CHC (Continuing Healthcare) support thread

maxy Taylor

New member
May 16, 2024
2
0
My late Husband received CHC and I have to say that the input from his CH and their exemplary records helped no end-so I advise everyone to regularly read the notes in your loved one's file, especially if you have been advised of an 'incident'-make sure that it is written up fully.

CHC Funding is written about, and questions asked, on a frequent basis on this Forum; people often list the problems their LO is experiencing and as heartbreaking as it is to know someone with Dementia if the symptom is classed as 'low needs' or 'Social Care' then CHC will not kick in. Your LO will need 2 'severes' to advance to an assessment. For example if a person is incontinent that would be classed as 'social care'. If a person's incontinence causes skin problems that requires cream to be administered twice a day-that would probably be classed as 'low needs' if the condition is controlled. Even that is open to interpretation as the NHS mantra is 'a managed need is still a need' but quite often that is ignored and a score is given as 'no needs'. If the skin was broken or bed sores developed then perhaps the decision would be medium needs. If the bed sores were frequent, or infected, or continuous and were difficult to treat then the decision could possibly be 'severe'. However, a 'severe' score could be given in the 'behaviour' domain if the PWD was aggressive when treatment was given whatever level the skin problem/bed sore.

In another example I know of one person on this Forum whose late Husband had a leg amputated; on his CHC checklist his mobility did not receive a severe score even though his mobility was zero and he had to be hoisted from bed to chair etc. Puzzled? Yes, me too! The crux of the matter was that he was not violent/or aggressive when being transferred. My Husband was scored much higher -even though he had two legs to walk on! Why? Because he fell a few times and was very shaky when walking. The falls were not serious enough for Hospitalisation but he needed a Carer with him at all times-not just only for the walking but because he was a danger to other residents. There was concern that his aggression was out of control at times and, if left on his own, it was possible he could inflict harm on others. So, the walking problem had a knock on effect to other domains i.e. cognition (no understanding that he needed help to walk) and behaviour. Pete scored 'severe' in behaviour and cognition and 'high' for mobility.

The thing is when being awarded CHC funding it appears to be all about intensity/complexity and unpredictability. To use my late Husband as an example again-he could start the day full of smiles (although that was quite rare:eek:) then as soon as personal care started he was punching, pinching, trying to bite and screaming. The point being that sometimes he was ok-sometimes not. However, no-one managed to discover what the trigger was. Again this illustrated complexity/ unpredictability and intensity-adding to the 'severe' score in 'behaviour'

Now in case anyone thinks that I am voicing my own opinions on why CHC Funding should be/should not be awarded-I'm not. I think the standards are open to interpretation; not just variances between each CCG but also the way individuals 'read' the domains. It's a scandal -I have no ideas how it can be resolved but I hope this probably over simplified explanation may just help a bit.

Keep fighting everyone.
 

maxy Taylor

New member
May 16, 2024
2
0
Its an absolute scandal. I've been fighting hard for my mother and ended up receiving nursing care which is paid for. However, she still pays for the rest of her care which is insane. It seems impossible to receive CHC how poorly does one have to be. The whole system surrounding care homes boils my blood something has to change it's very wrong
 

Chizz

Registered User
Jan 10, 2023
4,017
0
Kent
Yes it is @maxy Taylor
The "system" is designed t pay as little as possible as slow as possible, if at all. It wouldn't be so bad, but many regions do not follow the rules and try and put applicants' families off. They're sometimes quite brazen about it too!
 

Dave63

Registered User
Apr 13, 2022
480
0
Yes it is @maxy Taylor
The "system" is designed t pay as little as possible as slow as possible, if at all. It wouldn't be so bad, but many regions do not follow the rules and try and put applicants' families off. They're sometimes quite brazen about it too!
Imagine going to the GP or A&E and being told you will only be given a certain amount of care and you'll need to pay for anything which is social in nature and despite the fact your head is hanging off your health needs are not really that bad.
 

albo

Registered User
Jan 24, 2024
20
0
@albo
Restricting answer to CHC.
The concept of hotel costs relates to the 2011 Dilnot report where there were 2 financial caps, a lifetime cap on care and an annual cap on hotel costs.
None of the financial proposals have made legislation, a review is due by Oct 2025.

Currently CHC can be provided in a residential home with all costs covered or at home with care costs covered with, unlike residential care, AA not forfeited
Thanks
 

spirituscorpus

Registered User
Sep 4, 2023
40
0
Another CHC question I'm afraid.

Mum has a 3 month review coming up.

She was originally fast track discharged from hospital as they felt her health was rapidly deteriorating and awarded CHC without any fuss.

Mum had recovered from her pneumonia and had no other active illness. The consultant and doctor at the hospital did not explicitly say she was "end of life" but told me that due to her age (95) and refusal to eat in hospital that she had days, weeks or a few short months left.

Mum was moved to a care home and was given a bed on, what I presumed, was the palliative care floor but is actually called the nursing floor.

During her 5 wk stay in hospital she had decreased energy levels and slept most of the time. This lethargy and weakness continued during her first few weeks in the care home ,however, slowly, with better encouragement from the staff to eat mum began to eat more regularly and more often.

Her food intake is still less than when she was at home and she has lost a considerable amount of weight and was only 8.5 stone before all of this began

Although energy levels have improved significantly her mental health has deteriorated.
Her ability to communicate has all but disappeared and she is now doubly incontinent and immobile. She also suffers from AMD and is registered as blind (Severely sight impaired).

She has lengthy periods of agitation and this presented itself even when she was in bed. The last night in hospital she fell out of bed and so when she moved to the care home they had the bed rails up.

In the care home she would still manoeuvre around the bed at night in all types of strange positions which ultimately led to her falling out one night and banging her head. Since then, the bed rails have been dispensed with, the bed lowered to the floor and crash mats by the side of the bed.
To help combat the agitation she is given a sedative as and when needed but the staff feel she needs something else to help offset the agitation and make her more manageable.

Mum is not on any dementia medication.The feeling is that if they cannot succesfully make a medicinal intervention in her behaviour then she may well be moved to an EMI.

She's not aggressive but is at risk of falling out of her chair during her agitated phases.

Please can I ask what you think is likely to be flagged during her CHC review? I have been told during the phone call that mum is now not considered to be end of life and therefore her needs going forward need to be better assessed.

Thanks in advance
 

Palerider

Registered User
Aug 9, 2015
4,178
0
56
North West
Another CHC question I'm afraid.

Mum has a 3 month review coming up.

She was originally fast track discharged from hospital as they felt her health was rapidly deteriorating and awarded CHC without any fuss.

Mum had recovered from her pneumonia and had no other active illness. The consultant and doctor at the hospital did not explicitly say she was "end of life" but told me that due to her age (95) and refusal to eat in hospital that she had days, weeks or a few short months left.

Mum was moved to a care home and was given a bed on, what I presumed, was the palliative care floor but is actually called the nursing floor.

During her 5 wk stay in hospital she had decreased energy levels and slept most of the time. This lethargy and weakness continued during her first few weeks in the care home ,however, slowly, with better encouragement from the staff to eat mum began to eat more regularly and more often.

Her food intake is still less than when she was at home and she has lost a considerable amount of weight and was only 8.5 stone before all of this began

Although energy levels have improved significantly her mental health has deteriorated.
Her ability to communicate has all but disappeared and she is now doubly incontinent and immobile. She also suffers from AMD and is registered as blind (Severely sight impaired).

She has lengthy periods of agitation and this presented itself even when she was in bed. The last night in hospital she fell out of bed and so when she moved to the care home they had the bed rails up.

In the care home she would still manoeuvre around the bed at night in all types of strange positions which ultimately led to her falling out one night and banging her head. Since then, the bed rails have been dispensed with, the bed lowered to the floor and crash mats by the side of the bed.
To help combat the agitation she is given a sedative as and when needed but the staff feel she needs something else to help offset the agitation and make her more manageable.

Mum is not on any dementia medication.The feeling is that if they cannot succesfully make a medicinal intervention in her behaviour then she may well be moved to an EMI.

She's not aggressive but is at risk of falling out of her chair during her agitated phases.

Please can I ask what you think is likely to be flagged during her CHC review? I have been told during the phone call that mum is now not considered to be end of life and therefore her needs going forward need to be better assessed.

Thanks in advance
Hi @spirituscorpus

Its all extremely frustrating and I can appreciate where you are at. The issue is that asking online is difficult to answer, because obviously no one knows fully your mums situation and what constitutes a 'primary healthcare need' in her situation. What I will say is that you do need to do some homework and look at the domains and then consider the four key characteristics:

1. Nature describes the particular characteristics of an individual’s needs (which can include physical, mental health or psychological needs) and the type of those needs. This also describes the overall effect of those needs on the individual, including the type (‘quality’) of interventions required to manage them.
2. Intensity relates both to the extent (‘quantity’) and severity (‘degree’) of the needs and to the support required to meet them, including the need for sustained/ongoing care (‘continuity’).
3. Complexity is concerned with how the needs present and interact to increase the skill required to monitor the symptoms, treat the condition(s) and/ or manage the care. This may arise with a single condition, or it could include the presence of multiple conditions or the interaction between two or more conditions. It may also include situations where an individual’s response to their own condition has an impact on their overall needs, such as where a physical health need results in the individual developing a mental health need.
4. Unpredictability describes the degree to which needs fluctuate and thereby create challenges in managing them. It also relates to the level of risk to the person’s health if adequate and timely care is not provided. Someone with an unpredictable healthcare need is likely to have either a fluctuating, unstable or rapidly deteriorating condition.

So for example a good point to argue is that of cognition in someone with advancing dementia as severe, you then need to think how cognition impacts on the four key characteristics above. Repeat this for the other domains. It is also important to remember that well managed needs are still needs under the CHC guidance which is often conveniently overlooked by some ICB's, also the place of care is often argued as a reason to not grant full CHC funding, under the guidance this is irrelevant.

To be honest I'd had enough of having to fight mums corner and got an advocacy firm involved, which is costly but saved me a lot of time having to dig through a 1000 pages of care and GP notes and assimilate evidence. In the end when mums money was reimbursed the compound interest that was also paid covered most of the legal fees.
 

albo

Registered User
Jan 24, 2024
20
0
Imagine going to the GP or A&E and being told you will only be given a certain amount of care and you'll need to pay for anything which is social in nature and despite the fact your head is hanging off your health needs are not really that bad.
You've summed things up well there.It's sad isn't it people's bodies have broken down bit by bit because of a disease and you've got all of these hoops to jump through