CHC Funding removed after 2 1/2 years

[booziefluziesuzie]

Mum was assessed and awarded full CHC funding in July 2015.

We have had 3 reviews since then and funding has continued to be awarded.

At the last review (25th July 2017) the recommendation was that funding should be removed. The person said this was due to the fact that as mums dementia has progressed she is now less 'difficult' to manage, and that the care home have put things in place to manage mum and reduce chances of accidents etc.

As a family we are gutted, we cannot believe that they could remove funding as mums dementia gets worse. She practically sleeps all day, cannot walk without the aid of 2 people, can only feed herself finger food and only when prompted, is drastically under weight (BMI 15) - the list goes on - she has deteriorated significantly since her first assessment so we cannot understand why funding would be removed.

I have not been given a copy of the last assessment or official reasons for removal - I have asked for copies and when I received them will start to prepare an appeal.

Any help or advice would be greatly appreciated.

 

[nitram]

The person said this was due to the fact that as mums dementia has progressed she is now less 'difficult' to manage,

Do you agree that her challenging behaviour has considerably decreased since the previous review?

the care home have put things in place to manage mum and reduce chances of accidents etc.

You could use the 'a well managed need is still a need' argument, I would not hold much hope that this would succeed.

As you say you will have to wait for some documented reason for the withdrawal of CHC.
Were you involved in any way in the reassessment?

 

[nitram]

@booziefluziesuzie
Another thing to bear in mind, only relative if your Mum will become self funding, care homes receive more cash from a self funder than a CHC funded person.
Maybe financially beneficial if they say she has become easier to handle.

Any arguments you put forward must be backed up by evidence - you took a friend to visit her and the friend remarked on how difficult she was, helps if the friend had personal experience of dementia.

 

[booziefluziesuzie]

Do you agree that her challenging behaviour has considerably decreased since the previous review?



You could use the 'a well managed need is still a need' argument, I would not hold much hope that this would succeed.

As you say you will have to wait for some documented reason for the withdrawal of CHC.
Were you involved in any way in the reassessment?

I don't think that her challenging behaviour has considerably decreased but I believe that her needs have changed - I have made notes of all the scores from all the assessments which does prove this, she still scores between moderate to severe in 9 of the 11 categories

 

[booziefluziesuzie]

@booziefluziesuzie
Another thing to bear in mind, only relative if your Mum will become self funding, care homes receive more cash from a self funder than a CHC funded person.
Maybe financially beneficial if they say she has become easier to handle.

Any arguments you put forward must be backed up by evidence - you took a friend to visit her and the friend remarked on how difficult she was, helps if the friend had personal experience of dementia.

thank you I will bear this in mind and yes she will become a self funder but at £890 per week she wont be self funding for long !

 

[nitram]

I have made notes of all the scores from all the assessments

You have to concentrate on the score(s) that changed the assessment, other are to some extent irrelevant.
Also domains that can give a priority need need to be carefully examined.

 

[booziefluziesuzie]

You have to concentrate on the score(s) that changed the assessment, other are to some extent irrelevant.
Also domains that can give a priority need need to be carefully examined.

The main change was behaviour went down from severe to high - I have done a little chart which shows the scores per assessment - so she went from 2 severs to 1 (cognition) but stayed the same with 2 in high (communications and nutrition) however for moderate she increased from 4 areas to 6

 

[nitram]

[

The main change was behaviour went down from severe to high - I have done a little chart which shows the scores per assessment - so she went from 2 severs to 1 (cognition) but stayed the same with 2 in high (communications and nutrition) however for moderate she increased from 4 areas to 6

You have to challenge the behaviour high
Unless you can get a severe or priority on another domain!!!

 

[booziefluziesuzie]

[


You have to challenge the behaviour high
Unless you can get a severe or priority on another domain!!!

I did question the nutrition at the time and with mums having a BMI of 15 they said that although her weight is low it is stable they also say she can feed herself but I cannot believe this - I am meeting with them tomorrow.

 

[nitram]

they also say she can feed herself but I cannot believe this

Documented care home notes as evidence, for or against?

 

[booziefluziesuzie]

Documented care home notes as evidence, for or against?

not sure until I meet them tomorrow

 

[lemonjuice]

It seems the forms are indeed structured to make it really difficult to qualify I know when people have a stroke, they are considered at lower risk for falls as they are generally moved down a category.

I also think funding is a real problem and they're trying to make it harder ad harder to qualify. I know someone who's been told her mother won't qualify for FNC next time ( let alone stand a chance of qualifying for CHC) as she's now 'fully fit' after breaking her hip. Apart from her dementia she's prescribed Warfarin for heart problems and has kidney disease. If not 'health needs' what are those conditions.

My own mother was only recently refused Fast Track funding, which I'd applied for in view of her deteriorating condition. She was refused because it couldn't be certain she was in the last 6 months of her life.
She died yesterday.

 

[booziefluziesuzie]

It seems the forms are indeed structured to make it really difficult to qualify I know when people have a stroke, they are considered at lower risk for falls as they are generally moved down a category.

I also think funding is a real problem and they're trying to make it harder ad harder to qualify. I know someone who's been told her mother won't qualify for FNC next time ( let alone stand a chance of qualifying for CHC) as she's now 'fully fit' after breaking her hip. Apart from her dementia she's prescribed Warfarin for heart problems and has kidney disease. If not 'health needs' what are those conditions.

My own mother was only recently refused Fast Track funding, which I'd applied for in view of her deteriorating condition. She was refused because it couldn't be certain she was in the last 6 months of her life.
She died yesterday.

I am so sorry for your loss.

I think that they are under pressure to save money however that doesn't help people like your mum and mine and our families who are under enough strain having a family member with this horrible disease.

 

[booziefluziesuzie]

I have contact CHC and told them I want to appeal the decision and would like a copy of the assessment and reasons for decision in order for me to prepare our appeal. They are refusing to deal with me because we don't have POA for mum - they say mum must request the info herself in writing (what a joke) - Based on the fact that mum is no longer challenging I have asked for a reassessment of care (with the hope of moving her to a nursing unit of the home and away from the horrible atmosphere of the EMI unit) I am feeling so deflated and down and really don't have any energy to fight this.

 

[nitram]

they say mum must request the info herself in writing

Any chance that if you printed several copies of a letter from her to the CHC asking for details and also authorise you to act on her behalf she could sign one? The letter could ask for confirmation of her agreement for you to act for her.

Would she be able to understand that she was signing a request for the government to (continue to) pay for her care through the NHS, if so have a carer present to act as witness if it becomes necessary.

I think you said that cognition was a severe so CHC may not accept this, still worth a try, they may even accept the request without checking her assessment. .

 

[booziefluziesuzie]

she would be unable to hold a pen so cannot sign her name, she has no understanding of anything to be honest.
I spoke to a social worker who visited mum yesterday to complete her Dols review and she said they may accept the Dols assessment as I am mums named advocate - I am sending the NHS a copy today.
The social worker was shocked as how bad mum was, I thought mum slept all day as she never wakes up during visits however social worker says that mum is not sleeping she has 'withdrawn' Again I wonder if its due to the unsettling surrounding of the EMI unit.

 

[lemonjuice]

I thought mum slept all day as she never wakes up during visits however social worker says that mum is not sleeping she has 'withdrawn'

My mother was like this for the last 3 years. Sometimes she had her eyes closed as though asleep and others she just stared into space, but rarely ever reacted to her environment or people.

I compared it to 'locked-in syndrome', but possibly somewhat self-initiated? If she didn't 'see it' and 'shut her eye', she didn't have to accept it and face the reality of her situation. Of course over time the brain deterioration will have become even worse and it will have become 'obtunded', a genuine inability to react and respond to one's environment.

 

[Henry Ford]

My sister had vascular dementia and never qualified for CHC. In the last years she could not walk, speak, move, domanything at all for herself except eat finger food and eventhat was inconsistent, recognise anyone, make her feelings or wants/needs known. She was doubly incontinent, treated for kidney failure, had heart failure, bladder cancer, her swallow reflex was going and she would choke. It was terrible.

She never scored highly enough in the CHC assessments because she was 'managed'. Thankfully, because she was not difficult she was not in an EMI section.

 

[booziefluziesuzie]

To watch a loved one deteriorate to such a state is horrendous.

I have now requested a re-assessment of mums needs. I feel that she would benefit from being removed from the EMI setting and onto a general nursing ward.