FNC process - advice please!

[sdmhred]

Mums home asked me to sign as they start the process for applying for FNC which they think she is eligible for.

My query is how much to get involved.

my understanding is that she will have the CHC checklist which hopefully generates a CHC assessment. Would I automatically be included in that? We don’t expect CHC but I would fight for FNC. My understanding is that the assessment may lead to a no to CHC but a yes to FNC.

Have I understood the process correctly?

the home said they would let me know the outcome, but I query if I should be more proactive….but don’t want to give more work for myselF!

1] I don’t know how good they will be at the application - eg detail etc

2) they don’t know the extent of mums needs. They are meeting them so they haven’t seen her worst to document that. My understanding is a met need is still a need. I’ve seen the needs unmet so can detail them.

3) I would for my own professional growth like to see the process through as a learning experience

I want to work with the home so don’t want to come across as interfering or doubting them. My general approach is smiles and thanks all round …..so if I do have to complain about something they know I mean it and it I am not a ‘Complainer’.

im very happy with the care she is receiving but havent seen any of the paperwork etc to know what is being recorded and how.

what’s the best way to go forward???

 

[yoy]

I have no experience of these processess but my gut feeling is to be involved with anything which happens to my mum. You probably know your mum better than anyone, so I would want to be there to fight her corner as, if left to the "professionals", they may not convey the true extent of her needs (which I have had experience of).

 

[Dave63]

FNC is triggered via a CHC assesment. The qualified medical staff at the home will complete the checklist assessment which determines whether your mums needs meet the minimum criteria for recommending a full assessment. The bar is set quite low for the checklist to ensure it does not rule out borderline cases. It's scored A to C measuring increasing levels of need. If your mum meets the minimum criteria it is then sent on to the ICB for them to arrange a full CHC assessment. If the full assessment results in a not eligible decision then they can then award FNC if it is applicable.

Would I automatically be included in that?

Not necessarily, make sure the home is aware you want to be involved with the checklist assessment. Your mum has the right to have someone represent her views if she's not able to. They can't deny your involvement, it's a right.

My understanding is that the assessment may lead to a no to CHC but a yes to FNC.

It took us three years from trying to arrange the checklist to winning at appeal and if we had a pound for every time someone told us mum wouldn't get it we wouldn't have needed to fight for it. Nobody knows whether your mum is eligible for CHC until she is fully assessed and her true level of needs are determined.

I don’t know how good they will be at the application - eg detail etc

This is why it's important for you to be fully involved. I'm not a complainer either and tend to take the path of least resistance but I became quite hard-nosed during my time with the CHC process. If you let people, whether it be the home, social workers etc, do things on your behalf you're not going to know how well they are looking after your mums best interests. It may sound cynical but not all social workers are the gold standard and for some homes CHC is not as financially attractive as a self funder so some may not be as proactive with the process as others.

My understanding is a met need is still a need. I’ve seen the needs unmet so can detail them.

That's correct. In the National Framework it's described as a managed need and should only be assessed with a view to how the need would be impacted if the management of that need were to be reduced or removed completely.

It'll be more important later in the process but make sure the home has a proper care plan in place and that your mums records are kept up to date. This will be vital for proving the levels of need during a full assessment and was mentioned as the biggest reason for people not having their needs assessed properly due to the failure to record everything.

As I mentioned, it took us three years so it's not an overnight process. Every ICB is different so it may not be the norm for it to take that long but the pattern appears to be not to make it easy.

Link to the CHC checklist used for initial assessment:

https://assets.publishing.service.gov.uk/media/630399dae90e0729db4b59f9/NHS-Continuing-Healthcare-Checklist-guidance-2022.pdf

 

[sdmhred]

Thanks @Dave63, that’s really helpful. I think Ive grasped it so far.

so I assume at this stage it’s appropriate for me to send a friendly email to the deputy manager who is doing the process, thank her and ask that I am kindly kept involved. I’ve looked at the checklist a few times so I will send her a couple of extra bits of info she may not know.

How is the full CHC assessment carried out and by whom? Is it a paperwork exercise or a meeting etc?

Should I ask to be sent a copy of all paperwork, care plan etc ….and when???

thanks!

 

[Kevinl]

FNC or funded nursing care, rare as rocking horse poo, so I was told on here once, it exists and good luck in your quest to find it.
K

 

[Dave63]

so I assume at this stage it’s appropriate for me to send a friendly email to the deputy manager who is doing the process, thank her and ask that I am kindly kept involved. I’ve looked at the checklist a few times so I will send her a couple of extra bits of info she may not know.

Yes, absolutely. Make sure she is aware that you want to be present when the checklist is being completed so your input is considered when deciding on mums need levels. When we went through the checklist stage it was done by mums social worker via Teams (bit like Facetime) with both my sister and I and it took around an hour and a half to complete.

How is the full CHC assessment carried out and by whom? Is it a paperwork exercise or a meeting etc?

The full CHC assessment is carried out by the ICB and is made up of something called a MDT (Multi Disciplinary Team). This is headed by a CHC nurse assessor appointed by the ICB and can include anyone with current knowledge and involvement with your mums care. In ours it was the social worker, care home nurse and manager, mums community mental health nurse and my sister and I. The meeting was held via Teams with everyone providing evidence of mums needs and how it impacts on each domain. There are 12 domains discussed separately and everyone is given the opportunity to provide input on how the persons needs impact each domain. The scoring is different to the checklist and scores peoples needs from Low to Severe/Priority. Everything is recorded by the nurse assessor during the meeting in a form called a DST (Decision Support Tool). This form is used to determine the eligibility decision which is why I mentioned in my previous post about it being vital for the home to ensure a persons records are kept up to date so they can give a clear picture of the persons current needs. The time scale between checklist and full assessment can take many months as all records will be requested from the home, GP's etc, for use during the meeting.

Should I ask to be sent a copy of all paperwork, care plan etc ….and when???

No, it won't be required for the checklist and if it goes to a full MDT assessment everything record-wise will be requested by the ICB directly.

CHC CHECKLIST - What is it and how does it work?

What is the CHC CHECKLIST? If you have a relative with complex or challenging healthcare needs, they may be eligible for Funding...

caretobedifferent.co.uk

Preparing for the Multi-Disciplinary Team Assessment - Care to be Different

Once your relative passes the initial Checklist stage for NHS Continuing Healthcare, (CHC) you need to start preparing for the full assessment at a Multi-Disciplinary Team Meeting (MDT). Good preparation is critical. Don’t be naïve and turn up expecting the NHS Assessors to bend over backwards...

caretobedifferent.co.uk

The Decision Support Tool used by the assessor can be found here:

https://assets.publishing.service.gov.uk/media/63569f12d3bf7f0bd6f5176e/NHS-continuing-healthcare-decision-support-tool-guidance-2022-accessible.pdf

 

[sdmhred]

Thanks so much @Dave63

i’m putting together some supporting info. I assume it’s my right to ask for a completed copy of the checklist for our records?

im hoping asking this will ensure my detail is included and referenced.

I work in the system so am aware professionals will do a ‘quick job if there is no incentive to be thorough - and for this thoroughness and supporting detail is needed,

 

[luggy]

Hi @sdmhred you have received some great advice from @Dave63 and the links he has provided to the Care To Be Different website will help you to understand the process.

I can only speak from my own experience, but I have found that my mum's care homes and the ICB (Integrated Care Board, who carry out the assessments) seem to work together to ensure that Continuing Healthcare is not awarded. It may be that this is one of the reasons why care home records are often so inaccurate (and in my mum's case, falsified). Residents who fund their own care usually pay considerably more for their care fees than the NHS or Local Authority funded residents - I read somewhere recently, as much as 30% more. Therefore, it's in the financial interests of the care provider to have as many self-funded residents as possible.

Funded Nursing Care (FNC) is, generally speaking, awarded much more readily than Continuing Health Care (CHC). FNC is the consolation prize when, in many cases, the resident should have been found to be eligible for CHC. It is advisable to have some involvement in the various stages of the process, as it's quite likely that the care home and ICB will try and railroad through a decision that's in their best interests, not your mum's.

I'm currently in the middle of the CHC appeal process for my mum. It has been a brutal experience and I have become quite battle-hardened, like @Dave63.

 

[Palerider]

I can only speak from my own experience, but I have found that my mum's care homes and the ICB (Integrated Care Board, who carry out the assessments) seem to work together to ensure that Continuing Healthcare is not awarded. It may be that this is one of the reasons why care home records are often so inaccurate (and in my mum's case, falsified). Residents who fund their own care usually pay considerably more for their care fees than the NHS or Local Authority funded residents - I read somewhere recently, as much as 30% more. Therefore, it's in the financial interests of the care provider to have as many self-funded residents as possible.

Just to say one of mums nurses told me that having done the CHC DST, the CHC approached her and asked her to downgrade her assessment which is clearly in breach of the assessment process. There is a culture in some quarters of the CHC to fiddle the assessment. I would strongly advise anyone going through this to ensure they are present at all or any meetings and do not be afraid of addressing anything that seems 'off'.

 

[Dave63]

i’m putting together some supporting info. I assume it’s my right to ask for a completed copy of the checklist for our records?

You can do but I didn't. I just kept the copy of the checklist I used during the assessment. The purpose of the checklist is to basically filter out any cases which would clearly be ineligible for CHC and therefore not require a full MDT assessment. What I would do is go through the checklist yourself and score your mum as you view her needs with a couple of notes as to why you decided on a particular score. Then when you go through it with the care home you'll be able to argue against any lower scores the home may want to register. Don't be afraid to speak up if you don't agree with anything.

 

[Dave63]

Just to say one of mums nurses told me that having done the CHC DST, the CHC approached her and asked her to downgrade her assessment which is clearly in breach of the assessment process.

Something similar happened to us. After the DST was completed and the recommendation was to award CHC the ratification panel sent the DST back to the assessor asking him to 'reflect' on the three higher scoring domains. After 24hrs he had reflected and lowered the scores to make mum ineligible. We only discovered this after the solicitors got involved for the appeal.

 

[sdmhred]

how awful that people asked to be downgraded.…..

I really appreciate folk taking the time to reply. I have scored mum and added info that the home won’t know as she has only been there for a month. It’s actually been quite unsettling in a way as writing it all down makes me reflect on how serious her illnesses are ….and as they are rare ….the poor understanding of staff and all the massive responsibility I have taken on….indeed tonight her meds are changing And will be following a change initiated and designed by me ( following recommendations obviously) as i have more experience of it than GP 🙈🙈

I really don’t want the emotional fight of going for full CHC but I think I will get some advice as if she is eligible for the full whack I do have a duty as her POA to be aware and perhaps consider a solicitor etc.

 

[Dave63]

I really don’t want the emotional fight of going for full CHC but I think I will get some advice as if she is eligible for the full whack I do have a duty as her POA to be aware and perhaps consider a solicitor etc.

For me the emotional part was the hardest thing to put to one side. It was also crushing to see how the CHC system deals with the most vulnerable and how it overtly obstructs every part of the process.

@Palerider and myself have both been through the process and @luggy is currently going through it so there's a lot of advice we can share if you ever need it.

 

[sdmhred]

Thanks again all. The home have copied the checklist. They’ve copied and pasted what I sent over which is good.

Im happy with the scores and they gave one extra A to what I was expecting.
Its clear tho they have little understanding of her physical health illnesses….which isn’t a criticism as they are rare - but it is these that would give her perhaps a shot at CHC.

I think my next step is to read more on the care to be different website and speak to Beacon regarding whether they can advise further re CHC.

Does anyone else have things that jump out that I should be doing? Thank you so much

 

[Dave63]

I think my next step is to read more on the care to be different website and speak to Beacon regarding whether they can advise further re CHC.

The care to be different site is brilliant, it became my go to resource when I was going through the process. It was originally started as a blog by a lady who was fighting for CHC for her parents. The site is now owned and run by Farley Dwek Solicitors who we used to advocate for mum at appeal.

Does anyone else have things that jump out that I should be doing?

If your mum has been given two A's in her checklist assessment that should mean it's an automatic full MDT assessment, no questions asked. Some ICB's may try to give you the run around and deny a full MDT until she is 'medically optimised'. There is no provision within the National Framework for anyone to be medically optimised in order to be considered eligible for a full MDT and when I raised this with the ICB they came back with another refusal, this time until she was 'medically titrated'. This changed very quickly once her MP got involved and a full MDT was arranged.

It's a bit of a drag but getting familiar with the National Framework will help with understanding how the process should be carried out as opposed to how an ICB would prefer it were carried out.

https://assets.publishing.service.gov.uk/media/64b0f7cdc033c100108062f9/National-Framework-for-NHS-Continuing-Healthcare-and-NHS-funded-Nursing-Care_July-2022-revised_corrected-July-2023.pdf

 

[luggy]

Hi @sdmhred

I'm also using Farley Dwek to advocate for us during our appeal, who I found out about from the Care to be Different website. So far, they've been very good. Our appeal has ground to a halt after the ICB cancelled the Local Resolution Meeting a couple of months ago and neither myself or the solicitors have heard anything since, despite being chased by our caseworker. I originally started with Beacon who were OK and got me to the stage of raising mum's scores in the domains, but they were more expensive and I didn't think I was getting value for money.

@Dave63 is right about the National Framework. It's a hefty document, but well worth the effort to get yourself familiar with the process.

I did (and still do, with each development in our 'journey') apply for care records, medical records and GP records. If you use a legal advocate, they will apply for those themselves but I've always found that the more pairs of eyes reading them, the better. I've spotted a few things that the professionals haven't picked up on and have raised those issues to good effect.

I think @Dave63 has already provided the link for the Decision Support Tool. You may wish to download it and consider your mum's needs against the 12 domains and score them yourself with accompanying evidence and use it during the MDT meeting. The most important part of the DST is the 'bit at the end', otherwise known as 'The 4 Key Indicators' where it is considered how all of the needs in the 12 domains interact with each other. It is the Nature, Intensity, Complexity, & Unpredicability of needs which prove someone has a Primary Health Need, and it can be any one of the indicators or a combination of more than one.

It may not happen, but prepare for the care home underplaying your mum's needs. Some of my mum's needs were marginalised because the carers were coping with the issues, but a managed need is still a need. Some of my mum's needs were also unmet and the assessor took this as there being no or a low need.

You really do have to be prepared to stand your ground and challenge anything that you do not consider to be correct, and make sure that your challenges are recorded within the document.

I hope this gives you a little bit of insight. Best of luck.

Thanks again all. The home have copied the checklist. They’ve copied and pasted what I sent over which is good.

Im happy with the scores and they gave one extra A to what I was expecting.
Its clear tho they have little understanding of her physical health illnesses….which isn’t a criticism as they are rare - but it is these that would give her perhaps a shot at CHC.

I think my next step is to read more on the care to be different website and speak to Beacon regarding whether they can advise further re CHC.

Does anyone else have things that jump out that I should be doing? Thank you so much

 

[sdmhred]

I’ve been meaning to post again on this issue. I do so much appreciate all the posts and help.

Mum has deteriorated with her mobility and mood and the home are now saying there might be a shot at CHC. I’m in 2 minds:

a] I don’t know if I have the emotional energy for it - but as POA I guess I have the duty. But I don’t want to make myself unwell with all the additional stress.

b) I’m worried that if we fight and get it, the home could reject the CHC rate and then I be faced with mum having to move some distance to find a willing home. This would not be in any of our interests emotionally.

c] I think she is high needs on most of the DST - I need advice as to the severe categories. How long can you leave it before applying again….eg can you leave it a few months and then try again? Can a checklist be re requested after any change etc?

really don’t know what to do for best here.

 

[Dave63]

a] I don’t know if I have the emotional energy for it - but as POA I guess I have the duty. But I don’t want to make myself unwell with all the additional stress.

Difficulty navigating the process and the stress it creates will depend on the ICB, the level of support from social workers (if they're involved) and, most importantly, how up to date the care home records are. There were times when I felt like I was shouting at the moon when dealing with our ICB and the solicitors told me they were the most obstructive they'd ever dealt with. However, I've read of some peoples experience being the complete opposite and it was plain sailing. It can be a bit of a geographic lottery.

If you feel it may be too much there is the option to have someone advocate for your mum instead. We did this at the appeal stage because I was mentally and emotionally exhausted and the ICB were being so obstructive. This option will have to be paid for so it's a case of justifying the cost against the benefit of a successful outcome. The solicitors who run the Care to be Different site would be able to give some free initial advice on your mums case.

b) I’m worried that if we fight and get it, the home could reject the CHC rate and then I be faced with mum having to move some distance to find a willing home. This would not be in any of our interests emotionally.

If the home are suggesting your mum may be eligible for full CHC funding it sounds like they wouldn't have an issue? Have you asked them the question 'what happens if mum gets chc funding in regard to staying here at the home?'

c] I think she is high needs on most of the DST - I need advice as to the severe categories. How long can you leave it before applying again….eg can you leave it a few months and then try again? Can a checklist be re requested after any change etc?

Not sure of the timeframe between MDT assessments, or if there even is one? As for checklist assessments you can request one at any time.

 

[luggy]

I’ve been meaning to post again on this issue. I do so much appreciate all the posts and help.

Mum has deteriorated with her mobility and mood and the home are now saying there might be a shot at CHC. I’m in 2 minds:

a] I don’t know if I have the emotional energy for it - but as POA I guess I have the duty. But I don’t want to make myself unwell with all the additional stress.

b) I’m worried that if we fight and get it, the home could reject the CHC rate and then I be faced with mum having to move some distance to find a willing home. This would not be in any of our interests emotionally.

c] I think she is high needs on most of the DST - I need advice as to the severe categories. How long can you leave it before applying again….eg can you leave it a few months and then try again? Can a checklist be re requested after any change etc?

really don’t know what to do for best here.

Hi @sdmhred

My experience has been very similar to @Dave63, with an obstructive ICB (who are not even engaging in the appeal process at the moment), a care home who were not supportive and whose records were so poor that the CQC rated them inadequate. However, based on what you have posted so far, your mum's care home sounds as if they may be more inclined to give their support?

It's well documented that the CHC process is a minefield to navigate, and that it is also a postcode lottery. I can fully understand your reluctance to go down that route.

For me, it wasn't until I had experienced the process of mum's first MDT that I fully appreciated how the scores in each domain were given - and how far from the truth they were. You may find yourself agreeing with the scores, in which case it will be job done.

Wishing you the best.

 

[CrashUK]

I put my mum up for CHC and we had the assessment early this year.

Although scoring top on two and second highest on others she was ineligible for CHC BUT eligible for FNC.

FNC is pointless, as I’ve found out.
Mum is self funded and in a nursing dementia home and that is what she pays for.
Now FNC eligible, this funding is paid directly to the care home BUT they don’t reduce your costs!
They just point you to the signed contract which states "weekly fee plus FNC if eligible".

How can it be legal for a care home to be paid twice for the same thing! It's definately not ethical.
Her care hasn't increased, this is just more profit for the care home, no wonder they push for it!
This should be renamed from Funded Nursing Care to Funded Care Home Profits!

A total farce.

Care homes just fleecing residents, the NHS and ultimately the tax payer!