CHC (Continuing Healthcare) support thread

BigBill

New member
Oct 5, 2022
6
0
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.
Thank v Much for the reply ….
 

HelpInOut

Registered User
Oct 19, 2021
64
0
Social care, medical care, health care and nursing care.
Anyone like to define them?
What do they actually mean by " continuing healthcare needs"?
Obviously it's not the same as " continuing medical needs " because someone with those would need to be in hospital. Or would they?
When the say continuing healthcare, do they mean nursing care needs ?
If someone is in a nursing home then surely they have continuing healthcare needs? Nursing care is free, right?
One could argue that the" list of tasks to be done " ( (which is essentially what residential care plans are) could be loosely defined as social care, however elderly people who can't ( for whatever reason ) monitor their own wellbeing ( toilet habits, nutrition, fluid intake , skin integrity, hygiene) require far more than care itemised as tasks.
Their care is as much about awareness and prevention of potential problems as it is about the actual long-term problems.
Most Social carers have neither the trading nor the skills and experience to do that, therefore it requires a nurse or a healthcare assistant.
I'm not saying that carers don't have a place in residential homes, but I strongly believe that all residential homes should have at least one qualified nurse on duty for at least part of every 24 hr period .
 

Dave63

Registered User
Apr 13, 2022
397
0
various assessments. Always done without family, despite a specific request for a family member to be present.
Hi Bill,

I'm by no means an expert but we faced similar issues when our mother was unable to remain at home due to Parkinson's and dementia. It's important that you don't give up based on what you are told by social workers or others on what they view as your mothers likelihood of getting funding. There is a process which should be followed and it's set out in what's called the 'National Framework'. You can download a copy from the NHS website.

Before a social worker even begins talking about means tested funding they should firstly be carrying out a CHC funding checklist. This can be done by the social worker, GP or anyone medically involved with your mothers care. It simply scores your mum on several aspects of your mothers medical/physical needs. If the scoring is high enough it should then be forwarded to your local NHS trust for a full CHC assessment by a multi disciplinary team (MDT). That's when the real fun starts and you'll probably get the run around for months on end.

If the family wish to be a part of ANY assessment then they have to be, no if's, no buts. They are required to do this as per the guidance in the National Framework which I mentioned earlier. Do not take no for an answer.

If your mum is not entitled to full CHC then her entitlement to Funded Nursing Care should then be assessed. This is usually done as part of the CHC assessment.

The social care system is on it's knees and because of this you'll find social workers are struggling with the shear volume of cases they're expected to deal with, so it's pot luck on how involved the social worker wants to be with your mothers case. It's not necessarily their fault, but it's not your mothers fault either, so don't be afraid of standing your ground. Knowledge is power and I really recommend you thoroughly read the funding section of the National Framework.

Good luck
Dave
 

BigBill

New member
Oct 5, 2022
6
0
Hi Bill,

I'm by no means an expert but we faced similar issues when our mother was unable to remain at home due to Parkinson's and dementia. It's important that you don't give up based on what you are told by social workers or others on what they view as your mothers likelihood of getting funding. There is a process which should be followed and it's set out in what's called the 'National Framework'. You can download a copy from the NHS website.

Before a social worker even begins talking about means tested funding they should firstly be carrying out a CHC funding checklist. This can be done by the social worker, GP or anyone medically involved with your mothers care. It simply scores your mum on several aspects of your mothers medical/physical needs. If the scoring is high enough it should then be forwarded to your local NHS trust for a full CHC assessment by a multi disciplinary team (MDT). That's when the real fun starts and you'll probably get the run around for months on end.

If the family wish to be a part of ANY assessment then they have to be, no if's, no buts. They are required to do this as per the guidance in the National Framework which I mentioned earlier. Do not take no for an answer.

If your mum is not entitled to full CHC then her entitlement to Funded Nursing Care should then be assessed. This is usually done as part of the CHC assessment.

The social care system is on it's knees and because of this you'll find social workers are struggling with the shear volume of cases they're expected to deal with, so it's pot luck on how involved the social worker wants to be with your mothers case. It's not necessarily their fault, but it's not your mothers fault either, so don't be afraid of standing your ground. Knowledge is power and I really recommend you thoroughly read the funding section of the National Framework.

Good luck
Dave
Thankyou so much Dave for going to the trouble with the reply . We shrug our shoulders at the not being invited to attend, no point in starting a war . In the process of house selling & will keep a close eye on any changes which allow mum to be part of the system. I find it a bit of a shock that most of these things are just disallowed and are considered as social care .
She does get the funded nurses care , but the NURSING home gets that directly and anyway we’re not charging the full whack to start with , Thanks again
 

Suzysheep01

Registered User
Jan 14, 2023
195
0
Hi.
my mum has vascular dementia, most likely brought on by type one diabetes. Her short term memory has been affected, but she is still really chatty and can do most things herself ( until her insulin wasn’t given in a timely manner and she fell and broke her hip) .
long story short…. She was forgetting her injections and went into diabetic DKA which lead to a lengthy hospital stay where they tried to get her onto 2 doses of insulin a day. The district nurses will only visit twice a day so that’s what was needed. She only lasted 10 days at home again with carers and district nurses coming in before she fell in the night, went into DKA again and broke her hip.
she is now in a nursing home and back on her regular routine of insulin as and when needed.
would she be a good candidate for CHC as it’s purely down to the diabetes that she’s there , without it her dementia would be manageable at home for some time.
is it worth applying?
myself and my brother are LPOA for financial only. She is a self funder.

thanks for any info, words of wisdom!
 

Dave63

Registered User
Apr 13, 2022
397
0
Hi.
my mum has vascular dementia, most likely brought on by type one diabetes. Her short term memory has been affected, but she is still really chatty and can do most things herself ( until her insulin wasn’t given in a timely manner and she fell and broke her hip) .
long story short…. She was forgetting her injections and went into diabetic DKA which lead to a lengthy hospital stay where they tried to get her onto 2 doses of insulin a day. The district nurses will only visit twice a day so that’s what was needed. She only lasted 10 days at home again with carers and district nurses coming in before she fell in the night, went into DKA again and broke her hip.
she is now in a nursing home and back on her regular routine of insulin as and when needed.
would she be a good candidate for CHC as it’s purely down to the diabetes that she’s there , without it her dementia would be manageable at home for some time.
is it worth applying?
myself and my brother are LPOA for financial only. She is a self funder.

thanks for any info, words of wisdom!

Hi Suzy,
No way of knowing without your mum first having a CHC checklist assessment done to determine her current needs. Speak with the home with regard to arranging getting a checklist assessment organised. Any health care professional involved with your mums care can do the checklist and it's worth being present when it's being done. The checklist is simply a screening tool to determine if your mums needs fall within a certain criteria to warrant a full CHC assessment. If they do then the checklist is forwarded to your local CCG who are the ones who carry out the full assessment.

The CHC process is a minefield, and unfortunately there's a lot of reading you'll need to do in order to stand a chance of understanding what should happen, as opposed to what they will inevitably tell you will happen.

Dave
 

Dave63

Registered User
Apr 13, 2022
397
0
Couple of links to get you started:



The most important document is NHS National Framework which details how the process is supposed to work:


Dave
 

Dave63

Registered User
Apr 13, 2022
397
0
Thanks Dave. It looks like they can move the goalposts at any time!

And they will.
They will rely on the fact that most of us are blissfully unaware of how the CHC process is supposed to work. I can't emphasise enough how important it is to understand the process and how it's supposed to work, because they will try to tie you up in knots. They're relying on people giving up at the first hurdle.

Take a look at the checklist and see how you think your mum would score. To be eligible for a full assessment she will need to score:
  • Two or more As
  • Five or more Bs
  • One A and four Bs
  • An A in any of these areas: behaviour, breathing, symptom control, altered states of consciousness

Good luck
Dave
 

Alzheimer's Society

Volunteer Moderator
Apr 6, 2009
2,437
0
www.alzheimers.org.uk
Hi everyone,

It's Harriet here from the Dementia Talking Point team :)

We just wanted to let you know that there's a new thread here that's been set up by the Alzheimer's Society's brilliant CHC appeals team and CHC volunteers who have a wealth of knowledge and experience.

The purpose of the new thread is slightly different to this one - it aims to provide people with the tools to pursue an appeal should you wish to do so. You can also seek practical and emotional support, and share your own experiences of what's worked well.

You're very welcome to continue using this thread as a place to support each other. If you'd also like to access the support provided by the CHC team, you can do that at the link above.

Best wishes,

Harriet
 

Brizzle

Registered User
Mar 1, 2019
88
0
Nice to see a support appeals thread which no doubt will be very appreciated by so many,

However for those that are going through their loved ones first CHC asessment my main advice is to learn the National Framework inside out, and record everything. Once my local CCG became aware that a recording existed of what really happened at my Mum’s MDT meeting certain questionable decisions were overturned quite rapidly. .
 

Coffa

Registered User
Jan 3, 2021
11
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.
This is a really helpful post, as I'm preparing for health assessment for mum who has been referred for DST. Thank you :)
 

Coffa

Registered User
Jan 3, 2021
11
0
Couple of links to get you started:



The most important document is NHS National Framework which details how the process is supposed to work:


Dave
Great links. My mum had to be moved for dementia nursing care as her needs were not being met in residential. I had to insist they consider CHC, and now they are trying to exclude us from the DST assessment, so need to learn fast. Thanks for sharing :)
 

Ruth32

Registered User
Oct 29, 2021
58
0
CHC Review process timeline - any ideas ? Mum had her 3 month assessment on the 11th January, which was followed up by a full assessment on the 6th February. The CHC assessor wouldn't give me any idea of what she was going to put forward to the ICB and when I asked if she was going to let the social worker know the outcome. She said they don't do that anymore, she told me to wait 1-2 weeks to get the answer.

It is now 2 weeks later and have not received any communication from the CHC. I am slightly concerned as they had told me previously they had posted the outcome of mums original review to my address and that has never been received 4 weeks later !

So if anyone has been through the 3 month review and then another full MDT, can you let me know how long it took for CHC to inform you of their decision. I am finding it a bit stressful waiting for the outcome.

Many thanks.
 

Dave63

Registered User
Apr 13, 2022
397
0
CHC Review process timeline - any ideas ? Mum had her 3 month assessment on the 11th January, which was followed up by a full assessment on the 6th February. The CHC assessor wouldn't give me any idea of what she was going to put forward to the ICB and when I asked if she was going to let the social worker know the outcome. She said they don't do that anymore, she told me to wait 1-2 weeks to get the answer.

It is now 2 weeks later and have not received any communication from the CHC. I am slightly concerned as they had told me previously they had posted the outcome of mums original review to my address and that has never been received 4 weeks later !

So if anyone has been through the 3 month review and then another full MDT, can you let me know how long it took for CHC to inform you of their decision. I am finding it a bit stressful waiting for the outcome.

Many thanks.

No idea about timelines.

The assessors reason for not including the social worker seems contrary to the guidance in the national framework.

Section 205:
Where reassessment of eligibility for NHS Continuing Healthcare is required, a new DST must be completed by a properly constituted multidisciplinary team (MDT), as set out in this National Framework. Where appropriate, comparison should be made to the information provided in the previous DST. ICBs are reminded that they must (in so far as is reasonably practicable) consult with the local authority before making an NHS Continuing Healthcare eligibility decision, including any re-assessment of eligibility. This duty is normally discharged by the involvement of the local authority in the MDT process, as set out in the Assessment of Eligibility section of this National Framework. ICBs should ensure an individual’s needs continue to be met during this reassessment of eligibility process.

There's a whole section in the framework about the review process starting at section 201. As far as I understand the review should only be to assess that the current care plan is still suitable for your mums needs and the previous DST should have been used as a benchmark to assess her current needs.

Another full assessment should only be required where there is clear evidence of a change in needs which may impact her eligibility. That assessment should comprise of a proper MDT like the initial one and again benchmarked against the original DST.

Hope you get it sorted Ruth.
 

Ruth32

Registered User
Oct 29, 2021
58
0
@Dave63 Thanks for the reply. I have read the National Framework review part and so far there have been so many red flags on what has actually happened is why I am so concerned.

The SS did attend the meeting after saying the wouldn't attend but they left before the end of the meeting and there was no discussion as to what the MDT were going to say about mums needs. As I mentioned, when I questioned this, I was told that the SS don't get told the outcome anymore and things had changed regarding this. I must admit I responded with "Really, it's changed in the last 3 months" and I didn't get an answer to that. The assessor also said that her report had to go through quality control first ?

My first MDT I attended was totally different to this one. When the meeting ended, MDT went away discussed things and phoned me an hour later and told me they agreed that they will put mum through for full funding and we received the letter from the ICB confirming this a week later.

During the review assessment, there was no mention about mums care plan and whether it met her needs. I am hopefully worrying about nothing and normally I would chase anything that is late, but as so far they haven't pulled mums funding, I am probably best to wait.
 

Dave63

Registered User
Apr 13, 2022
397
0
@Dave63 The assessor also said that her report had to go through quality control first ?

Quality control?? What on earth is she talking about, pork pies!!
Like every other full assessment it is sent to the ratification panel in order to be approved. I think you may have got the sister of the assessor my mum had, he seemed prone to just making up his own process :)

As for the social worker changes, that's complete baloney. If things had changed to how the process is supposed to work the framework would require updating and it hasn't.

It's so infuriating isn't it.