NHS Continuous Care Meeting for Mum

jimbosmith

Registered User
May 10, 2013
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Just had the meeting and i'm not hopeful.

According to them my mums 'behaviour' is not a priority, it is more of a 'severe' or a 'high'.

The 'priority' definition is:

'Challenging' behaviour of a severity and/or frequency and/or unpredictability that presents an immediate and serious risk to self, others or property. The risks are so serious that they require access to immediate and skilled response at all times for safe care.

If I wasn't here to guide her she would burn the house down and a whole lot more before she got to that point. It's as though, well she's got you to do that for her, so there's no need for us.

Absolutely p!$$ed off!!
 

missmarple

Registered User
Jan 14, 2013
204
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Hi Jimbo.
Does your mother score severe for cognition? If she does, and she also scores severe for behaviour, she should qualify as 2 "severes" are enough to get her CHC.
I got CHC for my Dad with those 2 domains as severe.
The CCG assessors tried to argue his behaviour was not severe (they could hardly argue his cognition wasn't, he can't even remember that my brother, who lives with him, is his son). This is apparently a common tactic with CCGs when assessing dementia patients- downplay the behavioural to ensure the overall score isn't high enough.
I stayed polite but at the end oft he meeting stated that I disagreed with their assessment. I had taken care in advance to gather examples of all his difficult behaviour episodes. The assessor said she would check with her manager, and after about 3 weeks he was awarded CHC.
My advice be stand firm, gather as much info as you can and do not be scared of disagreeing with their assessment.
The organisation"Care to be Different" has a very good website and I gathered much useful info from it when I was applying for CHC.
 

missmarple

Registered User
Jan 14, 2013
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I should add that my Dad is at home and has all day carers who started because his behaviour was unmanageable and admission to a home had failed because of that. The CHC monies pay for his carers.
 

jimbosmith

Registered User
May 10, 2013
77
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I should add that my Dad is at home and has all day carers who started because his behaviour was unmanageable and admission to a home had failed because of that. The CHC monies pay for his carers.

Hi Missmarple

Thanks for the reply.

Cognition was severe. It was Behavious she was undecided on 'high' and 'severe' but I was trying to argue 'Priority' as I thought that was what required.

I was thinking that she does require a 'skilled and immediate' response as we know when it is about to happen and pre-empt it happening. An average person not used to it would not see it happening.

Do you mind me asking what key points you gave?

Thanks again for your advice. I ill take a look at that site.

Thanks
Jimbo
 

AlsoConfused

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Sep 17, 2010
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Also ask ****** Healthcare for your free 90 minutes consultation with a paralegal / healthcare case worker and go through their free Navigation Tool stuff too ...

We're only just past the Checklist stage (which we got through). Share your unhappiness over the process though.

The assessor ODDLY ignored what we said as a family, what the nursing home rep said and the hospital's documents, deciding Mum qualified only as a B rating on Communication.

Mum might be signalling something by her non-verbal behaviour but what she actually means by the particular behaviour will vary widely. Wants the loo? In pain? Tired? Worried by people over there or close to her? Wanting to assert herself? Annoyed at being helped? Angry at being ignored?

Mum's very verbal in a "stream of consciousness" way but she can't say what she wants, needs, thinks or feels about anything and there's no correlation between her words and her behaviour.
 
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missmarple

Registered User
Jan 14, 2013
204
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Well my dad had had at least a year of very difficult behaviour by the time the meeting was help. In brief, he did things that put him ,and potentially others at risk, such as entering people's property, leaving his home early in the morning and getting lost, taking other people's property, taking stuff in shops (he got barred from Poundland!) and even eating other people's food in cafes (I'm leaving some stuff out to protect his dignity).
There are some buzzwords that play well in CHC assessments. They are intensity, unpredictability, complexity (so if the behaviour can be described in any of these ways so much the better).
Also quote back at them a key point of the Govt's paper on CHC "A met need is still a need". Just because you are running around averting crises and making sure your mum is safe, does not mean she does not have a need that the CCG has a responsibility to address.
It's sad we have to resort to cynical bureaucratic game playing, but if that's what it takes...
 

missmarple

Registered User
Jan 14, 2013
204
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Medication was also a factor. He scored moderate i think because his diabetes medication is crucial, his behaviour is a lot worse when his blood sugars are high. Other than that he does not have many needs and scored low in other domains.
I really think with 2 severes your mum is entitled to CHC.
 

jimbosmith

Registered User
May 10, 2013
77
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Medication was also a factor. He scored moderate i think because his diabetes medication is crucial, his behaviour is a lot worse when his blood sugars are high. Other than that he does not have many needs and scored low in other domains.
I really think with 2 severes your mum is entitled to CHC.

Thanks MissMarple and AlsoConfused

I was a little deflated coming out of that meeting but you have both given me a second wind with the info :)
 

DawnYorkshire

Registered User
Nov 4, 2015
1
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Employ Legal firm to secure continuous care?

Hello, my mother has LBD and after being cared for at home for 3 years is currently in a NHS medical unit. The consultant has advised it is the opinion of the all the medical team that it will not be possible to care for her at home. However he also advised they can do nothing further for my mum in hospital. From this we are expecting they will not offer continuous care.
My questions are :should we engage a specialist law firm to act on our behalf at this stage? Has anyone already gone down this road? Can anyone provide the name of a reputable law firm?
Any advice greatly appreciated! thank you
 

jimbosmith

Registered User
May 10, 2013
77
0
The email notification for this thread has come at the right time ...

My mum was awarded NHS Continuous Care so big thanks to all of you who replied and helped.

She only received the 1 high but the score overall was enough to put her in. My mum's care home played a huge part with what they had to say.

I had my first week of 5 days a week day care last week and my mood has just lifted. Weekends are still hard and we don't have anybody to wash her yet so my back is taking the strain.

I was discussing this with a relative and he mentioned that one option maybe to have a wet room installed in our house rather than a carer come in. Does anyone know much about this?

We did used to have a carer come in when my mum had 5 days a week standard care and whilst she was great personally, the company she worked for put tons of extra work on her and she'd often not get round in time. My mum now has to be ready earlier given that she is in a home further away than before.

The wet room may be better option also as my mum has started to 'wipe' everywhere.

As above thanks to all of you that gave me advice on the NHS funding.
 

stanleypj

Registered User
Dec 8, 2011
10,712
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North West
The email notification for this thread has come at the right time ...

My mum was awarded NHS Continuous Care so big thanks to all of you who replied and helped.

She only received the 1 high but the score overall was enough to put her in. My mum's care home played a huge part with what they had to say.

I had my first week of 5 days a week day care last week and my mood has just lifted. Weekends are still hard and we don't have anybody to wash her yet so my back is taking the strain.

I was discussing this with a relative and he mentioned that one option maybe to have a wet room installed in our house rather than a carer come in. Does anyone know much about this?

We did used to have a carer come in when my mum had 5 days a week standard care and whilst she was great personally, the company she worked for put tons of extra work on her and she'd often not get round in time. My mum now has to be ready earlier given that she is in a home further away than before.

The wet room may be better option also as my mum has started to 'wipe' everywhere.

As above thanks to all of you that gave me advice on the NHS funding.

So glad to hear this jimbo. I must say I haven't heard of anyone having a wet room installed with CHC funding. My understanding is that the vast bulk of the funding usually goes to fund carers. But there's no harm in making enquiries. I wouldn't even mention the idea of a trade off of carer hours.
 

Ellaroo

Registered User
Nov 16, 2015
161
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Liverpool
My wife's application was greatly assisted by the fact that two of the participants in the meeting (the District Nurse and the Head of Adult Mental health for our area) knew her really well. Will your mum have people who know her well present?

I was rec by sw to attend. I asked staff nurse and she confirmed with another nurse , only to attend if it goes to 2nd stage the full assessment for chc.
Sw told me it would benefit mum if i attended , especially as i visit everyday eg have washed mums hair as mum refusing or fighting staff . I also have noted nurses arent getting mum or arent able to clean her properly especilly after BM.
Psychiatrist and sw are extremely supportive of mum coming home to me with help am and pm.
 

jimbosmith

Registered User
May 10, 2013
77
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I just got a notification for the reply so thought I would update.

Things with NHS Continuous Care are going well although they are hard to get hold of via the telephone. However, for the last 2 months we have had a carer come in to wash mum in the morning. She is wonderful and my mum has taken well to her.

The owner of the care company came round to see if they could help us more including someone come in on a Saturday and Sunday. Anyway she said that I could let her know and she could carry some weight with Continuous Healthcare and they always respond to her. Right enough they did, the very next day.

My life as a carer is still hard but it has been such a relief with the help we have had. Think i'd have snapped without it by now.
 

Shedrech

Registered User
Dec 15, 2012
12,649
0
UK
Hi jimbosmith
power to the owner of the care company - so good to have her supporting you :)
 

jimbosmith

Registered User
May 10, 2013
77
0
Thanks to you both.

It is. She looked after her mother in law prior to starting the company. Sure, she is making more coins for herself, but she could tell where we was struggling but didn't realise what was available.
 

carolinej

Registered User
May 21, 2016
1
0
Dad in need of full time care

Hi my dad has dementia, he walks round the block, does not take keys and struggles to recognise his house of 40 years. He has care workers 3 times a day and alzimers club but tis getting to hard for the family. As everyone here knows the cost of a care home is madness. I have looked at the CHChecklist and he should get CHC. However what does it pay for, does it actually pay for the room rent of the home as well as care. He needs to be locked in 24/7 now, we are very worried about the costs involved.