CHC (Continuing Healthcare) support thread

[Kevinl]

I was thinking that CHC funding was dead in the water and I would have to opt for L.A. funding instead with Dad losing his pension. Any advice would be really welcome.

The advantage of LA funding is it's unlikely to ever be withdrawn unless he comes into money, it can be with CHC that the worse someone gets the less they qualify for CHC as you may have picked up on this thread. With CHC funding there's the constant concern that it can be withdrawn .
K

 

[Georgina63]

I did also start a thread, which I will try to keep updated on progress with applying for CHC located here:
https://forum.alzheimers.org.uk/threads/chc-wales-opening-up-a-can-of-worms.112425/#post-1585289

 

[Elle3]

Ever since dad was awarded CHC funding back in June, I have had the dread of the 3 month review and the worry of funding being removed. Well today we had the review and thankfully they agreed dad was still eligible for the funding. Next review in 12 months. I can't tell you the relief.

Using the notes from the last review they read through them and they agreed based on the evidence that dad still scored Severe for Behaviour and Cognition and High for Communication and Drug therapies and Medication. He also scored higher on a couple of categories due to a deterioration in his mobility, he has started falling and with Nutrition, he sometimes is unable to feed himself or understand what to do with food and drink.

It really helps having evidence immediately to hand when doing these reviews. I have date order notes on my phone and photos which help me remember everything, so I can tell them exactly when things happen or change, plus the nurse could also back these up with information in ABC charts etc. But it also helped prompt the nurse to say things, which they may not have mentioned.

I wish everyone else success if you are going to be going for CHC funding. From my experience I have found the CHC review team to be very open and cooperative.

 

[Theresalwaystomorrow]

Hi @Elle3
What a relief and great news for you.
Mum has same scoring in her domains but can I just ask what’s sort of behaviour does your dad show ? Thanks

 

[Careroncoffee]

@Elle3 that’s fantastic news. I’ve got mums 3 month review on 6/12/18 and based on my experience securing initial funding I’m dreading it.

 

[Elle3]

Hi @Elle3
What a relief and great news for you.
Mum has same scoring in her domains but can I just ask what’s sort of behaviour does your dad show ? Thanks

Yes thank you it was.

My dad show's aggression and uses very abusive language when it comes to personal care, it normally take 2-3 staff to dress, change (toileting) and wash him and on many occasions he has thumped a member of the care team.

He is also quite unpredictable with his behaviour, which seems to be a key fact for the CHC team. He can be sat in a chair or wandering around the corridors and totally unprovoked he can attempt to hit someone and start shouting and using very fowl language. We believe the lack of cognition sometimes is the instigator of these situations.

I record every incident I witness on my phone in a notes app and I always ensure the care staff are recording things too, as evidence is definitely the key to success when trying to get funding.

Have you got the funding or are you just going through the process?

Elle x

 

[Elle3]

@Elle3 that’s fantastic news. I’ve got mums 3 month review on 6/12/18 and based on my experience securing initial funding I’m dreading it.

Make sure you have the documentation from the first Decision Support Tool with you, as the reviewer will use this to check that nothing has changed. Also make sure you continue to keep notes of any evidence to support your claim. As I said above I keep notes in date order on my phone, so it's easy to access and I am constantly checking with the care home staff that they record all evidence too.

They also wanted to know if I was still happy with the level of care dad was receiving at the care home and asked about his room and health etc.

It honestly wasn't as scary as I expected and as long as you can show nothing has changed or if anything it's got worse and you can provide the evidence to support it, you should be OK.

Good luck with your review, fingers crossed it goes well.

Elle x

 

[Theresalwaystomorrow]

Hi @Elle3
Yes mum has just got FNC, but we think she should of been awarded CHC so we will be appealing.
I have got a full diary of events and I have tried to cross match them with the CH but they won’t disclose what they have recorded, things haven’t been transparent at all. We have Best Interest meeting very shortly.

 

[Elle3]

Hi @Elle3
Yes mum has just got FNC, but we think she should of been awarded CHC so we will be appealing.
I have got a full diary of events and I have tried to cross match them with the CH but they won’t disclose what they have recorded, things haven’t been transparent at all. We have Best Interest meeting very shortly.

I am sorry to hear that and that the Care home are not being very helpful. I presume you have a Social Worker, if so I would ask them to intervene and request to see your mum’s file, so you can compare the information.

It’s good that you have kept good notes, but you do need the support of the Care home as it is their paperwork the CHC team looks at and copies. I just don’t understand why some care homes are so obstructive. My dad’s care home has been so helpful and supportive.

Good luck with your appeal and I hope the best interests meeting goes well.

Take care.
Elle x

 

[Theresalwaystomorrow]

Hi @Elle3
Thanks for being so helpful x
We don’t have H&W poa so that’s why they are being difficult saying it’s confidential! This will be be of the Best Interest discussions.
Also we only have s safeguarding SW, not just a SW as they say there is nobody there for are support as a family only the Safeguarding one for mum .
Do the bones have a big say in this? Why are they so against CHC I wonder, is it worth less money to them?

 

[Elle3]

Hi @Elle3
Thanks for being so helpful x
We don’t have H&W poa so that’s why they are being difficult saying it’s confidential! This will be be of the Best Interest discussions.
Also we only have s safeguarding SW, not just a SW as they say there is nobody there for are support as a family only the Safeguarding one for mum .
Do the bones have a big say in this? Why are they so against CHC I wonder, is it worth less money to them?

It’s strange that you only have a safeguarding SW, I would have thought you should have a SW from the later life team. But it seems some LA’s do things differently. Maybe you should ask why?

I don’t have LPA for H&W either, but I haven’t had any problems so far with not having it.

I think sometimes their fees are more than the LA and CHC will pay and they probably get pressure from them to lower their fees, plus there is probably a lot more paperwork for them to complete and delays with the funding coming through.

 

[AlsoConfused]

It’s strange that you only have a safeguarding SW, I would have thought you should have a SW from the later life team. But it seems some LA’s do things differently. Maybe you should ask why?

I don’t have LPA for H&W either, but I haven’t had any problems so far with not having it.

I think sometimes their fees are more than the LA and CHC will pay and they probably get pressure from them to lower their fees, plus there is probably a lot more paperwork for them to complete and delays with the funding coming through.

I think there are at least 2 reasons why homes appear to be unhelpful in assisting families with CHC claims - sheer lack of knowledge about CHC and a worry about how it might impact on their income from self-funders.

Mum's nursing home knew nothing about CHC as such. They gave me ill-informed information such as "it's only for people who're dying"; "you mean FNC"; and "it's organised by the council". The nursing home was part of a large group and it had a good training programme for staff. If Mum's home didn't know about CHC it's highly probable other homes will be in a similar state of ignorance. Lack of helpfulness over something you know very little about wouldn't be surprising.

Then there's also the homes' worry about the level of funding under CHC (probably an unnecessary worry). In too many areas it seems that nursing / care home places are only available to self-funders … or mainly available to self-funders because they pay as much as twice the amount of fees paid by councils for their residents. If homes believe CHC payments will be on the same level as council funding any unhelpfulness from them wouldn't be surprising.

 

[Theresalwaystomorrow]

Thanks for replies
I think Dementia / Alzheimer’s should always start with a (. £. ) sign!
£Dementia
£Alzheimer’s
It’s a way of easy revenue, like a speed camera really or parking tickets!
Both very good but only when used fairly.

 

[Careroncoffee]

@Elle3 thank you. Yes I’ve got all the original paperwork and have been keeping notes - thank goodness for phones.

I’ve had to get the care plan rewritten as it wasn’t great. I’m also in the process of booking an appointment with the NH to review everything in light of the reassessment.

CHC appears to be the best kept care secret. I was fortunate that the administrator mentioned it as soon as mum moved in. She didn’t realise we had funding as she’d never come across it being agreed before placement.

Although I haven’t been given an exact weekly cost, I believe mums care is in the region of £1,300/week. The CCG awarded her complex status and didn’t balk about the fee’s. Another NH home close to Mums is £2,400/pw and the CCG refused to fund that one.

 

[Theresalwaystomorrow]

Wow @Careroncoffee what ridiculous prices
I wish you every success x

 

[Careroncoffee]

@Theresalwaystomorrow yep and thank you

 

[Elle3]

@Elle3 thank you. Yes I’ve got all the original paperwork and have been keeping notes - thank goodness for phones.

I’ve had to get the care plan rewritten as it wasn’t great. I’m also in the process of booking an appointment with the NH to review everything in light of the reassessment.

CHC appears to be the best kept care secret. I was fortunate that the administrator mentioned it as soon as mum moved in. She didn’t realise we had funding as she’d never come across it being agreed before placement.

Although I haven’t been given an exact weekly cost, I believe mums care is in the region of £1,300/week. The CCG awarded her complex status and didn’t balk about the fee’s. Another NH home close to Mums is £2,400/pw and the CCG refused to fund that one.

Those prices are very similar to the homes I looked at, especially for specialised Dementia units. Before dad was awarded CHC funding we were paying just over £1300 and that was the LA rate, our SW got the home to only charge us that rate, not the private self funding rate, which was much higher.

We were also fortunate that dad’s care home is very switched on when it comes to CHC funding they mentioned applying for it to me first. All their residents in their Dementia+ unit have it and they know exactly what they have to do to support applying for it. We have been lucky.

I wish you continuing luck and good support to.

Elle x

 

[AlsoConfused]

Agree with Elle. A clued-up care home or hospice organisation's a Godsend when it comes to CHC.

My Dad's hospice nurse - we think - got Dad CHC within hours of being called in, she organised the transport when Dad had to be moved and the whole process was seamless and trouble-free.

Contrast that experience with my 3 year battle to get the original CHC application for my Mum completed! She passed the CHC Checklist then all stalled ...

 

[AlsoConfused]

Passing on a useful piece of information about CCGs having to redraft their CHC policies following intervention from EHRC, the UK's "equalities" commission:-

"After early discussion with EHRC most of the 50 CCGs modified their policies but 13 either ignored the request or maintained their policies were OK. So a Letter Before Action ( before court action) was sent to these 13 CCG's earlier this year and resulted in them all withdrawing their existing Settings of Care policy and formally reviewing/rewriting it".

The person passing on this information used to serve as a Health Watch manager and is actively engaged still on local health policy and service provision matters

As TP members seeking home-based CHC care will know, in the last couple of years many CCGs have put arbitrary limits on the funding of home-based care. For example, CCGs have introduced policies that CHC home care must not cost more than institutional care (eg in a nursing home); or must not cost more than 10% more or 25% more. Often CHC claimants said the institutional care offered wasn't up to the standard needed to keep the patient safe and healthy and /or was too distant to allow family links and supervision of care to be maintained.

 

[try again]

https://caretobedifferent.co.uk/app...g-if-your-relative-has-a-primary-health-need/