CHC (Continuing Healthcare) support thread
- Thread starter stanleypj
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This is very similar to my Mum who scoring was similar - I have a thread called 'needing help with CHC checklist'. We had the 2nd assessment yesterday and Mum was refused funding too, no surprise there I did expect it. We are awaiting the formal confirmation of the DST and their decision, and intend to go forward with the appeal, which I hope you will do too. Also the assessors comment yesterday said that we had a strong case, made stronger by the fact that the social worker did not attend (?) and at the appeal stage they are not so punitive, and verbal evidence is acceptable at the appeal. I think it is the norm on 'borderline cases to have to appeal, hope this is of help.
Hi @Katie_Fr We are also in a similar position. DST showed Severe in Cognition, High in Comms, Meds and Behaviour and a mix of Moderate\Lows. I believe there were several failing in the whole process and once we receive the DST I will definitely be appealing! This is my thread which I will try and update. Good Luck! Gx
https://forum.alzheimers.org.uk/threads/chc-wales-opening-up-a-can-of-worms.112425/
Thankyou Katie. I will note this down. We have to be very organised as carers and to see what I mean suggest you read my new thread about dad's cataract appointment!
MaNaAk
Hi @padmag , hi @Georgina63 !
Thanks for sharing your experience! Our whole route to the CHC application was long. First, my FIL was placed into respite care for 2 weeks at our own cost, because my MIL couldn't cope anymore. At this time we had the first contact with the social services (LA).
She offered my MIL to arrange the brokerage for the care agency, so someone would come and help him with getting dressed/undressed, coming downstairs with the chair lift (installed at her own funds). No mention about how much it would cost us. NO MENTION ABOUT CHC AT ALL. She also sent my FIL file for the means test, and he is above the threshold because he owns tiny commercial premises together with my MIL, which is difficult to sell, taking into account that we'll be selling only 50% of the premises. After this means test LA sent us a bill (even that we didn't sign any contract with them) and backdated the payments (at an enormous rate, which is twice if we had arranged it ourselves). I believe LA profiteers from all that Absolutely useless, not assisting, not helpful.
At the same time, my MIL went to see her GP. She felt that she wanted to suicide, as she couldn't do anything, and couldn't cope anymore. GP said that he will contact the Intermediate Care team to assist us. They even didn't bother to contact us.
As soon as my FIL's dementia progressed even more, and my MIL couldn't really cope anymore, he became violent as well, and it wasn't safe to keep him at home, we were to place him into the care home (self-funding). We talked to the care home about financing etc, again no one ever mentioned about CHC funding, although we are in a big brand care home.
Then I found our about CHC myself through the various searches, it was so confusing, we even thought that CHC was equal to LA funding, and thought it is not applicable to us.
We first sent the request for CHC funding 13th of November 2018, apparently they said they didn't receive our letter, and we were to send one more request on the 28th of November 2018.
First CHC assessment was scheduled on the 6th of December, the result of which was the second assessment. The second assessment was done on the 16th of January, we received the rejection on the 6th of February. We have written an appeal... who knows how long it will take.
It is also so emotionally drained, to discuss the bad state of your relative, who really needs help, to beg them for the help is so humiliating and depressing. If my MIL could keep my FIL at home, I am sure she would, it just became impossible...
During the second assessment, no one told us that our case is a borderline case, even more, the MDT assessor told that he doesn't find our case complex, what he also described in DST. He wrote that neither Nature nor Intensity, nor Complexity, nor Unpredictability satisfies the requirements of the primary health needs. We think differently... I will keep everyone updated on our developments. We send our appeal today.
Thanks for sharing your experience! Our whole route to the CHC application was long. First, my FIL was placed into respite care for 2 weeks at our own cost, because my MIL couldn't cope anymore. At this time we had the first contact with the social services (LA).
She offered my MIL to arrange the brokerage for the care agency, so someone would come and help him with getting dressed/undressed, coming downstairs with the chair lift (installed at her own funds). No mention about how much it would cost us. NO MENTION ABOUT CHC AT ALL. She also sent my FIL file for the means test, and he is above the threshold because he owns tiny commercial premises together with my MIL, which is difficult to sell, taking into account that we'll be selling only 50% of the premises. After this means test LA sent us a bill (even that we didn't sign any contract with them) and backdated the payments (at an enormous rate, which is twice if we had arranged it ourselves). I believe LA profiteers from all that Absolutely useless, not assisting, not helpful.
At the same time, my MIL went to see her GP. She felt that she wanted to suicide, as she couldn't do anything, and couldn't cope anymore. GP said that he will contact the Intermediate Care team to assist us. They even didn't bother to contact us.
As soon as my FIL's dementia progressed even more, and my MIL couldn't really cope anymore, he became violent as well, and it wasn't safe to keep him at home, we were to place him into the care home (self-funding). We talked to the care home about financing etc, again no one ever mentioned about CHC funding, although we are in a big brand care home.
Then I found our about CHC myself through the various searches, it was so confusing, we even thought that CHC was equal to LA funding, and thought it is not applicable to us.
We first sent the request for CHC funding 13th of November 2018, apparently they said they didn't receive our letter, and we were to send one more request on the 28th of November 2018.
First CHC assessment was scheduled on the 6th of December, the result of which was the second assessment. The second assessment was done on the 16th of January, we received the rejection on the 6th of February. We have written an appeal... who knows how long it will take.
It is also so emotionally drained, to discuss the bad state of your relative, who really needs help, to beg them for the help is so humiliating and depressing. If my MIL could keep my FIL at home, I am sure she would, it just became impossible...
During the second assessment, no one told us that our case is a borderline case, even more, the MDT assessor told that he doesn't find our case complex, what he also described in DST. He wrote that neither Nature nor Intensity, nor Complexity, nor Unpredictability satisfies the requirements of the primary health needs. We think differently... I will keep everyone updated on our developments. We send our appeal today.
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Hello Katie_Fr
You have been around the houses, what a farce! Good luck with the appeal. I am in the process of getting a free assessment from Solicitors, it won't hurt to see what they think as everyone I am dealing with right now seems to be blocking me (including the CH manager)and the assessor isn't neutral (should be) so I cannot trust their judgement.
Regarding sale of property - I would think if your MIL is living in their matrimonial home then it will be disregarded, not sure about the commercial property. Perhaps someone else will come along and give you some advice on that. Best Wishes
You have been around the houses, what a farce! Good luck with the appeal. I am in the process of getting a free assessment from Solicitors, it won't hurt to see what they think as everyone I am dealing with right now seems to be blocking me (including the CH manager)and the assessor isn't neutral (should be) so I cannot trust their judgement.
Regarding sale of property - I would think if your MIL is living in their matrimonial home then it will be disregarded, not sure about the commercial property. Perhaps someone else will come along and give you some advice on that. Best Wishes
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Good luck with your appeal. So sorry to hear of your experiences. It certainly is dreadful how poor the process seems to be for so many people. I initially requested a CHC checklist back in July of last year, and it was a comedy of errors (not laughing!) until finally done in December. Prior to that, I had also been led to believe that CHC wouldn't be relevant for Dad. I recall his Psychiatric Nurse saying something along the lines of an admission to hospital possibly qualifying him (at one stage we thought he might be sectioned), but otherwise it wasn't worth going for. I would say my experience has been off-putting to say the least. From the start, I have been told multiple times, that if Dad is assessed it might show he has nursing needs and mean that he has to move homes....and this from health professionals who have never even met him, let alone visited the CH that he is in. It is truly shocking, and I hope there are enough of us out there to put up a good fight against such a flawed system. All the very best for your appeal. Gx
Hi everyone,
I have a couple of questions regarding CHC.
Firstly, when the DST is completed, is there a specific time period that is looked at? When we recently completed for my Dad, it was just over 3 months looking back from the date of the DST itself. Is that usual?
Secondly, in a situation where CHC was granted and the LHB (funding body) suggested the person with PWD move to another home, what powers do the LHB have, i.e. could they insist against the wishes of the PWD or their representative? I understand you could challenge such a decision, but wondered what the implications might be.
Thanks. Gx
I have a couple of questions regarding CHC.
Firstly, when the DST is completed, is there a specific time period that is looked at? When we recently completed for my Dad, it was just over 3 months looking back from the date of the DST itself. Is that usual?
Secondly, in a situation where CHC was granted and the LHB (funding body) suggested the person with PWD move to another home, what powers do the LHB have, i.e. could they insist against the wishes of the PWD or their representative? I understand you could challenge such a decision, but wondered what the implications might be.
Thanks. Gx
Hi Georgina, in the case of my dad, I was advised by the Social Worker to allow dad 4-6 weeks to settle into his new care home before she would do her initial CHC assessment, this was also so the Care home staff could gather evidence and get to know dad. But when she did the assessment and when the CHC team did theirs, they both asked for details on dad’s background and the progression of his Dementia going back a couple of years and the reasoning for going into care, as well as the evidence gathered in that care home and the previous care home, this was detailed in the DST report.
Regarding your second question, I would look at why they are suggesting the PWD be moved. Is it due to the Care home cost in which case you can appeal this and it is possible that full funding can be agreed, (this happened in my dad’s case) If it’s because they feel the PWD is in the wrong type of care home for their needs I’m not sure. It may depend how settled the PWD is in that care home and if the care home can actually meet their needs. If you challenged their decisions I’m not sure what the implications would be, maybe others with experience of this may know.
Thanks @Elle3, that was spooky timing as I just reposted the questions as a separate thread...so thanks for you your reply. Re question 1, your experience makes sense. I thought the 3 month 'cut off' in our case seemed very arbitrary and in any event, missed vital information within that period anyway!
The second question is hypothetical at this stage as we've not yet received the completed DST, which will confirm non-eligibility, but following a conversation I had with someone the other day, I wanted to put my mind at rest, as the implication was that the PWD could be moved without the agreement of family, which seemed odd to me.
Thanks again. Gx
Hi @Georgina63 !
When we had our DST assessment in January, they looked at the period of 3 months as well... although when we placed my FIL to the care home in October, the reason for placing him was because it wasn’t safe to keep him at home any more.
When we had our DST assessment in January, they looked at the period of 3 months as well... although when we placed my FIL to the care home in October, the reason for placing him was because it wasn’t safe to keep him at home any more.
Thanks @Katie_Fr, I wonder if 3 months is the standard. Still awaiting the DST report at which point I will appeal. Good luck with yours. Gx
I don’t know @Georgina63 , who knows about their standards at all.
I have an update on my side. Today we received a letter from NHS, offering to transfer the appeal process to a third party provider (___ ltd.), promising a more streamlined experience...
I don’t know how to take it. It’s written also if they don’t hear anything from us within a week, they will automatically transfer our file to a limited company.
It is also written that the period of appeal review is three months from allocation the case to them.
Did anyone have an experience of allocation the case to the third party?
I have an update on my side. Today we received a letter from NHS, offering to transfer the appeal process to a third party provider (___ ltd.), promising a more streamlined experience...
I don’t know how to take it. It’s written also if they don’t hear anything from us within a week, they will automatically transfer our file to a limited company.
It is also written that the period of appeal review is three months from allocation the case to them.
Did anyone have an experience of allocation the case to the third party?
All it says in the Framework is that ALL relevant evidence must be reviewed, including the ‘totality of relevant needs’, ‘all relevant health and social care records’, ‘relevant and up-to-date information’, ‘all the relevant information’, and ‘relevant evidence’ from ‘all relevant people’. The 3-month thing is unfounded if there is other relevant information they should be aware of.
However, as there is no actual specific time frame written in the Framework then it leaves it up to the assessor and how much 'relevant' information they are willing to regard and document. All you can do as a 'relevant person' is provide as much relevant detailed evidence as possible regardless of time frame and hope they include it.
I found this information online regarding the types of evidence that can be considered.
Evidence for Continuing Healthcare assessments
Risk assessments could include things like:
- Waterlow Risk Assessment Tool (to assess risk of skin breakdown/pressure sores) – or the Braden Scale
- MUST Tool (Malnutrition Universal Screening Tool)
- Moving & Handling & Falls Risk Assessment or a FRASE (Falls Risk Assessment Score for the Elderly)
- the Barthel Index – to assess degree of dependency/daily functioning
- oxygen saturation/absorption notes (SATS)
- pain charts
- weight charts
- medication charts
- SALT assessments (Speech & Language Therapy)
- wound/pressure sore assessment charts
- behavioural assessments
- specialist nursing/medical assessments (such as tissue viability, breathing, dementia, psychiatric assessments, etc.)
- assessments from therapists
- daily care notes
- care plans
- GP input
- hospital notes
- community care notes
- social care reports
- health needs reports
- mental health reports
Sorry @Katie_Fr, I don't have any experience of that. It would be good to hear from anyone that may have had experience. It's difficult to make a decision on the unknown! The 3 month period fits with what I have read in the Alzheimer's Society factsheet 'When does the NHS pay for care?' which is very useful regarding the appeals process.
https://www.alzheimers.org.uk/sites.../downloads/when_does_the_nhs_pay_for_care.pdf
Gx
Thanks for that @Elle3, all useful info.
I still haven't received the completed DST report, despite chasing multiple times. Watch this space......Gx
I am too awaiting the official DST result and was told by the assessor it will be fairly quick should be within 4 weeks - (we were told not eligible).
In the meantime we are still paying Mum's NH fees - my question is this, as we will be appealing should we be paying the NH fees as Mum's care is still the responsibility of NHS until we have gone through the appeal process?
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.
Thanks Louise7 it's just something I read on a legal website, although it may be old and the rules changed now.
@Elle3 , @Georgina63 , thanks for your responses!
I managed to get the recommendation on my question with the CHC consultant, and it actually happens very often now, that CCGs outsource the appeal to a third party. You should still verify with CCG that the third party will inform you and include you in the case review, as well as the responsibility for the eligibility decision lies with CCG.
I managed to get the recommendation on my question with the CHC consultant, and it actually happens very often now, that CCGs outsource the appeal to a third party. You should still verify with CCG that the third party will inform you and include you in the case review, as well as the responsibility for the eligibility decision lies with CCG.
