CHC (Continuing Healthcare) support thread

Dave63

Registered User
Apr 13, 2022
451
0
So yesterday we instructed specialist solicitors (care to be different) to handle mums appeal. Will let you know how it goes.
 

Brizzle

Registered User
Mar 1, 2019
88
0
Well it’s been a roller coaster ride over the last few months and today has been no exception but Mum has finally been granted CHC due to her level of needs.
Earlier today I was told mum would only qualify for FNC and then 9 hours later I got another call from another CCG lady who had overruled the earlier decision following an in depth review of the medical notes contained during the assessment.

It has been a stressful few months fighting dear mum’s corner, and there have been a number of procedural ambiguities along the way where I have had to get mum a reassessment and continue to speak up where I thought mistakes were being made but finally the CCG have come to the right and just decision.

I am under no illusion that should mum’s needs have reduced by the 3 month review then the funding could be withdrawn immediately but if that happens and I feel the decision is unsound then of course I will fight mum’s case as always. Conversely I will not challenge any decision should I think it to be true and fair.

In the meantime I have 3 months to recharge my batteries de stress and dare I say it chill for a while !
 

Jaded'n'faded

Registered User
Jan 23, 2019
5,306
0
High Peak
Brilliant! I'm really pleased you 'won' though it shouldn't feel like that, should it?

I would love to see the figures for people who successfully get CHC who don't have any family or friends. I suspect it is nil.
 

Elle3

Registered User
Jun 30, 2016
712
0
Well it’s been a roller coaster ride over the last few months and today has been no exception but Mum has finally been granted CHC due to her level of needs.
Earlier today I was told mum would only qualify for FNC and then 9 hours later I got another call from another CCG lady who had overruled the earlier decision following an in depth review of the medical notes contained during the assessment.

It has been a stressful few months fighting dear mum’s corner, and there have been a number of procedural ambiguities along the way where I have had to get mum a reassessment and continue to speak up where I thought mistakes were being made but finally the CCG have come to the right and just decision.

I am under no illusion that should mum’s needs have reduced by the 3 month review then the funding could be withdrawn immediately but if that happens and I feel the decision is unsound then of course I will fight mum’s case as always. Conversely I will not challenge any decision should I think it to be true and fair.

In the meantime I have 3 months to recharge my batteries de stress and dare I say it chill for a while !
Fantastic news Brizzle, such a relief for you after all your hard work. I'm so glad you didn't just lie down and let them win. It really shouldn't be like this to get the care people deserve. Well done and enjoy your de-stress. x
 

Brizzle

Registered User
Mar 1, 2019
88
0
Many thanks to everyone for your kind words of support concerning mum getting her CHC funding. Sadly although mum is in the best place of care given her rapidly deteriorating condition it breaks my heart that she is still not at home. If she had not broken her ankle I feel she might just of managed another six months to a year in her beloved home with at least some quality of life. It doesn’t sound like much does it ?, but when as a family you get to this stage of an unforgiving illness , every last month or moment where you can see your loved one maybe laugh occasionally about something or have that rare moment of clarity is priceless.

Although both her mixed dementia and general health were steadily deteriorating bit by bit whilst living in her family home with 24 hour care I have never witnessed such a rapid decline in her condition than when she spent 3 months in hospital ,awaiting a nursing home placement for much of that time, after breaking her ankle. The extended hospital stay and leaving the place she had called home ever since being a newly married 19 year old I think did immeasurable damage to her already fragile wellbeing.

She is now in a wonderful nursing home and I could not ask for more but her decline continues a little more each time I visit. The dementia well being nurse has acknowledged that she is now well into the advanced stage of the disease and although one cannot put a “definitive “ time on such things is essentially in “end of life “ care.

Mum now has to be reviewed once again in 3 months and having been through the system I’m not that hopeful to be honest. Having said that I will be ready , recharged and prepared for the next hurdle. I really do not want to prejudice mums case going forward but what I can say is that I have learnt an immeasurable amount about this process due to literally hours upon of hours of personal research to the point I became totally consumed in getting mum a “ fair trial”.

The only advice I can offer at the moment is that to get a fair trial you may well have to put the CCG themselves on trial regarding their conduct and adherence to correct procedure and protocol from the very beginning at the checklist stage , to the MDT meeting, the DST markings and the final conclusions. I really cannot stress this enough , it is so important to make sure that the CCG and the CHC assessor are following the National framework guidelines to the word.

Oh ....and this is equally important....record everything...every last word , it is amazing how certain recollections of what” is said” and “ not said “ at crucial meetings can differ dramatically.

Wishing everyone at whatever stage of the CHC process they are on an unbiased, fair and just outcome.
 

Dave63

Registered User
Apr 13, 2022
451
0
Warning - Teaching granny to suck eggs mode activated :)

When it comes to the funding review the National Framework is explicit about reviewing only the package of care, NOT a persons eligibility. (plagerised from the Beacon site).
However, as you say, how much attention is paid to the framework is debateable.
 

Brizzle

Registered User
Mar 1, 2019
88
0
Yes indeed Dave63, I had seen that stipulation regarding the review procedure that should essentially be about seeing a person’s needs were being taken care of rather than their re eligibility. However having now received the completed DST and reasoning behind the final decision I am not too confident that will happen at the 3 month review.

They have made a point of saying mums “eligibility “ was only border line and that if her behaviour issues have reduced this “ May effect eligibility going forward “. In fact the general tone of the letter makes me think that mum will be going through a “retrial “ at the review rather than “ reviewing the package of care” as a primary objective.

The DST itself was full of errors and incorrect procedure once again, but I was expecting that. Given that mum has at least for now been granted CHC I will put any complaints regarding that on the “back burner” and only use it should a formal complaint against the CCG or an appeal for CHC be required. I think you have six months to do either of these things so no point in rocking the boat just yet imo.
 

Elle3

Registered User
Jun 30, 2016
712
0
Yes indeed Dave63, I had seen that stipulation regarding the review procedure that should essentially be about seeing a person’s needs were being taken care of rather than their re eligibility. However having now received the completed DST and reasoning behind the final decision I am not too confident that will happen at the 3 month review.

They have made a point of saying mums “eligibility “ was only border line and that if her behaviour issues have reduced this “ May effect eligibility going forward “. In fact the general tone of the letter makes me think that mum will be going through a “retrial “ at the review rather than “ reviewing the package of care” as a primary objective.

The DST itself was full of errors and incorrect procedure once again, but I was expecting that. Given that mum has at least for now been granted CHC I will put any complaints regarding that on the “back burner” and only use it should a formal complaint against the CCG or an appeal for CHC be required. I think you have six months to do either of these things so no point in rocking the boat just yet imo.
The thing to do now, is to continue to record everything that happens with regards to your mothers behaviour and health. Try to get the care home staff to keep recording any incidents, no matter how minor or serious and ask to see the records to make sure they are. Ask them every time you go in, if anything happened and then ask if they recorded it and make a note of it yourself, for your own records.

I found with the staff in my dad's care home, that they took for granted some behavioural issues and would fail to record them. I would be chatting to them and they would suddenly inform me about an incident that happened a couple of nights ago with my dad and when I asked if they logged it, they usually said no or they didn't know they should, this happened regularly with the night staff, who seemed to be not as well informed as the day staff. You have to very vigilant.

Good luck.
 

Brizzle

Registered User
Mar 1, 2019
88
0
Many thanks Elle for putting me firmly back on “ones toes” regarding this. I have indeed had a talk with the senior care home staff regarding mums challenging behaviour about 2 weeks or so ago and emphasised the importance of keeping regular and accurate records to which they assured me they were doing. However since then due to other personal life and family challenges unconnected to poor mum I have been less focused on what might be ahead,

You are absolutely correct in what you say and on my next visit this week I will ask to see the nursing homes behavioural logs for mum and continue to do so respectfully every 2 weeks until her next review date.

Yes I did realise the importance of the nursing home to keep accurate records hence my talk with them quite recently. However as mentioned due to other every day stresses and strains and the relief of finally getting mum CHC my mind has for the most part temporarily gone off the ball and may have remained that way in the short term until mums funding review . Not any more though Elle ...thanks to your experience, prompting and most valued input !
 

Elle3

Registered User
Jun 30, 2016
712
0
Many thanks Elle for putting me firmly back on “ones toes” regarding this. I have indeed had a talk with the senior care home staff regarding mums challenging behaviour about 2 weeks or so ago and emphasised the importance of keeping regular and accurate records to which they assured me they were doing. However since then due to other personal life and family challenges unconnected to poor mum I have been less focused on what might be ahead,

You are absolutely correct in what you say and on my next visit this week I will ask to see the nursing homes behavioural logs for mum and continue to do so respectfully every 2 weeks until her next review date.

Yes I did realise the importance of the nursing home to keep accurate records hence my talk with them quite recently. However as mentioned due to other every day stresses and strains and the relief of finally getting mum CHC my mind has for the most part temporarily gone off the ball and may have remained that way in the short term until mums funding review . Not any more though Elle ...thanks to your experience, prompting and most valued input !
Brizzle, you are very much allowed to de-stress after everything you have been through and make other things a priority for a while. Take care. x
 

Sooze54

Registered User
Jul 6, 2022
15
0
How do you go about getting an assessment?My Dad was assessed when he first when into NH in April 2014 but was turned down.His condition is so much worse now I think it's worth another try.Or would NH have to instigate this?
 

Sooze54

Registered User
Jul 6, 2022
15
0
A CHC checklist will make assessment covering elements of care - continence, breathing, mobility, medication, emotional needs, and cognition.
Even though my husband has most of these infirmities, he was turned down for NHS continuing care. And when I last saw him, he had a rapid deteriorating condition. That makes no difference as long as he's eating and breathing on his own.?
 

Moggymad

Registered User
May 12, 2017
1,314
0
Hi does anyone with experience of CHC funding know whether it will cover the cost of 121 care? D2A nursing home only lasted 4 days now back in hospital with a second fractured hip. Nurse lead said he needs someone with him 24 hrs & to have a think about that. (?) He has primary health care needs requiring monitoring from a nurse so from that respect we feel he should qualify although I am aware CHC is notoriously difficult to get but the 121 need doesn’t seem to be mentioned when I’ve googled it.
 

BigBill

New member
Oct 5, 2022
6
0
Hi Just reading through the last few messages, seems everyone has a fight on their hands.
I would like to outline my mother in laws position and history to see if anyone has any pointers.

we had more or less come to the conclusion( beaten into submission) , that all we could obtain from the council/nhs is 12 weeks care paid for, then we are on our own. History.
Mum
89 hasn’t been great for a while ,starting to show age catching up a year or so ago. Poor legs with nerve damage and other minor ailments
last March had a fall. Hasn’t walked since , bed ridden.Incontinent. Going down hill. Kidney disease, recently two cold attacks where the body temperature fell dramatically. Once at home & a doctor just happened to be there and once in the nursing home.

At first the council were excellent with the stay at home team swinging into action, beds , hoists etc eventually . four visits per day We were funded .


Long distance carer ( wife & sister in law ) respite needed after spending a couple of months there , nursing home found, council kicked off (big time) , they argued a nursing home was not needed , only a care home required was their message. About the only message we have had. Anyway after the two/three weeks in the nursing home it was clear, returning home wasn’t an option . The council couldn’t find any accomodation anyway. The bed & 4 visits etc was arranged by her manager.

various assessments. Always done without family, despite a specific request for a family member to be present.

After three attempts just received the Alzheimer’s diagnosis . No medicine , no point. . Mood change, very lucid at times,

so, our intention is to sell the house and pay the significant nursing home fee. £60k

Or….. is she on the description I have given eligible for continuing care? If it’s a long shot we won’t do it, just strikes me she is really an unwell old lady, has no money other than the house and she should be looked after. I pay my taxes!!!
 
Last edited:

canary

Registered User
Feb 25, 2014
25,279
0
South coast
Hi @BigBill and welcome to Talking Point.

The problem with dementia is that most of the problems associated with the disease are classified as social needs, not medical ones. Incontinence, loss of mobility, needing to be fed, loss of speech - all of these things are considered social care and as such are not eligible for CHC.

TBH, I agree with the SW, it does sound like your mum would be fine in a care home, so long as it is a specialist dementia home. My mum was in a dedicated dementia care home (often called an EMI home) and was fine right up to the end. They would deal with incontinence, resistance to personal care and even a bit of aggression. They would feed people by hand and even had hoists for those who had lost mobility. These sort of homes are also generally much cheaper than nursing homes.

I understand your annoyance with having to sell your mums home, but Im afraid that is usually what happens.
 

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