Your CHC Appeals support thread

[KarenLester]

Welcome to Dementia Support Forum’s new support thread for NHS Continuing Health Care.

We are the Continuing Healthcare appeals team at Alzheimer’s Society. We are a team of 2 service coordinators supported by a group of highly knowledgeable and experienced volunteers who come with both a personal and professional understanding of Continuing Healthcare (CHC).

This new thread aims to provide carers, advocates, and people living with dementia with the tools to pursue an appeal should you wish to do so. You may seek practical and emotional support, and share your own experiences of best practices.

If you have any questions or would like more information, please comment below.

Best wishes,
Esther, Georgia, Tim and Tony

Please note:

• The team are happy to share their experiences and knowledge, but cannot provide legal advice.
• Appealing a CHC rejection is a personal decision that we cannot make for you, but we can support you to navigate the process.

We aim to respond to comments and questions within 5 working days.

Morning,

I have only just started to read about CHC funding, I didn't even know it was available. My mum 6 years post diagnosis with mixed dementia is still living with us. We have both almost given up on full time work due to the progression of her illness. I have read some of the guidelines on CHC funding but as most of her needs are being met at the moment by us both giving up our careers we have started to struggle financially and emotionally, and are considering a potential return back to work. If mum was assessed now she would grade very low with a needs assessment as there are 2 able bodied kind family members caring for her. If we both go back out to work (which we wouldn't without CHC) mums needs would be classed as an A in most categories of the assessment. How do we go about applying/explaining this? For instance I know it is a long process from what I have read. Obviously we would never leave my mum on her own and go back to work it would be catastrophic but we need to make decisions based on whats available. Mu has been self funding all of her day care etc for the last 3 years?

 

[luggy]

Morning,

I have only just started to read about CHC funding, I didn't even know it was available. My mum 6 years post diagnosis with mixed dementia is still living with us. We have both almost given up on full time work due to the progression of her illness. I have read some of the guidelines on CHC funding but as most of her needs are being met at the moment by us both giving up our careers we have started to struggle financially and emotionally, and are considering a potential return back to work. If mum was assessed now she would grade very low with a needs assessment as there are 2 able bodied kind family members caring for her. If we both go back out to work (which we wouldn't without CHC) mums needs would be classed as an A in most categories of the assessment. How do we go about applying/explaining this? For instance I know it is a long process from what I have read. Obviously we would never leave my mum on her own and go back to work it would be catastrophic but we need to make decisions based on whats available. Mu has been self funding all of her day care etc for the last 3 years?

Hi @KarenLester the first thing to do would be to request a Checklist which can be completed by a GP, Nurse, Healthcare professional or Social Worker. The Checklist is just a tool to decide whether or not someone can progress onto the next stage which is a Multi-Disciplinary Team (MDT) assessment of your mum's needs in detail. The MDT usually comprises of a CHC Nurse Assessor, a Social Worker, Care Home Representative (or in your case, yourself). When the MDT meeting is finished, they will decide whether or not someone is eligible. The bar is set quite high, so it is advisable to do your research and assemble your evidence beforehand.

Have a look at the 'Care To Be Different' website - there's heaps of information on there, or 'Beacon CHC'. (I'm hopeless with technology, so I can't post the links).

 

[sdmhred]

Well ….the meeting was short if not sweet! Neither assessor had received or looked through any information on mum. They wanted to proceed and then have a separate meeting without us when they looked at the evidence - sounds all a bit suspect to me! Anyway they then said maybe best to reconvene……she hasn’t had any daily records …so has requested 2 weeks - I challenged her as to that time frame …and she held firm that was enough….isn’t it 3 months in NSF?
my brother who attended to give me moral support and works in the private sector was appalled at how it was like being back at school 🤣🤣🤣

Thank you all

i have sent my diary off as well as a brief summary of how the domains interact with each other.

I work for SS in a different capacity and there is no doubt she has a primary healthcare need but whether they will accept it is severe and complex enough I don’t know.

The dementia comes into play as she has zero awareness of a condition which is usually self managed….normally a patient would ‘learn their own body’ and daily adjust their medication and behaviour accordingly but mum cannot do that.

I fully expect to come back to you for advice as to how to seek good counsel but I’m worried they will be rude and dismissive of me in the meeting - my brother will attend for moral support but he has no idea of the systems! 🙈🙈

 

[Dave63]

They wanted to proceed and then have a separate meeting without us when they looked at the evidence - sounds all a bit suspect to me!

Pretty much standard practice after an MDT. The assessor and usually the social worker will have a private chin-wag to discuss the evidence and determine eligibilty. I thought it kind of made a mockery of the whole process supposedly being transparent and open.

Anyway they then said maybe best to reconvene……she hasn’t had any daily records

Makes you wonder if they're aware of this prior to the meeting or whether they approach each MDT blind and just wing it.

she hasn’t had any daily records …so has requested 2 weeks - I challenged her as to that time frame …and she held firm that was enough….isn’t it 3 months in NSF?

Enough for what? I wouldn't have thought 2 weeks would be sufficient to form a full and comprehensive picture of a persons true needs. This was one of the things which really annoyed me during our meetings, they depend on such a small time frame that it drastically impacts on showing how complex and intense a persons needs can be. There's no time frame within the national Framework for evidence gathering which is surprising considering how important this aspect of reviewing a persons needs is. Every ICB can apply different time periods for review, but I'm sure they wouldn't use this to make the process more advantageous for them financially!!

my brother who attended to give me moral support and works in the private sector was appalled at how it was like being back at school

So true, ours was definitely like that. Although the LRM was much better, but I think that was because we had a legal advocate with us that time.

 

[sdmhred]

Thanks @Dave63

my impression all along has been that they ‘wing it’ with the aim the person is not getting funding. The first MDT scheduled was suddenly cancelled after I had submitted a detailed family form outlining the issues. That led to the request for documentation but although sent by the care home not processed.

I had picked up on this ‘private meeting’ before - I wonder if the legality of not having POA or representative there has ever been challenged? maybe I shall be very cheeky about that …

Anyway I now intend to put together more of an evidence pack - I have helpful emails from endocrinology which I can forward providing evidence for them.


The 2 weeks is ridiculous- I have kept a diary for a month which shows how a medical intervention for her physical health in week A leads to an impact on other domains week B which then leads to a further issue week C etc……Even the GP doesn’t pick up on it until I tell him 🫢 which is part of my issue - I have to keep eyes on what is happening as they are stumbling around with it ….it’s not their fault as her issues are rare ….but it means my time and energies are limited…

I think if I get some time I will now look at getting some representation and advice….but therein lies more jobs and research ….how do you know which are the good places? And I do find it rather annoying we can’t give recommendations here 😬😬😬

 

[Dave63]

Thanks @Dave63

my impression all along has been that they ‘wing it’ with the aim the person is not getting funding. The first MDT scheduled was suddenly cancelled after I had submitted a detailed family form outlining the issues. That led to the request for documentation but although sent by the care home not processed.

I had picked up on this ‘private meeting’ before - I wonder if the legality of not having POA or representative there has ever been challenged? maybe I shall be very cheeky about that …

Anyway I now intend to put together more of an evidence pack - I have helpful emails from endocrinology which I can forward providing evidence for them.


The 2 weeks is ridiculous- I have kept a diary for a month which shows how a medical intervention for her physical health in week A leads to an impact on other domains week B which then leads to a further issue week C etc……Even the GP doesn’t pick up on it until I tell him 🫢 which is part of my issue - I have to keep eyes on what is happening as they are stumbling around with it ….it’s not their fault as her issues are rare ….but it means my time and energies are limited…

I think if I get some time I will now look at getting some representation and advice….but therein lies more jobs and research ….how do you know which are the good places? And I do find it rather annoying we can’t give recommendations here 😬😬😬

Advocacy is not cheap so it's a bit of a risk/reward decision. If you get funding then the savings in care home fees can pay for the advocacy within two months or so. However, if you don't get funding it can be £6 - £10k you won't get back. You can't claim legal fees as part of any reimbursement as the Parliamentary Ombudsman in their infinite wisdom have said that legal assitance is not neccessary as the NHS has it's own robust appeals system.

The firm who handled mums appeal were very transparent about costs (which were fixed for each stage) and after reviewing mums records judged her chances of successful appeal as marginal. She did win her appeal but if she hadn't then we took the view that we'd tried everything possible.

Some on the forum have used a number of firms with success, we used the company who run the Care to be Different site.

 

[luggy]

Well ….the meeting was short if not sweet! Neither assessor had received or looked through any information on mum. They wanted to proceed and then have a separate meeting without us when they looked at the evidence - sounds all a bit suspect to me! Anyway they then said maybe best to reconvene……she hasn’t had any daily records …so has requested 2 weeks - I challenged her as to that time frame …and she held firm that was enough….isn’t it 3 months in NSF?
my brother who attended to give me moral support and works in the private sector was appalled at how it was like being back at school 🤣🤣🤣

Hi @sdmhred - what a nuisance! This reconvening malarkey seems to be a bit of a thing recently. I'm still waiting on the result of our reconvened MDT - I've been through a few MDT's now, which have all previously sailed through in a day or two. My position is slightly different to yours in that my mum is currently funded, so I'm in no rush to be told the result.

Three months worth of clinical records is generally considered to be best practice, but is not written into the NF. I challenged the assessor who only regarded 1 month for my mum. As the MDT was halted half way through to 'reconvene' at a later date, I took the opportunity to send an email to the ICB asking for consideration to be given for 3 months records to be taken into account. (The reason I wanted 3 months is because I'd managed to obtain a load of behaviour charts which fell 2 weeks outside the 1 month cut off). I didn't get a reply, but when we reconvened the assessor announced that she was now considering 3 months.

Anyway, at least you have a bit more time to do some research and re-group.

 

[luggy]

Advocacy is not cheap so it's a bit of a risk/reward decision. If you get funding then the savings in care home fees can pay for the advocacy within two months or so. However, if you don't get funding it can be £6 - £10k you won't get back. You can't claim legal fees as part of any reimbursement as the Parliamentary Ombudsman in their infinite wisdom have said that legal assitance is not neccessary as the NHS has it's own robust appeals system.

The firm who handled mums appeal were very transparent about costs (which were fixed for each stage) and after reviewing mums records judged her chances of successful appeal as marginal. She did win her appeal but if she hadn't then we took the view that we'd tried everything possible.

Some on the forum have used a number of firms with success, we used the company who run the Care to be Different site.

@Dave63 you & I used the same firm and our fees were also fixed for each stage. However, I now have a retrospective period to contend and this is charged differently on a No Win, No Fee basis which caused me to almost fall off my chair in shock. I'm currently still considering my options........

 

[Dave63]

@Dave63 you & I used the same firm and our fees were also fixed for each stage. However, I now have a retrospective period to contend and this is charged differently on a No Win, No Fee basis which caused me to almost fall off my chair in shock. I'm currently still considering my options........

I suppose the upside is they probably only take the cases they feel confident in winning. The downside would probably be what percentage of the reimbursement they take in lieu of fees? Unless it's a fixed fee but only if they win?

It's a real double edged sword. I fully acknowledge that we wouldn't have been successful at appeal without the advocacy service but it infuriates me that the CHC process is so criminally gatekeeped that advocacy is required in the first place.

 

[sdmhred]

Thank you both.

Ive been told the reconvened meeting will be face to face rather than on Teams?? What sort of tactic is that on their behalf 🤷‍♀️🤷‍♀️

Where do you get the info that 3 months is best practice @luggy? I may quote that…

I think I should probably now speak to one of the organisations to get a realistic opinion about mum’s chances before investing energies or monies into it.

I spoke to another relative whose wife is funded - they had threatened to withdraw funding as apparently she is getting ‘better from her dementia‘ - he fumed at them and Requested scientific evidence that dementia is reversible!

don’t get me started on the injustice of it all 😡😡

 

[luggy]

Thank you both.

Ive been told the reconvened meeting will be face to face rather than on Teams?? What sort of tactic is that on their behalf 🤷‍♀️🤷‍♀️

Where do you get the info that 3 months is best practice @luggy? I may quote that…

I think I should probably now speak to one of the organisations to get a realistic opinion about mum’s chances before investing energies or monies into it.

I spoke to another relative whose wife is funded - they had threatened to withdraw funding as apparently she is getting ‘better from her dementia‘ - he fumed at them and Requested scientific evidence that dementia is reversible!

don’t get me started on the injustice of it all 😡😡

Hi @sdmhred it may be that you'll find a face to face meeting preferable and they are usually held at the care home. I think most of the MDT meetings were face to face prior to Covid.

Posting links are beyond my technological capability, but if you google the Care to be Different website and search under 'Clinical Records', you should find the information regarding 3 months. As I understand it, 3 months used to be standard but during Covid the ICB's had a backlog of assessments so they reduced it to 1 month to save time, and many ICB's have continued with this practice.

Funding is often withdrawn. Care needs do change over time and whilst we all know that dementia cannot get better, some of the symptoms can diminish, whilst other symptoms can get worse or new symptoms can develop. Being awarded CHC is not indefinite. There will be further reviews at 3 months and thereafter, usually, 12 months.

If I was in your position (and I have been more than once), I would do my best at the MDT and, if CHC is declined, consider contacting one of the advocate services which offer a free initial telephone consultation.

 

[nitram]

@sdmhred

Posting links are beyond my technological capability

Is

You searched for clinical records - Care to be Different

caretobedifferent.co.uk

the correct link?

Page contains box for a different search term.

 

[Dave63]

@sdmhred

Is

You searched for clinical records - Care to be Different

caretobedifferent.co.uk

the correct link?

Page contains box for a different search term.

That's the one.
First article in the search results:

MDT assessment - How much clinical evidence is needed?

When an MDT assessment is undertaken for NHS Continuing Healthcare Funding (CHC), the CCG will look at clinical records from the care home...

caretobedifferent.co.uk

 

[sdmhred]

Ive Done a bit of calling around in the past few days:

1) company 1 said no time to use them for the MDT and to check back if appeal needed.

2) company 2 said mum had a good case and could take it on but obviously a very high fee

3) company 3 didnt answer their phone or have space on their voicemail.

so it seems wise to do as @luggy suggests …but I may pay a little for some coaching from one of the companies to get my head round it all a bit more????

Im very confident about talking about mum’s needs and evidencing them where I can. I requested mum’s care plan and have sent it back with some ammendments where her physical health needs were not spelled out as clearly as they could be. I have emails from specialists I can use. I’ve yet to see any of her daily notes from the carers - but it’s the nursing stuff that I think is more helpful.

Im not feeling at all confident about remaining calm and professional if treated in a harsh or patronising manner at the meeting. What I would love is to have someone with some weight there just to sit and communIcate by their presence that the assessors need to do a proper job and give mum a fair go.

im also wondering about emailing the ICB and querying only 2 weeks care notes??

 

[luggy]

Ive Done a bit of calling around in the past few days:

1) company 1 said no time to use them for the MDT and to check back if appeal needed.

2) company 2 said mum had a good case and could take it on but obviously a very high fee

3) company 3 didnt answer their phone or have space on their voicemail.

so it seems wise to do as @luggy suggests …but I may pay a little for some coaching from one of the companies to get my head round it all a bit more????

Im very confident about talking about mum’s needs and evidencing them where I can. I requested mum’s care plan and have sent it back with some ammendments where her physical health needs were not spelled out as clearly as they could be. I have emails from specialists I can use. I’ve yet to see any of her daily notes from the carers - but it’s the nursing stuff that I think is more helpful.

Im not feeling at all confident about remaining calm and professional if treated in a harsh or patronising manner at the meeting. What I would love is to have someone with some weight there just to sit and communIcate by their presence that the assessors need to do a proper job and give mum a fair go.

im also wondering about emailing the ICB and querying only 2 weeks care notes??

Hi @sdmhred I asked for legal representation at mum's latest MDT, but there wasn't sufficient time for them to gather the evidence to form a good case, which is understandable as we don't usually get much notice for an MDT. Plus, if it's a face to face meeting there's travelling time and mileage expenses to be factored into the cost.

The documentary evidence that the assessor's are mostly interested in are:-

Care Plan (which I think you have)
Risk Assessments - for example including, but not limited to, Moving & Handling, Falls etc
Behaviour Charts (if applicable)
Observation Charts
Food and Fluid Intake Charts (if applicable)
Weight Charts
Medication Charts
Daily Records
GP Records

(I've probably missed some glaringly obvious ones, but that should give you a general idea)

I emailed my ICB with a polite request to consider clinical records for a longer period and it seemed to work.

Do your best in making your points and ensure that the assessor makes a written note of your observations. Whether they take any notice is another matter, but at least your points will have been recorded if needed at a later date. Have confidence - you will know your mum better than anyone else at the meeting.

 

[sdmhred]

Thanks @luggy

I forgot to report back with so much else going on. The home have had a d and v outbreak which impacts mum’s rare condition- more evidence for me!

Anyway I paid for some coaching which was really helpful. I feel confident that mum has a good shout at CHC - but don’t expect a result without appeal.

I have gone through all domains and noted how they interact- which in mum’s case is quite a lot.

The advisor I spoke to suggested they might be reluctant to take down and note my points - I’m not quite sure how I insist on that - it sounds like there won’t be a minute taker??

As it’s hybrid can I ask for the Teams meeting to be recorded?

In any case I think I shall send through my notes after the meeting to make sure they have them.

Im trying not to feel too stressed by assuming we will appeal ( the home told me they had a CHC last week - one of the most aggressive residents on 121 was classed as low behaviour as the home hadn’t needed the police 🙈🙈🤷‍♀️🤷‍♀️ - uhhhh ….121 working then!) …in a weird way takes the pressure off me as u are set up to fail so don’t be disappointed…..if that makes sense!

My biggest concern is that they will patronise me and as I’m on the edge anyway with mum’s health I will either cry or get angry 🙈🙈🙈 ironically I work for the LA in adult social care so the SW will be an indirect colleague which I will make sure they know!

 

[Dave63]

The advisor I spoke to suggested they might be reluctant to take down and note my points - I’m not quite sure how I insist on that - it sounds like there won’t be a minute taker??

There won't be a note taker at a MDT, although they are present at appeals. However, paragraph 25 of the DST guidance, which the assessor should be following, states:

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.

As it’s hybrid can I ask for the Teams meeting to be recorded?

This is something I briefly looked into prior to mums MDT. As far as I could ascertain you can record the meeting and you don't need permission to do so. There was a thread a few years ago about this but it doesn't give much info.

Recording CHC/MDT assessment meetings

The NHS state recording healthcare meetings is a form of personal note-taking. Although professionals have to ask for permission to record us, we do not have to seek their permission - simply inform the MDT you are going to do so. NHS staff know this. If the Social Worker objects and request a...

forum.alzheimers.org.uk

Im trying not to feel too stressed by assuming we will appeal ( the home told me they had a CHC last week - one of the most aggressive residents on 121 was classed as low behaviour as the home hadn’t needed the police

This is classic 'well managed needs' which the DST guidance notes and National Framework expressly warn assessors not to do.

NHS continuing healthcare decision support tool guidance

www.gov.uk

 

[luggy]

Thanks @luggy

I forgot to report back with so much else going on. The home have had a d and v outbreak which impacts mum’s rare condition- more evidence for me!

Anyway I paid for some coaching which was really helpful. I feel confident that mum has a good shout at CHC - but don’t expect a result without appeal.

I have gone through all domains and noted how they interact- which in mum’s case is quite a lot.

The advisor I spoke to suggested they might be reluctant to take down and note my points - I’m not quite sure how I insist on that - it sounds like there won’t be a minute taker??

As it’s hybrid can I ask for the Teams meeting to be recorded?

In any case I think I shall send through my notes after the meeting to make sure they have them.

Im trying not to feel too stressed by assuming we will appeal ( the home told me they had a CHC last week - one of the most aggressive residents on 121 was classed as low behaviour as the home hadn’t needed the police 🙈🙈🤷‍♀️🤷‍♀️ - uhhhh ….121 working then!) …in a weird way takes the pressure off me as u are set up to fail so don’t be disappointed…..if that makes sense!

My biggest concern is that they will patronise me and as I’m on the edge anyway with mum’s health I will either cry or get angry 🙈🙈🙈 ironically I work for the LA in adult social care so the SW will be an indirect colleague which I will make sure they know!

Hi @sdmhred your questions have been answered by @Dave63

At one of the better MDT's I attended, the assessor read out her notes at the end of each domain and asked everyone present if we considered that it was a true and accurate representation of what had been discussed. If you feel inclined, you could ask your assessor to do the same and, if appropriate, use it as an opportunity to disagree, give your explanation and ask her to make a note. @Dave63 is quite correct, there won't be a note taker at the MDT, but don't be shy about asking for your views to be noted on the DST - the assessors I've encountered have always been willing to do this - they should be noting down your views anyway.

Good luck.

 

[sdmhred]

Well I’m glad it’s out of The way.

thankfully everyone was polite although I could tell the care home deputy manager was irritated at points.

v clearly all including the care home were going for FNC.

She was given 1 severe, 3 high, 5 moderate, 1 low and 1 no need.

The lingo appeared to be about whether the home were doing what a ‘nursing home were expected to be doing‘ as to whether she has a complex primary health care need - new lingo on me.

I also noticed in the medication domain the home kept talking about it being GP led rather than the nursing staff assessing and making decisions - which they clearly have been doing …..but I think the management are on to that and trying to prevent that From happening and being documented ….as that would tip her over into CHC I guess. I was tired by this point to be articulate but made my point in disagreement saying it should be severe….

I also picked up the care home are irritated by the complexity of her medication regime but kept saying it wasn’t for that meeting 🤷‍♀️🤷‍♀️🤷‍♀️..and the deputy manager who was at the meeting clearly doesn’t understand it and told me I was a bit obsessed with it 🤣🤣😢

 

[sdmhred]

Oh and I did enjoy that being grabbed by the breast and scratched with dirty nails is apparently ‘normal working conditions and is not a risk’ 🤣🤣🤣 I knew that would be the response so enjoyed it …..apparently it woiod be v different if it happens to me tomorrow by someone with schizophrenia as opposed to someone with dementia …
…no wonder we have such a shortage of carers!