Your CHC Appeals support thread

Ruth32

Registered User
Oct 29, 2021
58
0
Thanks Ruth, we have received your email we will be in touch soon.
Thank you. I am afraid no one has been in contact as of yet. I understand you must be extremely busy, I was just hoping for some advice before I send off the appeal letter. Many thanks. Ruth
 

luggy

Registered User
Jan 25, 2023
199
0
Hi. I'm not sure if this is the right place to post my latest dilemma, but as I've just started my appeal journey and it's an ICB issue, this thread seems to be the most appropriate at the moment.

I'm truly at my wit's end with the dark and magical web of intrigue which my ICB and mum's care home seem to be constantly weaving. I'll try and be succinct.

Mum has been in her nursing home since being discharged from hospital in April '21. She's had a couple of CHC Assessments and has been found to be ineligible for CHC on both occasions, but was awarded Funded Nursing Care. The last CHC Assessment was on 12.01.23 and FNC was agreed. However, 3 weeks later on 31.01.23, the Nurse Assessor who had co-ordinated the MDT contacted me to say that she had been asked to review mum's FNC the following day and that I was welcome to attend. When I asked her why mum's FNC was being reviewed just 3 weeks after she had been found to be eligible, she was unable to give a reason. I did attend the review the next day, and, having looked at all of the domains again, the assessor announced that mum did not have 24 hour nursing needs. Still, no reason was given for this latest review, despite my asking (the assessor just said that she had been asked to do it).

It wasn't until a couple of weeks later, when the nursing home informed me that they were de-registering as a 'nursing home', that I understood why the review had taken place. The 'care home' (as it is now), have informed me that because mum has been risk assessed as not having 24 hour nursing needs, she can stay where she is. (The MDT scored mum with 1 severe, 6 highs, 3 moderates and 2 no needs on the DST a couple of months ago).

Today, during a conversation with a representative from the legal company I have appointed to help me with my appeal for CHC, I was advised that mum does indeed have quite complex nursing needs, and that I should consider moving her into a nursing home. However, as I understand it, the 'setting' should not be relevant for CHC and I don't think that the advice was given with a view to strengthening my case for appeal, but more of a concern for mum's needs.

Following this conversation, I contacted my ICB and asked that if I were to move mum into a nursing home, would the FNC, which was awarded on 12.01.23, be restored? The reply was that mum would have to have her nursing needs reassessed - that will make it the 3rd time in 3 months and, it seems, with no guarantee that FNC would be awarded. Clearly, this has nothing to do with mum's nursing needs, and everything to do with the ICB saving loads of money. The ICB are pulling all of the strings (as they do) at the moment and I feel utterly helpless.

I'm sorry for rambling on, but I just needed to put this latest set of circumstances 'out there'. There seems to be a never ending and far reaching stretch of obstacles placed in my way by the ICB.

Any thoughts, comments, ideas would be much appreciated. Thanks.
 

Dave63

Registered User
Apr 13, 2022
397
0
Hi. I'm not sure if this is the right place to post my latest dilemma, but as I've just started my appeal journey and it's an ICB issue, this thread seems to be the most appropriate at the moment.

I'm truly at my wit's end with the dark and magical web of intrigue which my ICB and mum's care home seem to be constantly weaving. I'll try and be succinct.

Mum has been in her nursing home since being discharged from hospital in April '21. She's had a couple of CHC Assessments and has been found to be ineligible for CHC on both occasions, but was awarded Funded Nursing Care. The last CHC Assessment was on 12.01.23 and FNC was agreed. However, 3 weeks later on 31.01.23, the Nurse Assessor who had co-ordinated the MDT contacted me to say that she had been asked to review mum's FNC the following day and that I was welcome to attend. When I asked her why mum's FNC was being reviewed just 3 weeks after she had been found to be eligible, she was unable to give a reason. I did attend the review the next day, and, having looked at all of the domains again, the assessor announced that mum did not have 24 hour nursing needs. Still, no reason was given for this latest review, despite my asking (the assessor just said that she had been asked to do it).

It wasn't until a couple of weeks later, when the nursing home informed me that they were de-registering as a 'nursing home', that I understood why the review had taken place. The 'care home' (as it is now), have informed me that because mum has been risk assessed as not having 24 hour nursing needs, she can stay where she is. (The MDT scored mum with 1 severe, 6 highs, 3 moderates and 2 no needs on the DST a couple of months ago).

Today, during a conversation with a representative from the legal company I have appointed to help me with my appeal for CHC, I was advised that mum does indeed have quite complex nursing needs, and that I should consider moving her into a nursing home. However, as I understand it, the 'setting' should not be relevant for CHC and I don't think that the advice was given with a view to strengthening my case for appeal, but more of a concern for mum's needs.

Following this conversation, I contacted my ICB and asked that if I were to move mum into a nursing home, would the FNC, which was awarded on 12.01.23, be restored? The reply was that mum would have to have her nursing needs reassessed - that will make it the 3rd time in 3 months and, it seems, with no guarantee that FNC would be awarded. Clearly, this has nothing to do with mum's nursing needs, and everything to do with the ICB saving loads of money. The ICB are pulling all of the strings (as they do) at the moment and I feel utterly helpless.

I'm sorry for rambling on, but I just needed to put this latest set of circumstances 'out there'. There seems to be a never ending and far reaching stretch of obstacles placed in my way by the ICB.

Any thoughts, comments, ideas would be much appreciated. Thanks.

Hi @luggy

CHC funding can be awarded irrespective of setting, so it doesn't matter if you're in residential or nursing or even your own home. FNC however can only be awarded to those in a home with nursing care. That's always struck me as odd as you would think that with the complexities required to be eligible for CHC it would be that funding which would require the nursing home setting. But what do I know!!

Your experience so far is quite similar to ours with multiple assessments and re-assessments in a short period of time and with no transparency or explanation for why things were done the way they were. It gets incredibly debilitating trying to wade through the amount of 'fog' they produce. For that reason we engaged solicitors to handle mums appeal, however, even after getting solicitors involved the ICB is still dragging its feet on providing them with all the evidence they used to determine mums eligibilty. Mum was found eligible twice and on both occassions the recommendation was reversed after going to the review panel for approval. The review panel can not reverse a decision but they can refer the case back to the assessor and ask them to provide further evidence. In our case the review panel asked mums assessor to 'reflect' on the scoring of the most highly scored domains. These were 'reflected' on and then lowered without any input from the others involved in the MDT.

Sorry, that's more of a rant about our situation rather than any help for yours :)

It doesn't sound like your mums current home have been particuarly helpful either. Deregistering is a huge step I would have thought, especially for residents who rely on the nursing element of care. Why on earth have they not informed people earlier?
 

luggy

Registered User
Jan 25, 2023
199
0
Hi @luggy

CHC funding can be awarded irrespective of setting, so it doesn't matter if you're in residential or nursing or even your own home. FNC however can only be awarded to those in a home with nursing care. That's always struck me as odd as you would think that with the complexities required to be eligible for CHC it would be that funding which would require the nursing home setting. But what do I know!!

Your experience so far is quite similar to ours with multiple assessments and re-assessments in a short period of time and with no transparency or explanation for why things were done the way they were. It gets incredibly debilitating trying to wade through the amount of 'fog' they produce. For that reason we engaged solicitors to handle mums appeal, however, even after getting solicitors involved the ICB is still dragging its feet on providing them with all the evidence they used to determine mums eligibilty. Mum was found eligible twice and on both occassions the recommendation was reversed after going to the review panel for approval. The review panel can not reverse a decision but they can refer the case back to the assessor and ask them to provide further evidence. In our case the review panel asked mums assessor to 'reflect' on the scoring of the most highly scored domains. These were 'reflected' on and then lowered without any input from the others involved in the MDT.

Sorry, that's more of a rant about our situation rather than any help for yours :)

It doesn't sound like your mums current home have been particuarly helpful either. Deregistering is a huge step I would have thought, especially for residents who rely on the nursing element of care. Why on earth have they not informed people earlier?
Thanks for your reply Dave63. Don't worry about the rant. I don't mind rants. I do a lot of ranting these days. Sometimes, with this CHC malarkey, you can feel very isolated in your own little CHC bubble, with no hope of escaping. It helps to know that we're not alone - although I wouldn't wish this on anyone.

Yes, it does seem strange with regards to the setting for CHC and FNC. With FNC, the funding is to pay for the nurses employed by the home.

I've also engaged solicitors to deal with our appeal (quite possibly the same firm as yourself). I had been trying to gather and make sense of the required evidence myself, but without a medical background it was proving too difficult for me. It's early stages for us - we do have quite a strong case, but the very poor quality of the care home records could let us down. However, I have been moving quietly under the radar of the care home for the last year or more and have gathered a fair amount of evidence showing inconsistencies, inaccuracies and sometimes falsification of records. I've been keeping a Visits Diary and have videos showing mum in extreme states of distress - videos just show mum, no-one else. I write down the details of every conversation I have with anyone involved in mum's care, I have applied for and received hospital, GP, MHT, Social Services, Dietetics etc records and have an entire cupboard full of 'stuff' devoted to CHC. I've read 100's of pages of records and notes, filled an A4 size notebook with my own notes, and I've read the National Framework - twice! I don't know if any of this will help our case, but I feel I must do everything I can.

I had thought that, by engaging legal help and representation, much of the pressure would be taken off my shoulders. Indeed, for a couple of weeks I felt a great sense of relief - until the care home decided to pull the rug from under my feet.

I wish you, and everyone else going through this, the best of luck. We'll get there, eventually.
 

AS CHC Team

Registered User
Dec 15, 2022
20
0
Hi. I'm not sure if this is the right place to post my latest dilemma, but as I've just started my appeal journey and it's an ICB issue, this thread seems to be the most appropriate at the moment.

I'm truly at my wit's end with the dark and magical web of intrigue which my ICB and mum's care home seem to be constantly weaving. I'll try and be succinct.

Mum has been in her nursing home since being discharged from hospital in April '21. She's had a couple of CHC Assessments and has been found to be ineligible for CHC on both occasions, but was awarded Funded Nursing Care. The last CHC Assessment was on 12.01.23 and FNC was agreed. However, 3 weeks later on 31.01.23, the Nurse Assessor who had co-ordinated the MDT contacted me to say that she had been asked to review mum's FNC the following day and that I was welcome to attend. When I asked her why mum's FNC was being reviewed just 3 weeks after she had been found to be eligible, she was unable to give a reason. I did attend the review the next day, and, having looked at all of the domains again, the assessor announced that mum did not have 24 hour nursing needs. Still, no reason was given for this latest review, despite my asking (the assessor just said that she had been asked to do it).

It wasn't until a couple of weeks later, when the nursing home informed me that they were de-registering as a 'nursing home', that I understood why the review had taken place. The 'care home' (as it is now), have informed me that because mum has been risk assessed as not having 24 hour nursing needs, she can stay where she is. (The MDT scored mum with 1 severe, 6 highs, 3 moderates and 2 no needs on the DST a couple of months ago).

Today, during a conversation with a representative from the legal company I have appointed to help me with my appeal for CHC, I was advised that mum does indeed have quite complex nursing needs, and that I should consider moving her into a nursing home. However, as I understand it, the 'setting' should not be relevant for CHC and I don't think that the advice was given with a view to strengthening my case for appeal, but more of a concern for mum's needs.

Following this conversation, I contacted my ICB and asked that if I were to move mum into a nursing home, would the FNC, which was awarded on 12.01.23, be restored? The reply was that mum would have to have her nursing needs reassessed - that will make it the 3rd time in 3 months and, it seems, with no guarantee that FNC would be awarded. Clearly, this has nothing to do with mum's nursing needs, and everything to do with the ICB saving loads of money. The ICB are pulling all of the strings (as they do) at the moment and I feel utterly helpless.

I'm sorry for rambling on, but I just needed to put this latest set of circumstances 'out there'. There seems to be a never ending and far reaching stretch of obstacles placed in my way by the ICB.

Any thoughts, comments, ideas would be much appreciated. Thanks.
@luggy

Funded Nursing Care was first introduced in 2003, before then individual health authorities devised their own eligibility criteria for CHC. The idea of FNC was that because District / Community Nurses cannot go into nursing homes it was perverse that NH residents should have to pay for nursing services which they could receive for free if at home or in residential care homes, the terminology is now care homes, or, care homes with nursing. Initially it was paid in three bands depending on the severity of need, from 2007 the three rates were amalgamated into one band. It is paid directly to the care home with nursing. Read more on page 85 of the National framework, paras 270 onwards. These arrangements are governed by the Care Act 2014 and not by any local ICB policies. Residents in care homes who need nursing services receive their nursing care from their local District / Community Nursing Service.
TonyL
 
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sarahjen

New member
May 8, 2023
5
0
Hi - about to appeal regs my Mum's CHC decision (she had a major stroke and is in a nursing home - only able to move her left arm, double incontinence, no short term memory and so unable to make any decisions, severely disorientated (doesn't really know whats going on), sleeps most of time, doesn't interact with other residents, won't read, reduced eyesight etc etc - but can sometimes have a normal conversation.......

Just found this fantastic Forum.

I've read through the DST in detail and the NHS Framework and some of the Guidance Notes - and have a few initial questions:

1. Par 31 of the DST states that two severes = eligibility. Mum has been given a severe score for medication. For some crazy reason the nursing home said that her memory is ok and so I am obviously appealing on the basis that this should be severe (Mum's GP agrees). Is it possible to appeal on just one domain or will they redo the whole thing and try and bring down other scores to ensure that she still isn't eligible?

2. Def of 'immobility' ? Mum can't move her right side - her left leg has some movement but she can't sit up unsupported for more than a few seconds let alone stand or walk. I can't find anything to clarify how 'immobile' is defined regs the mobility domain. Mum can't move herself at all (even in bed) and she can't use a wheelchair as she doesn't have the cognitive ability to be able to use a mobility scooter. She can be hoisted into a wheelchair and then pushed. Is there any useful information on this and other key words used in the DST? as no point in appealing only to be told that I have got things wrong......

3. Communication. Mum can speak but due to her short term memory loss and her general confusion her answers can't be relied on e.g. she will tell us that she thinks that she has had lunch, been given medication and cleaned her teeth when we visit - when actually none of those things have happened. Could I therefore state that Mum scores high on this as she is unable to reliable communicate her needs? She can say if she is in pain (altho suffers from neurological pain and so may not be able to communicate what the pain is - and there may not be any pain...)

More questions to follow....massive thanks. Hope answers will help others through this ridiculous minefield.
 

sarahjen

New member
May 8, 2023
5
0
Our mum had to move from her first nursing home due to them not being able to manage her needs. My sister and I visited numerous homes and they we're all extremely welcoming and positive about being able to care for mum. However, most of them became less positive once we mentioned we were going through the CHC process. We eventually found a wonderful home who are very supportive and genuinely care about their residents, irrespective of how they are funded.

We're currently going through the appeal phase for mum. I was initially doing all the research myself and liaising with CCG, social services, GP's, nursing home staff, mental health teams, physio's, etc. But eventually they (CHC) were tying me up in knots and being deliberatley obstructive so we made the decision to instruct specialist solicitors to handle the appeal.

I've developed a rather cynical view that the CHC process is morally bankrupt and is applied in such a way that people want to give up because of how mentally and emotionally exhausting it is. It's managed by a bunch of gatekeepers whose primary purpose appears to be to shout "You shall not pass".

That's more rant than helpful :)
Hi - please keep ranting as you are spot on + is useful for us all to know that we aren't alone in this madness. I need to put an appeal in by 3 July (when my 6 months is up) for Mum's CHC and thought I'd try and go it alone - now not sure - any advice based on last few months? is it possible to start the appeal alone and then bring in help once you realise is needed or is that too late? and will it be imposs to get help with an appeal by July 3rd anyway? Thought I could do this but now realising that is all down to interpretation of wording in the DST and that this could vary across the country.....so maybe paying someone who knows how to play the game is worth it......any advice? thanks and good luck.
 

sarahjen

New member
May 8, 2023
5
0
Any advice on whether is worth paying to get expert help with an appeal? Have read through all documents and was thinking I can do this - but now v aware (as I say in reply above) that seems to be about knowing how to play the game and so perhaps expert input is always needed? any advice? Appeal needs to be in by 3rd July but ideally need to get it in asap so that can get this moving......Huge thanks. Sarah
 

Dave63

Registered User
Apr 13, 2022
397
0
Any advice on whether is worth paying to get expert help with an appeal? Have read through all documents and was thinking I can do this - but now v aware (as I say in reply above) that seems to be about knowing how to play the game and so perhaps expert input is always needed? any advice? Appeal needs to be in by 3rd July but ideally need to get it in asap so that can get this moving......Huge thanks. Sarah

Hi Sarah,

We made the decision to use an expert advocate for several reasons. I'm not completely thick (some will disagree :) ) but I found the process not the easiest to navigate and was being led a merry dance by the ICB in regard to my requests for clear explanations on their reasons for reversing mums eligible decision at ratification. I think, also, because it involves a loved one you tend to see every issue as a primary health need and that's not always the case. I was definitely guilty of that. Also, an expert advocate is emotionally detached and is in a much better position to present the reasons for why an ineligible decision is wrong at appeal. Ultimately it comes down to cost/benefit, is it worth the cost of several thousands of pounds to employ an advocate vs the benefit of recouping that cost in home fees if successful? Only you can make that decision.

The CHC process is not meant to be adversarial, it's meant to be 'person-centric', my experience lends me to think nobody has informed the NHS of that fact. I'm sure experiences will vary depending on location but our ICB have been extremely dysfunctional.

The 3rd July is the latest date you need to inform them of your intention to appeal. Mums date was Aug last year but the appeal didn't take place until a couple of weeks ago. If you employ an advocate it'll take months for them to pull in all the records from the different people involved and have their CHC specialists formulate a submission for the appeal.

Good luck

Dave
 
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MarleysMum

Registered User
Sep 17, 2020
33
0
Hi I’m looking for some guidance re appealing CHC Funding decison. I’ve tried to be concise but it’s still very long.

My dad is in a nursing home and is at the late stage of Vascular Dementia. He receives FNC but other than that is self funding In March 2022 he passed the initial checklist CHC. I was involved in a meeting (via teams) with the CHC representative, a social services representative and a nurse from the home. The case then went to the MDT who declined the funding. He scored 1 severe, 3 highs, 2 medium, 1 low and 5 no needs.
His health has deteriorated significantly since then, in particular his ability to swallow resulting in several chest infections and moving to a puréed diet and has patches to dry up his secretions. In early January he was very ill with another chest infection and (unbeknownst to me) the GP prescribed anticipatory medication and a statement of intent was put in place. On 21 March I received a telephone call from a CHC Nurse to say that she had been visiting the home for another resident so decided to review my dad for CHC as the home mentioned I had asked for this. She sat with my dad and spoke to a nurse. When she telephoned me she said that she reviewed the domains and, in her opinion, there was no case for this to be presented to the MDT again, but FNC would continue.

This time he scored P-0, S-1, H-3, M-4, L-1, N-3. I have a copy of the report and at the very least I think the scores should be P-0, S-2, H-4, M-3, L-0, N-3. ( my sister in law works in elderly care and is going to review as well). The report states “ B is totally reliant on others to meet all of his day to day needs, keep him safe and protect him from harm………is highly dependent and needs 24 hour care” yet despite the fact he needs the intervention of 2 staff, is bed bound, too frail to lift with a hoist, is doubly incontinent, has to be assisted with a puréed diet, is nursed on an air mattress and repositioned, has a very high risk of skin breakdown and does not communicate this “does not make his needs intense”

I’m stuck on the way forward. My dads health has deteriorated again even since March and was again considered end of life two weeks ago, but has recovered slightly but not eating and drinking too much. He’s been prescribed supplements and has 2 pressure sores that are being treated. I’m not happy about how the review was carried out, I didn’t know they were going to visit my Dad and wasn’t invited to be present. When she telephoned me it was to tell me that she’d carried out the assessment and it was a negative outcome. The GP does not appear to have been involved. I feel it is only because the home are providing a good level of care that his needs aren’t more intense. The National framework states well managed needs are still needs. A couple of Nurses have said I should appeal the decision. It’s clear that my Dad is considered end of life and his health is unpredictable, hence the SOI, although he’s not currently actively dying. So do I:
- appeal the decision as I don’t agree with scores
- ask for another review due to recent deterioration
- complain that the review wasn’t conducted in accordance with the National framework (I wasn’t given an oppurtunity to attend, no social worker or GP)
- apply for fastrack on the basis that my dad is entering a “terminal phase” and if so do I need an appropriate clinician to confirm this before I apply

I have applied to the GP for his medical records. I have asked the home for a copy of his care plan but I’m still waiting for that. I should add that I have LPA for medical and money and I am my Dads next of kin.
Thank you
 

Dave63

Registered User
Apr 13, 2022
397
0
Hi @MarleysMum

It sounds like the meeting you had via Teams was the MDT (multi disiplinary team). The DST (decision support tool) will have been used to record the evidence and levels of needs agreed during this MDT and this would then have been forwarded, together with the MDT's recommendation, to the ratification panel to approve. If an MDT's recommendation is for full CHC funding then that recommendation should not be overturned at ratification unless there are exceptional circumstances and those circumstances should be clearly explained.

When you received the outcome letter it should also have had a copy of the DST included and it's meant to clearly explain the reasons for ineligibilty. If you disagree with the outcome you have six months from the date of the outcome letter to confirm your intent to appeal.

That's the way it's supposed to work. Unfortunately, the reality is quite often different.

With one severe and several high levels of need the DST guidance notes would suggest a person could expect a positive eligibilty decision.

I'm no expert, but I don't see why you can't ask the GP to get the Fast Track ball rolling and if that's unsuccessful then you still have the buffer of six months to appeal the original MDT decision. Someone with more knowledge than me may be able to confirm that.

The following is a copy and paste from another site regarding Fast Track:

If an individual is approaching the end of their life, then a “fast track” continuing healthcare funding assessment may be appropriate. This enables the individual to receive prompt NHS funding to meet the cost of their care at the end of life stage. The only requirement for by-passing the normal NHS continuing healthcare assessment, meeting the criteria and receiving the fast track pathway is that the individual must have:
  • A rapidly deteriorating condition that may be entering a terminal phase.
A GP can complete the fast track pathway tool.
It should be noted that strict time limits that base eligibility will be specified, expected length of life remaining should not be imposed.


The following is a link to a blank DST which shows the guidance notes I mentioned above regarding scoring vs eligibility. It's note 34 onwards.

 

MarleysMum

Registered User
Sep 17, 2020
33
0
Hi @MarleysMum

It sounds like the meeting you had via Teams was the MDT (multi disiplinary team). The DST (decision support tool) will have been used to record the evidence and levels of needs agreed during this MDT and this would then have been forwarded, together with the MDT's recommendation, to the ratification panel to approve. If an MDT's recommendation is for full CHC funding then that recommendation should not be overturned at ratification unless there are exceptional circumstances and those circumstances should be clearly explained.

When you received the outcome letter it should also have had a copy of the DST included and it's meant to clearly explain the reasons for ineligibilty. If you disagree with the outcome you have six months from the date of the outcome letter to confirm your intent to appeal.

That's the way it's supposed to work. Unfortunately, the reality is quite often different.

With one severe and several high levels of need the DST guidance notes would suggest a person could expect a positive eligibilty decision.

I'm no expert, but I don't see why you can't ask the GP to get the Fast Track ball rolling and if that's unsuccessful then you still have the buffer of six months to appeal the original MDT decision. Someone with more knowledge than me may be able to confirm that.

The following is a copy and paste from another site regarding Fast Track:

If an individual is approaching the end of their life, then a “fast track” continuing healthcare funding assessment may be appropriate. This enables the individual to receive prompt NHS funding to meet the cost of their care at the end of life stage. The only requirement for by-passing the normal NHS continuing healthcare assessment, meeting the criteria and receiving the fast track pathway is that the individual must have:
  • A rapidly deteriorating condition that may be entering a terminal phase.
A GP can complete the fast track pathway tool.
It should be noted that strict time limits that base eligibility will be specified, expected length of life remaining should not be imposed.


The following is a link to a blank DST which shows the guidance notes I mentioned above regarding scoring vs eligibility. It's note 34 onwards.

Thank you I will have a look. I’m sorry if I wasn’t clear, the meeting I was involved with was in March 2022 and yes I received a copy of the DST. My issue is with second checklist 12 months later in March 2023, where I wasn’t involved, just simply informed by telephone that it had been completed and wouldn’t be progressed any further. I then received a letter advising he qualified for FNC. I only received a copy of her report when I specifically requested it.
 

Dave63

Registered User
Apr 13, 2022
397
0
Thank you I will have a look. I’m sorry if I wasn’t clear, the meeting I was involved with was in March 2022 and yes I received a copy of the DST. My issue is with second checklist 12 months later in March 2023, where I wasn’t involved, just simply informed by telephone that it had been completed and wouldn’t be progressed any further. I then received a letter advising he qualified for FNC. I only received a copy of her report when I specifically requested it.
Ahh right, sorry, I assumed the MDT was much later after the initial checklist in March last year, my bad :)

We requested a checklist in Mar 2021 and it was repeatedly refused by the CCG because mum wasn't what they called medically optimised. It wasn't accepted until 12 months later and then it took another 10 months to arrange the MDT. It's been quite the saga.

If I were in your position I too wouldn't be happy with the CHC nurses decision not to recommend another positive checklist. If your dads needs have increased since the original checklist last year then you would think it would trigger another positive checklist now?

Did the care home give any feedback with regards to how the checklist was conducted and what information the chc nurse referred to?

As far as I know you can request a checklist assessment at any time and it can be done by the GP, social worker, care home nurse or any medical professional involved in your dads care.
 

Dave63

Registered User
Apr 13, 2022
397
0
Another thing which strikes me as unusual is the fact she appears to have scored your dad based on how a DST is completed with P, S, H, M ,L, as opposed to how a checklist is scored with A, B, C, D.

If she was visiting another resident she obviously wouldn't have had your dads previous DST to compare his needs then with his needs now. If she has used a DST as a screening tool instead of a checklist that seems very inappropriate. It may be appropriate if your dad was currently in receipt of full chc funding and she was reviewing to make sure his needs had not changed, but he's not, so surely the checklist should be used to establish if he should be considered for another MDT? It's a minefield, so I may be wrong, but I'd definitely be querying the validity of her decision based on the fact she has used DST criteria to reach it.
 

MarleysMum

Registered User
Sep 17, 2020
33
0
Hi I’m looking for some guidance re appealing CHC Funding decison. I’ve tried to be concise but it’s still very long.

My dad is in a nursing home and is at the late stage of Vascular Dementia. He receives FNC but other than that is self funding In March 2022 he passed the initial checklist CHC. I was involved in a meeting (via teams) with the CHC representative, a social services representative and a nurse from the home. The case then went to the MDT who declined the funding. He scored 1 severe, 3 highs, 2 medium, 1 low and 5 no needs.
His health has deteriorated significantly since then, in particular his ability to swallow resulting in several chest infections and moving to a puréed diet and has patches to dry up his secretions. In early January he was very ill with another chest infection and (unbeknownst to me) the GP prescribed anticipatory medication and a statement of intent was put in place. On 21 March I received a telephone call from a CHC Nurse to say that she had been visiting the home for another resident so decided to review my dad for CHC as the home mentioned I had asked for this. She sat with my dad and spoke to a nurse. When she telephoned me she said that she reviewed the domains and, in her opinion, there was no case for this to be presented to the MDT again, but FNC would continue.

This time he scored P-0, S-1, H-3, M-4, L-1, N-3. I have a copy of the report and at the very least I think the scores should be P-0, S-2, H-4, M-3, L-0, N-3. ( my sister in law works in elderly care and is going to review as well). The report states “ B is totally reliant on others to meet all of his day to day needs, keep him safe and protect him from harm………is highly dependent and needs 24 hour care” yet despite the fact he needs the intervention of 2 staff, is bed bound, too frail to lift with a hoist, is doubly incontinent, has to be assisted with a puréed diet, is nursed on an air mattress and repositioned, has a very high risk of skin breakdown and does not communicate this “does not make his needs intense”

I’m stuck on the way forward. My dads health has deteriorated again even since March and was again considered end of life two weeks ago, but has recovered slightly but not eating and drinking too much. He’s been prescribed supplements and has 2 pressure sores that are being treated. I’m not happy about how the review was carried out, I didn’t know they were going to visit my Dad and wasn’t invited to be present. When she telephoned me it was to tell me that she’d carried out the assessment and it was a negative outcome. The GP does not appear to have been involved. I feel it is only because the home are providing a good level of care that his needs aren’t more intense. The National framework states well managed needs are still needs. A couple of Nurses have said I should appeal the decision. It’s clear that my Dad is considered end of life and his health is unpredictable, hence the SOI, although he’s not currently actively dying. So do I:
- appeal the decision as I don’t agree with scores
- ask for another review due to recent deterioration
- complain that the review wasn’t conducted in accordance with the National framework (I wasn’t given an oppurtunity to attend, no social worker or GP)
- apply for fastrack on the basis that my dad is entering a “terminal phase” and if so do I need an appropriate clinician to confirm this before I apply

I have applied to the GP for his medical records. I have asked the home for a copy of his care plan but I’m still waiting for that. I should add that I have LPA for medical and money and I am my Dads next of kin.
Thank you

Another thing which strikes me as unusual is the fact she appears to have scored your dad based on how a DST is completed with P, S, H, M ,L, as opposed to how a checklist is scored with A, B, C, D.

If she was visiting another resident she obviously wouldn't have had your dads previous DST to compare his needs then with his needs now. If she has used a DST as a screening tool instead of a checklist that seems very inappropriate. It may be appropriate if your dad was currently in receipt of full chc funding and she was reviewing to make sure his needs had not changed, but he's not, so surely the checklist should be used to establish if he should be considered for another MDT? It's a minefield, so I may be wrong, but I'd definitely be querying the validity of her decision based on the fact she has used DST criteria to reach it.
Thanks again. What you’ve said is exactly my thoughts too. I’ve spent hours going through it and discussed it with my sister in law. I’ve decided to go down the route of requesting another checklist is done as the outcome letter only refers to FNC. There is no decision letter regarding CHC or any rationale for why he is not eligible for a full assessment (especially when last year the checklist warranted a full assessment and his needs have worsened). I wasn’t given notice of the checklist being completed and the opportunity to attend (my Dad doesn’t communicate at all) and notwithstanding all that he’s further deteriorated. I’ll then go through the report I’ve got for FNC review line by line so I can discuss/challenge at the checklist meeting. I’m also going to see the GP to discuss his health and whether he’s entering a terminal stage (he’s been end of life twice this year but “rallied)
thanks again
 

MarleysMum

Registered User
Sep 17, 2020
33
0
Ahh right, sorry, I assumed the MDT was much later after the initial checklist in March last year, my bad :)

We requested a checklist in Mar 2021 and it was repeatedly refused by the CCG because mum wasn't what they called medically optimised. It wasn't accepted until 12 months later and then it took another 10 months to arrange the MDT. It's been quite the saga.

If I were in your position I too wouldn't be happy with the CHC nurses decision not to recommend another positive checklist. If your dads needs have increased since the original checklist last year then you would think it would trigger another positive checklist now?

Did the care home give any feedback with regards to how the checklist was conducted and what information the chc nurse referred to?

As far as I know you can request a checklist assessment at any time and it can be done by the GP, social worker, care home nurse or any medical professional involved in your dads care.
Sorry, the nursing home didn’t give any feedback. I emailed the care home manager after the visit asking for copies of any reports they had in respect of the visit and she said the CHC would have them all. I asked for a copy of his care plan and she said it was all electronic (I’d be surprised if it wasn’t) but I was welcome to read it on a visit ! I’ve replied saying sure it can be downloaded onto a document for me and I’m still chasing that. I’m happy with the quality of care my Dad gets and when I ask the nurses directly I get answers but I find the communication outside of his actual care is generally poor.
 

MarleysMum

Registered User
Sep 17, 2020
33
0
An update. I emailed the CHC this morning and have had a reply stating that they completely appreciate my concerns regarding the last assessment and will arrange another one where I will be present. I’m not getting my hopes up though
 

Dave63

Registered User
Apr 13, 2022
397
0
An update. I emailed the CHC this morning and have had a reply stating that they completely appreciate my concerns regarding the last assessment and will arrange another one where I will be present. I’m not getting my hopes up though
That's good news, hope it goes well.
Have they confirmed it will be a checklist assessment?
 

sarahjen

New member
May 8, 2023
5
0
Hi Sarah,

We made the decision to use an expert advocate for several reasons. I'm not completely thick (some will disagree :) ) but I found the process not the easiest to navigate and was being led a merry dance by the ICB in regard to my requests for clear explanations on their reasons for reversing mums eligible decision at ratification. I think, also, because it involves a loved one you tend to see every issue as a primary health need and that's not always the case. I was definitely guilty of that. Also, an expert advocate is emotionally detached and is in a much better position to present the reasons for why an ineligible decision is wrong at appeal. Ultimately it comes down to cost/benefit, is it worth the cost of several thousands of pounds to employ an advocate vs the benefit of recouping that cost in home fees if successful? Only you can make that decision.

The CHC process is not meant to be adversarial, it's meant to be 'person-centric', my experience lends me to think nobody has informed the NHS of that fact. I'm sure experiences will vary depending on location but our ICB have been extremely dysfunctional.

The 3rd July is the latest date you need to inform them of your intention to appeal. Mums date was Aug last year but the appeal didn't take place until a couple of weeks ago. If you employ an advocate it'll take months for them to pull in all the records from the different people involved and have their CHC specialists formulate a submission for the appeal.

Good luck

Dave
Hi Dave - thanks for your reply and good luck. Have you heard the appeal results? (sorry if you have said) And is there any chance that you wold be willing to share your appeal doc with me? - or know of any others that you could point me in the direction of? would be hugely useful as I've now done lots of reading / pulled lots of thoughts together and now working out how to best structure it! There is useful info on Care to be Different but their example appeal for the 4 indicators doesn't seem to totally tally with their advice - or with the info on the indicators.......which makes me think I'm stupid not to have got help with this! If you can help let me know and I can share my email. Hugest thanks and good luck. Sarah
 

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