CHC (Continuing Healthcare) support thread

[mnic]

Grey areas

My mum receives Funded Nursing care £156 per week and today we had a meeting about CHC funding where a SW and nurse filled out the checklists. Although the nursing home represented well, Mum responds differently to them than to us so some of the areas covered we didn't always agree with their interpretations. We were asked our opinion and it still needs to go to panel. Although I don't hold out much hope for full funding. It's basically £35,000 per year to care for mum in the home so it will bleed them dry if we don't get funding. Awful when they have worked all their lives, paid their taxes and not claimed for anything. So unfair

 

[ossettbob]

I`m lost with all I have read on this subject. I wondered how my SIL would go on with CHC funding. She can be very violent. She was taken to hospital 3 times from the nursing home recently & hit nurses & doctors with the walking stick on 2 visits On the 3rd visit, the NH sent her without her stick after all the complaints from the hospitals. She has attacked another patient in the NH for sitting in a chair she claimed as hers. On Monday, my wife, her sister, went to visit her & take her a couple of things. At first they sat in the dining room and "talked". When my wife was ready to go, her sister asked if she would walk to her room with the items. When they got in room, SIL shut & locked the door and proceeded to punch my wife. Wife managed to get key off her and unlock the door & get it partly open. She got half way through when SIL threw herself against it so she got wedged in the gap. A nurse wheeling another patient sounded the alarm & staff managed to free my wife & lock SIL in her room. They sat my crying wife down in the office with coffee until she was in fit state to drive home. My wife told the staff that she wouldn`t visit any more because she was so frightened. Would this type of behaviour be sufficient for CHC funding ?.
I forgot, she had previously attacked my wife with her walking stick.

 

[mnic]

I`m lost with all I have read on this subject. I wondered how my SIL would go on with CHC funding. She can be very violent. She was taken to hospital 3 times from the nursing home recently & hit nurses & doctors with the walking stick on 2 visits On the 3rd visit, the NH sent her without her stick after all the complaints from the hospitals. She has attacked another patient in the NH for sitting in a chair she claimed as hers. On Monday, my wife, her sister, went to visit her & take her a couple of things. At first they sat in the dining room and "talked". When my wife was ready to go, her sister asked if she would walk to her room with the items. When they got in room, SIL shut & locked the door and proceeded to punch my wife. Wife managed to get key off her and unlock the door & get it partly open. She got half way through when SIL threw herself against it so she got wedged in the gap. A nurse wheeling another patient sounded the alarm & staff managed to free my wife & lock SIL in her room. They sat my crying wife down in the office with coffee until she was in fit state to drive home. My wife told the staff that she wouldn`t visit any more because she was so frightened. Would this type of behaviour be sufficient for CHC funding ?.
I forgot, she had previously attacked my wife with her walking stick.

Sounds like you're really having a tough time.There are about 11 different areas that they look at for CHC funding. Behaviour is one of them, continence, anxiety, nutrition, medication and more. I looked it up on the Internet and found help there. The NH can advise you. Good luck

 

[mnic]

As some of you may recall I have been waiting since last July for for the CHC meeting, which had to be postponed for further information regarding Mum's behaviour.

Today I met with Social Worker and Nurse who agreed that Mum's behaviour last August ( when she was very agitated and hit 3 carers and another resident in her care home) qualifies her for CHC, because her care needs were unpredictable and intense. However, as she has been reasonably settled since September, she does not qualify from then.

As NHS continuing healthcare funding applies from 28 days after the checklist was submitted on 20/7/2016 i.e. 17th August. And will stop in September when she became more settled, she is entitled to two weeks chc funding. Has anybody heard of this happening ? I am so dumbfounded I don't know whether to laugh or cry !!!!

The Social Worker suggested I submit a claim for retrospective chc as Mum has been aggresive in the past. What does anyone think?

It's a minefield! If my mum gets funding ( we had the same meeting yesterday) they did say that this would be reviewed every three months. Since being in the NH she is more settled so certain behaviours have become less of a problem. I don't think that we should think of any funding as permanent, just in case. Good luck

 

[stanleypj]

I`m lost with all I have read on this subject.

You might find this link helpful:

https://www.alzheimers.org.uk/site/scripts/download_info.php?fileID=75&_ga=1.174794279.428393088.1433590610

In fact there is a lot of useful info contributed by members on this thread. Perhaps you have read some of this already?

 

[jakiflora]

It's a minefield! If my mum gets funding ( we had the same meeting yesterday) they did say that this would be reviewed every three months. Since being in the NH she is more settled so certain behaviours have become less of a problem. I don't think that we should think of any funding as permanent, just in case. Good luck

I would expect Mum to be funded for at least 3 months until a review, not just for 2 weeks. Does anyone know if this is allowed within dst guidelines as I cant find any mention of this happening before. I know I can put in a claim for retrospective chc funding but it is so difficult and time consuming.

 

[Shedrech]

Appeal success

for general information
this is a copy of Blancr's recent helpful post on the thread
https://forum.alzheimers.org.uk/showthread.php?97817-Status-of-CHC-Funding-whilst-appealing-against-withdrawal-of-funding&p=1385542#post1385542

Just in case this is of any interest to anyone:

We won our appeal (much to my surprise!) and I thought it might be worth setting out the points that seemed to make a difference (according to the Appeal Team).

Worth noting that the assessment quite clearly did not follow the prescribed procedure so we had quite strong grounds for the appeal.

1 - We made it clear that we understood the real challenges and constraints under which the CHC had to work.
2 - We were very calm in our manner and forensic in the evidence we submitted.
3 - We wrote as objective a report as we could (avoiding any hint of exaggeration) that evidenced all the key defects in the assessment.
4 - The Appeal team made the point that because they did not know the person in question, they relied upon the data provided by the Assessor, the nursing home notes and the routine care plan. This allowed us to make two key points a) The assessment was so defective as to render any data collected unreliable and b) we provided evidence to show that the nursing home notes and assessments were also unreliable. This notion seemed to come as something of a shock to the Appeal Team i.e. they just assumed any data put in front of them to be accurate. The realisation that it might not be (and clearly wasn't in this case) seemed to surprise them.

What I have learned from this experience is that CHCs are very skilled at deflecting any claims that lack clear objective evidence. More particularly the evidence must be presented in the correct manner. Getting angry (which is very easy to do!!) will achieve nothing even if you have good evidence.

Hope this helps - happy to chat if needed.
Blancr

 

[Selinacroft]

Hi
So pleased to have found this thread as returning to this process. To summarise, Dad was discharged from hospital about 2 years ago and I requested a CHC checklist which he scored enough points in to go through to the full assessment.
He improved marginally although IMHO he should have still qualified. Anyway after 8 weeks during which care was funded through CHC the full assessment went ahead once they had all the evidence. I fully documented all my evidence and attended the CHC meeting and presented a copy of my own contribution to all concerned but to cut a long story short he was declined further funding. I never appealed.
Dad has now declined further and looking at discharge from hospital again. I have a meeting tomorrow with Social Services at hospital. Hospital have already said they will do CHC checklist before discharge but I have 2 questions for now.
The first is whether SS will be likely to help in the process bearing in mind Dad is self funding.
The second is whether I should be appealing the last decision as Dad is already in the CHC system rather than starting from scratch again and risking the fact he may not even get through the checklist stage.
If they did fail him at checklist stage would that stop me appealing last decision or am I too late for that now anyway - 2 years ago. Hospital and SS both said to do a new checklist- but they would wouldn't they?
Appreciate anyone's thoughts before my meeting tomorrow.

 

[nitram]

I think that at 2 years you are too late to appeal.
http://caretobedifferent.co.uk/nhs-continuing-care-review-process-new-timescales/

On answering a query on another thread I found out about the 'Health Needs Assessment' which is used during the checklist/DST process by London CCGs.

It can be viewed on most London CCG websites eg Barnet http://www.barnetccg.nhs.uk/Downloads/Your-Health/Heath Needs Assessment.doc

It contains a 'tick box' assessment for each of the domains which could help you with collating and presenting your evidence.

 

[Selinacroft]

I think that at 2 years you are too late to appeal.
http://caretobedifferent.co.uk/nhs-continuing-care-review-process-new-timescales/

On answering a query on another thread I found out about the 'Health Needs Assessment' which is used during the checklist/DST process by London CCGs.

It can be viewed on most London CCG websites eg Barnet http://www.barnetccg.nhs.uk/Downloads/Your-Health/Heath Needs Assessment.doc

It contains a 'tick box' assessment for each of the domains which could help you with collating and presenting your evidence.

Many thanks- that looks useful

 

[Ihtl]

Are family members supposed to be contacted ahead of the 3 month review? This coming week will be 3 months since my dad had his full assessment and was awarded funding. I'm not completely sure what to expect, I'll be checking over the care home notes this week as they have mentioned a few violent and aggressive incidents recently. I also still have statements from the day centre and the psychiatrist from the CMHS (he recommends CHC funding) that were not seen by the assessor in December.

 

[Loopylou7770]

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) 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.

Hi Lyn
Did your hubbys aggression around personal care ever settle down , my Dad is the same, we have just got CHC but he has to stay under a section 3 in a NHS unit until the behaviour settles it's been 9 months and he calm until personal care then hits out and swears , even though he does talk any other time.
Louise

 

[Selinacroft]

Update-surprise surprise No CHC as hospital didn't have enough "evidence" to put him in one or two higher categories. I was advised that I could reaply for another checklist to be done at any time once Dad was back out in the community.
I have kept my own diary but feel that whatever I wrote myself may not be treated as sufficicient evidence.
It seems Dad will need four carers a day once he is discharged and I will need to ask them to document every miniscule detail as evidence such as - none compliance with putting feet up, going to bed, staying in bed, eating, drinking, toileting accidents, incidents of confusion, hallucinations, rudeness to carers etc etc.
Does anyone have any tips on how to achieve this- table for carers, standing over them like a hawk, checklist for them to sign? What has anyone found effective please and how best to present it for evidence .

 

[antichcrefusal]

Hi everybody

Hope someone can help and advise me on this.

My father became ill after two falls and went into hospital. Within weeks of entering hospital, I was pressured to put him in a nursing home by the Discharge Co-Ordinator. I applied for CHC funding on his behalf, and was iniotially refused an assessment. I appealed against this and won him an assessment. Despite his advanced age (88), and number and complexity of health needs (advanced Parkinsons, dementia, severe risk of falls as demonstrated by his history of falls, diabetes), he was ruled ineligible. During the assessment, I was shouted down by members of the mob handed crew who attended, they refused to accept that he had a history of falls, and despite agreeing levels of need in several domains, after the meeting the team downgraded his level of need/severity of condition in several domains from that agreed at the assessment.

I appealed against the assessment and demanded a re-assessment. Owing to the obfuscation and delays by the CCG, it was over 1 year later that a re assessment was done and he was again considered ineligible despite reports from medical practitioners not employed by the CCG suggesting that his needs were 'severe' in several domains.

Once again I complained about this, and the CCG took several weeks, sometimes months, to reply to my correspondence. In the meantime, my father passed away. The cause of death was specified as dementia and Parkinson's Disease. In all the time he was in the nursing home (16 months), the CCG refused to send members of the Palliative Team in to see him despite him being declared a palliative patient by a local hospital after he was admitted for a week suffering from pneumonia. Just three days before he died, a palliative nurse finally visited him and told me that she thought he should be referred for fast track CHC funding assessment.

After my father's death, I commissioned a CHC expert to produce an appeal submission; this was produced after seeing all my father's medical notes and care records, and declared that he was entitled to CHC funding. The CCG received this at the beginning of August last year and have done nothing. I have lodged a formal complaint with them about both this and about the way my father's application for CHC funding was swept aside despite the severity of his health in several domains which from the date of his admission to a nursing home until the day he died rendered him eligible for CHC funding.

I complained to NHS England, who took up the matter with the CCG, and came back to me with the news that since my father has now been classified as a 'retrospective' application, he has joined a long list of 'posthumous' applications which stretches back as far as 2004 to 2012. They are therefore suggesting that it may be 13 years before this matter is resolved and my father's estate is reimbursed.

Has anyone else successfully dealt with this before? All suggestions and advice welcome and gratefully received.

 

[SnowWhite]

I cannot believe that until today I had never heard of Continuing Care Funding.

I know I have a lot of reading ahead of me but I am wondering whether this might be something I could look into for my Mum.

She is nearly 93 and has been in a care home since December. She has alzheimers, arthritis, walks with a frame, is prone to falls, has had a seizure recently, has had bowel cancer twice and has a colostomy.

At the moment she is self funding as she had more than £23,500 but not by much and it's going down rapidly. She does own a house but it's nothing fabulous just an ex Council house which would need a lot spending on it.

It would save me a helluva lot of reading if someone could just say whether this is worth looking into for her please. Thanks.

 

[stanleypj]

I understand your request SnowWhite, but I don't think anyone on TP can realistically assess whether you are likely to be successful. So much will depend on factors we don't know about. For instance, different areas vary widely in terms of the likelihood of getting CHC funding. I don't know how much of this thread you have been able to read so far but this is a good place to start as so many members have posted about their experiences.

 

[MDJ]

CHC funding

I cannot believe that until today I had never heard of Continuing Care Funding.

I know I have a lot of reading ahead of me but I am wondering whether this might be something I could look into for my Mum.

She is nearly 93 and has been in a care home since December. She has alzheimers, arthritis, walks with a frame, is prone to falls, has had a seizure recently, has had bowel cancer twice and has a colostomy.

At the moment she is self funding as she had more than £23,500 but not by much and it's going down rapidly. She does own a house but it's nothing fabulous just an ex Council house which would need a lot spending on it.

It would save me a helluva lot of reading if someone could just say whether this is worth looking into for her please. Thanks.

It will be worth your while to look at the Caretobedifferent website. It's all about CHC and how to claim. Be warned if you are going to claim - it will not be easy!! Be ready for the delays, wrong information and general bloody mindedness of your local CCG. Good luck!! I am in the 5th year of a retrospective claim for my mother who passed away in 2011. Like you I had never heard of CHC until nearly 2 years after my mothers death.

 

[SnowWhite]

I understand your request SnowWhite, but I don't think anyone on TP can realistically assess whether you are likely to be successful. So much will depend on factors we don't know about. For instance, different areas vary widely in terms of the likelihood of getting CHC funding. I don't know how much of this thread you have been able to read so far but this is a good place to start as so many members have posted about their experiences.

Thanks for your reply. I guess what I was looking for was someone saying something like "my parent was in a similar position and it worked for us."

I will work my way through this thread and thanks again.

 

[SnowWhite]

It will be worth your while to look at the Caretobedifferent website. It's all about CHC and how to claim. Be warned if you are going to claim - it will not be easy!! Be ready for the delays, wrong information and general bloody mindedness of your local CCG. Good luck!! I am in the 5th year of a retrospective claim for my mother who passed away in 2011. Like you I had never heard of CHC until nearly 2 years after my mothers death.

Thanks. I will look at that.

 

[stanleypj]

Thanks for your reply. I guess what I was looking for was someone saying something like "my parent was in a similar position and it worked for us."

I will work my way through this thread and thanks again.

I understand but for this to work to any extent, the person replying would need to be living in the same area and you might not wish to divulge that - some people do, some people don't.

It certainly looks as though your Mum has complex health needs and, in an ideal world, would have no problem about getting CHC funding.

By all means have a look at Caretobedifferent. I know that some members have said on this thread that they have found the site helpful. You may not wish to spend £29.97 on the ebook they advertise on their site.