CHC: Finally after 18 months of legal quibbling...

[Jaded'n'faded]

Hello PollyMolly I would so much like to be able to speak to you/email/facetime to pass on my advice and tips. So much to say . I'm not holding myself out to be any sort of CHC expert and although a retired solicitor I would in no way be giving legal advice --- just passing on my views based on my experience with Devon ICB. I'm not sure what the rules are about exchanging email details in order that I can contact you direct?? The appeal process can be long, stressful and emotionally draining - the prospect of success low. My appeal meeting took 9 hours spread over three non - consecutive days. However don't let that deter you - if people don't challenge then changes to the CHC process are never going to happen and ICB's are never going to held accountable for their poor procedures and reaching incorrect decisions. I appealed on both possible grounds -- failure to comply with due process and procedure and failure to correctly apply the ancillary and incidental test to reach the correct decision re eligibility. More than happy to pass on a copy of my written grounds of appeal if you feel that would be of help. There is nothing to stop you advising the ICB that you wish to appeal - direct to a Stage 2 internal appeal meeting. The completion by you of the appeal paperwork can then be considered . There is no need to go into full detail in the Notice of Appeal - I used a series of bullet points and expanded on these at the appeal meeting itself. I don't know if you are the Attorney for your parent under a LPA ? It is in my view imperative that you request from the ICB
1. A copy of the decision making document. I assume you have a copy of the DST - this contains a recommendation only. You need to ask for a copy of the decision making document if you do not already have a copy.
2. A copy of the CHC policy document being followed by Devon ICB and a copy of the CHC appeal policy document. ( Interestingly I took a previous DST appeal to the Independent Review Panel in 2021 with one of the recommendations being for Devon ICB to develop and ratify a CHC policy document as a matter of urgency - surprise, surprise this has not been implemented despite the time lapse.)
3. Copies of all documents listed in the DST under the heading Key Documents in the DST . Under the National Framework you are entitled to see copies of all documents that have been taken into account by the ICB in reaching it's decision. Disclosure will probably have to be dealt with by their Data Protection Team.

As stated I'm happy to help in any way I can.

Hi @Netty2 that's great advice and also your offer of further help to PollyMolly/others - brilliant.

I can't help noticing that you are a retired solicitor and are clearly articulate and indeed, eloquent! My issue with the CHC process is this:

failure to comply with due process and procedure and failure to correctly apply the ancillary and incidental test to reach the correct decision re eligibility.

Now, I understand that, and I'm sure some others do but I'm equally sure there are far more people out there who would really struggle with the terminology and procedures used during the CHC process. How is someone with a poor education or just a difficulty in understanding supposed to 'win' a CHC application or an appeal? And it seems to me that the eventual decision is often made on a technicality (such as procedural errors) and is very far removed from the health/needs of the actual person all this is supposed to benefit.

Do you have to be a lawyer now (or employ one) to get the funding someone is rightfully entitled to? It seems to have gone way beyond the scope of the 'ordinary man/woman in the street'. As I have mentioned elsewhere, you can bet that no one without determined family to fight for them gets awarded CHC.

People are entitled to CHC if they qualify. It should be a simple process, not something requiring 9 hours of meetings or legal teams.

 

[Netty2]

Hi @Netty2 that's great advice and also your offer of further help to PollyMolly/others - brilliant.

I can't help noticing that you are a retired solicitor and are clearly articulate and indeed, eloquent! My issue with the CHC process is this:

Now, I understand that, and I'm sure some others do but I'm equally sure there are far more people out there who would really struggle with the terminology and procedures used during the CHC process. How is someone with a poor education or just a difficulty in understanding supposed to 'win' a CHC application or an appeal? And it seems to me that the eventual decision is often made on a technicality (such as procedural errors) and is very far removed from the health/needs of the actual person all this is supposed to benefit.

Do you have to be a lawyer now (or employ one) to get the funding someone is rightfully entitled to? It seems to have gone way beyond the scope of the 'ordinary man/woman in the street'. As I have mentioned elsewhere, you can bet that no one without determined family to fight for them gets awarded CHC.

People are entitled to CHC if they qualify. It should be a simple process, not something requiring 9 hours of meetings or legal teams.

I could not agree with you more. It is totally unfair, both the CHC assessment process and the way it is carried out. It should not be dependent on " intelligence" or having access to legal representation. I have tried to do everything I can to highlight the unfairness and the difficulties for those individuals who do not have a family member to act for them, for individuals whose skills and knowledge may lie elsewhere and for whom reading and digesting the National Framework/significant quantities of documents and arguing their case is very difficult. I have pursued numerous formal complaints against Devon ICB - all upheld - in an attempt to get them to address poor practice/incorrect procedures/failings to have a proper disclosure of information procedures. I took the first DST my dad had to an Independent Review Panel- successfully obtaining recommendations for changes in process/procedure as operated by Devon ICB - hopefully to benefit all involved in this tortuous process. One of my complaints is currently with the Parliamentary Ombudsman . I have two further complaints pending with Devon ICB - one in respect of the redress procedures, one on respect of the internal appeal process. My father died in May 2021 , we fortunately have had a refund of care home fees, but I am still pursuing anything I can ,such is my level of frustration, to try and bring about changes. It will take far more than the efforts of individuals to tackle the issues and inequalities in respect of the CHC process. I have shared my experiences with the Alzheimer's Society/Dementia UK, MP, even the Daily Mail (!) in an attempt to highlight my concerns. I have just submitted a letter to The Guardian in response to three interesting articles published in the paper yesterday relating to the care of elderly/those with dementia. My letter concluded -
"As a retired solicitor I had some skills to be able to represent my father’s interests . What happens to those individuals who are not so fortunate?"
My letter probably won't be published but my efforts will not stop.

 

[Jaded'n'faded]

The fact that all your complaints were upheld says a lot, doesn't it?

On behalf of all those hoping for/needing change, thank you for all your work, which must represent considerable time and effort. I really hope you get somewhere with the Parliamentary Ombudsman and the other avenues you are pursuing. Like you, I try to highlight this (and other serious care issues) where I can.

 

[Palerider]

I could not agree with you more. It is totally unfair, both the CHC assessment process and the way it is carried out. It should not be dependent on " intelligence" or having access to legal representation. I have tried to do everything I can to highlight the unfairness and the difficulties for those individuals who do not have a family member to act for them, for individuals whose skills and knowledge may lie elsewhere and for whom reading and digesting the National Framework/significant quantities of documents and arguing their case is very difficult. I have pursued numerous formal complaints against Devon ICB - all upheld - in an attempt to get them to address poor practice/incorrect procedures/failings to have a proper disclosure of information procedures. I took the first DST my dad had to an Independent Review Panel- successfully obtaining recommendations for changes in process/procedure as operated by Devon ICB - hopefully to benefit all involved in this tortuous process. One of my complaints is currently with the Parliamentary Ombudsman . I have two further complaints pending with Devon ICB - one in respect of the redress procedures, one on respect of the internal appeal process. My father died in May 2021 , we fortunately have had a refund of care home fees, but I am still pursuing anything I can ,such is my level of frustration, to try and bring about changes. It will take far more than the efforts of individuals to tackle the issues and inequalities in respect of the CHC process. I have shared my experiences with the Alzheimer's Society/Dementia UK, MP, even the Daily Mail (!) in an attempt to highlight my concerns. I have just submitted a letter to The Guardian in response to three interesting articles published in the paper yesterday relating to the care of elderly/those with dementia. My letter concluded -
"As a retired solicitor I had some skills to be able to represent my father’s interests . What happens to those individuals who are not so fortunate?"
My letter probably won't be published but my efforts will not stop.

I think you emphasize quite well how difficult addressing the CHC process is. Most people not only would not have the necessary skills they would likely be too frazzled to even think of challenging any CHC decision. The system is stacked against those whom it is for and very much needs big reform.

 

[Palerider]

Just checked my emails. Mums advocate contacted the ICB before this weekend and still nothing, despite being told the outcome would arrive this last week by post.

I am now over the 18 month mark when I dug my heels in and to be honest I think this is just not acceptable given there are time frames within which further appeals can be lodged. I also feel that the system even more so now does not grasp the reality within which it performs. I can safely say the way how this started till now has been in my view badly managed and it seems it continues to be badly managed. I have no faith in this at all.

 

[Jaded'n'faded]

You are right. It is a total shambles

 

[PollyMolly]

Hello PollyMolly I would so much like to be able to speak to you/email/facetime to pass on my advice and tips. So much to say . I'm not holding myself out to be any sort of CHC expert and although a retired solicitor I would in no way be giving legal advice --- just passing on my views based on my experience with Devon ICB. I'm not sure what the rules are about exchanging email details in order that I can contact you direct?? The appeal process can be long, stressful and emotionally draining - the prospect of success low. My appeal meeting took 9 hours spread over three non - consecutive days. However don't let that deter you - if people don't challenge then changes to the CHC process are never going to happen and ICB's are never going to held accountable for their poor procedures and reaching incorrect decisions. I appealed on both possible grounds -- failure to comply with due process and procedure and failure to correctly apply the ancillary and incidental test to reach the correct decision re eligibility. More than happy to pass on a copy of my written grounds of appeal if you feel that would be of help. There is nothing to stop you advising the ICB that you wish to appeal - direct to a Stage 2 internal appeal meeting. The completion by you of the appeal paperwork can then be considered . There is no need to go into full detail in the Notice of Appeal - I used a series of bullet points and expanded on these at the appeal meeting itself. I don't know if you are the Attorney for your parent under a LPA ? It is in my view imperative that you request from the ICB
1. A copy of the decision making document. I assume you have a copy of the DST - this contains a recommendation only. You need to ask for a copy of the decision making document if you do not already have a copy.
2. A copy of the CHC policy document being followed by Devon ICB and a copy of the CHC appeal policy document. ( Interestingly I took a previous DST appeal to the Independent Review Panel in 2021 with one of the recommendations being for Devon ICB to develop and ratify a CHC policy document as a matter of urgency - surprise, surprise this has not been implemented despite the time lapse.)
3. Copies of all documents listed in the DST under the heading Key Documents in the DST . Under the National Framework you are entitled to see copies of all documents that have been taken into account by the ICB in reaching it's decision. Disclosure will probably have to be dealt with by their Data Protection Team.

As stated I'm happy to help in any way I can.

Hello PollyMolly I would so much like to be able to speak to you/email/facetime to pass on my advice and tips. So much to say . I'm not holding myself out to be any sort of CHC expert and although a retired solicitor I would in no way be giving legal advice --- just passing on my views based on my experience with Devon ICB. I'm not sure what the rules are about exchanging email details in order that I can contact you direct?? The appeal process can be long, stressful and emotionally draining - the prospect of success low. My appeal meeting took 9 hours spread over three non - consecutive days. However don't let that deter you - if people don't challenge then changes to the CHC process are never going to happen and ICB's are never going to held accountable for their poor procedures and reaching incorrect decisions. I appealed on both possible grounds -- failure to comply with due process and procedure and failure to correctly apply the ancillary and incidental test to reach the correct decision re eligibility. More than happy to pass on a copy of my written grounds of appeal if you feel that would be of help. There is nothing to stop you advising the ICB that you wish to appeal - direct to a Stage 2 internal appeal meeting. The completion by you of the appeal paperwork can then be considered . There is no need to go into full detail in the Notice of Appeal - I used a series of bullet points and expanded on these at the appeal meeting itself. I don't know if you are the Attorney for your parent under a LPA ? It is in my view imperative that you request from the ICB
1. A copy of the decision making document. I assume you have a copy of the DST - this contains a recommendation only. You need to ask for a copy of the decision making document if you do not already have a copy.
2. A copy of the CHC policy document being followed by Devon ICB and a copy of the CHC appeal policy document. ( Interestingly I took a previous DST appeal to the Independent Review Panel in 2021 with one of the recommendations being for Devon ICB to develop and ratify a CHC policy document as a matter of urgency - surprise, surprise this has not been implemented despite the time lapse.)
3. Copies of all documents listed in the DST under the heading Key Documents in the DST . Under the National Framework you are entitled to see copies of all documents that have been taken into account by the ICB in reaching it's decision. Disclosure will probably have to be dealt with by their Data Protection Team.

As stated I'm happy to help in any way I can.

Thank you Netty2 -I am so grateful for your reply and for your generous offer to share a copy of your written grounds for appeal. It would be great to be able to chat directly via any means you would be most comfortable with -e mail, FaceTime whatever suits you best. However, I'm a new member and I think you need to have posted on here 10 times before you can actually PM (called on here a 'conversation"? )I have lots of questions regarding the info your reply and could post some of them as separate posts maybe, to reach the required 10?!!
Thank you so much and hope we can find a way to be able to continue the conversation!!

 

[Netty2]

Thank you Netty2 -I am so grateful for your reply and for your generous offer to share a copy of your written grounds for appeal. It would be great to be able to chat directly via any means you would be most comfortable with -e mail, FaceTime whatever suits you best. However, I'm a new member and I think you need to have posted on here 10 times before you can actually PM (called on here a 'conversation"? )I have lots of questions regarding the info your reply and could post some of them as separate posts maybe, to reach the required 10?!!
Thank you so much and hope we can find a way to be able to continue the conversation!!

 

[Netty2]

Happy PollyMolly to give the ten posts a go to try and ensure we can continue our conversation.

 

[PollyMolly]

Happy PollyMolly to give the ten posts a go to try and ensure we can continue our conversation.

Thank you so much Netty2. I will do the same -there are many going through the same horrible circumstances on this forum and hopefully can benefit from your wise advice and any snippets of advice or encouragement I can come up with. You have already given me huge encouragement at a point where I really need it!!

 

[PollyMolly]

Thank you so much Netty2. I will do the same -there are many going through the same horrible circumstances on this forum and hopefully can benefit from your wise advice and any snippets of advice or encouragement I can come up with. You have already given me huge encouragement at a point where I really need it!!

For starters, I didn't know there was a decision making document. I only have the DST as you suspected.

 

[nitram]

For starters, I didn't know there was a decision making document. I only have the DST as you suspected.

As well as the DST there is a national framework which you may not have seen,

 

[PollyMolly]

Thank you @nitram , I have seen parts of it quoted in other sources I have looked up, but I think I'll now have to sit down and go through it thoroughly! Many thanks for reminding me.

 

[Netty2]

The DST contains a recommendation as to eligibility. There should then be a distinct and separate decision on eligibility made. Invariably if there is a recommendation in the DST that someone is not eligible for CHC funding this will be endorsed by the decision maker(s). However there should be an actual decision making document/record. I found it invaluable to have a copy of the decision making document in addition of course to the DST. An appeal is against the DECISION and not the recommendation in the DST so in my view you need to see the decision making document as well as the DST. The decision making document should show if the decision makers endorsed the DST in its entirety or if they came to any different view in respect of scoring of the domains/ their view on the ancillary and incidental test. Is should show what documentation they took into account in reaching the decision. In my father's case the decision making document showed a rubber stamping of the recommendation in the DST, that the decision makers had recorded a decision in advance of one of the MDT members actually giving his agreement to the recommendation in the DST, failed to address the ancillary and incidental test and it also failed to pick up on procedural irregularities in the DST such as incorrect scoring on a MUST assessment carried out by the assessors without my knowledge and which scored a lower risk than the MUST assessment on my father's care home records. These issues can cast doubt on the effectiveness/accuracy of the decision - all matters that can be raised in an appeal.

Initially I had no real knowledge of the National Framework -- I read it, re-read it many times , quoted from it extensively at the appeal meeting to justify arguments I was making.

I again reiterate that I am not holding myself out to be any sort of expert and I am not giving legal advice just passing on my views and personal experience in the hope that it might help others.

 

[Jaded'n'faded]

I had a theoretical conversation about CHC (i.e. should it become necessary for my mum) with the SW who did her DoLS. I mentioned that having looked online, XX county seemed pretty good at awarding CHC. She said, 'Yes, but unfortunately here you come under XXX health authority and they never give it.'

So there are enormous geographical inequalities too.

 

[PollyMolly]

The DST contains a recommendation as to eligibility. There should then be a distinct and separate decision on eligibility made. Invariably if there is a recommendation in the DST that someone is not eligible for CHC funding this will be endorsed by the decision maker(s). However there should be an actual decision making document/record. I found it invaluable to have a copy of the decision making document in addition of course to the DST. An appeal is against the DECISION and not the recommendation in the DST so in my view you need to see the decision making document as well as the DST. The decision making document should show if the decision makers endorsed the DST in its entirety or if they came to any different view in respect of scoring of the domains/ their view on the ancillary and incidental test. Is should show what documentation they took into account in reaching the decision. In my father's case the decision making document showed a rubber stamping of the recommendation in the DST, that the decision makers had recorded a decision in advance of one of the MDT members actually giving his agreement to the recommendation in the DST, failed to address the ancillary and incidental test and it also failed to pick up on procedural irregularities in the DST such as incorrect scoring on a MUST assessment carried out by the assessors without my knowledge and which scored a lower risk than the MUST assessment on my father's care home records. These issues can cast doubt on the effectiveness/accuracy of the decision - all matters that can be raised in an appeal.

Initially I had no real knowledge of the National Framework -- I read it, re-read it many times , quoted from it extensively at the appeal meeting to justify arguments I was making.

I again reiterate that I am not holding myself out to be any sort of expert and I am not giving legal advice just passing on my views and personal experience in the hope that it might help others.

Thank you so much @Netty2 for explaining the relevance of the decision making document -this is so helpful.I am also going to read up on the national framework as previously suggested by @nitram and as you have also suggested. (Nearly 10 posts too I think!!)

 

[PollyMolly]

I had a theoretical conversation about CHC (i.e. should it become necessary for my mum) with the SW who did her DoLS. I mentioned that having looked online, XX county seemed pretty good at awarding CHC. She said, 'Yes, but unfortunately here you come under XXX health authority and they never give it.'

So there are enormous geographical inequalities too.

It seems so unfair doesn't it -so hard to see your parent struggle and then you have to jump through a million hoops to try to get anywhere near the help and support they need.

 

[PollyMolly]

.....I also really struggle with trying to understand the "incidental and ancillary" test....I just can't accept that my dad's needs fall into the LA's remit , having read several definitions of what it should mean....but it's so hard to pin down where the boundary between LA and NHS provision falls . I find myself repeatedly questioning my own judgement even though I thought I had described my dad's health and medical needs really well during the meeting.......

 

[Netty2]

.....I also really struggle with trying to understand the "incidental and ancillary" test....I just can't accept that my dad's needs fall into the LA's remit , having read several definitions of what it should mean....but it's so hard to pin down where the boundary between LA and NHS provision falls . I find myself repeatedly questioning my own judgement even though I thought I had described my dad's health and medical needs really well during the meeting.......

Hello PollyMolly - I received and was able to read your "conversation" posted to me yesterday evening but unfortunately not able to reply direct. I raised this with the Dementia Talking Point Team who have replied as follows -

The issue of not being able to reply to messages can come from a member sending the message accidently ticking the "Lock conversation (no responses will be allowed)" box when sending the message. This means that while the message will be sent, no further messages or replies will be allowed. In this screenshot I have put below, you can see what the box looks like when you send messages and the "lock conversation box" (just above the start conversation button).

I would recommend that you ask the registered member to send a new message, but to make sure that they do not tick this lock conversation box and this should resolve the issue. If you experience any more issues, just let me know and I will do my best to resolve them.



Best wishes,

Joe
Dementia Talking Point team


PollyMolly - You can try again! I am happy with your suggestion as contained in your "conversation" post yesterday. My offer still stands!

 

[Palerider]

Well I finally have the outcome of the latest appeal and it was that mum is not eligible, so a negative outcome. Whilst they have taken into consideration the key evidential points raised and acknowledged the same, they have then simply discounted them from their conclusions.

The next stage is to take this out of local area to NHS England. I am currently deliberating on spending money on further legal fees. Either way its money that if not spent on legal fees will be swallowed up in care fees, and it is a legitimate cause. What would others do?