continuing care fees and costs
- Thread starter iggypop37
- Start date
It is understandable that people do not always appeal, given the huge amount of time, energy and research that needs to be done, which even then does not guarantee success. Health authorities know this is the case and bank on people not appealing, then happily (and illegally) pass on the massive costs to the patients themselves (or cash strapped local authorities if the patients fall below the means test).
Far more needs to be done to highlight this scandal nationally. I am sure the average 'man in the street' is completely unaware of it and only become so when it affects them or their families. They are then usually too tied up in the whole business of caring, to spend time appealing or campaigning.
A straw poll of friends revealed that virtually no-one had heard of Continuing Healthcare let alone the whole Pamela Coughlan judgement which led up to it.
Since that landmark case in 1999, the law states that anyone whose health needs are equal to or greater than Pamela Coughlan's are entitled to Continuing Healthcare. However, this and other similar websites bear witness to the degree to which the NHS flout his judgement on a daily basis to thousands of severely ill people, and get away with it.
Pamela Coughlan has physical disabilities (paralysis) as opposed to Alzheimer's, so her greatest needs are confined to the domains of Mobility and Continence, with, of course, no needs whatsoever in Cognition, Communication and Behaviour - the very domains in which Alzheimers sufferers score highly. They also, of course, often have continence and mobility issues as well. Many people posting on this thread have stated how only severe behaviour seems to trigger full CHC but this should not be the case if the law were adhered to.
I know that Alzheimer's Society and other health charities are campaigning on CHC but sadly it seems that not much progress has been made.
Far more needs to be done to highlight this scandal nationally. I am sure the average 'man in the street' is completely unaware of it and only become so when it affects them or their families. They are then usually too tied up in the whole business of caring, to spend time appealing or campaigning.
A straw poll of friends revealed that virtually no-one had heard of Continuing Healthcare let alone the whole Pamela Coughlan judgement which led up to it.
Since that landmark case in 1999, the law states that anyone whose health needs are equal to or greater than Pamela Coughlan's are entitled to Continuing Healthcare. However, this and other similar websites bear witness to the degree to which the NHS flout his judgement on a daily basis to thousands of severely ill people, and get away with it.
Pamela Coughlan has physical disabilities (paralysis) as opposed to Alzheimer's, so her greatest needs are confined to the domains of Mobility and Continence, with, of course, no needs whatsoever in Cognition, Communication and Behaviour - the very domains in which Alzheimers sufferers score highly. They also, of course, often have continence and mobility issues as well. Many people posting on this thread have stated how only severe behaviour seems to trigger full CHC but this should not be the case if the law were adhered to.
I know that Alzheimer's Society and other health charities are campaigning on CHC but sadly it seems that not much progress has been made.
Everyone has the right to apply for CHC funding and it should happen automatically when someone is being discharged to a nursing home.
However, it does no one any favours by building up false hope. Some people are under the impression that dementia alone will merit the funding but sadly, much though we would like it to, it doesn't unless other health factors come into play.
It isn't given for social care no matter how deserving that appears.
So, I would encourage anyone and everyone to apply for it but to do so with eyes wide open and be prepared for a long and hard struggle in many cases. Not with all, as it is still a postcode lottery and there are of course, a number of cases where the funding is not in any doubt.
We can only report on our own experiences, some of which are more positive than others.
However, it does no one any favours by building up false hope. Some people are under the impression that dementia alone will merit the funding but sadly, much though we would like it to, it doesn't unless other health factors come into play.
It isn't given for social care no matter how deserving that appears.
So, I would encourage anyone and everyone to apply for it but to do so with eyes wide open and be prepared for a long and hard struggle in many cases. Not with all, as it is still a postcode lottery and there are of course, a number of cases where the funding is not in any doubt.
We can only report on our own experiences, some of which are more positive than others.
I agree dementia in itself does not qualify for CHC.
AIUI the rational behind CHC is that somebody is in hospital but does not the full services and infrastructure of the hospital, they do however require considerable help for their medical problems.
The NHS therefore agrees to fund the care in a third party setting thus freeing up a bed, quite possibly putting the person in a better situation, and in the process achieving a cost saving for the care of the person.
I believe that to be the theory but in practice it's all to do with cash and budgets.
AIUI the rational behind CHC is that somebody is in hospital but does not the full services and infrastructure of the hospital, they do however require considerable help for their medical problems.
The NHS therefore agrees to fund the care in a third party setting thus freeing up a bed, quite possibly putting the person in a better situation, and in the process achieving a cost saving for the care of the person.
I believe that to be the theory but in practice it's all to do with cash and budgets.
Geum 123 and Saffie
My post was more about appealing once CHC has been refused (as it usually is) rather than applying for it in the first place.
However, the fact remains that the bar for receiving it is being set far too high - and much higher than it should be if the NHS were to follow the letter of the law (The 1999 Coughlan judgement).
The vast majority of the people posting on here saying they have been refused CHC actually have needs even greater than Pamela Coughlan. The fact that they have Alzheimer's in the first place would score high or even severe in the Cognition domain, (and probably a reasonably high score in Communication and/or Behaviour as well), whereas Pamela has no needs at all in any of these three! If they also score in Mobility and/or Continence (Where Pamela's needs mainly lie - although not severe), they should be scoring way above the threshold, not below it, which is what is actually happening on a massive scale.
The Funded Nursing Care contribution which is usually awarded instead of full CHC can only be received if you are in a Nursing Home, meaning it might cost you £700-£900 a week to get a £109 benefit! Pamela Coughlan was awarded full NHS funding - and set the bar for this at the same time - but because the Great British Public are largely ignorant of this case, the NHS get away with charging people who actually need an even greater level of care than she does!
It beggars belief why we are letting this happen.
My post was more about appealing once CHC has been refused (as it usually is) rather than applying for it in the first place.
However, the fact remains that the bar for receiving it is being set far too high - and much higher than it should be if the NHS were to follow the letter of the law (The 1999 Coughlan judgement).
The vast majority of the people posting on here saying they have been refused CHC actually have needs even greater than Pamela Coughlan. The fact that they have Alzheimer's in the first place would score high or even severe in the Cognition domain, (and probably a reasonably high score in Communication and/or Behaviour as well), whereas Pamela has no needs at all in any of these three! If they also score in Mobility and/or Continence (Where Pamela's needs mainly lie - although not severe), they should be scoring way above the threshold, not below it, which is what is actually happening on a massive scale.
The Funded Nursing Care contribution which is usually awarded instead of full CHC can only be received if you are in a Nursing Home, meaning it might cost you £700-£900 a week to get a £109 benefit! Pamela Coughlan was awarded full NHS funding - and set the bar for this at the same time - but because the Great British Public are largely ignorant of this case, the NHS get away with charging people who actually need an even greater level of care than she does!
It beggars belief why we are letting this happen.
EPA and access to daily log
I have Mum's checklist tomorrow, I intend to go for DST regardless of checklist, however I am hampered by care home's refusal to allow me access to Mum's care plan and daily log to compare my notes and gain necessary information,. I have argued that this is for financial reasons which my EPA covers and that LPAs were not in existence when my parents made EPAs. Mum has lost capacity so no joy there! I have read the DST guidance and(would you believe) the Framewrok but seeing earlier commdents I don't think Mum stands a cat in H----'s chance!!
Thanks for listening.
borisa
I have Mum's checklist tomorrow, I intend to go for DST regardless of checklist, however I am hampered by care home's refusal to allow me access to Mum's care plan and daily log to compare my notes and gain necessary information,. I have argued that this is for financial reasons which my EPA covers and that LPAs were not in existence when my parents made EPAs. Mum has lost capacity so no joy there! I have read the DST guidance and(would you believe) the Framewrok but seeing earlier commdents I don't think Mum stands a cat in H----'s chance!!
Thanks for listening.
borisa
I doubt of you can, as you say, go for the DST if your mother doesn't qualify on the checklist as the CHC assessors are the ones who organise this based on the result of the checklist.
You can though appeal of course but this will take much longer.
Sent from my iPod touch using Talking Point mobile app
You can though appeal of course but this will take much longer.
Sent from my iPod touch using Talking Point mobile app
Nitram
When you replied to Saffie saying "I agree, a diagnosis of dementia does not qualify for CHC", this could be taken two ways.
You are right that simply a diagnosis of dementia (or any other illness, in fact) does not qualify, as is made clear in the National Framework Guidelines. Obviously there is a huge range of severity of an illness and the way it affects the patient.
For this reason, CHC is based upon the health needs arising from an illness, which are measured with the Decision Support Tool under 12 health domains. A score of 1 Priority need or 2 Severes will qualify for CHC.
However, what you said is wrong if you are mean that you have to have another illness alongside dementia. If the needs arising from the dementia are severe enough, you will qualify. As an example, my father with AD gets CHC as he scored Severe in both Cognition and Behaviour. He has no other illnesses.
What I think you meant, (and what many people rightly see as unfair) is that if you don't score Severe in Behaviour, it is quite hard to get that second Severe in another domain, without having something else wrong with you (e.g. severe breathing difficulties). Not all domains even have a 'Severe' category, so a lot of the other needs arising from dementia e.g. communication, incontinence etc don't count enough.
The problem lies with the point I made in my previous posts, in that the bar for qualification for CHC is set far too high in the first place. If the NHS were following the Coughlan Judgement as they should be, other needs would count for more (just as they did with Pamela Coughlan herself), and more dementia sufferers would get the funding they deserve.
When you replied to Saffie saying "I agree, a diagnosis of dementia does not qualify for CHC", this could be taken two ways.
You are right that simply a diagnosis of dementia (or any other illness, in fact) does not qualify, as is made clear in the National Framework Guidelines. Obviously there is a huge range of severity of an illness and the way it affects the patient.
For this reason, CHC is based upon the health needs arising from an illness, which are measured with the Decision Support Tool under 12 health domains. A score of 1 Priority need or 2 Severes will qualify for CHC.
However, what you said is wrong if you are mean that you have to have another illness alongside dementia. If the needs arising from the dementia are severe enough, you will qualify. As an example, my father with AD gets CHC as he scored Severe in both Cognition and Behaviour. He has no other illnesses.
What I think you meant, (and what many people rightly see as unfair) is that if you don't score Severe in Behaviour, it is quite hard to get that second Severe in another domain, without having something else wrong with you (e.g. severe breathing difficulties). Not all domains even have a 'Severe' category, so a lot of the other needs arising from dementia e.g. communication, incontinence etc don't count enough.
The problem lies with the point I made in my previous posts, in that the bar for qualification for CHC is set far too high in the first place. If the NHS were following the Coughlan Judgement as they should be, other needs would count for more (just as they did with Pamela Coughlan herself), and more dementia sufferers would get the funding they deserve.
Nitram
Sorry - I misquoted. You said " Dementia in itself does not qualify"
Hopefully my post will make more sense now, as I contrasted whether this meant simply a diagnosis of dementia, or actually needing to have another illness alongside it in order to qualify.
Sorry - I misquoted. You said " Dementia in itself does not qualify"
Hopefully my post will make more sense now, as I contrasted whether this meant simply a diagnosis of dementia, or actually needing to have another illness alongside it in order to qualify.
Katek, nobody is denying that far too few people who warrant the CHC funding are getting it. The bar is rising every year because the NHS is in dire straits financially.
Equally that bar is not at an equal level everywhere in the UK as identical needs in one CCG will earn the funding that they won't in another.
The advisor from the AS appeals group told me that in my area it was particularly difficult
to obtain.
This subject has come up innumerable times on TP and what is being said here is that the reality of the situation differs from what should be happening and no matter what is advised on here, not everyone who thinks their relative deserves the CHC funding will get it.
That's all I wanted to say. Not to discourage anyone from applying but to do so whilst facing the possible outcome of a refusal.
I myself was told catergorically by the consultant that my husband had to go into a nursing home, straight from hospital, fully funded by the NHS CHC. The final part never happened.
I'm not going into detail now about his incapacity as it's been well reported in my past relevant posts but just to say that he had numerous medical health needs as well as severe dementia and all that entailed. The significant thing thing that was missing was violence though he could be aggressive at times.
The thing is, that this happens at a time when some of us are embroiled emotionally in our relatives' illnesses and care and are too exhausted to take on the CCG as well.
I have, at times, felt quite pressurised to do so and may yet find the willpower but it's not an easy fight to face.
Equally that bar is not at an equal level everywhere in the UK as identical needs in one CCG will earn the funding that they won't in another.
The advisor from the AS appeals group told me that in my area it was particularly difficult
to obtain.
This subject has come up innumerable times on TP and what is being said here is that the reality of the situation differs from what should be happening and no matter what is advised on here, not everyone who thinks their relative deserves the CHC funding will get it.
That's all I wanted to say. Not to discourage anyone from applying but to do so whilst facing the possible outcome of a refusal.
I myself was told catergorically by the consultant that my husband had to go into a nursing home, straight from hospital, fully funded by the NHS CHC. The final part never happened.
I'm not going into detail now about his incapacity as it's been well reported in my past relevant posts but just to say that he had numerous medical health needs as well as severe dementia and all that entailed. The significant thing thing that was missing was violence though he could be aggressive at times.
The thing is, that this happens at a time when some of us are embroiled emotionally in our relatives' illnesses and care and are too exhausted to take on the CCG as well.
I have, at times, felt quite pressurised to do so and may yet find the willpower but it's not an easy fight to face.
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It's best to get everything in writing borisa.
Also tomorrow ask if you can have a copy of the checklist.
http://www.solicitorsfortheelderly.com/assets/media/NHS_CONTINUING_HEALTHCARE_BOOK_MARCH_2014.pdf
Quote:
Argue that the former deputy or attorney is acting in the
best interests of the person by asking for such medical records in order to maximise
that person’s right to any funding that may be available, whether it be for NHS
continuing healthcare funding or the NHS funded nursing care.
It is best to make a simple request for access initially because an authority may be
willing to grant access.
17.6 What to do if access if refused
The law requires public and private interests in confidentiality to be weighed against
the public and private interests of disclosure.
It has been argued that if a carer requests access to social service or health records
on behalf of someone lacking capacity, for the purpose of bringing a potential
review on their behalf, access should be given, if there is no suggestion of harm to
any person. End quote.
Good luck.
Quoted from the other link I supplied.
8.3 Non-eligibility at the checklist stage
When a person wishes to challenge a checklist outcome they should contact the
relevant CCG, using the contact information supplied with the written decision.
They may ask for the CCG to reconsider its decision and agree to a full assessment
of eligibility (i.e. arrange for the DST to be completed).
199
The CCG should give this request prompt and due consideration, taking account all
the information available, including any additional information from the individual
or carer. The response should be given in writing, as soon as possible.
200
If the person remains dissatisfied they can ask for the matter to be considered under
the NHS complaints procedure. Details of how
to do this should also be included
with the written decision.
201
At any stage the CCG may decide that another checklist should be completed or to
undertake the full DST process.
20
Saffie - post#31
I totally agree with everything you say, including the postcode lottery element of CHC allocation. I, too, would urge people to continue to appeal if they possibly can, whilst being aware that they are unlikely to succeed. It is very difficult but unless people do appeal, the situation can only get worse.
I empathise with you about your husband as we went through the whole appeals process with my late sister who had multiple health needs, but was compliant with care. In refusing her full funding, the complexity of her needs was played down by the CCG (which we have since found out is one of the worst in the country in awarding CHC) but actually played a large part in her death aged 52.
When CHC is refused, the burden of costs - which can amount to six figure sums over the years - are borne either by the patients themselves if they have the means, or, if they don't (as was the case with my sister), by Social Services. However, Local Authorities do not have a bottomless pit of funds, so what will happen when they can no longer afford it? As more and more people in our ageing population are being affected by dementia and other illnesses, this is what really worries me. Once you have been fleeced of your life's savings, there may be no safety net from social services.
In the lead up to the election, this issue really needs to be brought up with prospective MPs.
I totally agree with everything you say, including the postcode lottery element of CHC allocation. I, too, would urge people to continue to appeal if they possibly can, whilst being aware that they are unlikely to succeed. It is very difficult but unless people do appeal, the situation can only get worse.
I empathise with you about your husband as we went through the whole appeals process with my late sister who had multiple health needs, but was compliant with care. In refusing her full funding, the complexity of her needs was played down by the CCG (which we have since found out is one of the worst in the country in awarding CHC) but actually played a large part in her death aged 52.
When CHC is refused, the burden of costs - which can amount to six figure sums over the years - are borne either by the patients themselves if they have the means, or, if they don't (as was the case with my sister), by Social Services. However, Local Authorities do not have a bottomless pit of funds, so what will happen when they can no longer afford it? As more and more people in our ageing population are being affected by dementia and other illnesses, this is what really worries me. Once you have been fleeced of your life's savings, there may be no safety net from social services.
In the lead up to the election, this issue really needs to be brought up with prospective MPs.
Checklist
Hello,
Well, survived the checklist and Mum has triggered a DST, I am advised that it may not be started for three months, but it is a stage further. I'm afraid that I can't understand this Talking Point thing at all ,so don't know if you'll even get this message. as to the main point - access to Mum's care plan and daily log at the home, I am no further, it seems they make up their own rules and I can't get anywhere, the NHS, GP's etc are no problem just the care home! I am getting a copy of the checklist. Thanks
Hello,
Well, survived the checklist and Mum has triggered a DST, I am advised that it may not be started for three months, but it is a stage further. I'm afraid that I can't understand this Talking Point thing at all ,so don't know if you'll even get this message. as to the main point - access to Mum's care plan and daily log at the home, I am no further, it seems they make up their own rules and I can't get anywhere, the NHS, GP's etc are no problem just the care home! I am getting a copy of the checklist. Thanks
Glad you have survived the checklist borisa, and at least it has triggered the DST.
but of course it's sad that your Mum has got this stage of her illness.
Don't forget to get everything from the home in writing. Then you have evidence if it comes to the point where she fails the DST and you want to challenge that decision and appeal.
I found it useful to keep a diary of all events.
Checklist date etc.
Also keep a diary of how your Mum is every time you visit her, or the care home phone you, or indeed anything and everything that effects your Mum. xxx
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Borisa...They have to arrange for a DST to be completed within 28 days of the checklist being done. Checkout The National Framework
M
They will say there is still a backlog due to the number of retrospective claimd which are ongoing. This is what I was told. My husband's was arranged for a date over 7 months after the Checklist. It was cancelled and not re-arranged before he died 2 months later. It still hasn't happened - or at least, they haven't told me about it.
CHC Funding
I have just been through the CHC assessment process for my mother who has dementia and who has lived in residential care for the past three years. During that time her, condition has really deteriorated resulting in her needing much more help and support from the amazing staff. She now needs 2 staff to see to her as she can't walk so has to be hoisted, has to be turned regularly to avoid pressure sores breaking out, can hardly talk, is doubly incontinent and has to be fed soft food. She had a pace maker fitted some years ago and over the years has had a number of TIA's. Because she is currently "stable" and according to the assessor, is actually "a well woman" (!!), funding was refused. The NHS "get out clause" seems to be the difference between "nursing" and "caring". When we had sat through the discussion about how she scored on each of the domains, on which she scored highly in some, the assessor (who has never clapped eyes on my mother) asked if she had any underlying health needs. If this had been the first question instead of the last, we could all have saved ourselves a couple of hours! I am convinced that the assesor had already made the decision right at the beginning of the meeting after pouring over my mother's comprehensive care file before the meeting began. We really have to do something about this situation in light of the growing numbers of people who are developing this horrendous disease.
I have just been through the CHC assessment process for my mother who has dementia and who has lived in residential care for the past three years. During that time her, condition has really deteriorated resulting in her needing much more help and support from the amazing staff. She now needs 2 staff to see to her as she can't walk so has to be hoisted, has to be turned regularly to avoid pressure sores breaking out, can hardly talk, is doubly incontinent and has to be fed soft food. She had a pace maker fitted some years ago and over the years has had a number of TIA's. Because she is currently "stable" and according to the assessor, is actually "a well woman" (!!), funding was refused. The NHS "get out clause" seems to be the difference between "nursing" and "caring". When we had sat through the discussion about how she scored on each of the domains, on which she scored highly in some, the assessor (who has never clapped eyes on my mother) asked if she had any underlying health needs. If this had been the first question instead of the last, we could all have saved ourselves a couple of hours! I am convinced that the assesor had already made the decision right at the beginning of the meeting after pouring over my mother's comprehensive care file before the meeting began. We really have to do something about this situation in light of the growing numbers of people who are developing this horrendous disease.
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