• All threads and posts regarding Coronavirus COVID-19 can be found in our area specifically for Coronavirus COVID-19 discussion.

    You can directly access this area >here<.

CHC (Continuing Healthcare) support thread

artyfarty

Registered User
Oct 30, 2009
267
London
Hi, It will be expensive. Have you considered Beacon NHS CHC - it provides an initial 90 minutes worth of free advice over the telephone. Look at the all the Beacon info FIRST, it'll take you a time to go through it all. Website Google beaconchc co uk how-we-can-help/
Then contact them. The 90 minutes free advice does not have to be used in one, one and a half hour call! The phone calls are made by an appointment system, they contact you at an agreed time. Remember in the initial call be concise, have assessment date(s), and all other details to hand.

++++++
Now completely separate to the appeal, [and not anything to do with Beacon], and I stress make it clear, it isn't part of the ongoing appea], l suggest, if there are any errors, inaccuracies, omissions, points that require clarifying etc. etc. in the DST assessment report which you've received, then I think you should make a specific complaint (to the NHS CCG/NHS Trust) about the poor document you received. Make it clear it is a specific complaint not part of the on-going appeal.
And insist that all the points you raise in this complaint are responded to in writing.
The CCG/Trust might offer to invite you to a meeting - resist this at least until you have received specific responses to all the issues you raised about the DST report not being accurate/complete/ etc. etc.
The complaint can go on at the same time as any possible future appeal.
If the complaint to the ccg/trust 'fails', then you could consider asking the Ombudsman to look into the matter.
++++
Remember both the appeal, and any complaint - will take many months or years to sort out.
Good luck and prayers.
++++
Thank you - I've not heard of Beacon - I will go and have a look straight away. Amazing these things exist but you have to search so hard for them. The problem that we have really is that mum has had dementia now for 10 years and so is very severely effected. Her communication is non-existent but they keep insisting that this is moderate. She has zero awareness of her behaviour so comes into conflict with other residents - she was attacked and did nothing to defend herself as she didn't understand what was going on. Yet, this wasn't mentioned at all in the assessment. In that domain, I was told that Severe only applies to people in a coma! I asked how you could possibly put systems in place to help someone in a coma to communicate but not surprisingly didn't receive an adequate explanation. Likewise, things like Psychological/Emotional Health and were just put down as moderate as mum doesn't participate in activities - she has no language left and is not able to understand instructions or answer questions so this seems impossible to assess. This weekend I tried asking her all sorts of questions - are you a man? are you a woman? do you prefer meat or fish for dinner? are you hot? are you cold? are you in pain? are you happy? She couldn't answer a single question but still this is moderate. In the assessment, myself, the care home manager and the social worker all said that this should be Severe but in the assessment it was put down as Moderate but noted that we didn't agree. She is in a very good (bloody expensive) home and they do manage her care very well. I think this is why they feel able to downgrade her needs despite the fact that this is specifically mentioned as something you shouldn't do.
 

nitram

Registered User
Apr 6, 2011
21,257
North Manchester
In the assessment, myself, the care home manager and the social worker all said that this should be Severe but in the assessment it was put down as Moderate but noted that we didn't agree.
This is not in accord with the guidelines:

"If, after considering all the relevant evidence, it proves difficult to decide or agree on the level, the MDT should choose the higher of the levels under consideration and record the evidence in relation to both the decision and any significant differences of opinion. "

Page 8
https://www.beaconchc.co.uk/wp-cont...ision_support_tool_-_October_2018_revised.odt
 

artyfarty

Registered User
Oct 30, 2009
267
London
This is not in accord with the guidelines:

"If, after considering all the relevant evidence, it proves difficult to decide or agree on the level, the MDT should choose the higher of the levels under consideration and record the evidence in relation to both the decision and any significant differences of opinion. "

Page 8
https://www.beaconchc.co.uk/wp-cont...ision_support_tool_-_October_2018_revised.odt

Yes, I agree. It's one of the reasons we are considering appealing. Mum's lack of any awareness affects so many of the domains and I really feel that they are deliberately downplaying this in itself but also as some sort of support for their other opinions. Knew this wouldn't be easy and we haven't even really got started (if we do go this route). All my siblings want to proceed but I'm not sure I've got the stomach for the fight.
This is not in accord with the guidelines:

"If, after considering all the relevant evidence, it proves difficult to decide or agree on the level, the MDT should choose the higher of the levels under consideration and record the evidence in relation to both the decision and any significant differences of opinion. "

Page 8
https://www.beaconchc.co.uk/wp-cont...ision_support_tool_-_October_2018_revised.odt
just wondering whether you have thought to contact the National Dementia Helpline as the advisors there may have some useful info and suggestions

https://www.alzheimers.org.uk/get-support/national-dementia-helpline
 

padmag

Registered User
May 8, 2012
259
nottingham
I wondered if anyone had any experience of paying a company to handle the appeal of a CHC assessment? I've seen a lot of people referencing the Care to be Different website and the company behind it Farley Dwek have told us that they think they have a good chance of winning an appeal on our behalf. We have tried two other companies - one of which said the same and the other said they didn't think we had a chance of winning. I'm a bit confused as to why we have such different opinions and am worried that Farley Dwek are just saying they can win so they can get the initial fee (£1500) - you can then choose for them to take a percentage or pay a fixed fee which I think is around £2000. I was the one present at the actual assessment with my mum and I feel like I made such a mess of it, that I don't feel confident to handle the appeal. I have three siblings but two of them don't know much about mum's care regime and the other one has her own health concerns. Has anyone paid a company to do the appeal and did you think it was worth it?
We are using a no win no fee solicitor for Mum's appeal. We are now in the process of organising a date for the appeal. I know the charges are high, but I feel that as they are taking on Mum's case in the knowledge of the DST results (which were downgraded after the meeting), then they must think she has a chance of succeeding. Obviously nothing to pay if the appeal fails. We (my sister and I) gathered all the information for the DST and were fully prepared, but going forward we needed professional help to ensure the legal side was adhered to by CCG at the appeal meeting, as neither of us are as familiar with the law.. Also I am a full time carer for my partner with dementia (10 years now) so am not fully able to give the appeal as much support as I wish. I would hesitate before paying any monies up front in these circumstances.
 

Platinum

Registered User
Nov 7, 2017
75
South east
Someone posted a thread here earlier this year about how they ended up paying £15,000 to a company to deal with their CHC appeal and did not win. I think the problem is that the CHC assessment criteria is open to interpretation so winning an appeal is not easy: https://forum.alzheimers.org.uk/thr...ng-but-angst-and-reduced-bank-balance.114177/
My OH underwent DST CHC assessment in March 19 instigated by his NHS unit and scored
1 severe
1 high
5 moderate
2 low
2 no needs
I represented my OH at the meeting which was properly convened. My strategy was to complete the DST myself and use my typed domain assessments to argue the case. I took a long time to research/prepare and found the process very hard; being focussed/negative about OH in such detail was depressing. We were refused CHC and granted FNC. We disagreed on 3 domains, one of which they scored high I had scored severe. I gave them a copy of my domain assessments at the end of the meeting. I agree interpretation makes the whole process difficult along with the fact that barely 20% of applications are successful depending where you live.
I have posted our history before and am always pondering how on earth we got here. Briefly in September 18 he was taken to hospital by paramedics after he dialled 999. He subsequently had 2 failed residential placements, admission to another hospital and following a mental health assessment was admitted to an NHS mental health unit in January 19. Prior to this I looked after him with carers (18 hours including 1 waking night) and it was not easy and I pondered respite but overall I never thought what happened would happen. He is labelled now and despite being assessed by several NHs only one is likely to take him and he is top of their waiting list. Ironically they take a high proportion of LA residents which is why there is a W/l for self pay.
I have had free advice who felt I should appeal. My reason for applying for CHC was the high probability of needing 1:1 24 hr care for some time after admission. I have been quoted £3500 pw in the past. I had always expected to pay for care fees if the need arose but I now worry we could run out of money. We are not married but have been together for a long time.
I did not expect him to be in his NHS unit after 6 months and currently as we do not pay fees I don’t feel like going through a review as life is hard enough. I have two months to decide under the 6 month review period. I visit OH every day and it does not get any easier as he always wants to come with me when I leave. I can’t say I feel better with him being away, something which is mentioned a lot here.
Has anyone reapplied for CHC having let the review period lapse?
Thank you for any advice offered. Sorry this is a little convoluted.
 
Last edited by a moderator:

LocalResident

Registered User
Jul 21, 2013
20
My OH underwent DST CHC assessment in March 19 instigated by his NHS unit and scored
1 severe
1 high
5 moderate
2 low
2 no needs
I represented my OH at the meeting which was properly convened. My strategy was to complete the DST myself and use my typed domain assessments to argue the case. I took a long time to research/prepare and found the process very hard; being focussed/negative about OH in such detail was depressing. We were refused CHC and granted FNC. We disagreed on 3 domains, one of which they scored high I had scored severe. I gave them a copy of my domain assessments at the end of the meeting. I agree interpretation makes the whole process difficult along with the fact that barely 20% of applications are successful depending where you live.
I have posted our history before and am always pondering how on earth we got here. Briefly in September 18 he was taken to hospital by paramedics after he dialled 999. He subsequently had 2 failed residential placements, admission to another hospital and following a mental health assessment was admitted to an NHS mental health unit in January 19. Prior to this I looked after him with carers (18 hours including 1 waking night) and it was not easy and I pondered respite but overall I never thought what happened would happen. He is labelled now and despite being assessed by several NHs only one is likely to take him and he is top of their waiting list. Ironically they take a high proportion of LA residents which is why there is a W/l for self pay.
I have had free advice who felt I should appeal. My reason for applying for CHC was the high probability of needing 1:1 24 hr care for some time after admission. I have been quoted £3500 pw in the past. I had always expected to pay for care fees if the need arose but I now worry we could run out of money. We are not married but have been together for a long time.
I did not expect him to be in his NHS unit after 6 months and currently as we do not pay fees I don’t feel like going through a review as life is hard enough. I have two months to decide under the 6 month review period. I visit OH every day and it does not get any easier as he always wants to come with me when I leave. I can’t say I feel better with him being away, something which is mentioned a lot here.
Has anyone reapplied for CHC having let the review period lapse?
Thank you for any advice offered. Sorry this is a little convoluted.
Has anyone reapplied for CHC having let the review period lapse?
++++++++
Has anyone reapplied for CHC having let the review period lapse?
+++++++
I'm not sure about this, however, I've been told that if an appeal is in progress [and that appeal may continue], and patient's condition/circumstances change, you can ask for another DST to be done. Then you consider the result. How this kind of situation is handled might depend on the particular NHS Trust /NHS Clinical Commissioning Group. If two appeals are going on at the same time - I would expect them to be 'combined'.
[However also bear in mind, when a DST is retrospective then the process/procedures are most likely to be different. I've been told that retrospective cases are called 'reviews' and non-retrospective cases are 'appeals'.]

So, if they you should appeal - follow it up - enquire how much they will need to start your appeal etc. etc. Good luck and prayers.
 
Last edited by a moderator:

Jackie1962

New member
Aug 10, 2019
2
Apologies if I’m not posting in the correct place
My mum has been receiving CHC for almost 4 years. Yesterday I was told that this will discontinue and she will be moved from her NH to a a CH and receive partial nhs funding.
The only thing that’s changed for mum is a broken leg which happened earlier in the year. Because she is in late stage Alzheimer’s she’s been left with it in a pot as she can’t understand physio etc. So now she is unable to walk etc.
They said her hallucinations are happy ones so that’s nice for her..!

I’m fuming! Because she is drugged to the eyeballs and is now immobile she’s better!

I just don’t know how I’m going to cope with an appeal as I’m about to undergo major surgery which will mean I’m non weight baring for months.
Will her funding stop immediately? It’s immoral to move her at such a late stage..oh my head is cabbaged with the injustice of it all..

Sorry for the rant!
Jackie
 

Moose1966

Registered User
Feb 10, 2017
146
Staffordshire
Apologies if I’m not posting in the correct place
My mum has been receiving CHC for almost 4 years. Yesterday I was told that this will discontinue and she will be moved from her NH to a a CH and receive partial nhs funding.
The only thing that’s changed for mum is a broken leg which happened earlier in the year. Because she is in late stage Alzheimer’s she’s been left with it in a pot as she can’t understand physio etc. So now she is unable to walk etc.
They said her hallucinations are happy ones so that’s nice for her..!

I’m fuming! Because she is drugged to the eyeballs and is now immobile she’s better!

I just don’t know how I’m going to cope with an appeal as I’m about to undergo major surgery which will mean I’m non weight baring for months.
Will her funding stop immediately? It’s immoral to move her at such a late stage..oh my head is cabbaged with the injustice of it all..

Sorry for the rant!
Jackie
Hi just been through this , briefly mum was part funding in CH for two years , totally bedridden not able to feed , move , dress etc took a down turn deemed EOL so was fast tracked CHC and I was told to find NH within the week !i didn’t want to move her but they gave me no choice . Found one thankfully very pricey but they authorised it and she moved . Three months down the line CHC review and they withdraw funding despite being scored 1 severe 3 highs 3 moderate etc borderline I believe . The review was 3rd July funding stopped on 6th August . It was then transferred to LA for them to pick up funding as she is below threshold , they dithered and it seem as she had survived !!!! she was obviously stable enough to move to cheaper NH . Thankfully I had an amazing social worker who said no way was mum fit enough to move she’d only just settled from last forced move . After a stressful week we got the result she can stay where she is , it’s an amazing home and they manage her needs very well . Remember a managed need is still a need !! . You must stand your corner .
 

Jackie1962

New member
Aug 10, 2019
2
Hi just been through this , briefly mum was part funding in CH for two years , totally bedridden not able to feed , move , dress etc took a down turn deemed EOL so was fast tracked CHC and I was told to find NH within the week !i didn’t want to move her but they gave me no choice . Found one thankfully very pricey but they authorised it and she moved . Three months down the line CHC review and they withdraw funding despite being scored 1 severe 3 highs 3 moderate etc borderline I believe . The review was 3rd July funding stopped on 6th August . It was then transferred to LA for them to pick up funding as she is below threshold , they dithered and it seem as she had survived !!!! she was obviously stable enough to move to cheaper NH . Thankfully I had an amazing social worker who said no way was mum fit enough to move she’d only just settled from last forced move . After a stressful week we got the result she can stay where she is , it’s an amazing home and they manage her needs very well . Remember a managed need is still a need !! . You must stand your corner .
Thank you for responding so quickly.
May I ask did you have to do a formal appeal? Unfortunately I wasn’t at the multidisciplinary meeting so only told over the phone.
Jackie
 

Moose1966

Registered User
Feb 10, 2017
146
Staffordshire
Thank you for responding so quickly.
May I ask did you have to do a formal appeal? Unfortunately I wasn’t at the multidisciplinary meeting so only told over the phone.
Jackie
We didn’t appeal for the CHC funding as the lady who did the review was adamant that funding was to be withdrawn. Mum now has Funded Nursing Care which is a weekly contribution from the NHS and then Local Authority pick up shortfall after mums contribution .
 

Moose1966

Registered User
Feb 10, 2017
146
Staffordshire
It was left by CHC team that if mums needs changed they’re to be notified and will come and review again with a view to reinstating CHC funding . I’m not happy about that it just means they keep assessing mum which is distressing for us and they can withdraw it again if she rallies again . The sad part is mum is no better it is just that this NH are brilliant at managing her lack of mobility and skin breakdowns .
 

LocalResident

Registered User
Jul 21, 2013
20
hello @Jackie1962
a warm welcome to DTP
a worrying time for you with your mum and your own upcoming surgery

Hi,
Also contact Beacon CHC. They provide 90 minutes free telephone advice.
You'll have to make an appointment for Beacon to call you back.
Be prepared, and be concise, when you speak to one of their professional officers.
The 90 minutes does not need to be used all in one call.
++++++
And IF the NHS Trust/NHS CCG has failed to follow the correct procedures [whatever they are in your type of case] you can also make a COMPLETELY separate complaint about the Trust/CCG not doing things correctly. Remember if you do this, ensure that you make it clear you're complaining about their failures etc. etc. and not for example about a DST/appeal etc.
++++
 

LocalResident

Registered User
Jul 21, 2013
20
It was left by CHC team that if mums needs changed they’re to be notified and will come and review again with a view to reinstating CHC funding . I’m not happy about that it just means they keep assessing mum which is distressing for us and they can withdraw it again if she rallies again . The sad part is mum is no better it is just that this NH are brilliant at managing her lack of mobility and skin breakdowns .
Hi,
Also contact Beacon CHC. They provide 90 minutes free telephone advice.
You'll have to make an appointment for Beacon to call you back.
Be prepared, and be concise, when you speak to one of their professional officers.
The 90 minutes does not need to be used all in one call.

And IF the NHS Trust/NHS CCG has failed to follow the correct procedures [whatever they are in your type of case] you can also make a COMPLETELY separate complaint about the Trust/CCG not doing things correctly. Remember if you do this, ensure that you make it clear you're complaining about their failures etc. etc. and not for example about a DST/appeal etc.
 

Nigel_2172

Registered User
Aug 8, 2017
42
Shropshire
My wife was awarded partial CHC two years ago when she was still at home. She was subsequently moved to a nursing home, requiring 24 hour nursing care. At that point, she was awarded FNC (Funded Nursing Care) as well but we were advised that the CHC would be reduced by an amount equal to the CHC payment. Is this correct?
 

Louise7

Registered User
Mar 25, 2016
2,583
I'm a bit confused. CHC funding is paid by the NHS to those who have a primary health need for care, and all care needs are fully funded. There is no such thing as 'partial CHC' - you either qualify for full funding or you don't. Funded Nursing Care is paid to those who have some nursing needs but their care needs do not qualify them for the full CHC funding. It is only paid to those who are in a nursing home, and paid directly to the home. You can't get paid both CHC and FNC at the same time.

It sounds like your wife's care needs were partially funded by the local authority when she was at home (not CHC) and now she has moved to a nursing home they will still partially fund her care but the FNC will be taken into account.
 

Nigel_2172

Registered User
Aug 8, 2017
42
Shropshire
I would agree that partial CHC funding does not exist in theory. In our case, there was such a delay following assessment that the local CCG director made a discretionary partial award as some form of appeasement. I guess that in doing so, the normal rules do not apply and the offsetting is probably also a discretionary decision aimed purely at reducing the cost when they had the opportunity to do so.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
My husband took a call from a very flustered Dads SW yesterday ! I guess the realisation that time frames had not been met & the fact that Dads medical needs were definitely not being met might mean the next appraisal at work might not go to well!
I’m glad Hubby took the call, my calm, calculating business minded hubby who let the social worker know in polite terms that if we had sought help from the GP - OT etc as the care home wouldn’t on Dads behalf if this upset her processes since we had already informed her of the issues & she herself raised safeguarding issues this was not of his or our concern!

our duty of care to our PWD was the first & foremost & only concern. If the SW didn’t act on the information given to her by us - that’s her problem.

our repeat requests to the home for assessments & CHC funding have been received with scorn - leading to safeguarding. Having repeatedly tried to get Dad CHC assessment done I have now contacted the Head of Social services & requested that things be sorted out. safeguarding raised in September!! We are almost in December & the SW & home block us all the way - even to the point of denying the validity of the OT assessment????

CHC funding isn’t always granted but it is a legal right to be assessed no matter if it creates more paperwork!!

Hope this system changes soon!
 

Forum statistics

Threads
116,883
Messages
1,709,792
Members
67,652
Latest member
Charmaine R