for mum's last MDT, 1 days notice for a previous review and the LRM was cancelled on the day it was meant to take place.

Anyway, the point of my original post was my having to wait 6 weeks for mum's care home to supply me with care records (I still haven't received them) and the hoops I've had to jump through in the process. I was under the impression that a care home resident can view their records at any time, and if they don't have capacity, their LPOA has the same right? Why is it that every door you try to walk through within the NHS and Social Care system, it gets slammed in your face?

I think I'd better end it there, before I degenerate into rant mode.

 

[Dave63]

Morning @Dave63

Unfortunately, as with everything relating to CHC, the guidance is open to interpretation and the ICB's use this to their own advantage and work with their own locally applied criteria which is not consistent with other geographical areas. You're right, mum is in terminal decline, has been deemed to be EOL and has been found to have a primary health need. This ought to be enough to keep the Fast Track CHC funding in place. However, because mum has started eating again, she may no longer be considered to be 'rapidly deteriorating', and of course, the ICB will latch onto this.

It's about time that the guidance was made into legislation but it is what it is I'm afraid, and I'm not in a position to fight mum's corner at the review today. Giving insufficient notice for assessments etc is one of the tactics our ICB likes to play - 2 days notice for this review, 1 days notice for mum's last MDT, 1 days notice for a previous review and the LRM was cancelled on the day it was meant to take place.

Anyway, the point of my original post was my having to wait 6 weeks for mum's care home to supply me with care records (I still haven't received them) and the hoops I've had to jump through in the process. I was under the impression that a care home resident can view their records at any time, and if they don't have capacity, their LPOA has the same right? Why is it that every door you try to walk through within the NHS and Social Care system, it gets slammed in your face?

I think I'd better end it there, before I degenerate into rant mode.

Rant away @luggy. If ranting was an olympic event I would have won multiple golds during my 'events' with ICB

Can't help with the records side of things but I would have thought that if you have POA for Health and Welfare it's job done? Obviously not if your mums home is being unhelpful. Hope you get it sorted and hope everything goes well for you at hospital today.

 

[luggy]

MDT Update.

It's taken me 24 hours to get my head around yesterday's debacle. I'll try and be succinct, but where to start?

1. CHC Nurse Assessor had only asked the care home for 1 months worth of records dating back to her review on 15.1.24. A common tactic adopted during Covid, to speed up the process due to a backlog of assessments at that time. Many ICB's have not reverted back to the 3 month pre Covid best practice protocol.

2. Care home hadn't provided assessor with the behaviour charts she had requested. But wait, I had a months worth from December '23 clearly evidencing mum's high levels of distress, agitation and associated non-compliance for hours at a time, most days. Assessor wouldn't even look at them, as they were outside the month she was assessing, so I showed them to the SW instead.

3. Care home nurse announces that they do have some more recent charts, which she produces to the assessor and which corroborate the charts I had previously produced. Assessor gives them a cursory look, hums and hahs a bit, then announces that mum should be referred back to MHT and downgrades mum's Behaviour score from a High to a Moderate. SW was hovering, but opted to agree with assessor. Needless to say, I disagree. (Apart from that, the SW was fairly good).

4. Drugs - mum is already heavily sedated with various medications, but is still awake all night screaming. Therefore, meds are ineffective. Previously scored High. Not this time. Assessor requests that GP review mum's meds and recommends even more sedation. Announces that she cannot score this domain until mum's meds have been 'optimised'.

5. Other - mum's Waterlow score is 24, but she doesn't have pressure damage (yet), so assessor stated 'so, her skin is in good condition then?' Me, SW and care home nurse all shouted 'No!'

Result - as the assessor claimed that the Drugs domain could not be scored during the meeting, she announced that she and the SW would have to reconvene to score that domain after the GP's review of meds and MHT referral. I have insisted that I am to be present too. The decision is delayed until then.

It was such a shambles, that I'm of a mind to request that the whole MDT is done again. I'm still pondering and will take some legal advice as I don't want to upset the apple cart with regards to the outcome of an appeal for another MDT.

The only good thing about yesterday is that the funding will continue until a decision on ineligibility is confirmed.

 

[Snooze1]

MDT Update.

It's taken me 24 hours to get my head around yesterday's debacle. I'll try and be succinct, but where to start?

1. CHC Nurse Assessor had only asked the care home for 1 months worth of records dating back to her review on 15.1.24. A common tactic adopted during Covid, to speed up the process due to a backlog of assessments at that time. Many ICB's have not reverted back to the 3 month pre Covid best practice protocol.

2. Care home hadn't provided assessor with the behaviour charts she had requested. But wait, I had a months worth from December '23 clearly evidencing mum's high levels of distress, agitation and associated non-compliance for hours at a time, most days. Assessor wouldn't even look at them, as they were outside the month she was assessing, so I showed them to the SW instead.

3. Care home nurse announces that they do have some more recent charts, which she produces to the assessor and which corroborate the charts I had previously produced. Assessor gives them a cursory look, hums and hahs a bit, then announces that mum should be referred back to MHT and downgrades mum's Behaviour score from a High to a Moderate. SW was hovering, but opted to agree with assessor. Needless to say, I disagree. (Apart from that, the SW was fairly good).

4. Drugs - mum is already heavily sedated with various medications, but is still awake all night screaming. Therefore, meds are ineffective. Previously scored High. Not this time. Assessor requests that GP review mum's meds and recommends even more sedation. Announces that she cannot score this domain until mum's meds have been 'optimised'.

5. Other - mum's Waterlow score is 24, but she doesn't have pressure damage (yet), so assessor stated 'so, her skin is in good condition then?' Me, SW and care home nurse all shouted 'No!'

Result - as the assessor claimed that the Drugs domain could not be scored during the meeting, she announced that she and the SW would have to reconvene to score that domain after the GP's review of meds and MHT referral. I have insisted that I am to be present too. The decision is delayed until then.

It was such a shambles, that I'm of a mind to request that the whole MDT is done again. I'm still pondering and will take some legal advice as I don't want to upset the apple cart with regards to the outcome of an appeal for another MDT.

The only good thing about yesterday is that the funding will continue until a decision on ineligibility is confirmed.