Many thanks Dottyd, yes we have an EPA.
Just watched video, very interesting and helpful, thank you.
CHC (Continuing Healthcare) support thread
- Thread starter stanleypj
- Start date
Many thanks Dottyd, yes we have an EPA.
Just watched video, very interesting and helpful, thank you.
Yes, I must admit I am confused. When we hear anything I will keep you posted, thank you
Parliamentary & Health Service Ombudsman
The Department of Health’s National Framework (and the various amendments to it) has been in place since 2007. There appear to have been no published decided cases, or announcements, from the Parliamentary & Health Service Ombudsman (“PHSO”) on the shortcomings in the National Framework and its interpretation by MDTs/CCG’s following the National Framework’s implementation.
Why is that?
Has everything, as if by magic, become perfect since 2007? is it now the case that only a very few "extremely borderline" decisions of MDTs/CCGs have been reviewed/complained about since 2007 because the National Framework is a perfectly worded document whose interpretation by MDTs/CCGs is always in compliance with the law?
The Pointon case (which looked at the shortcomings in local NHSCHC eligibility criteria and decision making) is useful, but it predates the National Framework. Wouldn’t it be far more helpful to have guidance about whether the National Framework is Couglan compliant and whether the National Framework is being fairly, consistently and legally applied by MDTs/CCGs?
I understand why candidates for NHSCHC choose not to ask Her Majesty’s judges to tell us (and the NHS and Social Services) what the law is and how the Department of Health’s so called guidance should be interpreted in light of the law, but it feels like the PHSO has offered no guidance at all since 2003 when Pointon was published by the PHSO.
The Department of Health’s National Framework (and the various amendments to it) has been in place since 2007. There appear to have been no published decided cases, or announcements, from the Parliamentary & Health Service Ombudsman (“PHSO”) on the shortcomings in the National Framework and its interpretation by MDTs/CCG’s following the National Framework’s implementation.
Why is that?
Has everything, as if by magic, become perfect since 2007? is it now the case that only a very few "extremely borderline" decisions of MDTs/CCGs have been reviewed/complained about since 2007 because the National Framework is a perfectly worded document whose interpretation by MDTs/CCGs is always in compliance with the law?
The Pointon case (which looked at the shortcomings in local NHSCHC eligibility criteria and decision making) is useful, but it predates the National Framework. Wouldn’t it be far more helpful to have guidance about whether the National Framework is Couglan compliant and whether the National Framework is being fairly, consistently and legally applied by MDTs/CCGs?
I understand why candidates for NHSCHC choose not to ask Her Majesty’s judges to tell us (and the NHS and Social Services) what the law is and how the Department of Health’s so called guidance should be interpreted in light of the law, but it feels like the PHSO has offered no guidance at all since 2003 when Pointon was published by the PHSO.
Back in January I attended a full assessment for my mother, which has led to the NHS paying for her care entirely (at least for the next couple of months when another review is due to take place).
Where I am, the district nurse came from the Continuing Care Team, which I understand from reading more here is the same as CHC or just part of it. She had only met my mum for the first time, and for only 10 minutes, just before the meeting but had read reports and spoken to the care home and social services and understood the difficulties of the case.
We were told that the report would be written up and presented to the CCG, who would decide on whether or not full funding would be provided. It was imperative that the care home staff were there at the assessment, as they were the ones dealing with mum 24/7 and knew her habits and behaviour better than anyone else, even perhaps my father and I (although, I haven't lived with my parents some time and expect my father didn't let on the full extent of what happened at home, but that's another story).
By the sounds of things, we may have been quite fortunate then compared to others going through the same situation. As things stand, my mum has been moved to a nursing home and everything is being paid by the CCG / NHS, so we don't have to worry about (the already dwindling) family finances.
It's such an alien and unknown thing to have to deal with social services, CCG, CHC etc - but have to say that without it we'd be in a pretty mess I imagine.
Where I am, the district nurse came from the Continuing Care Team, which I understand from reading more here is the same as CHC or just part of it. She had only met my mum for the first time, and for only 10 minutes, just before the meeting but had read reports and spoken to the care home and social services and understood the difficulties of the case.
We were told that the report would be written up and presented to the CCG, who would decide on whether or not full funding would be provided. It was imperative that the care home staff were there at the assessment, as they were the ones dealing with mum 24/7 and knew her habits and behaviour better than anyone else, even perhaps my father and I (although, I haven't lived with my parents some time and expect my father didn't let on the full extent of what happened at home, but that's another story).
By the sounds of things, we may have been quite fortunate then compared to others going through the same situation. As things stand, my mum has been moved to a nursing home and everything is being paid by the CCG / NHS, so we don't have to worry about (the already dwindling) family finances.
It's such an alien and unknown thing to have to deal with social services, CCG, CHC etc - but have to say that without it we'd be in a pretty mess I imagine.
Prof Luke Clements video
My take on this video (there have been links posted recently in this thread) was that it was saying that the DST framework (and the criteria for getting CHC such as one priority, two severes etc) is, not a definitive/proper method, in law, to ascertain qualification for CHC. An example is given to demonstrate this, namely that Pamela Coughlan would have fallen far short of the criteria.
My question is: this is very interesting, but how can we use this? The reality is that the CHC assessment process does work according to the framework, with scoring of the domains etc... So is the (albeit interesting) info in the video of purely academic interest?
My take on this video (there have been links posted recently in this thread) was that it was saying that the DST framework (and the criteria for getting CHC such as one priority, two severes etc) is, not a definitive/proper method, in law, to ascertain qualification for CHC. An example is given to demonstrate this, namely that Pamela Coughlan would have fallen far short of the criteria.
My question is: this is very interesting, but how can we use this? The reality is that the CHC assessment process does work according to the framework, with scoring of the domains etc... So is the (albeit interesting) info in the video of purely academic interest?
It's interesting and useful in various ways. People who have the means have employed lawyers (including Luke Clements I think) to argue using the various points that the lecture spells out and they have often been successful. The framework doesn't have the force of law, as he points out. Ultimately the legislation and case law trump the framework.
It's also important for anyone supporting a person who is being CHC assessed to know things like, for example, 'a well managed need is still a need', the concept of a decision needing to be 'Coughlan compliant' and the fact that CHC can be delivered in any 'setting'.
At a very basic level, all sorts of things that Clements discusses help people to understand a little bit more about what is actually happening.
And I wouldn't mind betting that many involved in carrying out CHC assessments become a little less secure when they come up against someone who knows even a bit about the history of CHC funding, the relevant legislation and case law, and the shortcomings of the current process in many areas.
Knowledge is power.
It's also important for anyone supporting a person who is being CHC assessed to know things like, for example, 'a well managed need is still a need', the concept of a decision needing to be 'Coughlan compliant' and the fact that CHC can be delivered in any 'setting'.
At a very basic level, all sorts of things that Clements discusses help people to understand a little bit more about what is actually happening.
And I wouldn't mind betting that many involved in carrying out CHC assessments become a little less secure when they come up against someone who knows even a bit about the history of CHC funding, the relevant legislation and case law, and the shortcomings of the current process in many areas.
Knowledge is power.
Last edited:
Stanley, thanks for the thoughtful reply and the cogent points you made.
One question I wonder about is: when mounting an appeal, should one argue within the context of the framework, e.g. arguing that a certain domain's scores should be uprated... or should one argue that the whole framework has no legal basis and thus dismiss the relevance of the scores given and argue more from a viewpoint based on first principles/fundamentals. My gut feel is that one should certainly do the former (uprating scores) but I'm not sure whether the latter would gain much traction, as the reality is that this is the framework the CHC assessors have to work within. Perhaps, as you say, lawyers could help with this, if & when an appeal process has reached a certain stage.
I have heard of the concept that 'a well managed need is still a need'. However, the DST framework explicitly uses the concept of how well managed the need is, when assigning scores to domains (e.g. under Behaviour, you'd get a High if 'compliance is usually responsive to planned interventions', but you'd get a Severe if 'behaviour requires a response outside the range of planned interventions' etc).
...Therefore the whole DST framework seems brazenly to ignore the concept of 'a well managed need is still a need' - so I'm left wondering how one could argue effectively from that standpoint. Perhaps again it would be something that specialist lawyers could help with at the more advanced stages of an appeal.
Anyway, I did find Prof Clements' video absolutely fascinating, and a real eye opener. I was just wondering about the practicalities of using some of his points when mounting an appeal.
Thanks again
James
One question I wonder about is: when mounting an appeal, should one argue within the context of the framework, e.g. arguing that a certain domain's scores should be uprated... or should one argue that the whole framework has no legal basis and thus dismiss the relevance of the scores given and argue more from a viewpoint based on first principles/fundamentals. My gut feel is that one should certainly do the former (uprating scores) but I'm not sure whether the latter would gain much traction, as the reality is that this is the framework the CHC assessors have to work within. Perhaps, as you say, lawyers could help with this, if & when an appeal process has reached a certain stage.
I have heard of the concept that 'a well managed need is still a need'. However, the DST framework explicitly uses the concept of how well managed the need is, when assigning scores to domains (e.g. under Behaviour, you'd get a High if 'compliance is usually responsive to planned interventions', but you'd get a Severe if 'behaviour requires a response outside the range of planned interventions' etc).
...Therefore the whole DST framework seems brazenly to ignore the concept of 'a well managed need is still a need' - so I'm left wondering how one could argue effectively from that standpoint. Perhaps again it would be something that specialist lawyers could help with at the more advanced stages of an appeal.
Anyway, I did find Prof Clements' video absolutely fascinating, and a real eye opener. I was just wondering about the practicalities of using some of his points when mounting an appeal.
Thanks again
James
Thanks James. I'm no expert but I would focus on the domain scores whilst also carefully analysing the four characteristics that the panel are required to consider before making their recommendation - Nature, Intensity, Complexity, Unpredictability. Panels are sometimes suspected of using these characteristics negatively (i.e. as additional grounds for rejection) but they can also be used positively as this paragraph that follows the definitions of the characteristics possibly suggests:
Each of these characteristics may, in combination or alone, demonstrate a primary health need, because of the quality and/or quantity of care required to meet the individual’s needs.
As you suggest, it seems unlikely that questioning the framework, as your main strategy, will have a positive effect but I would take every opportunity to make clear that there are reasons for thinking that it has acquired far too much importance.
In the example you give re well-managed need the score is still 'high'. I think the principle is more likely to have an effect where the score in a domain is being scored much too low because the need is being well-managed.
I'm not advocating paying lawyers but simply pointing out that when decisions are challenged by lawyers they are often overturned so decisions may be more shaky than people perhaps realise. I should also make clear that I have no experience of appeals and my personal knowledge of the CHC process has mostly been acquired from going through it on my wife's behalf.
Each of these characteristics may, in combination or alone, demonstrate a primary health need, because of the quality and/or quantity of care required to meet the individual’s needs.
As you suggest, it seems unlikely that questioning the framework, as your main strategy, will have a positive effect but I would take every opportunity to make clear that there are reasons for thinking that it has acquired far too much importance.
In the example you give re well-managed need the score is still 'high'. I think the principle is more likely to have an effect where the score in a domain is being scored much too low because the need is being well-managed.
I'm not advocating paying lawyers but simply pointing out that when decisions are challenged by lawyers they are often overturned so decisions may be more shaky than people perhaps realise. I should also make clear that I have no experience of appeals and my personal knowledge of the CHC process has mostly been acquired from going through it on my wife's behalf.
Got it!
Heard yesterday that mum has got the nhs continuing health care, it's such a relief, we all feel mentally drained and elated at the sametime. Looking forward to getting mum out of hospital and into a nursing home where she can receive better care and hopefully have a much better quality of life. Thank you to Talking Point, reading the posts has really helped and we will continue to read them. Good luck to everyone who is trying to get CHC for their relative, try to stay positive, don't give up!
Heard yesterday that mum has got the nhs continuing health care, it's such a relief, we all feel mentally drained and elated at the sametime. Looking forward to getting mum out of hospital and into a nursing home where she can receive better care and hopefully have a much better quality of life. Thank you to Talking Point, reading the posts has really helped and we will continue to read them. Good luck to everyone who is trying to get CHC for their relative, try to stay positive, don't give up!
Banging our heads against a wall....
Well the CHC saga is still ongoing. Backstory is that mum was discharged from hospital at Xmas on 'end of life' we asked for a CHC assessment to be carried out in the hospital but we were told that it would delay her discharge so to pursue it when she got back to the CH. We did so asked for an assessment on mum who was now significantly worse than she was before she was in hospital. The Nursing checklist was carried out in January and we were shocked when we got a copy - it's was so, so incorrect in many of the domains - it was someone that I didn't recognise as being mum.
We challenged the scores and we were told by the CH that maybe the LHB assessor had seen the wrong person! The CH couldn't tell us who had accompanied the assessor - also their care notes seemed to be rewritten to suit afterwards.
We demanded that the checklist be redone by another assessor and today it has been. Actually the full checklist has not been carried out - just a review. I only found out it had been done as I phoned the SW for an update on the date for a DST. Again they have carried out the checklist without a member of the family present!
Again, because the CH hasn't kept detailed records, mum has scored no needs for behaviour. This is a lady who permanently has faeces under her finger nails because she is resistant to having them cleaned. She won't let anyone touch her legs or feet, she is resistant to having her pads changed and will shout and scream if she takes the mood to. It's all very unpredictable as some days she may be ok. It can take hours for carers to see to her as up they have to keep disappearing and coming back in so she has forgotten that they've tried.
Cognition, the max she can score is high - no severe available (Wales checklist) she scored high. Looking at the Welsh DST online though there is a severe box available. How can this be? Surely this is a huge area where you are likely to fail on?
Mental health - no needs? How? She is completely withdrawn and cannot verbalise and thoughts, cannot have a say in any of her care and cannot take part in any activities whatsoever.
Communication - she scored high again - no severe available.
Mobility she scored moderate. She is immobile, hoisted from bed to chair. Surely this should be high??
Nutrition she scored high - we agree
Continence is moderate - she is doubly incontinent. We agree.
Skin - she scored low. She is nursed on an airflow mattress and turned every 2 hours. She sits out in a special pressure chair - surely this should be moderate
Breathing - no needs - agree
Drug therapy - low - agree
Altered states of consciousness - no needs despite mum often being completely in a trance that we have to snap her out of.
I called the LHB assessor and said I was very unhappy that the checklist had been carried out again without us there. She was very sympathetic but stuck to her guns regarding the scores. When I compare them to the descriptions on the DST Though they are wrong! Again!
How much leeway to change these scores will be allowed at the DST meeting? The meeting will have the LHB assessor, the social worker, a care home worker and us there.
How can we get them to listen to us? So frustrated again, I understand that mum may not score the two severes but she shoud score more highs which just may help to tip the balance in our favour.
Any advice? We feel like giving up already.
Well the CHC saga is still ongoing. Backstory is that mum was discharged from hospital at Xmas on 'end of life' we asked for a CHC assessment to be carried out in the hospital but we were told that it would delay her discharge so to pursue it when she got back to the CH. We did so asked for an assessment on mum who was now significantly worse than she was before she was in hospital. The Nursing checklist was carried out in January and we were shocked when we got a copy - it's was so, so incorrect in many of the domains - it was someone that I didn't recognise as being mum.
We challenged the scores and we were told by the CH that maybe the LHB assessor had seen the wrong person! The CH couldn't tell us who had accompanied the assessor - also their care notes seemed to be rewritten to suit afterwards.
We demanded that the checklist be redone by another assessor and today it has been. Actually the full checklist has not been carried out - just a review. I only found out it had been done as I phoned the SW for an update on the date for a DST. Again they have carried out the checklist without a member of the family present!
Again, because the CH hasn't kept detailed records, mum has scored no needs for behaviour. This is a lady who permanently has faeces under her finger nails because she is resistant to having them cleaned. She won't let anyone touch her legs or feet, she is resistant to having her pads changed and will shout and scream if she takes the mood to. It's all very unpredictable as some days she may be ok. It can take hours for carers to see to her as up they have to keep disappearing and coming back in so she has forgotten that they've tried.
Cognition, the max she can score is high - no severe available (Wales checklist) she scored high. Looking at the Welsh DST online though there is a severe box available. How can this be? Surely this is a huge area where you are likely to fail on?
Mental health - no needs? How? She is completely withdrawn and cannot verbalise and thoughts, cannot have a say in any of her care and cannot take part in any activities whatsoever.
Communication - she scored high again - no severe available.
Mobility she scored moderate. She is immobile, hoisted from bed to chair. Surely this should be high??
Nutrition she scored high - we agree
Continence is moderate - she is doubly incontinent. We agree.
Skin - she scored low. She is nursed on an airflow mattress and turned every 2 hours. She sits out in a special pressure chair - surely this should be moderate
Breathing - no needs - agree
Drug therapy - low - agree
Altered states of consciousness - no needs despite mum often being completely in a trance that we have to snap her out of.
I called the LHB assessor and said I was very unhappy that the checklist had been carried out again without us there. She was very sympathetic but stuck to her guns regarding the scores. When I compare them to the descriptions on the DST Though they are wrong! Again!
How much leeway to change these scores will be allowed at the DST meeting? The meeting will have the LHB assessor, the social worker, a care home worker and us there.
How can we get them to listen to us? So frustrated again, I understand that mum may not score the two severes but she shoud score more highs which just may help to tip the balance in our favour.
Any advice? We feel like giving up already.
Sorry to hear this. Whatever you do, don't give up!
If the second checklist exercise (it sounds very different from the English checklist) was a review of the first, did anything actually change?
It's very important that you continue to challenge the fact that as family you are being ignored. I would continue to press them about this and try to ensure that you are present at the DST meeting.
If the second checklist exercise (it sounds very different from the English checklist) was a review of the first, did anything actually change?
It's very important that you continue to challenge the fact that as family you are being ignored. I would continue to press them about this and try to ensure that you are present at the DST meeting.
Yes, there were a few changes to the scores, some up, some down. I guess it's the different LHB assessor with different opinions.
We will be there at the DST Meetjng but I fear that everything we say they have an answer to.
I phoned the LHB assessor today about this checklist and said about managed needs still being needs. She said, yes, but if they are managed by careful nursing (FNC) which mum gets then that's what matters....
Like I say, banging our heads against walls. They have an answer for everything.
We will be there at the DST Meetjng but I fear that everything we say they have an answer to.
I phoned the LHB assessor today about this checklist and said about managed needs still being needs. She said, yes, but if they are managed by careful nursing (FNC) which mum gets then that's what matters....
Like I say, banging our heads against walls. They have an answer for everything.
If I was you I would complain strongly to the care home about the lack of detailed records, and try and get them improved before the meeting If they recorded things properly, there should be enough evidence for the proper scores in the domains.
Also, at the DST meeting for my husband, the CHC person questioned the severity of my husbands behaviour, and the nurse at the meeting was given permission to call in another nurse to back her up and describe his behaviour. Make sure the care home has a representative at the meeting who is most familiar with your mums needs, cognition and behaviour.
I wish you the best of luck . Its scandalous that people with dementia dont automatically get the funding they would get if they had any other illness.
Also, at the DST meeting for my husband, the CHC person questioned the severity of my husbands behaviour, and the nurse at the meeting was given permission to call in another nurse to back her up and describe his behaviour. Make sure the care home has a representative at the meeting who is most familiar with your mums needs, cognition and behaviour.
I wish you the best of luck . Its scandalous that people with dementia dont automatically get the funding they would get if they had any other illness.
I think you actually need to bring in the heavy guns on this - and to do so ASAP.
If you haven't already done so, please take advantage of the free 90 minute expert advice session the Beacon Healthcare (social enterprise organisation) offers to find out from them the full extent of the "process" and other errors that have been made so far. I'm only suggesting BHC because I've had personal experience of them - I'm sure there must be equally good alternatives.
Please also give thought to the value of being represented by BHC or one of the other organisations (specialised legal practices, Care To Be Different, etc) at subsequent meetings involving CHC.
My (uninformed) view is that currently these assessors are in breach of so many of the guidelines they'll have to put aside everything done to date and start from scratch.
If you haven't already done so, please take advantage of the free 90 minute expert advice session the Beacon Healthcare (social enterprise organisation) offers to find out from them the full extent of the "process" and other errors that have been made so far. I'm only suggesting BHC because I've had personal experience of them - I'm sure there must be equally good alternatives.
Please also give thought to the value of being represented by BHC or one of the other organisations (specialised legal practices, Care To Be Different, etc) at subsequent meetings involving CHC.
My (uninformed) view is that currently these assessors are in breach of so many of the guidelines they'll have to put aside everything done to date and start from scratch.
I've just found this link here which describes how the DST in Wales was changed in 2014 to be the same as England.
http://www.hughjames.com/news/comme...ork-continuing-healthcare-wales/#.VuENr4iQGrU
The checklist that was carried out yesterday only had cognition able to go to high but the DST should now be able to go to severe! Are they using the wrong checklist still?
Curiouser and curiouser!
http://www.hughjames.com/news/comme...ork-continuing-healthcare-wales/#.VuENr4iQGrU
The checklist that was carried out yesterday only had cognition able to go to high but the DST should now be able to go to severe! Are they using the wrong checklist still?
Curiouser and curiouser!
If Wales is supposed to be using the 'English' checklist, there are no high or severe classifications. The scoring is A, B, or C for each domain and that's it. The scoring is quite different from the DST scoring.
No, reading it further it appears there is no checklist for Wales at all. Everyone undergoes a full DST. I don't think they are following the correct process.
We are having an MDT meeting in April to go through the DST but what bugs me is that this nursing checklist that has been done will form the basis of the DST.
I'm not sure whether to keep like a dog at a bone to the LHB about all these things or sit tight and bring it all up at the MDT meeting. The trouble is even though I understand the process and domains and how I feel they should be scored whenever I speak with anyone at the LHB they manage to shower me with jargon and a hundred reasons why mum should be scored what they have. Like I say, they have an answer for everything.
We are having an MDT meeting in April to go through the DST but what bugs me is that this nursing checklist that has been done will form the basis of the DST.
I'm not sure whether to keep like a dog at a bone to the LHB about all these things or sit tight and bring it all up at the MDT meeting. The trouble is even though I understand the process and domains and how I feel they should be scored whenever I speak with anyone at the LHB they manage to shower me with jargon and a hundred reasons why mum should be scored what they have. Like I say, they have an answer for everything.
