CHC Wales - opening up a can of worms?

[Georgina63]

I have been attempting to pursue CHC funding for my Dad and feel I have stumbled at the first hurdle, and am also being misinformed. Dad is in a residential care home (dementia specialised).

I know there are a lot of CHC threads, so apologies if this repeats something already covered. But can anyone advise if I am right in thinking I am being misinformed or misled, which I feel I am, based on the research I've done?

The CPN for Dad started the process back in July, completing a checklist which we have subsequently told (by the Critical Care Team) was the wrong one (she completed a nursing assessment). However, this apparently has highlighted Dad has nursing needs.......

To date I have been told the following (extracts from emails):

• "If we complete a CHC and Dad comes out as nursing care, he would most probably have to be moved to a nursing home. If he were to move to nursing care with CHC funding, you may possibly end up paying more as a top up then you are now". My understanding is no top ups paid on NHS CHC funding.

• "The nursing assessment, indicated was that Dad did have nursing needs, and as such he should be in a nursing home because a residential home is not registered to provide nursing care". There has been no question to date that the care Dad receives is not suitable, in fact far from it and I certainly do not want to move him.

• "an individual who is found eligible for CHC funding would need to be in a nursing home, as their needs would be above the level of FNC, which in itself is only paid to nursing homes, and as such we would not commission with a residential home to meet complex or intense care needs: The only difference to that is when an individual already in a residential home becomes ‘end stages of life’ and therefore it would not be appropriate to move them from their ‘home’ to a new and unfamiliar environment. However, that is not the case here". My understanding is that CHC can apply to care provided in any setting, although I understand it's more complicated if the current home is a high-priced one, and that there may be a suggestion to move CH, though particular circumstances should be considered in allowing person to remain where they are.

I think that the positive is, that there seems to be a move towards a Full Assessment as my latest email from the Complex Care Team suggests that a multi-disciplinary team assessment should now be coordinated.

Any comments most welcome. This is a quagmire!!

Thanks Georgina x

 

[Louise7]

It's a bit of a minefield and Hospitals, CCG's, social services seem to place their own 'interpretation' on the CHC National Framework. This link here might be useful as it seems to cover all of your questions: https://caretobedifferent.co.uk/continuing-healthcare-funding-and-choice-of-care-home/

If your Dad qualified for FNC that can only be paid to someone in a nursing home.

 

[Georgina63]

It's a bit of a minefield and Hospitals, CCG's, social services seem to place their own 'interpretation' on the CHC National Framework. This link here might be useful as it seems to cover all of your questions: https://caretobedifferent.co.uk/continuing-healthcare-funding-and-choice-of-care-home/

If your Dad qualified for FNC that can only be paid to someone in a nursing home.

Thanks @Louise7, I'll take a look at that. Gx

 

[Georgina63]

Thanks again @Louise7, that was a very helpful link and I think does confirm my concern about being been fed incorrect information.

I initially asked for a CHC assessment to be instigated back in June 2018, and here we are in November, not having moved very far forward!

Would be keen to hear of others' experiences and advice.

Thanks Gx

 

[Louise7]

I can only advise that you keep on at them and challenge what you are told if it doesn't seem right.

I submitted a complaint to the CCG in January regarding the assessor's failure to follow the National Framework. No response for almost 3 months then a further 3 months when they were apparently trying to arrange a meeting to discuss this but due to 'sickness' then 'leave' a date couldn't be fixed. No further response since July despite my emails. Frankly I have given up as the complaint has no bearing on Mum's current position but did highlight the dishonesty of the assessor (working on getting that highlighted via other channels).

 

[Georgina63]

I can only advise that you keep on at them and challenge what you are told if it doesn't seem right.

I submitted a complaint to the CCG in January regarding the assessor's failure to follow the National Framework. No response for almost 3 months then a further 3 months when they were apparently trying to arrange a meeting to discuss this but due to 'sickness' then 'leave' a date couldn't be fixed. No further response since July despite my emails. Frankly I have given up as the complaint has no bearing on Mum's current position but did highlight the dishonesty of the assessor (working on getting that highlighted via other channels).

Thanks, I will do.

Crikey, your situation sounds pretty shocking. Now that I look back over my correspondence, the CPN in question has used a number of excuses ranging from filling out the incorrect form, to being on annual leave. That is now combined with a local health board who are speaking in riddles and seemed to have decided what might be best for Dad without a full assessment being done. On a mission.......!! Gx

 

[Louise7]

Crikey, your situation sounds pretty shocking.

Unfortunately it's a whole lot worse than that but I'll save that for another thread sometime!

That is now combined with a local health board who are speaking in riddles and seemed to have decided what might be best for Dad without a full assessment being done.

In my Mum's case they completed an assessment without family or social services involvement and wrote on the form that the family 'were unable to attend assessment but agree with all the domain markings' I have however been in contact with a different assessor since so there are some good ones out there who do things properly but unfortunately it's pot luck if you can find one.

 

[Georgina63]

Unfortunately it's a whole lot worse than that but I'll save that for another thread sometime!



In my Mum's case they completed an assessment without family or social services involvement and wrote on the form that the family 'were unable to attend assessment but agree with all the domain markings' I have however been in contact with a different assessor since so there are some good ones out there who do things properly but unfortunately it's pot luck if you can find one.

Shocking! I hope things go a bit more smoothly for you now. See you on TP to compare notes!!

 

[Theresalwaystomorrow]

Hi @Georgina63
Please try and look up the Framework Guidelines for Wales.
Interpretation is key word!!
When doing assessments their interpretation varies so much it’s unbelievable.
CHC is awarded for any setting, it’s the needs that meets the criteria not the care setting.
They want to wear you out! Don’t let them, keep trying.
Good luck

 

[Georgina63]

Hi @Georgina63
Please try and look up the Framework Guidelines for Wales.
Interpretation is key word!!
When doing assessments their interpretation varies so much it’s unbelievable.
CHC is awarded for any setting, it’s the needs that meets the criteria not the care setting.
They want to wear you out! Don’t let them, keep trying.
Good luck

Thanks @Theresalwaystomorrow I will do. My file is growing ever thicker! I found the ageCymru factsheet very helpful (all 70 pages ) and hope to schedule a call with Beaconchc as soon as possible.

 

[Georgina63]

Well, I feel I've achieved at least a minor victory, which sounds a bit ridiculous as it is only the first stage in seeing if Dad might qualify for CHC funding. I have had clarification of which checklist to use, who is responsible for coordinating its completion and where it should then be sent.

Result!! (Only taken 4 months to get this far. )

Gx

 

[Theresalwaystomorrow]

Hi
Are you on the checklist or do you mean the assessment stage where they use DST decision support tool?

 

[Georgina63]

Hi
Are you on the checklist or do you mean the assessment stage where they use DST decision support tool?

Only the initial checklist! The first ‘checklist’ that was completed a good few weeks back was apparently a ‘nursing assessment’ and therefore not the correct one. Gx

 

[Theresalwaystomorrow]

Read each domain carefully and try to give examples of your reasoning. Beware of them trying to downgrade everything and again they will deliberately interpret it to suit them!
One word in these discriptions can change from an A to C so just be careful of that
Good luck.
Just something to bear in mind, these assessors are not gemmed up on Dementia / Alzheimer’s, they assess all sorts of cases which reach the required CHC criteria needs so you really have to concentrate and get across the needs developed from this disease and the totality of overall daily care needed.
Good luck

 

[AlsoConfused]

You'll find a LOT of useful background on CHC problems in the report to the Public Accounts parliamentary select committee.

Typical CHC problems covered in the witness reports and admitted by NHS England are:-
- there's no NHS England system to ensure patients possibly eligible for CHC and staff looking after them (eg in hospital) are told about CHC, therefore whether patients find out about it is a matter of chance.
- the money for CHC comes out of the pot of money funding the CCG that allocates it - conflicts of interest are bound to arise. A number of the CCGs are in dire financial trouble even though they may be very stingy about paying CHC claims.
- the assessors for checklist stage and at DST stage rarely have adequate medical knowledge of the conditions affecting the patients they're assessing; hence they don't know what questions to ask and what evidence is relevant. They're also easily bamboozled.
- there's considerable variation between CCGs as to the percentage of patients given CHC … so much so that NHS England is investigating the CHC performance of those CCGs whose statistics are particularly odd.

 

[Georgina63]

You'll find a LOT of useful background on CHC problems in the report to the Public Accounts parliamentary select committee.

Typical CHC problems covered in the witness reports and admitted by NHS England are:-
- there's no NHS England system to ensure patients possibly eligible for CHC and staff looking after them (eg in hospital) are told about CHC, therefore whether patients find out about it is a matter of chance.
- the money for CHC comes out of the pot of money funding the CCG that allocates it - conflicts of interest are bound to arise. A number of the CCGs are in dire financial trouble even though they may be very stingy about paying CHC claims.
- the assessors for checklist stage and at DST stage rarely have adequate medical knowledge of the conditions affecting the patients they're assessing; hence they don't know what questions to ask and what evidence is relevant. They're also easily bamboozled.
- there's considerable variation between CCGs as to the percentage of patients given CHC … so much so that NHS England is investigating the CHC performance of those CCGs whose statistics are particularly odd.

Thanks for that @AlsoConfused. I’ve had some useful pointers so far, so I at least feel I can approach this from a position of being slightly better informed! Let’s hope it helps. Wish me luck! Gx

 

[Careroncoffee]

I managed to get CHC funding for mum on first attempt in August 2018. She had spent 2 episodes totalling 7 out of 10 months in hospital. I was constantly told by SWs/Drs/OTs etc that I didn’t stand a chance.

Mum was diagnosed with moderately severe Alzheimer’s in March 2018, is profoundly deaf, has a 40 year history of varicose ulcers and the commonly associated allergies to topical meds, is doubly incontinent, has been unable to stand or walk for 7 years, plus other more minor health issues. Behavioural/emotional wise confabulations, some anxiety and irritation but no aggression or challenging episodes.

I have a clinical background thus speak their language, but the process and ineptitude of those involved nearly broke me. I felt bullied, threatened and ignored. I shed buckets of tears, but only when they couldn’t see me.

Looking back I feel the main things that helped me get through it were:

Refusing to believe anything I was told.

Challenging the hospital notes (often completed retrospectively). If they were not corrected, I’d email the ward sister to create a paper trail.

Taking my sister to the DST assessment as a witness and another pair of eyes/ears.

Challenging them on every statement or word I didn’t agree with, e.g. gets around in a manual wheelchair became needs pushing in a manual wheelchair after being hoisted into it, as is unable to propel herself or operate an electric chair.

Having cross referenced copies of care act, CHC framework and NHS mission statement to quote from.

Reminding the SW that the LA have a legal upper limit to the amount of nursing care they can provide and that limit is incidental.

Using info provided on the care to be different web site - best £28 I’d spent, was on their ebook (Mods please remove if I’m not allowed to mention another site).

It’s a horrid process, my heart goes out to anyone involved in it.

Don’t give up @Georgina63 as @AlsoConfused and @Theresalwaystomorrow imply, you will probably know more than the assessors about the health implications of dementia, you’ve just got to get it across.

Ps superwoman pose and my red handbag came in useful

 

[Elle3]

Hi Georgina, I had to comment to say how shocked I am by what I have been reading and how different your experience has been from mine.

We (my dad and I) live in the NW of England and I have found the process of applying for CHC funding very open and straightforward. I suppose it might have helped that at the start of the process we had a very good Social worker who set us on the right path and ensured the care home from day one kept meticulous records and completed ABC charts of all incidents etc. She also advised that I kept date order notes too, which I have continued to do on my phone, which have been very useful as evidence.

From day one I was told how long the process should take by the SW, she also gave me a copy of the Decision Support Tool so I would know what to expect when the review took place and I could be ready with evidence. Once the SW did her assessment, she told me once she submitted the paperwork for the referral, the CHC had to complete the review process within 28 days. The CHC review team made the appointment with me and carried out their review less than 2 weeks after the referral.

Present was myself, the care home nurse, my dad (as he followed us into the meeting) and two people from CHC team. They explained the process, then we went through each of the 12 criteria's giving evidence and examples then they gave their thoughts regarding the level of need after each criteria and asked if we agreed. They were even very open to discussion and changing their opinion, but for my dad their thoughts on the level of need were the same as mine and the care home.

The outcome of the review was that they said dad was eligible for funding and it would be referred to panel within 3 days. I received a call the day after the panel review to say the panel had agreed unanimously to funding and I received the decision in writing a week later. I was also advised that there would be a 3 month review then it would be followed by 12 month reviews.

The only stumbling block in the whole process was the amount of the funding, due to dad's care home costs being higher than the level of funding. The CHC team agreed that it wouldn't be beneficial to move dad (I didn't even have to argue this) so it was escalated to the Assistant Director of the CCG who approved the full funding. This did take just over 2 months for the paperwork to all go through and we finally got a refund on the care home costs a month later.

We had the 3 month review today and after going through the first review documentation and checking the evidence they agreed to continue with the funding, which was a big relief.

I really hope you start to get some good advice and support, I just can't believe how some people can have such different experiences with what you would hope to be a set process with specific guidelines. Best of luck. Elle x

 

[Georgina63]

I managed to get CHC funding for mum on first attempt in August 2018. She had spent 2 episodes totalling 7 out of 10 months in hospital. I was constantly told by SWs/Drs/OTs etc that I didn’t stand a chance.

Mum was diagnosed with moderately severe Alzheimer’s in March 2018, is profoundly deaf, has a 40 year history of varicose ulcers and the commonly associated allergies to topical meds, is doubly incontinent, has been unable to stand or walk for 7 years, plus other more minor health issues. Behavioural/emotional wise confabulations, some anxiety and irritation but no aggression or challenging episodes.

I have a clinical background thus speak their language, but the process and ineptitude of those involved nearly broke me. I felt bullied, threatened and ignored. I shed buckets of tears, but only when they couldn’t see me.

Looking back I feel the main things that helped me get through it were:

Refusing to believe anything I was told.

Challenging the hospital notes (often completed retrospectively). If they were not corrected, I’d email the ward sister to create a paper trail.

Taking my sister to the DST assessment as a witness and another pair of eyes/ears.

Challenging them on every statement or word I didn’t agree with, e.g. gets around in a manual wheelchair became needs pushing in a manual wheelchair after being hoisted into it, as is unable to propel herself or operate an electric chair.

Having cross referenced copies of care act, CHC framework and NHS mission statement to quote from.

Reminding the SW that the LA have a legal upper limit to the amount of nursing care they can provide and that limit is incidental.

Using info provided on the care to be different web site - best £28 I’d spent, was on their ebook (Mods please remove if I’m not allowed to mention another site).

It’s a horrid process, my heart goes out to anyone involved in it.

Don’t give up @Georgina63 as @AlsoConfused and @Theresalwaystomorrow imply, you will probably know more than the assessors about the health implications of dementia, you’ve just got to get it across.

Ps superwoman pose and my red handbag came in useful

Thank you so much @Careroncoffee, and so pleased to hear you have been successful. Thank you for your pointers. When the time comes I may well dig out my best handbag, a fancy pen and some big girl pants!! Gx

 

[Theresalwaystomorrow]

Thank you for support.
Mum is way past social care ‘as they want to put it ‘ ! She has FNC now but I am appealing for full CHC
It’s a disgusting fight bed have to go thru but I won’t give up
Thanks