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

[Palerider]

Best wishes for the 16th.

Dad's CHC was denied but I will be appealing. He's deteriorating, not eating/drinking well, weight decreasing and now on three Ensure per day, seems that's keeping him going. He's had a chest infection so been on antibiotics for 7 days so added more meds to have covertly as he refuses to take anything. Loads of other problems and don't feel the CHC people adequately considered the complexity/interrelated issues around these problems.

Awful to say this but I'm starting to wonder whether giving him more drugs for infections, and all his other ailments including his severe heart failure for that matter, is in his best interests as he's said he wants to kill himself on three occasions recently. Maybe time to speak with the GP who can then advise the nursing staff under his statement of intent I presume.

Got nowhere as you'd predicted with the local MP but I will keep going with this.

Please keep us up to date, I was nervous going into my meeting of seven of us but soon got into my stride and took copious notes. You're more practised and know the procedures so great you have kept going.

Hello @SET

Its tiring isn't it? The harder you try the harder it gets on this one. MP's aren't interested because its not a vote winner. I just got an email from my local MP telling me facts I already know - he didn't answer my question about social care and funding, and believe it or not we are both members of the same poltical party .

I think I would use some objective judgement rather than what your father is telling you in terms of whether he should be for further treatment beyond that of what is at a level he already recieves. I would certainly talk to his GP about your concerns around his general health and deterioration. Sadly the term 'heart failure' is bounded around so much these days that people forget what that means, and it does have a terminal phase despite medication. The only fix for heart failure if it is not transient is a heart transplant and that is not on the cards for someone like your dad. It is reasonable to treat infections, the question is should that treament become more aggressive than the accepted standard of care in such circumstances -certainly ask to speak to his GP and gather their thoughts on ceiling of care, and hospital admission and the futility of CPR.

Once this saga is over I will post what I have learned from it to help anyone in the same situation -it may be some time yet, but I will do it

 

[Palerider]

Phew just finished the CHC review panel. Mums advocate was very good and I contributed in parts -3.5 hrs in total. Now wait for the decision by letter which will take up to six weeks. If eligible then case won, if not eligible then it goes to and independent review panel NHS England

 

[Jaded'n'faded]

And when you think that any old social worker can make a decision in minutes about whether a PWD has capacity or needs to be in a care home or remain at home - a much bigger decision in many ways. Yet if you want the state to recognise that your mum's care needs have increased to the extent that CHC is required, it takes months/years, the involvement of an independent legal fim (in your case) and teams of people presenting evidence for hours.

It's not right, is it?

 

[SET]

I hope that in some way you now feel relieved that part is over. However, my increasing experience is that's it's never fully over whilst the PWD is still with us due to regular reviews, your experience of having funding pulled, dealing with care/nursing homes etc.

It's certainly not right, the whole regime needs a complete review. There are too many supposedly learned people making critical decisions along this emotional path we all tread on this forum who have very little experience of, and detailed knowledge about, dementia and how it affects the PWD and their family. Not only is this in terms of financial aspects but the emotional crises along the way which often leaves family carers with ill-health themselves. I'm still working on what step to take next re initiating change.

On Monday my Dad punched an agency carer in the eye, she'd got glasses on. Something else for me to "guilt" about. Risk assessments undertaken in the nursing home should have addressed this issue as I've been honest about his behaviour in hospital and before he was on risperidone. Possibly his dosage needs increasing as his body gets used to the effects but there are contraindications with his heart drugs, just one of the many complexity issues the CHC funding meeting didn't fully consider in my view. My advice to anybody on this forum is to keep detailed notes in a diary about what both carers and nurses tell you about behaviours etc. Hospitals and care homes don't always document everything but may verbally tell you. Any funding meeting will usually require written evidence.

Having all these comments/support is fantastic, thank you and best wishes to Palerider and All.

 

[Palerider]

And when you think that any old social worker can make a decision in minutes about whether a PWD has capacity or needs to be in a care home or remain at home - a much bigger decision in many ways. Yet if you want the state to recognise that your mum's care needs have increased to the extent that CHC is required, it takes months/years, the involvement of an independent legal fim (in your case) and teams of people presenting evidence for hours.

It's not right, is it?

Its quite bizarre that mum was assessed not to have capacity for permanent residence in a care home (not able to assess any risk to herself) but the CHC DST said that she was able to even though she had wandered, needs complete 24/7 support and monitoring and had to moved to an EMI unit through challenging behaviour. Its all quite contradictiory and the documentation from the EMI unit also contradicted itself which doesn't help, but there was strong evidence to show mums cognitive impairment overall affects her other domains of health needs.

 

[Palerider]

I hope that in some way you now feel relieved that part is over. However, my increasing experience is that's it's never fully over whilst the PWD is still with us due to regular reviews, your experience of having funding pulled, dealing with care/nursing homes etc.

It's certainly not right, the whole regime needs a complete review. There are too many supposedly learned people making critical decisions along this emotional path we all tread on this forum who have very little experience of, and detailed knowledge about, dementia and how it affects the PWD and their family. Not only is this in terms of financial aspects but the emotional crises along the way which often leaves family carers with ill-health themselves. I'm still working on what step to take next re initiating change.

On Monday my Dad punched an agency carer in the eye, she'd got glasses on. Something else for me to "guilt" about. Risk assessments undertaken in the nursing home should have addressed this issue as I've been honest about his behaviour in hospital and before he was on risperidone. Possibly his dosage needs increasing as his body gets used to the effects but there are contraindications with his heart drugs, just one of the many complexity issues the CHC funding meeting didn't fully consider in my view. My advice to anybody on this forum is to keep detailed notes in a diary about what both carers and nurses tell you about behaviours etc. Hospitals and care homes don't always document everything but may verbally tell you. Any funding meeting will usually require written evidence.

Having all these comments/support is fantastic, thank you and best wishes to Palerider and All.

Yes keep a diary, also names, role, dates and times if you can -its very important. Mum had considerable gaps in her documentation where intervention had clearly taken place but had not been documented or where the decision was made that is was best to omit an intervention but this was also not documented as to why. I filled in a few gaps during the meeting where the GP had been involved but this had not been documented in mums care home notes /care plan.

I think it wil be very difficult to initiate change having now lost the increase in NI contributions and the currentnational financil situation, but I am writing back to my MP to keep them reminded of this situation and the overall problem with social care.

 

[Netty2]

I'll watch your thread and very best wishes with the appeal.

Sorry I don't have any formal help I can offer as my Dad's just coming up to the end of his assessment period in an EMI nursing home after two months in hospital and we're just preparing for the CHC to get involved for their assessment procedures. What I can say though is the process from before diagnosis through to where you are at it seems is just unbelievably non-service user friendly, not transparent, every SS does things differently probably to save them money if they can, we're now on our fourth social worker etc etc.........

I worked in a local authority many years ago but then private sector ever since (over 40 years total working life) and, without getting political as it's not about politics, local authority SS departments and their procedures in my opinion need completely overhauling! It's enough having to see a loved one going rapidly downhill with dementia and other health issues never mind having to deal with SS people who all say different things, waste time completing forms when we're then told that their completed form can't be accepted and another one needs completing, notes are not kept up to date, competency leaves a lot to be desired and I could go on.................

I'm not sure whether this is allowed in this Forum so please correct me if not but I'm considering starting a campaign to gain enough "signatures" to force a debate in parliament about what it seems a lot of us on here are having to go through with SS to ensure our loved one's care is decent and fair. Perhaps someone knows if this has already been done??? It needs parliament involved to tell SS what they are and are not allowed to do rather than being vague about particularly the early part of the process, social workers need competencies improving so they're all singing from the same hymn sheet and know the rules etc.........I know the process is complicated and every person's dementia is their own but there must be something better than this almost "make it up as we go along" surely. I've already kicked up some stinks and SS have met me halfway as it were but really I am looking after my Dad and Mum and don't really have time/energy to fight everyone along this line. Maybe this rant also applies to the CHC people, I don't know as yet, are they LA people or central government or a mix?

Apologies, I feel better for my rant to you but I am serious about the signatures issue. Best wishes to everyone who's having the same fights, all the posts on here help tremendously.

So disappointed and frustrated to hear yesterday about the delay in the introduction of the £86 thousand Social Care Cap. So disappointed and frustrated that the standalone dementia policy that was promised by the end of 2022 is nowhere to be seen. So disappointed and frustrated that the proposed actions of Sajid Javid who spoke at the Alzheimer's Society annual meeting saying dementia would be given the same priority as cancer have disappeared without trace. My father who had vascular dementia, died in May 2021 but my heart and feelings are with all those who are having to battle with a failing health and social care system, and the struggles to try get support for those with dementia and their families. After an 18 month battle with Devon CCG ( now Devon ICB) I successfully won my appeal for CHC funding - retrospective refund to be made for my father's care home fees. As a retired Local Authority solicitor I was able to hold my own, but it was emotionally draining and time consuming. Yes the threshold is set high to qualify for CHC funding but what I found appalling was the poor practice and procedure, lip service given by Devon ICB to the good practice principles and processes in the National Framework, no policy documents in place and the assessment process being unfair and not balanced. Until and unless the poor quality assessments and processes are challenged by groups such as the Alzheimer's Society/Dementia UK individuals are going to continue to be failed by the current CHC assessment process. As for help from Adult Social Care this was non existent for my father. He had a Care Act assessment - found to have eligible needs but as he had savings over the threshold limit Social Care immedialty closed his file. The only sign posting they were willing to give was to provide a list of care homes with vacancies. I am willing to sign any petition to raise awareness of all these issues which affect those who have drawn the short straw of having dementia.

 

[Palerider]

So disappointed and frustrated to hear yesterday about the delay in the introduction of the £86 thousand Social Care Cap. So disappointed and frustrated that the standalone dementia policy that was promised by the end of 2022 is nowhere to be seen. So disappointed and frustrated that the proposed actions of Sajid Javid who spoke at the Alzheimer's Society annual meeting saying dementia would be given the same priority as cancer have disappeared without trace. My father who had vascular dementia, died in May 2021 but my heart and feelings are with all those who are having to battle with a failing health and social care system, and the struggles to try get support for those with dementia and their families. After an 18 month battle with Devon CCG ( now Devon ICB) I successfully won my appeal for CHC funding - retrospective refund to be made for my father's care home fees. As a retired Local Authority solicitor I was able to hold my own, but it was emotionally draining and time consuming. Yes the threshold is set high to qualify for CHC funding but what I found appalling was the poor practice and procedure, lip service given by Devon ICB to the good practice principles and processes in the National Framework, no policy documents in place and the assessment process being unfair and not balanced. Until and unless the poor quality assessments and processes are challenged by groups such as the Alzheimer's Society/Dementia UK individuals are going to continue to be failed by the current CHC assessment process. As for help from Adult Social Care this was non existent for my father. He had a Care Act assessment - found to have eligible needs but as he had savings over the threshold limit Social Care immedialty closed his file. The only sign posting they were willing to give was to provide a list of care homes with vacancies. I am willing to sign any petition to raise awareness of all these issues which affect those who have drawn the short straw of having dementia.

Hi @Netty2

Thanks for sharing

I think there is general dissapointment in how things have turned out having come so close to some kind of positive change on the dementia front. I think this arena will always be less able to get the attention it deserves because it is a 'blind spot' in the public eye, that is until it catches people out, but depsite the current set back it has moved up the agenda, what is important is that all of those who are stakeholders in dementia care keep on chipping away at this.

I think you did well to navigate the CHC panel yourself and yes it is tiring and draining to have to go into specific detail in order to challenge any DST outcome over eligibility as well as emotionally charged. The system is weighted against people, not because of the actual CHC DST but as you say and I agree by my own experience the 'appalling [...] poor practice and procedure' -I think this was clear in my mums case having read in detail a considerable amount of documented evidence which contradicted the original DST assessment. The other aspect is that it is hard for people to grasp how to argue any matters around the DST and guidance, and this is where a lot of people fall down if they try to self represent. It is not clear to ordinary people what is required, however some people are fortunate enough to be able to grasp this but many can't -it is somewhat elusive to many people in what actually needs to be addressed as a remedy. It also seemed to me looking at matters that the process was also elusive to those who made the original DST assessment.

I would advise anyone who is struggling with this aspect of care to seek help / advice rather than go it alone, that is of course unless they are feeling competent and confident in their understanding of the process.

 

[Jaded'n'faded]

I would advise anyone who is struggling with this aspect of care to seek help / advice rather than go it alone, that is of course unless they are feeling competent and confident in their understanding of the process.

This makes me so angry. (The system, not your advice!)

CHC is a legal entitlement for those who qualify yet it is clearly set up to disqualify as many people as possible. It seems incredible to me that you and others have had to get legal firms to represent you, to make sure you 'say the right things' that will trigger eligibility. If someone meets the criteria then they should get it. End of. This is not a complicated court case going on for years needing bucketloads of evidence and barristers' legalese. And how many people are employed by the LA/NHS/CCG (and whoever else wants to get involved) to do all these meetings and assessments? How many times are decisions overturned for procedural mistakes?

The system is so complicated and hard to negotiate that only the very able or very persistent will get through. And of course, it also depends whereabouts in the country you live which is deeply unfair too.

It's all a big fight over who has to pay, not about the person at all.

 

[Palerider]

This makes me so angry. (The system, not your advice!)

CHC is a legal entitlement for those who qualify yet it is clearly set up to disqualify as many people as possible. It seems incredible to me that you and others have had to get legal firms to represent you, to make sure you 'say the right things' that will trigger eligibility. If someone meets the criteria then they should get it. End of. This is not a complicated court case going on for years needing bucketloads of evidence and barristers' legalese. And how many people are employed by the LA/NHS/CCG (and whoever else wants to get involved) to do all these meetings and assessments? How many times are decisions overturned for procedural mistakes?

The system is so complicated and hard to negotiate that only the very able or very persistent will get through. And of course, it also depends whereabouts in the country you live which is deeply unfair too.

It's all a big fight over who has to pay, not about the person at all.

The problem is that the DST tool and guidance is open to wide interpretation and often that guidance is not followed appropriately or those who form the DST panel fail to exercise due professional expertise / objective judgement. It is very reliant on documentation which is often either absent, incomplete or misinformed (in many ways) as well as cognitive bias. The DST panel are not required to attend and visit the person who the claim is for to assess them against the criteria for themselves as any dispute means that evidence can only be raised at the time of the original DST assessment / eligibility for CHC funding which means of course unless the DST panel can do time travel it isn't possible.

This experience for me has also highlighted how poor the documentation is in relation to mums care, and that is concerning. This is a professional requirement by all healthcare professionals.

I feel that the whole process needs review, but how that is achieved may prove difficult after the last legal challenge for judicial review was denied as being a mattter for the 'political sphere'

As you say @Jaded'n'faded persistence is crucial around this matter, because one of the barriers to challenging any DST decision is the process itself.

 

[Jaded'n'faded]

The problem is that the DST tool and guidance is open to wide interpretation and often that guidance is not followed appropriately or those who form the DST panel fail to exercise due professional expertise / objective judgement. It is very reliant on documentation which is often either absent, incomplete or misinformed (in many ways) as well as cognitive bias. The DST panel are not required to attend and visit the person who the claim is for to assess them against the criteria for themselves as any dispute means that evidence can only be raised at the time of the original DST assessment / eligibility for CHC funding which means of course unless the DST panel can do time travel it isn't possible.

This experience for me has also highlighted how poor the documentation is in relation to mums care, and that is concerning. This is a professional requirement by all healthcare professionals.

I feel that the whole process needs review, but how that is achieved may prove difficult after the last legal challenge for judicial review was denied as being a mattter for the 'political sphere'

As you say @Jaded'n'faded persistence is crucial around this matter, because one of the barriers to challenging any DST decision is the process itself.

In other words Not Fit for Purpose. It should be scrapped and a new/better scheme created.

But I do know it's easy to say that, far less easy to do. I understand the way the judicial review went because it is true. Until it's decided whether social services or the health service are responsible for old age care, this battle to get CHC will continue. With older people it is often impossible to separate health care needs from 'social care' needs, so why do they keep trying? People don't need one or they other, they need both, so care for old people needs to be discussed and provided on that basis.

 

[Palerider]

In other words Not Fit for Purpose. It should be scrapped and a new/better scheme created.

But I do know it's easy to say that, far less easy to do. I understand the way the judicial review went because it is true. Until it's decided whether social services or the health service are responsible for old age care, this battle to get CHC will continue. With older people it is often impossible to separate health care needs from 'social care' needs, so why do they keep trying? People don't need one or they other, they need both, so care for old people needs to be discussed and provided on that basis.

Absolutely

It needs complete political reform and a change to the current legislation which currently leaves people wide open to a completely dysfunctional process and one full of latent system errors. I doubt very much anyone could objectively assess as per the guidelines as the system exists in its current form free of cognitive bias -and that is actually more complex than it reads

 

[Palerider]

Haven't heard anything yet. Have written to my MP and recieved an automated email response about social care -so I wrote back and asked them not to send me automated responses as the actual experience is quite sufficient ?

 

[Palerider]

Well one week to go before Christmas and mums advocate has contacted the CHC ICB chair to ask why the outcome from the review has not been forwarded. They have apologized and said in the next 5 to 7 days we will be informed . I think after Christmas would be better just in case its another set back

 

[Snowdrops77]

Well one week to go before Christmas and mums advocate has contacted the CHC ICB chair to ask why the outcome from the review has not been forwarded. They have apologized and said in the next 5 to 7 days we will be informed . I think after Christmas would be better just in case its another set back

Hello Palerider,
I'm watching your thread 🤞I hope it's good news. It is just a constant battle. I am now waiting for authorisation for CHC budget. Mum now has been assessed and confirmed she qualifies 24hr 7 days a week 7 waking nights for the grand some of £3,300 its shocking. I'm going the Direct payment route, so I have been told to inform the care agency we are using so they can be ready ! And new bank account all set up. I have no idea if this amount will be authorised. They told me about 4 week wait to here. I feel like we just need to get through Christmas and wait to see what happens in January.

 

[Palerider]

Hello Palerider,
I'm watching your thread 🤞I hope it's good news. It is just a constant battle. I am now waiting for authorisation for CHC budget. Mum now has been assessed and confirmed she qualifies 24hr 7 days a week 7 waking nights for the grand some of £3,300 its shocking. I'm going the Direct payment route, so I have been told to inform the care agency we are using so they can be ready ! And new bank account all set up. I have no idea if this amount will be authorised. They told me about 4 week wait to here. I feel like we just need to get through Christmas and wait to see what happens in January.

Thanks

It is a constant battle isn't it -everything around dementia is a constant battle and no wonder people just give up.

 

[Snowdrops77]

Thanks

It is a constant battle isn't it -everything around dementia is a constant battle and no wonder people just give up.

Hello, mum's CHC budget 24hr and 7 waking nights just been agreed and authorised. Reveiw in 3 months sounds like they will be looking for any chance to reduce the budget. I've gone down the Direct payment route so I can have a choice of care agency I will be using a firm we have had previously. Hopefully all works out. Hope you get a good result.

 

[Palerider]

Hello, mum's CHC budget 24hr and 7 waking nights just been agreed and authorised. Reveiw in 3 months sounds like they will be looking for any chance to reduce the budget. I've gone down the Direct payment route so I can have a choice of care agency I will be using a firm we have had previously. Hopefully all works out. Hope you get a good result.

The outcome has again been delayed due to 'unforeseen circumstances'. I am glad I have an advocate team dealing with it, because I would have probably lost the plot by now🤬

 

[PollyMolly]

So disappointed and frustrated to hear yesterday about the delay in the introduction of the £86 thousand Social Care Cap. So disappointed and frustrated that the standalone dementia policy that was promised by the end of 2022 is nowhere to be seen. So disappointed and frustrated that the proposed actions of Sajid Javid who spoke at the Alzheimer's Society annual meeting saying dementia would be given the same priority as cancer have disappeared without trace. My father who had vascular dementia, died in May 2021 but my heart and feelings are with all those who are having to battle with a failing health and social care system, and the struggles to try get support for those with dementia and their families. After an 18 month battle with Devon CCG ( now Devon ICB) I successfully won my appeal for CHC funding - retrospective refund to be made for my father's care home fees. As a retired Local Authority solicitor I was able to hold my own, but it was emotionally draining and time consuming. Yes the threshold is set high to qualify for CHC funding but what I found appalling was the poor practice and procedure, lip service given by Devon ICB to the good practice principles and processes in the National Framework, no policy documents in place and the assessment process being unfair and not balanced. Until and unless the poor quality assessments and processes are challenged by groups such as the Alzheimer's Society/Dementia UK individuals are going to continue to be failed by the current CHC assessment process. As for help from Adult Social Care this was non existent for my father. He had a Care Act assessment - found to have eligible needs but as he had savings over the threshold limit Social Care immedialty closed his file. The only sign posting they were willing to give was to provide a list of care homes with vacancies. I am willing to sign any petition to raise awareness of all these issues which affect those who have drawn the short straw of having dementia.

Oh my goodness -you successfully won your appeal? Amazing. Just wondering whether to embark on one...parent in care home after being discharged from hospital just been refused CHC funding-given FNC , but the reasons given for him not having a primary health need entirely subjective and confusing ....Same LA as you....really feel assessment process not balanced and unfair just as you describe.
Any tips or advice as to where to start??...whether to start to appeal at all? Thank you.

 

[Netty2]

Oh my goodness -you successfully won your appeal? Amazing. Just wondering whether to embark on one...parent in care home after being discharged from hospital just been refused CHC funding-given FNC , but the reasons given for him not having a primary health need entirely subjective and confusing ....Same LA as you....really feel assessment process not balanced and unfair just as you describe.
Any tips or advice as to where to start??...whether to start to appeal at all? Thank you.

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.