Dementia and NHS Continuing Health Care

Robinette

My mum had her own home and investments when she was diagnosed with dementia back in 2008. She spent some time in an assessment unit and was then moved to a dementia care home, at which time we were looking at purchasing an insurance bond to guarantee that her fees would be paid for the rest of her life; however, we were advised that all her fees would be paid under continuing care. This was a total surprise...we were not even aware that such a scheme existed.


In my mind I question how she qualified back then when she was still mobile, able to communicate and continent (obviously I did not question this with the CCG that made the decision!), but her needs quickly became more complex and perhaps this was taken into consideration.

Pricivius

In my experience, the assessment for CHC varies across the country. As far as I can tell, it depends on the resources of the local authority and the time of year you apply as to how much is left in the pot. I presume someone will tell me it's not true, but that's more or less what our local authority confirmed to me.

My beloved step-father was assessed twice when he had a rare form of dementia. Fortunately, he was otherwise medically fit and as his dementia was not-treatable, he took no medication whatsoever. He was doubly-incontinent, had suicidal tendencies, an obsession with fire, an insatiable appetite, an inability to communicate effectively (his answers were arbitrary) and was prone to falling and then refusing to get up. These were all social needs and we had no help in providing the care and supervision that he needed 24/7.

I remember the assessments well. My favourite was when he was deemed not to be a risk to himself or others. He set fire to the house twice and would try to walk in front of lorries when we went out. He also made a noose and hung it from the bannisters. I asked for examples of being a risk to oneself and others if those were not sufficient but they were unable to provide any. At that point, I realised the whole thing was a farce. Of course the funds are limited, I realise that, but when someone clearly ticks the boxes but they refuse to tick the boxes, it's a waste of everyone's time even having the boxes and going through the whole charade.

Good luck with your caring role - it was the hardest thing I have ever done.

Morglin

My mum, with Dementia, had to pay - to get NHS funding, a person has to have extreme medical problems, and need constant nursing, as opposed to just being looked after.

Lin

CommunityCareMG

Hi all,
As succinctly as possible, I hope the following is useful but the law surrounding care home charging, NHSCHC, mental capacity and s117 aftercare (all of which are being touched upon in this thread) is very complex.
Firstly, to avoid confusion, the posts referring to relatives being sectioned under the Mental Health Act and any issues surrounding capacity are not covered here.The posts referring to being sectioned and not receiving statutory funding because they were under the wrong section, are a reference to something called s117 aftercare.Briefly, you may receive care paid for by the state under s117 if you have been sectioned under s3 of the MHA.It is of course not as straightforward as that but it is important to note that s117 is a completely separate funding stream to NHSCHC, involving entirely different criteria for eligibility, and the two should not be confused.
If NHSCHC is granted, a person's financial assets are irrelevant.E.g. if they are in a home, the NHS will pay the fee in full.
NHSCHC itself does not depend solely on someone's diagnosis.Therefore, because person A has dementia and is eligible for funding, does not mean person B with the same diagnosis is automatically eligible and vice versa.
Someone with dementia who is otherwise physically able could potentially still qualify. In my experience, dementia patients are often more at risk to themselves (and possibly others) if they are still mobile and, for example, wander off. It seems counter-intuitive when compared to their peers who might appear on the face of it to be "more ill". This risk to themselves is relevant to the NHSCHC decision.
NHSCHC eligibility is actually a legal test and not, as the impression might be on occasion, a judgement call from the assessor/panel.There is therefore a correct way for such decisions to be made.
The test is now contained in the National Framework for NHSCHC.An explanation in full is not possible without eating up too much space in this forum but if you are interested, you can download this Framework from the gov.uk website – 'googling' it might be easiest.
The process for assessment is briefly: Checklist (initial assessment); Full Assessment (using a document known as a Decision Support Tool); Panel decision.
You can appeal decisions.
My experience is that decisions made for Dementia patients in particular, are often very poor.Challenging such decisions can often be a lengthy process and it is very rarely an argument about the facts of the patient and their needs, but an argument about how the panel and the assessors used that information to reach their decision.
The Decision Support Tool (or DST) is also a useful document you may wish to read as it helps to explain the assessment itself and what factors are taken into account.
My apologies for the length of the above – so much more to be said as well.
You can ask for a NHSCHC assessment review to be done at any time.If your father does move into a home, the home should routinely consider whether someone might be eligible and initiate the assessment process. If eligible, they do review it annually and can decide someone is no longer eligible.
Kind regards.

Morglin

I still have the assessment forms for my mother, after a 3 hour assessment, and the chart categorically states because she wasn't tube feb, itravenrously medicated, or 24/7 bed bound, and requiring nursing, she wasn't eligible for NHS funding.

I was told I could appeal, but the decision wouldn't be overturned.

The whole system was and is a farce.

Lin

DanHarb

Hello, sorry to hear about your Dad's situation. My name is Dan and for over 10 years I have run a free continuing healthcare specialist advocacy service for Age UK in Oxfordshire. We have experience of obtaining continuing healthcare for hundreds of people including my own mother.


You've received some good advice already and I would concur with a lot of the replies to your post, however it is important not to put yourself in a 'box' by comparing yourself to others in similar circumstances. The reason is two-fold; firstly continuing healthcare is never awarded on a diagnosis but on the overall combination of health and social care needs, so it is possible for somebody with a diagnosis of dementia alone to be eligible if the impact of that dementia causes their care needs to be particularly intense or unpredictable.


Secondly, having worked in continuing healthcare for over 10 years I am sorry to say that it is still a complete postcode lottery - last week's national stats for quarter 4 confirm this fact. Your Dad could be assessed in two different parts of the country and be turned down in one, and found eligible in the other - even though the definition of a primary health need is the same in both!

Anyway, we have written a comprehensive set of guidance around NHS continuing healthcare called the Navigational Toolkit which is full of practical guidance around how to request an assessment, how to prepare, your rights etc. Age UK Oxon have set up a social enterprise called 'Beacon' to distribute the Toolkit nationally.

I would strongly recommend you download a copy from the Beacon website - just google 'Beacon continuing healthcare' or otherwise I'd be happy to email you a copy. Just to be clear - this is free and it has been written by Age UK Oxfordshire's caseworkers.

Good luck and all the best with this.

Dan

growler834

Person_one wrote: »

Its not about how close the person is to the end of their life, its about what their care needs are and what sort of expertise is needed to provide that care.

I completely understand why family members really want their relatives to screen in for CHC, but if everybody who needed any care was funded by the NHS can you imagine the bill?

Not getting CHC doesn't mean not getting care, it just means it will be funded in accordance with the social care system, not the NHS.

I understand all you say however dementia patients get the raw end of the deal (just read the Talking Point Forum) & it is also a postcode lottery - I know of someone in another part of the country who is EXACTLY like MIL and they have been granted CHC. When the two nurses at MIL's home & the social worker couldn't agree with each other over her needs we were not impressed. We didn't expect MIL to get it whilst she was still being hoisted into a chair and talking gobbeldygook to everyone but now she is in bed 24/7 & ALL her needs are having to be cared for we hoped that she would be eligible.
The irony (a very painful irony) is that 2 months ago my mum was granted CHC (unbeknownst to us) because she was hoping to be sent home from hospital to die of ovarian cancer that had gone to her spine and paralysed her (within the space of 4 weeks). She never made it home as she died in hospital a week later (the day dad got the unexpected letter to say she was granted CHC). She was under the same NHS trust as MIL and would have needed the same care as MIL (except for pain medication) - both were dying - so why does one qualify & the other doesn't?
Having looked after MIL for 4 years until she went into the nursing home & then looking after mum and seeing them both deteriorate in front of my eyes (mum in half the time than MIL) I've lost the will to fight the CHC battle - but all the best to those who do.

PurpleJay

My mum had progressive vascular dementia and died on 9th June. She had a stroke 10 years ago which affected her mobility and things gradually deteriorated from there. Prior to her admission to a care home 2.5 years ago she had been in hospital 3 months. The DST was done in hospital and she received full CHC funding. She did have very complex health needs.

I won't rehash it all here at the moment as it is to upsetting but if you have a look on the Alzheimers society forums - talking point, you can search for my posts as Purplejay. There is a thread called 'a beginners look into... CHC' in which I explain the assessment in some detail. I hope you find it and it helps in some way. You may need to join to search but I am not sure. I found the forums enormously helpful in the early days although I haven't posted for some time.

Good luck with everything.

margaretclare

bujin wrote: »

Should have elaborated as someone always jumps to the wrong conclusion. No Dad has no capacity at all, he needs every decision made for him every care need either done or assisted by us. He no longer knows who we really are and when I say it might not be working, when you're considering a Care Home for your parent for me anyway it's the absolutely last resort. It's no longer what's best for them any longer because you can't really argue that a care home will be beneficial to anyone but us. It will be very disruptive and challenging, confusing and distressing for him. Some of my siblings can cope and some can't and we are at the point where we may not be able to continue ifit's down to one of us.

Thanks for the other comments, I didn't think patients with a sole diagnosis of Dementia would qualify and other than that Dad's as fit as a fiddle so I don't think he will unless as you say he develops an ongoing physical problem.

Thank you for clarifying this. I am sorry for your situation and that of your Dad.

The problem is that dementia is not recognised as a 'physical illness'. This sounds crazy when you think of the actual progressive loss of brain tissue. Isn't someone 'ill' if they have only half the brain tissue they had? Isn't that 'physical'?

Errata

DanHarb wrote: »

Secondly, having worked in continuing healthcare for over 10 years I am sorry to say that it is still a complete postcode lottery - last week's national stats for quarter 4 confirm this fact. Your Dad could be assessed in two different parts of the country and be turned down in one, and found eligible in the other - even though the definition of a primary health need is the same in both!

.

Dan

It would be helpful if you could post a link to the LA league table for CHC awards stats. I believe it still exists but don't have a note of the URL.
IIRC the difference in the number of CHC's awarded between the top of the table and the bottom is pretty outrageous.