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CHC (Continuing Healthcare) support thread

Katie_Fr

Registered User
Sep 30, 2018
22
It is absolutely frustrating that families should still finance the NH fees, during the appeal, the cost of NH takes lots of money from family's budget, so maybe they expect people won't be able to finance the appeal and lawyer costs.
 

Louise7

Registered User
Mar 25, 2016
2,583
It is absolutely frustrating that families should still finance the NH fees, during the appeal, the cost of NH takes lots of money from family's budget, so maybe they expect people won't be able to finance the appeal and lawyer costs.
But the families don't have to fund nursing home fees unless they choose to do so by way of 3rd party top ups. The financial assessment is carried out on the person who is in the home, not their families. If the individual doesn't have enough assets/income to fund the fees themselves the local authority will pay (providing it is agreed that the person needs to be in a nursing home). The choice of home is likely to be limited but there is no obligation on families to pay any care fees themselves. It costs nothing to submit an appeal and you don't need to instruct a lawyer. There was a thread here recently from someone who had paid £15,000 to a 'specialist' company to take forward an appeal and they still didn't win.
 

Katie_Fr

Registered User
Sep 30, 2018
22
But the families don't have to fund nursing home fees unless they choose to do so by way of 3rd party top ups. The financial assessment is carried out on the person who is in the home, not their families. If the individual doesn't have enough assets/income to fund the fees themselves the local authority will pay (providing it is agreed that the person needs to be in a nursing home). The choice of home is likely to be limited but there is no obligation on families to pay any care fees themselves. It costs nothing to submit an appeal and you don't need to instruct a lawyer. There was a thread here recently from someone who had paid £15,000 to a 'specialist' company to take forward an appeal and they still didn't win.
We were estimated as full funding because my MIL and FIL have a small shop, which they rent (the rent is small - covers only 10% of his monthly care home fees), but allows my MIL to live, she doesn't want to sell her 50%. We are trying to sell his 50% share, but no one shows any interest. Commercial property is not very popular these days, especially if it is in a small town. We already spent all the cash money my FIL had, and have to finance it ourselves, who knows how long will it take to sell his 50% of the shop.

We live in the south of the UK (to move him up north wouldn't be an option, because we don't have anyone there). We didn't see any care home with the fees of 600/week, when we were placing my FIL, they started at 900, and the one which costs 900 looked very grim. So I guess, even when we will be entitled to the LA funding, we will have to finance top-up fees anyway.

We didn't plan to place my FIL into the NH, it was done only because of unsafety and impossibility to keep him at home for his own well-being, that's why I believe he should be entitled to the CHC.

I didn't pay any money to the lawyers to submit an appeal, I have written it myself... but I guess at the later stages we will need a lawyer, which will be expensive together with the payment of his care home fees.
 

Fearnodarkness

Registered User
Jun 10, 2014
38
The appeal process can take months (even years), with no guarantee of success, and in the meantime the home needs to be paid. If you are successful at appeal the funding will be backdated. Nhs funding stops at the point it is no longer deemed to be necessary, not at the point when all avenues to appeal have been exhausted.
The question of backdating is one where the CHC/CCGs hold all the cards. We were told Mum's original assessment would be backdated ... so we postponed by 2 weeks because my husband needed to go on a training conference that day ... and they only backdated to the date of the (postponed) assessment. Needless to say I wasn't told this when I asked for the postponement. The person asked if I was sure about this, but didn't give me any information even when i asked if there was something I should know. 2 weeks' funding with Mum's complex condition was significant, we would have quit the training day if we had known, even if he had to pay to make it up somewhere else afterward.

There is no clear information about this anywhere I can find; I thought any backdate was to when the need started, but it appears it isn't - it's arbitrary.

NOW there is to be a 3-month assessment, right when we are on holiday - we are not asking to have it postponed this time, as the Care Home is representing Mum and her situation has not changed.

But now I am wondering if this is unwise and we should ask for a postponement simply so that one or both or us can turn up and show our faces. Last time we did this, but there was a limit to what we could add to the Care Manager's information, and for this we lost a period of funding. We didn't know any better, and were advised to be involved so that we knew what was happening.

The Care Manager was very good, and the assessment team did give us a copy of the DST more or less right away.

Has anyone any experience of this?
 

LocalResident

Registered User
Jul 21, 2013
20
Additional suggestion if NHS CHC is refused …
Especially if there are errors in the DST document which you eventually receive ...
Submit an appeal, however, I think you should also submit a separate formal complaint to the CCG or Hospital Trust that prepared the DST document. Look very carefully through the whole document; check everything! The formal complaint must be dealt with - probably while you are still waiting for the actual appeal to proceed. And remember, not only will the appeal probably take many months, if you eventually end up forwarding your complaint to the Ombudsman - it may take a year!
++++++
My suggestion above is as a result of an appalling situation I faced in 2018 which concerned a DST Document - full of errors - so I think it is essential at the initial Local Review Meeting, the appellant should comment on the content of the DST document. The appellant can lodge a formal complaint if there are errors, inaccuracies, or the need to clarify things in the document. A complaint may be submitted later and not at this time.
This will help avoid the absolutely appalling situation that I faced, - especially in cases where an appeal (for a particular reason) does not go ahead or gets closed.
+++++
And remember the Alzh. Society's Booklet is very useful.
Also Beacon provides excellent guidance.
 

Georgina63

Registered User
Aug 11, 2014
968
Additional suggestion if NHS CHC is refused …
Especially if there are errors in the DST document which you eventually receive ...
Submit an appeal, however, I think you should also submit a separate formal complaint to the CCG or Hospital Trust that prepared the DST document. Look very carefully through the whole document; check everything! The formal complaint must be dealt with - probably while you are still waiting for the actual appeal to proceed. And remember, not only will the appeal probably take many months, if you eventually end up forwarding your complaint to the Ombudsman - it may take a year!
++++++
My suggestion above is as a result of an appalling situation I faced in 2018 which concerned a DST Document - full of errors - so I think it is essential at the initial Local Review Meeting, the appellant should comment on the content of the DST document. The appellant can lodge a formal complaint if there are errors, inaccuracies, or the need to clarify things in the document. A complaint may be submitted later and not at this time.
This will help avoid the absolutely appalling situation that I faced, - especially in cases where an appeal (for a particular reason) does not go ahead or gets closed.
+++++
And remember the Alzh. Society's Booklet is very useful.
Also Beacon provides excellent guidance.
Thanks @LocalResident that all sounds very similar to my experience. A DST early this year, 3 months to receive official letter of non-eligibility, appeal letter now sent and invited to a pre-appeal meeting at which I can ask questions about the DST (but that also feels like just another delay in the already painful process!). The DST report is poorly written, contains many errors and most importantly omissions (records not properly accessed or referenced).

There is also useful info on the Care to be Different website for anyone going through similar.

Good luck to anyone out there going through similar.
 

LocalResident

Registered User
Jul 21, 2013
20
Thanks @LocalResident that all sounds very similar to my experience. A DST early this year, 3 months to receive official letter of non-eligibility, appeal letter now sent and invited to a pre-appeal meeting at which I can ask questions about the DST (but that also feels like just another delay in the already painful process!). The DST report is poorly written, contains many errors and most importantly omissions (records not properly accessed or referenced).

There is also useful info on the Care to be Different website for anyone going through similar.

Good luck to anyone out there going through similar.
++++
Beacon - also provide good advice.
Try and be very prepared for your Local Review Meeting (pre-appeal).
You should remember to take notes, and you could have a mini recorder /Dictaphone switched on just put in your top pocket!
Be extremely forensic when you go through the report; correct errors, sort out inaccuracies, and where extra clarity is required 'demand' it. And of course list each and every omission.
One thing you might be also able to highlight is: check the accuracy of the attendance list - for the DST meeting.

I can not comment on how long your appeal will take.
The separate complaint - if it goes to the ombudsman it might take a year.

Be tenacious and good luck.
 

Ihtl

Registered User
Jan 19, 2016
82
Feeling pretty frustrated right now. My dad's having a review for his CHC funding, the nurse from the NHS and the social worker have said he has 'No needs' for behaviour, down from 'Priority'. I'm feeling pretty hopeless right now.
 

Ihtl

Registered User
Jan 19, 2016
82
Feeling pretty frustrated right now. My dad's having a review for his CHC funding, the nurse from the NHS and the social worker have said he has 'No needs' for behaviour, down from 'Priority'. I'm feeling pretty hopeless right now.
I'm double checking that he's still eligible for funding after he was detained under section 3 of the MHA act a couple of years ago.
 

Georgina63

Registered User
Aug 11, 2014
968
++++
Beacon - also provide good advice.
Try and be very prepared for your Local Review Meeting (pre-appeal).
You should remember to take notes, and you could have a mini recorder /Dictaphone switched on just put in your top pocket!
Be extremely forensic when you go through the report; correct errors, sort out inaccuracies, and where extra clarity is required 'demand' it. And of course list each and every omission.
One thing you might be also able to highlight is: check the accuracy of the attendance list - for the DST meeting.

I can not comment on how long your appeal will take.
The separate complaint - if it goes to the ombudsman it might take a year.

Be tenacious and good luck.
Thanks @LocalResident. An interesting point re the pre appeal meeting and recording. I attended with a friend who was going to record the meeting. At the start of the meeting we were asked if we could be recorded, which we agreed to. However we were denied the right to do so, apparently we would have needed prior permission. I'm going to start a thread now to ask for people's views on this. The pre-appeal meeting was a farce. The person who called the meeting didn't attend. I had a long list of questions, none of which were adequately addressed, lots of waffle and bamboozling and when challenged on certain inconsistencies I was downright lied to! So, appeal here we come!! I'll keep you posted.
 

LocalResident

Registered User
Jul 21, 2013
20
I'm double checking that he's still eligible for funding after he was detained under section 3 of the MHA act a couple of years ago.
Georgina63,
Hi, Please remember the appeal process may take many months. From what you've said I reckon you should submit a carefully constructed complaint. Make it absolutely clear that it is separate to the appeal. Focus on the unsatisfactory meeting. You could try and request written answers to the questions. This complaint probably should NOT be sent to the NHS CHC office or CCG in your specific area, but to the NHS Trust that is responsible for that CCG.
Good luck, and remember to talk to Beacon.
Use your free 90 minutes worth of advice carefully.
 

padmag

Registered User
May 8, 2012
259
nottingham
Thanks @LocalResident. An interesting point re the pre appeal meeting and recording. I attended with a friend who was going to record the meeting. At the start of the meeting we were asked if we could be recorded, which we agreed to. However we were denied the right to do so, apparently we would have needed prior permission. I'm going to start a thread now to ask for people's views on this. The pre-appeal meeting was a farce. The person who called the meeting didn't attend. I had a long list of questions, none of which were adequately addressed, lots of waffle and bamboozling and when challenged on certain inconsistencies I was downright lied to! So, appeal here we come!! I'll keep you posted.
I recorded the DST meeting on my phone. I didn't mention i,t just had it in my bag on record. Good job I did as the scores were downgraded when I received the official DST results. I knew I was right as the results were recorded as the official (forgot his title) read them out at the meeting.
 

Georgina63

Registered User
Aug 11, 2014
968
Georgina63,
Hi, Please remember the appeal process may take many months. From what you've said I reckon you should submit a carefully constructed complaint. Make it absolutely clear that it is separate to the appeal. Focus on the unsatisfactory meeting. You could try and request written answers to the questions. This complaint probably should NOT be sent to the NHS CHC office or CCG in your specific area, but to the NHS Trust that is responsible for that CCG.
Good luck, and remember to talk to Beacon.
Use your free 90 minutes worth of advice carefully.
Thank you, I will take that on board. When I originally contacted Beacon, they suggested they couldn't help as the funding body would be Wales, however the DST has been completed by England, so I should be able to do that.
I have several strands on the go at the moment, including a complaint via Wales as this is a cross border situation (GP in Wales so they are funding body, but located in England) and is part of the reason for delays and confusion. It's a complete mess, and very time consuming having to deal with 2 health boards but I'm determined to continue.
 

Georgina63

Registered User
Aug 11, 2014
968
I recorded the DST meeting on my phone. I didn't mention i,t just had it in my bag on record. Good job I did as the scores were downgraded when I received the official DST results. I knew I was right as the results were recorded as the official (forgot his title) read them out at the meeting.
Well done @padmag, though that is absolutely shocking!
 

LocalResident

Registered User
Jul 21, 2013
20
I'm double checking that he's still eligible for funding after he was detained under section 3 of the MHA act a couple of years ago.
Ask for and insist that a DST checklist is done. Then you will be in a better position to if necessary to ask for a full DST assessment. I've absolutely no idea if Sec 3 of the MHA can have any effect on requests for NHS CHC.
 

artyfarty

Registered User
Oct 30, 2009
267
London
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?
 

artyfarty

Registered User
Oct 30, 2009
267
London
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/
Gosh that's a lot of money!! I am worried about being sucked into some kind of horrible money pit like that. I have three siblings and we all need to agree on what we are going to do. At the moment I've said I want to do more research and that thread is really making me worry!
 

LocalResident

Registered User
Jul 21, 2013
20
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?

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.

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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.
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