Should I rock the boat?

[Pickles53]

Mum has been getting steadily weaker and since last week has been in bed with an airflow mattress. This was initially to deal with a pressure sore, but GP and DN, as well as care home staff, have said she is now too frail to be out of bed and have talked to me about end of life care. Of course nobody can say how much longer mum is likely to live, but GP has agreed to fill in the attendance allowance form which says she is unlikely to live more than 6 months.

My dilemma is this. The care home is lovely, I don't want to move mum as it would be so distressing for her, but it is costing her a lot of money. They have confirmed that they can look after mum with support from GP & DN team. One of the deputy managers has previously told me the home is not a CHC provider; I didn't pursue it at the time as I thought mum would never qualify but now looking at the checklist I feel that she would at least tick enough boxes on the checklist to qualify for a full assessment.

Do I as her POA (finance) have responsibility to maximise her income by asking for CHC assessment?
Should I talk to the home manager in more detail, I don't know why mum couldn't be a CHC resident as I have read you can in some cases be CHC funded even in your own home? Or is it because they are not a nursing home?
Is it worth starting the process when I know how hard a struggle it is to get CHC? And wouldn't it take too long anyway?

All this going round and round in my head and I don't get any further trying to decide what to do, so thought you lovely people might be able to help me work this out....

 

[jaymor]

I would have a word with the Owner/Manager of the care home.

CHC means that medical care is the priority and a care home has no medically qualified staff to carry out the required care.

CHC can be carried out at home which would mean medical staff coming into the home so why can't the staff go into a care home?

It could be that them saying they are not a CHC provider is because they have no medical staff to provide such care.

It could also be that the home has in the past been turned down by CHC as being unsuitable for some reason.

Speaking to who ever is in charge should answer your questions.

 

[Saffie]

We have heard on TP of residents receiving CHC funding in a Care home as opposed to a nursing home and hough it does sound a little strange as it is awarded for health reasons, it can happen.

It is possible that the home is too expensive for the CCG to agree to pay the fees if they think that another home would provide the care deemed necessary. They have their limits too.

 

[angecmc]

Hi, I don't know a lot about chc only that when my mil was dying of cancer she was admitted to a care home, on admittance she was refused chc , my husband was advised to apply retrospectively when she died and we had been presented with a large final bill, he did so and we were granted it fortunately as we could not afford the bill and there was no money as she didn't own her own house. It isn't easy as you are going through a distressing time anyway, but I would say go for it and if it is refused try again retrospectively.xx

Ange

 

[MirandaT]

It's worth applying - I previously would have said not to bother but recently a friend's mum was awarded funding - she was admitted to hospital when things went downhill at home and apparently the staff helped to push it through. Her family had chosen a care home already which was going to cost more than the Continuing Care funding but it was agreed that if the family paid the difference that would be acceptable.
I applied on my mum's behalf early in September (I've got POA) and am still waiting for an initial assessment, but have been told it can be backdated and that a posthumous award can be made. The delay is frustrating, the only upside being that the longer they take to assess the more likely mum will be to get it as her needs are increasing. She's not in a nursing home, it's a care home, but I'm hopeful that as she needs 24 hour care in everything and the District Nurses are coming in to see to her pressure sores she might get something.....

 

[LYN T]

It's worth applying - I previously would have said not to bother but recently a friend's mum was awarded funding - she was admitted to hospital when things went downhill at home and apparently the staff helped to push it through. Her family had chosen a care home already which was going to cost more than the Continuing Care funding but it was agreed that if the family paid the difference that would be acceptable.
I applied on my mum's behalf early in September (I've got POA) and am still waiting for an initial assessment, but have been told it can be backdated and that a posthumous award can be made. The delay is frustrating, the only upside being that the longer they take to assess the more likely mum will be to get it as her needs are increasing. She's not in a nursing home, it's a care home, but I'm hopeful that as she needs 24 hour care in everything and the District Nurses are coming in to see to her pressure sores she might get something.....

Hi Miranda

It is illegal to pay top ups when CHC funding has been awarded.

Who told your friend to do this?

I hope you are successful with your own Mum's CHC application.

Take care

Lyn T

 

[Pickles53]

It's worth applying - I previously would have said not to bother but recently a friend's mum was awarded funding - she was admitted to hospital when things went downhill at home and apparently the staff helped to push it through. Her family had chosen a care home already which was going to cost more than the Continuing Care funding but it was agreed that if the family paid the difference that would be acceptable.
I applied on my mum's behalf early in September (I've got POA) and am still waiting for an initial assessment, but have been told it can be backdated and that a posthumous award can be made. The delay is frustrating, the only upside being that the longer they take to assess the more likely mum will be to get it as her needs are increasing. She's not in a nursing home, it's a care home, but I'm hopeful that as she needs 24 hour care in everything and the District Nurses are coming in to see to her pressure sores she might get something.....

Miranda your mum's situation sound very much like mine, she was initially nursed in bed because if a pressure sore. That is now improving but GP and DN view is that she is too frail to get out of bed at all now.

It is a more expensive home than the local average, and I have seen other posts about whether a CHC funded patient could pay extra for 'recreational' or other facilities, but if she got CHC that would at least cover part of the fees.

 

[PeggySmith]

It is illegal to pay top ups when CHC funding has been awarded.

LYNT are you absolutely sure about this? MIL has just been awarded CHC funding but they won't pay the NH fees in full. The shortfall is about £100 a week and we were thinking about offering a top up.

To fill in a bit of background it's the cheapest NH we looked at and there isn't an alternative locally which we would find acceptable so it's a bit of a dilemma...

 

[MirandaT]

Hi Miranda

It is illegal to pay top ups when CHC funding has been awarded.

Who told your friend to do this?

I hope you are successful with your own Mum's CHC application.

Take care

Lyn T

I don't think anyone told the family to top up, they insisted that their mum would be best in a particular home and told the NHS CC Team that they would pay the extra. Last time I was in touch with my friend they hadn't received any bills! When I spoke to the local NHS CC contact and mentioned the possibility of paying the extra as my mum was settled in her care home and to move her to a less expensive one would be detrimental he seemed to say that it could be arranged. I hope it will be possible - I'd hate to not be able to take up any funding that's offered! Mind, at this rate it'll be a post-humous award .....not sure what rules would then apply? Lyn, is there any document available with all the ins and outs like this? I've read a bit about CC but not any of the finer details so feel a bit ignorant!

 

[geum123]

Mum has been getting steadily weaker and since last week has been in bed with an airflow mattress. This was initially to deal with a pressure sore, but GP and DN, as well as care home staff, have said she is now too frail to be out of bed and have talked to me about end of life care. Of course nobody can say how much longer mum is likely to live, but GP has agreed to fill in the attendance allowance form which says she is unlikely to live more than 6 months.

If your Mum is nearing the end of her life, it could be that she could be fast tracked for NHS Continuing Health Care, but I am unsure of the time limit.?

My dilemma is this. The care home is lovely, I don't want to move mum as it would be so distressing for her, but it is costing her a lot of money. They have confirmed that they can look after mum with support from GP & DN team.

My Dad was in a nursing home, but it wasn't on the list of NHSCC providers.
When he qualified for NHSCC, I was told he may be moved, but I
argued that as he had already been there 4 years it was not in his best interest.
Only because the staff knew him, were they able to manage his complex needs.

Thankfully he was allowed to remain where he was.
The nursing home manager told me they received less money from the NHS than a self funder, so that I imagine, is why some homes don't take NHSCC care patients.

Also the NHS probably block books some homes at a discounted rate for the purpose.
So although it is said you can receive NHSCC in any setting, the reality seems to be more to do with costs, but Best Interests should have priority I would have thought.

 

[Pickles53]

If your Mum is nearing the end of her life, it could be that she could be fast tracked for NHS Continuing Health Care, but I am unsure of the time limit.?



My Dad was in a nursing home, but it wasn't on the list of NHSCC providers.
When he qualified for NHSCC, I was told he may be moved, but I
argued that as he had already been there 4 years it was not in his best interest.
Only because the staff knew him, were they able to manage his complex needs.

Thankfully he was allowed to remain where he was.
The nursing home manager told me they received less money from the NHS than a self funder, so that I imagine, is why some homes don't take NHSCC care patients.

Also the NHS probably block books some homes at a discounted rate for the purpose.
So although it is said you can receive NHSCC in any setting, the reality seems to be more to do with costs, but Best Interests should have priority I would have thought.

Thanks geum for your very insightful comments. Mum hasn't been in the CH very long but I still think it would be very distressing to move her. I'm still thinking it over....

 

[MirandaT]

I was visiting mum today while the district nurse was there and she did the CHC assessment, them explained it all to me and left the form with me to fill in a few bits and to read through. She is recommending that mum be awarded CHC, mainly because of her pressure sores, but said that a couple of weeks ago she wouldn't have been able to make the recommendation as her skin was still okay.
She said that the NHS CC team don't always agree with her decisions and that there's quite a delay in decisions being made.
Still, mum's in the system now and I feel a bit better informed!

 

[MirandaT]

I thought I'd give an update on our claim for Continuing Health Care - it's not very positive news! I had a phone call on 12/11 to say that as my mum died on 2/11 the NHS Continuing Health Care Team couldn't consider the checklist they'd received. It turned out that they had first received it on 28/11 but it was 'encrypted' and they couldn't read it. A new copy was requested which arrived on 7/11, 5 days after mum passed. Nobody had bothered to 'fast track' it. The man who rang me said that if I wanted to pursue it I would need to contact the Retrospective Team and ask for a Retrospective Assessment.
I've sent a long letter to them (fortunately I'd kept notes of dates and who I'd spoken too - I first rang on the 2/9!) and am now waiting for a reply.
I also got in touch with the executors (mum's bank) of mum's will as any money issues are their concern now. I'm dealing with a very nice lady there who's mum died of Alzheimer's two years ago. She said that she is in a similar situation, but it's been two years waiting for a Retrospective decision!
I feel cross - my poor mum lying there all helpless and nobody can be bothered to get a move on......
I'll return to this thread when I've heard something, but don't go holding your breath!

 

[MirandaT]

I was surprised - amazed actually - to get a phone call to say a meeting will be held on 7th January to look at the request for CHC funding. They really want a family member to attend so my cousin will go. Now mum's gone I don't much mind about the outcome, but will let the forum know!

 

[Pickles53]

I was surprised - amazed actually - to get a phone call to say a meeting will be held on 7th January to look at the request for CHC funding. They really want a family member to attend so my cousin will go. Now mum's gone I don't much mind about the outcome, but will let the forum know!

Hello Miranda, and just wanted first of all to send you my condolences and sympathy. My mum died a few days after yours, before I had decided whether to pursue CHC funding. I think you are very courageous to go on with this as it does seem it was poorly handled. If nothing else, it may mean that the procedures are improved for the next person who needs this help.

Hope you have a peaceful Christmas.

 

[Fred Flintstone]

[...]
One of the deputy managers has previously told me the home is not a CHC provider.

What is a "CHC Provider"

Worked out that ILs were In-Laws, but I get stuck quite often with the TLAs. Where do I find guidence?

FF

 

[lin1]

What is a "CHC Provider"

Worked out that ILs were In-Laws, but I get stuck quite often with the TLAs. Where do I find guidence?

FF

Hi. One of our members started a list of abbreviations a while back, which you amy find helpful.
http://forum.alzheimers.org.uk/showthread.php?26388-Abbreviations-List-and-Talking-Point-Jargon

CHC is, NHS continuing health care.
It is when the NHS pays for care when they are not in hospital, rather than SS (social services) or the person themselves. certain stringent criteria have to be met , the person is usually very ill or has complicated care needs.


Hope this helps

 

[MirandaT]

Hello Miranda, and just wanted first of all to send you my condolences and sympathy. My mum died a few days after yours, before I had decided whether to pursue CHC funding. I think you are very courageous to go on with this as it does seem it was poorly handled. If nothing else, it may mean that the procedures are improved for the next person who needs this help.

Hope you have a peaceful Christmas.

Thanks Pickles - just read this as haven't been on the forum for a few days. I'm not really courageous, just cross! I understand that the NHS can't dish money out to all and sundry, but do think that all sufferers of dementia should have financial help with their care needs at least in the last 6 weeks of their life. It wouldn't be much but it would be something.

 

[MirandaT]

Continuing Health Care claim refused - finally!

Finally, after many phone calls and filling of forms and much waiting inbetween, we've been told that mum wouldn't have been entitled to CHC. It's been 1 year 9 months since I first made the claim on her behalf, and 1 year 7 months since she died.
"No evidence if an additional health need" was the reason given.
It all feels like water under the bridge now ....

 

[Shedrech]

oh MirandaT, just don't know how to respond
"water under the bridge" seems the best way to let it go

best wishes for the future