Funded Nursing Care to offset care home fees: applied 10 months ago waiting for decision

[doingmybest1]

Hi All

Apologies but I couldn't find when searching anything that had a suitable answer so I'm going to ask this question.

If Funded Nursing Care is appropriate as the person needs to be a nursing care setting, and there are nurses on site, and the nursing home is recognised as providing this service, how long does it take for an IGC to pass on the funded nursing care after an assessment has been requested and done? And, how long after that does it take for the care home to apply that fee reduction to the client in their care?

I admitted my Mum to a Nursing Home specialising in Alzhiemers/Dementia in September 2022. Having visited over 24 "care" homes, only 2 homes would admit my Mum because she was formally diagnosed with Alzhiemer's. All the other care homes I visited, although aware that I had a Mum with AZ, and she'd got a formal diagnosis, they still wanted us to visit, and go through their application process. I can only think that this is so they can booster their numbers for their statistics saying their care home is much in demand.

The home I chose said and, it's in their documentation, that any funded nursing care contribution would off-set her care home fees and that it would be back-dated. I was aware of this in advance and they assured me that Mum would be assess for FNC immediately she came into the home. I have no reason to doubt that they applied for this care.

She is having to pay for herself fully funded which is costing her £80k per year outside of London.

She has savings having sold her house before going into care, so she does not meet any threshold for Council funded care, or even for Continuous Care as she has Alzheimer's but actually is really healthy as she doesn't have heart condition, diabetes or any other condition we could argue to ensure she could be admitted under Continuous Health Care. She has incontinence, is completely unable to live by herself due to AZ, and has had so many falls because her balance is affected by the AZ, that it's clear she needs proper care. We tried to keep her at home for as long as possible but after numerous issues with falls, and "wandering" the GP and, Ambulance and emergency care was called out, they all said to us as a family, "you're Mum needs specialised care 24/7".

So we put in place an agency specialising in AZ care to visit Mum in her home, initially for a couple of times a day but then extended to 5 times a day covering evenings at which point they then told us, "your Mum can't be looked after at home and even if we extend our care, your Mum needs care 24/7". They told us very clearly your Mum needs 24/7 support and then when we went back to the GP she also agreed.

It's clear from everyone from her GP to ambulance services and even the agency care providers that Mum is beyond normal care. Hence why I have admitted to her to a Care Home with Nursing capabilities to keep her safe 24/7 as I know that's what she needs but also I've had to sign DOLS to mean that she can't get out by herself and is kept in their sphere of care.

Since last September, each month I ask by email, of the care home, what is the status of her Funded Nursing Care contribution and when will that be off-set by her fees paid each month?

Each month I'm told that the hold up is not at their end and they will keep us informed. I researched and it's the ICG who provides this funding. So now I frame my emails saying "have you heard from the ICG about Mum's Funding contribution from then to offset her fees to you which you assured me last year would be back dated and put in place".

And I have asked can you confirm if I have understood that the hold up is with the "<put the name of the county> ICG". Is there anything I can do my side to chase this up on Mum's behalf?".

I got the reply back for the last 7 months -- funded nursing care contributions are stuck because the staffing levels for those processing the request means that the requests are not being processed quickly and there is a bottleneck.

Are other families in this forum having to deal with this too?

What can we do as a group to stop this from happening going forwards?

Am I just a lone voice on this?

All the best to everyone out their looking after their loved ones and then struggling to keep abreast of their finances whilst holding down jobs, looking after their own family and trying to survive themselves when the economy is against them?

Whilst my Mum has money - I don't - and I'm struggling with all of the economy and mortgage stuff whilst supporting my Mum and trying change her money to accounts with high interests, and to hold down my job in my mid 60s - it's just a bit of a disconnect and frustration that I'm an unpaid administrator for her life and sometimes I feel that my own life is on hold because of the amount of time I have to spent working with all sorts of agencies to sort out the best for her when actually she has a brain disease that isn't recognised by any government that isn't her fault but because of this - they can cash in - and people like my Mum pay extra above and beyond what she's paid into the tax system all her life and because the NHS don't recognised AZ as a disease - she and the family are being penalised.

My apologies for sounding off but it just so doesn't seem fair. And yes, there are many things about the Health care system that aren't fair but why is it that a recognised brain disorder affecting many elderly people and now younger people, is clearly some kind of disease or virus not associated with how they have lived their lives, and not yet identified by the government, and why is it not part the normal NHS care system and a recognised disease?

Why is it that anyone with AZ and the family and future generations are being penalised by the government in terms of care provided because they don't get that this is a disease and so are expecting all those suffering from it should have to pay for their care and support from their own money when there is a NHS system into which we have all paid for decades to help fund our care and support?

Boris tried to bring something in to at least help people in 2021 to take effect 2023, and now that's been diverted by Jeremy Hunt to 2025. By the time this comes into being my Mum will have spent over £320k and she will have just £40k left but because of the way that figures are worked out - we will be told that they can't fund Mum in current care home, and rather than helping us, they'll just eject Mum from her care home.

It's so very stressful for all us looking after our family members under this type of situation let alone dealing with the fallout with other family members who under LPA have stolen money, misappropriated it and causing us yet more worry.

Is there anyone out that challenging all of this, raising it with the government? Is there anything I can now do to sign-up to a petition to complain about all of this?

I just want my Mum to be safe - to stay in the care home she is in, and know that when she deteriorates and is at the end of her life due to AZ, that she will be taken care of even when her private money has run out. I can't fund her. I'm someone who as a woman born in 1970s when all I could do was do a "secretarial/admin" job -- I've never been able to have a "career job" with money left over to support my Mum at this stage in my life in my mid-60s.

It's hard for all of us to leave our loved ones in the care of those we know who are keeping them safe but perhaps under-paid. I saw my Mum today, she cried when she saw me. I left her after taking her out for the day and having a lovely day, and she cried when I had to leave, and I gave her a hug and said "I love you". She burst into tears - and then because the care home know about Mum - the kind care assistant scoped up Mum when she was in tears - and then re-focused her and took her away for her Sunday Lunch. It broke my heart. It always does when I leave her like this. I drove up the motorway in tears.

This is a post about FNC -- but also about what we need to do going forward to get recognition for what families are doing by paying to the government for a disease they have refused to reconigse.

 

[nitram]

FNC is not applied for, it is a possible outcome of the CHC checklist.
https://www.nhs.uk/conditions/socia...ey-work-and-benefits/nhs-funded-nursing-care/ .

Check with your local ICB whether a checklist has been done and if so the outcome.

 

[doingmybest1]

Thank you Nitram for your reply. You are someone I totally trust and you seem to have knowledge that so many of us when posting, do not have, so thank you again.
I'll look up your link and check it out.
Again today I was told by the Nursing Care home that there is a huge backlog on the process and that's why we've not got any feedback yet. I asked if contact the ICG myself would help and again was told, probably not as there is a huge backlog.
I did say, "it's almost a year since Mum came in to your care, so what happens to people admitted in the later stages of Dementia who qualify for FNC (and you've said CHC -- which Mum won't qualify for at this stage) but sadly die before it's received?". I was told that does happen, and that they handle things sensitively as relatives can't always get to grips with this issue immediately a loved-one passes but they advise them that there is money yet to be received to off-set their care and they ask for the Will executors names so that they can contact them.
Again, Nitram, thank you. It does seem a bit crazy but it could be genuine that with the merges into ICGs in Mum's County there is a backlog.
All the best. I'll update once I've chased up.

 

[MarieD]

Hi
I can only speak from my own experience but my mum was in care three months and social services told me she’d get nursing care funding but I then pushed the social worker and care home to get her assessed for CHC funding because I felt she would qualify I really did have to push them into arranging a meeting. The social worker did do this and my mum scored pretty high on a lot of the checklist the person we had the meeting with told me there and then she’d qualified, all in all my mum had been in care for four months in total at this point.
I should also point out this was in covid times and the meeting was online. Looking at all the backlogs I the nhs now she could possibly be correct.

Obviously I don’t know how ill your mother is but please do look at the checklist I remember balance and falling was one of the points
Also nutrition has she lost a lot of weight etc
Hearing and eyesight issues
Cognitive issues etc
If you believe she would qualify for CHC then I’d speak to her social worker and ask for an assessment even if she doesn’t qualify it’s my understanding once you’ve been assessed your in the system and can be reassessed if she gets worse.

 

[Chizz]

As I understand it, to get NCF the PWD has to (i) have been assessed for CHC or at least had the checklist properly done and (ii) to have failed to get CHC but assessed as needing nursing care and (iii) be residing in a nursing care home.
If the PWD is assessed as qualifying for CHC (which is pretty rare) then they get CHC and don't need NCF.

 

[nitram]

NHS-funded nursing care practice guidance

www.gov.uk

 

[Dave63]

There's a process that should be followed and @nitram has pointed you in the right direction. The reality is that the process is often misunderstood, ignored and often replaced with a policy which suits an individual ICB. You'll have to read the relevant sections of the National Framework to understand how the process should work and question everything you are told by those responsible for applying the process.

It's time consuming and extremely frustrating.

You need to establish whether a checklist assessment has been carried out for your mum, if so, when? If it hasn't been done then I'm not sure how the care home can 'apply' for FNC. It's not something you apply for, it's something which can be awarded following a negative checklist assessment or following a ineligible for CHC decision after a MDT meeting.

The following link is helpful in explaining the basics although their reference to paragraph numbers in the National Framework are not up to date.

Don’t Miss Out On Funded Nursing Care! - Care to be Different

Many people miss out on Funded Nursing Care and yet it’s a tax-free, non means-tested benefit for people living in a care home...

caretobedifferent.co.uk

 

[whoknkows]

just posted elsewhere and found this, so I will assume when the SW told my DH that she was going to look into money towards nursing care, she must therefore first be looking at CHC assessment. We don't have PoA on health and well being - will DH be asked to be involved or even informed of assessment? He really doesn't ask the right questions and I don't have permission to talk on MiL behalf accept with OT who she was able to say yes to on one visit! I don't blame DH as he is at work when he gets these calls about the care, which is now going from respite paid for in part from income assessment, to recommend full time in the nursing home and the head nurse has emailed me to say MiL required 24 hour nursing care. It's rather complicated and from reading other threads I am not sure whether she would qualify for CHC as yet, and also not sure whether they will decide she is a self funder - won't elaborate on this thread. So I am going to keep my fingers crossed that the SW is putting into place a CHC assessment - and that this will take some time. What does that mean for fees in the meantime? I suppose we wait for the finance department to write. Are we now in disregard - getting confused.

 

[Dave63]

A word to the wise - when it comes to social services or CHC don't cross your fingers and hope for the best, it'll get you nowhere. You have to be extremely proactive and it's time consuming and often beyond frustrating. You'll need to become familiar with the National Framework for Continuing Healthcare in order to understand how the process should work, if you don't they'll try to tie you up in knots.

You can ask to be involved in the assessment process to ensure someone is representing your MiL interests, PoA is not a requirement.

The SW has a duty to ensure your MiL is properly assessed for possible eligibility for CHC prior to starting any means tested assessments. This is done via the checklist assessment which will score your MiL on several domains depending on her needs. If this results in a positive checklist it will be forwarded to the ICB to arrange for a full MDT assessment. Don't just hope the SW is doing this, ask. If your DH is too busy then call yourself. Your a family member and you have the right to ensure your MiL is being assessed correctly.

I've no idea about property issues but others on the forum will probably be able to advise.

NHS continuing healthcare checklist guidance

www.gov.uk

 

[whoknkows]

Thank you Dave63, I was confused because of lack of PoA, and because when I rang the SW and their team the person on the phone refused to talk to put me through because I was not a blood relative. She said I had no rights and had to go via my husband, who I could not contact at that time. I was really upset and emailed them that if they didn't consider me to be an important person in MiL life, then maybe they should take my details of their files...... I likely need to revise that request now. On several occasions the DN started ringing me because I am the person who has been the taxi driver, did all the food shopping and his year, all the washing and checked on the carers. On one occasion the DN started telling me I had to ring 999 because noone was available to come round when MiL was screaming and worrying her neighbours - I argued and she rang 999, the paramedics didn't take MiL to hospital. I was also reduced to tears of frustration by Disabled Badge people who initially wanted to know who I was and whether they should even talk to me, and then took so long to agree that a women who could not walk was eligible that by the time we got it she was in the nursing home and unlikely to leave.

I will discuss this with DH, he knows I was so stressed and upset by this debacle that he probably thought he was helping, but the SW even needed persuading to let him be present when she visited MiL first time, (she left a message saying I am going to see your aunt, and he rang back and said I don't think so, my aunt is not in this borough, I think you mean my mother and I would really like to be there). Her files said MiL had capacity and therefore we were not included in any decisions, but she listened to DH and was really helpful and on visiting she agreed MiL didn't have capacity! The nursing home seems to be excellent at record keeping, including a mood chart because of MiL paranoia coming and going. MiL is signed up with their visiting GP who I assume would be involved too. So from that point of view I am hopeful of experienced experts involved. Care home have just emailed me to say the SW agrees about 24 hour care and nursing needs and that she has applied for long term placement with the homes owners. So I can see I/we need to get proactive and find out what that actually means!

 

[Dave63]

Is she under a Community Mental Health Team? If not, it may be worth asking the nursing home if they think it's worthwhile getting a referral. My mums CMHT were great but when she moved homes the second CMHT were not quite as supportive, so it appears to be a bit of a lottery.

 

[whoknkows]

I have realised I am straddling two threads on this now. Husband was told that she was reassessed by Psychiatrist yesterday who said she has declined massively in 7 months, she had been discharged after her one and only assessment in December, but the Care Home got her back on the list. DH was told he will get a copy of her report!

I explained to him that he must ask exactly what SW meant by trying to get funding - it is a new SW, confusingly with an almost identical name to the first. In the meantime my debacle continues with getting hospital bed etc removed from the flat so that we can tidy up, we have bought furniture out of storage which is squeezed in next to the commode etc. at the moment. Third time lucky this week - I am hoping. Lovely OT rang me today and apologised and said the new company are appalling and she is spending all day chasing problems today. They have lied to her about the two aborted visits - 6 hours of my life so far. When I retired early from my part time job I hadn't realised that my life would be taken up with such things...

My parents will be next hurdle, but they live too far for me to be so hands on and they can afford fees without selling a property - but my mother has some very strange ideas about who her carers might be and where she will find them. 😂

 

[whoknkows]

Social Worker has been in touch with DH, who even after my little lesson and links I emailed him, is so stressed and busy at work he hasn't full engaged! Anyway she is sending him more info and they are going for CHC and there is a zoom meeting with DH will 'attend' next Thursday. I will run through things with him but he got the impression it is going to be recommended and Social Worker and others involved atm are hopeful. I am keeping fingers crossed and know not to count any chickens, I have explained to DH the many people struggling and battles over this, he hadn't understood that everyone is entitled to apply if their needs are such including the self funders. As I explained, this is NHS, no-one pays the NHS, many years ago many of elderly patients wouldn't have come home, but automatically gone to a nursing home.

It does seem that to me, so many people are unaware - but because MiL had a social worker visit when the carers at home wasn't working, she got the ball rolling. As I don't speak to the SW, I don't know the full picture but the lead nurse at the nursing home has said 24 hour care, rapid decline with dementia, open wound appeared from surgery to ankle (surgery was in January) - more hospital visits needed, rectal prolapse, kidney disease, was pre diabetic a few years ago but don't know atm, hearing loss and usual eyesight issues, occasional delirium and paranoia, needs help with all personal care and no mobility. Despite all this for about 30% of a short visit we can have a conversation that seems relatively normal, alongside the rubbish and conspiracy theories .... including that one of the residents is her eldest son in disguise, which causes upset when she shouts at him for not answering his mother.

One thing is certain, she didn't have capacity when she was sent home with a positive for Covid that the discharge coordinator forgot to tell us about! That was only 4 months ago. During all this process (7 months now) to date I have been spoken to some fantastic and understanding people, the OT, the dementia nurse services, Help the Aged, every paramedic, (we have met a lot), the police who found her after her fall, one or two fab nurses (lots not sadly), kind newly qualified GP, one dreadful GP, understanding GP receptionist who apologised she couldn't help or get a GP to visit, (she is going through the same with her elderly father,) and I found this community who understand. What is apparent also is so many people don't know where to turn or what help is available, my aunt had none of this help and self funded to her end, 3 years of care home fees and likely in the last months could have applied for CHC, and one other aunt who I am certain should have had funded help but I believe paid for private nursing for a month, just before her discharge a nurse took her daughter to one side and said she could put her in touch with some nurses who would provide care at home. One daughter was being treated for breast cancer and the other works, so neither could be carers.

Gave some money to a friends daughter who is medical student and was doing charity triathlon to raise money for Alzheimers - be great if she ends up working in that field, she saw her own grandmother go through this too. And now her great aunt.

Seeing a friend next week for update on huge worries with her mother, at least I have a little more knowledge than last year that I can offer, but mostly where to look for help.

 

[Dave63]

If you're worried that your DH may be too stressed to absorb what's happening during the zoom call why not join him on it? There's nothing in the guidelines saying you can't.

 

[inadequatenursinghome]

PLEASE NOTE: if you are involved in the CHC MDT using the Decision Support Tool please check that the MDT is composed correctly as in my mother's case it was not and it was therefore invalid. I received an apology and it took a further 8 mths for it to be completed again (due to errors in contracting within the NHS). During this period my mother could not be charged for her place in the home and the NHS had to fund.

 

[whoknkows]

thank you for all your help and advice, DH not stressed about CHC as he has no idea what it is really about! I will give him another lesson today, he is in the middle of difficult things at work, so I am just hoping he makes the call..... But good idea about joining him. Are we mad to trust that the SW and lead nurse at the care home seem very competent? I am not even sure if this is a proper meeting or what it is, DH hasn't forwarded me the email so I assume he hasn't had it either - he said he would when he got it. He is out atm so I will ask him later. Worse case scenario I will make him some notes, his is very clever with a good head for logic and a good memory and used to reading complex legal documents on a day to day basis, but not of this sort! Does he get to ask questions? We are visiting the nursing home later, but the head nurse, who has 16 years experience and is really organised, isn't working this weekend. She will talk to me so I could ring her early next week and have a chat about it all, as soon as I see the email. 🤞

 

[whoknkows]

I have time at home because my battery has gone flat... so I cannot do my tip run with some of the garden rubbish etc. from MiL's flat. I am typing a document for DH and have printed some guidelines on DST. Do you think it would be OTT to offer a photo of the state of the flat when MiL had her second fall just one week after hospital said she was OK to be discharged with one carer 3 times a day.... or maybe not necessary now?

I have organised all her health issues into separate plastic wallets and typed a summary of them in my word doc.

Will the team bother to go through her health record, they do have access. We haven't seen the new psych report yet - the last one had several inaccuracies that I wrote to the GP about but they didn't respond - don't have PoA, so they don't need too! I will be very interested to see the new one.

It is only on typing up a history that I realised quite how much time MiL has spent at hospital appointments, some before she asked for help for skin cancer - non malignant - three minor ops at day clinic. I doubt now that she would notice if new ones appeared so assume the nursing home will look out for them.

 

[whoknkows]

DH sent the email, it has a letter saying CHC assessment and names CHC nurse assessor but next to social care professional NA? Two other documents about the DST and CHC etc. and a consent template, which I assume someone else fills in as family don't have PoA on health and wellbeing. Then a link to complete after the online meeting. Will nurse assessor have met MiL?

 

[Dave63]

A CHC assessment should normally consist of at least two professionals involved with and knowledge of a persons needs. This could be a social worker, care home nurse, CMHT etc. I would doubt if the assessor will have met your MiL, but I may be wrong.

Following link relates to NHS England, if you're in Wales or Scotland the rules may differ.

Attending the Multi-Disciplinary Team meeting – some useful guidance - Care to be Different

Important information about attending the Multi-Disciplinary Team meeting and what to expect. This article provides easy-to-follow tips and advice.

caretobedifferent.co.uk

 

[MarieD]

A CHC assessment should normally consist of at least two professionals involved with and knowledge of a persons needs. This could be a social worker, care home nurse, CMHT etc. I would doubt if the assessor will have met your MiL, but I may be wrong.

Following link relates to NHS England, if you're in Wales or Scotland the rules may differ.

Attending the Multi-Disciplinary Team meeting – some useful guidance - Care to be Different

Important information about attending the Multi-Disciplinary Team meeting and what to expect. This article provides easy-to-follow tips and advice.

caretobedifferent.co.uk

I can confirm the CHC assessor never met my mother. The meeting was made up of the care home manager social worker and myself.