CHC - Just starting off - any advice please?

[Florriep]

MiL has been self-funding residential care for four years. As well as vascular dementia, she has a cocktail of serious health conditions which need to be managed. Supported by the CH Manager, we think she meets the criteria for CHC funding.

In response to our request for an assessment, the District Nurse advised yesterday that a CHC assessment was pointless - we would not be eligible because (1) dementia is not covered by CHC, (2) MiL does not have a catheter (?!) and (3) Social Services have not recommended it (unsurprisingly as she is not on their radar). The District Nurse reluctantly agreed to carry out an assessment next week, even though there’s no point and suggested we should move MiL to a nursing home.

We’re under no illusion that CHC’s a minefield, but still taken aback. Very worryingly the District Nurse seems to have reached her decision without looking at a shred of evidence, including that MIL is in the wrong setting.

Is this normal for CHC? Do we need to get independent/legal advice to stand a chance of success? If by some miracle we manage to get through the initial assessment, how is the second stage determined – is it based on the District Nurse’s recommendation or a separate, more detailed assessment by different people?

The cost of Mil’s (nothing fancy) care has already run well into 6 figures and we’d really like the NHS to pick up the tab for something we think she’s entitled to! Any advice or experience you could share would be very welcome.

 

[PeggySmith]

We've just got CHC for MIL whose main illness is dementia and she's quite compliant. We paid for support at the meeting to go through the criteria. The lady from the CCG had only allowed enough time to tick box her for FNC so our advocate had to force her to do her job properly.

 

[Florriep]

Thank you Peggy. What sort of support did you have and how did you select them? Was it a solicitor or someone else?

 

[PeggySmith]

Hi there, I've sent you a private message telling you who the company are. No, she wasn't a solicitor. We sort of stumbled over them at a family reunion where the daughter of a friend works as their web designer.

They certainly seemed honest and straightforward to us.

 

[geum123]

In response to our request for an assessment, the District Nurse advised yesterday that a CHC assessment was pointless - we would not be eligible because (1) dementia is not covered by CHC, (2) MiL does not have a catheter (?!) and (3) Social Services have not recommended it (unsurprisingly as she is not on their radar).

Well she's wrong on all accounts.
The criteria to qualify is a primary health need.

Very useful information in the link below, which is easy, though long to digest,
but you do need to know all of the info.

Some people have done it themselves.
Some have done it themselves and the stress has affected their health.
Some have done it via the Alzheimers volunteer NHSCC group, (Not sure if this still exists(
Some have had advocates,
Some have had advocates who have ripped them off.
Some have used solicitors but still not won
Some have used solicitors and won.

I fall into three of those categories, but finally won using a solicitor who took the case on a no win no fee.

http://forum.alzheimers.org.uk/showthread.php?72502-Nhs-continuing-health-care-book.

I would say if you intend to part with any money up front for an advocate,
make sure you get something in writing from them first.

 

[PeggySmith]

I would say if you intend to part with any money up front for an advocate,
make sure you get something in writing from them first.

You've got me worried now Geum, but I do have to say that our advocate really knew her stuff, put in the hours and was very persistent at the meeting.

 

[Jessbow]

The district nurse clearly doesn't know what she's talking about.

Have a look through the checklist yourself and your theories ready!

She does need to have a primary HEALTH need- My mother got it but she had a serious heart condition ( inoperable and terminal) so her medical needs were deemed to be palliative. As well as this she was partially sighted, diabetic and had dementia

 

[geum123]

You've got me worried now Geum, but I do have to say that our advocate really knew her stuff, put in the hours and was very persistent at the meeting.

You've got nothing to be worried about PeggySmith.
There are genuine people out there.

The person I am referring to is definitely not your advocate.

However it does no harm to get something in writing if passing money over to someone, who ever they are.

 

[J W]

The distict nurse in this case should only speak about things she is qualified in, and it seems CHC funding is not one of them.
Shocking points she made.

 

[jaymor]

One thing to take into account if you are considering paying someone to help is what it will cost. CHC when granted is reviewed on a yearly basis and can be removed there and then. You may get CHC for years or you could be unlucky and find you only get it for 12 months.

 

[win]

MiL has been self-funding residential care for four years. As well as vascular dementia, she has a cocktail of serious health conditions which need to be managed. Supported by the CH Manager, we think she meets the criteria for CHC funding.

In response to our request for an assessment, the District Nurse advised yesterday that a CHC assessment was pointless - we would not be eligible because (1) dementia is not covered by CHC, (2) MiL does not have a catheter (?!) and (3) Social Services have not recommended it (unsurprisingly as she is not on their radar). The District Nurse reluctantly agreed to carry out an assessment next week, even though there’s no point and suggested we should move MiL to a nursing home.

We’re under no illusion that CHC’s a minefield, but still taken aback. Very worryingly the District Nurse seems to have reached her decision without looking at a shred of evidence, including that MIL is in the wrong setting.

Is this normal for CHC? Do we need to get independent/legal advice to stand a chance of success? If by some miracle we manage to get through the initial assessment, how is the second stage determined – is it based on the District Nurse’s recommendation or a separate, more detailed assessment by different people?

The cost of Mil’s (nothing fancy) care has already run well into 6 figures and we’d really like the NHS to pick up the tab for something we think she’s entitled to! Any advice or experience you could share would be very welcome.

|It is not solely up to the DN at all even though she does have her input. Prepare yourself in details. Download the National Framework and complete it yourself exactly as you see the situation, using the worst scenario as the basic but without exaggerating. Any diary of facts you can include is brilliant.

All the team involved with Mil's care has to put a report in which is then taken into account, a Social Worker usually does the assessment and then completes her forms on her computer taking your report in to consideration as well as the various reports including one from your MIL's own GP if he still looks after her. The result goes to panel which is made up from several independent professional people. You can attend but often you are not asked to. I did not go myself and yet we managed to achieve funding for both my husband and mother first time. The SW was brilliant and we were well prepared. Good luck and be positive.

 

[Florriep]

Thank you all for the very helpful advice and suggestions. I'm outraged that dementia and all that goes with it is not considered a health issue and that its such a fight to get any support. The "national" framework certainly seems to have some strong regional variations so I'll try to find out what our local situation is and do some more research before deciding whether or not to launch into this minefield.

 

[Not so Rosy]

Both my Mum and Dad got CHC. Neither had any other health needs apart from those connected with Dementia. In both cases it was Social Workers who pushed for them to be assessed.

 

[PeggySmith]

Where we live, CHC is reviewed quarterly - MIL's next review will be around Christmas. I also just remembered that, after I got the call to say she had been granted CHC funding, I spoke to the advocate who told me that we were "lucky" and some local authorities wouldn't have given it because she only had one "severe".

 

[geum123]

The "national" framework certainly seems to have some strong regional variations

Hi Florriep,
The National framework for England doesn't vary, it's the interpretation by the MDT that
is a postcode lottery.
Wales has a framework based on the English system, though they have changed a few of the domain scores.

Good luck.

 

[geum123]

One thing to take into account if you are considering paying someone to help is what it will cost. CHC when granted is reviewed on a yearly basis and can be removed there and then. You may get CHC for years or you could be unlucky and find you only get it for 12 months.

My solicitor took my Dads case on, on a "no win no fee" basis.
So if we had lost it would have cost me nothing.

For me it was more a point that the NHS had gone back on its promise.
Dads generation paid in and were promised NHS care from cradle to grave.

 

[Saffie]

This thread has finally made me get up from the computer, pull out the CHC application file - pretty big - on the application which came to a dead end on May 6th this year.
That was when when the CHC team cancelled the Full assessment the following day - but only told me when I rang them to let them know my daughter would be attending with me.
That was the last I heard from the CHC.
I won't go on here, about the background etc. but just to say that I have now rung the CHC team and asked what is now happening.
The lady was just about to go to lunch but will looke up the file and contanct me later, either this afternoon or on Monday.
I have a feeling there will be a big red line across the file saying'Cancelled' or something similar as my husband died in June!
Not any more - so thank you Florriep.
Geum, you may well be hearing from me! Again!

 

[Florriep]

Thank you Geum for your cradle to the grave comment - that is so true. It makes me feel dirty and money grubbing going after this funding but you're exactly right that it was a promise to a whole generation of people who worked their socks off all their lives without making any claims on the state.

I wish you good luck Saffie and hope the process isn't too painful when you must still be very raw from losing your husband. You were treated despicably so close to the end of his life.

We've decided to appoint an advocate to make the application for us - the flat rate cost equates to roughly two weeks care home fees. After getting off to such a bad start with the DN we're very happy to hand the job over to someone else who can deal with it objectively - we have enough stress in our lives at the moment without looking for more!

 

[geum123]

I did hesitate at posting that comment florriep, as in the past it has opened a can of worms.

You are certainly not money grubbing, you are just looking out for your MiL. The whole process is extremely stressful and upsetting. Handing it over to an Advocate means you will have more time to concentrate on your Mil. Good luck.

 

[Wirralson]

In response to our request for an assessment, the District Nurse advised yesterday that a CHC assessment was pointless - we would not be eligible because (1) dementia is not covered by CHC,

Not true. Any condition is covered, provided the criteria for CHC laid down in the National Framework are met. (Some on this site may have differing views about the National Framework, but it is beyond dispute that if the criteria are met, tehn CHC follows.)

(2) MiL does not have a catheter (?!)

Irrelevant. Having a catheter does not of itself confer or remove eligibility to CHC. It may well contribute to entitlement.

(3) Social Services have not recommended it (unsurprisingly as she is not on their radar). The District Nurse reluctantly agreed to carry out an assessment next week, even though there’s no point and suggested we should move MiL to a nursing home.

Irrelevant. responsibility lies with the local NHS CCG (in England) or Health Board (Scotland and Wales). LA are involved indirectly at the decision stage as one issue is whether or not your MiL's care falls within the legal category of services they are allowed to provide.

We’re under no illusion that CHC’s a minefield, but still taken aback. Very worryingly the District Nurse seems to have reached her decision without looking at a shred of evidence, including that MIL is in the wrong setting. Is this normal for CHC? Do we need to get independent/legal advice to stand a chance of success? If by some miracle we manage to get through the initial assessment, how is the second stage determined – is it based on the District Nurse’s recommendation or a separate, more detailed assessment by different people?

There is a formal assessment process. Official NHS Link here. http://www.nhs.uk/chq/Pages/eligibility-assessment-for-nhs-continuing-healthcare.aspx - Internet searching will reveal more.

Your district nurse is talking out of a part of her anatomy not mentioned in polite company. What she has said is sufficiently inaccurate to justify a formal complaint to her employer and her professional body (usually RCN). I would be sufficiently concerned in your position to make a complaint at once and to have her removed from anything to do with your mother's case. Giving such inaccurate information is a serious breach of her duties, and should lead to suspension and administrative or disciplinary action.

There are specialist solicitors who deal with CHC cases, but I have no direct experience of them with CHC, as my mother was funded by another route (s117 MHA83). However, they will be able to give you accurate advice and also gather evidence to put in to the assessment. Your MiL's assets may be able to be used to fund this, but this is a specialised area of law and any Deputy/PoA holder would need to be able to justify such expenditure to the Court of Protection. That isn't especially difficult, but does require professional advice. It is not, as some have written, essential, but it can help, albeit at a price. Some do "no-win, no-fee" cases, but these need careful consideration.

The cost of Mil’s (nothing fancy) care has already run well into 6 figures and we’d really like the NHS to pick up the tab for something we think she’s entitled to! Any advice or experience you could share would be very welcome.

Your MiL may be entitled, or she may not. It depends on how the conditions she has score on the assessment.

W