CONTINUING CARE REFUSED TODAY FOR MUM

ChrissieM

Registered User
Jan 9, 2021
34
0
My brother and I spent two hours today going through the process by Zoom, with a negative outcome. In attendance was the care home manager, NHS clinician , social worker and community nurse My brother is convinced that the decision was made in advance `and they`re all in it together`. I`d like to think that it was totally a professional decision but does anyone else feel like it was `a done deal` before the professionals even go through the process.? Mum is permanently catheterised and it presents on-going issues with her having to have twice weekly bladder washes . It often by-passes making her incontinent and also bowel incontinence occurs from time to time; she has part of a catheter lodged inside her (it has broken off) and two bladder stones. She is liable to have infections due to these `foreign bodies` (but none recently) and we have been advised that she may get sepsis unless they are removed. However in view of her frailty my brother and I are reluctant to go down the operation route and Mum has made it clear she does not want an operation . She can only walk five steps and is 99% of the time is in a wheelchair; she has two forms of dementia but so far only short term memory loss; needs help with all personal aspects of her care. She needs occasional assistance with cutting up her food and can only drink out of a two handled beaker . In the summing up it was stressed that the management of her catheter was being provided by the nursing team and care home staff and that need was being addressed. I thought the assessment focused on nursing needs regardless of who was supplying them to show that she had a `need`. for the purpose of the assessment. They also seemed to concentrate on the fact she had no behavioural issues. I`m not sure if it is even worth going down the appeal route. I would welcome anyone else`s recent experience of the process
 

kindred

Registered User
Apr 8, 2018
2,739
0
My brother and I spent two hours today going through the process by Zoom, with a negative outcome. In attendance was the care home manager, NHS clinician , social worker and community nurse My brother is convinced that the decision was made in advance `and they`re all in it together`. I`d like to think that it was totally a professional decision but does anyone else feel like it was `a done deal` before the professionals even go through the process.? Mum is permanently catheterised and it presents on-going issues with her having to have twice weekly bladder washes . It often by-passes making her incontinent and also bowel incontinence occurs from time to time; she has part of a catheter lodged inside her (it has broken off) and two bladder stones. She is liable to have infections due to these `foreign bodies` (but none recently) and we have been advised that she may get sepsis unless they are removed. However in view of her frailty my brother and I are reluctant to go down the operation route and Mum has made it clear she does not want an operation . She can only walk five steps and is 99% of the time is in a wheelchair; she has two forms of dementia but so far only short term memory loss; needs help with all personal aspects of her care. She needs occasional assistance with cutting up her food and can only drink out of a two handled beaker . In the summing up it was stressed that the management of her catheter was being provided by the nursing team and care home staff and that need was being addressed. I thought the assessment focused on nursing needs regardless of who was supplying them to show that she had a `need`. for the purpose of the assessment. They also seemed to concentrate on the fact she had no behavioural issues. I`m not sure if it is even worth going down the appeal route. I would welcome anyone else`s recent experience of the process
I was awarded CHC for my husband three days after he died! The fact that your mum could eat on her own with assistance would have lowered her points. My husband had no behavoral issues because it was like he was in a coma. But he did have differing levels of consciousness which seemed to score. Again, the fact your mum can even walk a few steps will have lowered her points. And if she is able to communicate at all it will have reduced points .,,
I know, I do sympathise, the whole thing is demeaning, mean and grotesque. warmest, Kindred
 

mowood

Registered User
Dec 27, 2009
378
0
West Yorkshire
Hello ChrissieM,
My experience of CHC funding was a number of years ago but have to say my opinion of the process is exactly the same as your brother's.
During our application meeting for CHC, the meaning of the eye contact between the two main protagonists throughout the meeting was obvious, it had been decided beforehand. I suggested this to them and of course they denied it, along with our application. After the meeting I requested sight of the original notes made at the meeting and would you believe it.......they'd been destroyed!
I have nothing but contempt for these so called health professionals who do their master's bidding at the expense of sick, vulnerable people.
The whole system of CHC funding is a national disgrace. Unfortunately it doesn't look as though things will change anytime soon.

P.s. The decision was overturned on appeal and CHC funding was given only to be withdrawn some months later. Another appeal launched but my lovely mum died before we received the decision. I was left feeling grubby and disgusted with the whole process.
 

jaymor

Volunteer Moderator
Jul 14, 2006
14,197
0
England
My brother and I spent two hours today going through the process by Zoom, with a negative outcome. In attendance was the care home manager, NHS clinician , social worker and community nurse My brother is convinced that the decision was made in advance `and they`re all in it together`. I`d like to think that it was totally a professional decision but does anyone else feel like it was `a done deal` before the professionals even go through the process.? Mum is permanently catheterised and it presents on-going issues with her having to have twice weekly bladder washes . It often by-passes making her incontinent and also bowel incontinence occurs from time to time; she has part of a catheter lodged inside her (it has broken off) and two bladder stones. She is liable to have infections due to these `foreign bodies` (but none recently) and we have been advised that she may get sepsis unless they are removed. However in view of her frailty my brother and I are reluctant to go down the operation route and Mum has made it clear she does not want an operation . She can only walk five steps and is 99% of the time is in a wheelchair; she has two forms of dementia but so far only short term memory loss; needs help with all personal aspects of her care. She needs occasional assistance with cutting up her food and can only drink out of a two handled beaker . In the summing up it was stressed that the management of her catheter was being provided by the nursing team and care home staff and that need was being addressed. I thought the assessment focused on nursing needs regardless of who was supplying them to show that she had a `need`. for the purpose of the assessment. They also seemed to concentrate on the fact she had no behavioural issues. I`m not sure if it is even worth going down the appeal route. I would welcome anyone else`s recent experience of the process

Have you been told your Mum will be awarded Funded Nursing Care?
 

canary

Registered User
Feb 25, 2014
15,550
0
South coast
Unfortunately, the bar for CHC is set incredibly high and most of the problems that beset a person with dementia (loss of mobility, incontinence, help required for personal care, assistance in feeding etc etc) are all considered social needs rather than primary health needs and therefore dont count.

The Government Decision support tool is here. It is long, but makes interesting reading

This outlines how to make the decisions, the 12 different domains looked at and how they are scored - the scoring is looked at in more detail from page 16 onwards. The emphasis is on intensity, complexity and unpredictability of need. To get CHC you need one priority level, or two severe levels, or one severe level with several other high levels. Using this tool, you may be able to see where points have been lost and whether there is any grounds for appeal.

Realistically, though, unless there are other health problems, the person with dementia is only likely to be awarded CHC if there are extreme and unpredictable behavioural problems, or that person is at End of Life, although you may get awarded Funding Nursing Care, which is the nursing portion of CHC. Whether this is fair or not, is, of course, a completely different discussion.
 

ChrissieM

Registered User
Jan 9, 2021
34
0
Hello ChrissieM,
My experience of CHC funding was a number of years ago but have to say my opinion of the process is exactly the same as your brother's.
During our application meeting for CHC, the meaning of the eye contact between the two main protagonists throughout the meeting was obvious, it had been decided beforehand. I suggested this to them and of course they denied it, along with our application. After the meeting I requested sight of the original notes made at the meeting and would you believe it.......they'd been destroyed!
I have nothing but contempt for these so called health professionals who do their master's bidding at the expense of sick, vulnerable people.
The whole system of CHC funding is a national disgrace. Unfortunately it doesn't look as though things will change anytime soon.

P.s. The decision was overturned on appeal and CHC funding was given only to be withdrawn some months later. Another appeal launched but my lovely mum died before we received the decision. I was left feeling grubby and disgusted with the whole process.
Hello ChrissieM,
My experience of CHC funding was a number of years ago but have to say my opinion of the process is exactly the same as your brother's.
During our application meeting for CHC, the meaning of the eye contact between the two main protagonists throughout the meeting was obvious, it had been decided beforehand. I suggested this to them and of course they denied it, along with our application. After the meeting I requested sight of the original notes made at the meeting and would you believe it.......they'd been destroyed!
I have nothing but contempt for these so called health professionals who do their master's bidding at the expense of sick, vulnerable people.
The whole system of CHC funding is a national disgrace. Unfortunately it doesn't look as though things will change anytime soon.

P.s. The decision was overturned on appeal and CHC funding was given only to be withdrawn some months later. Another appeal launched but my lovely mum died before we received the decision. I was left feeling grubby and disgusted with the whole process.
Mo - The whole social care system needs to be badly overhauled but can`t see it happening during Mum`s lifetime. My parents bought a very cheap property subject to a mortgage (so the building society got their slice of the cake through interest charges) and now my mother is having to pay for her care through the sale proceeds of her house, and basically propping up a failed health care system - thus the Government are getting the remaining part of the cake. Living a very frugal life on a low income, working hard and never getting into debt and not claiming any benefits during their active working lives was a complete waste of my parents time and energy.
 

MartinWL

Registered User
Jun 12, 2020
1,014
0
I went through the process too, and was turned down. I knew the bar was too high, so was not really expecting to get it. It isn't really rational. If I woke up tomorrow morning and found that I could not walk I would of course call a doctor not a carer, something would be medically wrong with me. But in the CHC process inability to get out of a chair without help is a social need not a medical one. The rule of thumb is that if carers can give the person the help they need, you don't get CHC. You only get it if qualified nurses are necessary. It makes for something of a lottery as you are better off financially if by chance you physical incapacity is caused by something that needs a qualified nurse to attend to regularly.
 

ChrissieM

Registered User
Jan 9, 2021
34
0
I went through the process too, and was turned down. I knew the bar was too high, so was not really expecting to get it. It isn't really rational. If I woke up tomorrow morning and found that I could not walk I would of course call a doctor not a carer, something would be medically wrong with me. But in the CHC process inability to get out of a chair without help is a social need not a medical one. The rule of thumb is that if carers can give the person the help they need, you don't get CHC. You only get it if qualified nurses are necessary. It makes for something of a lottery as you are better off financially if by chance you physical incapacity is caused by something that needs a qualified nurse to attend to regularly.
Thanks for this Martin. Mum is needing the help of qualified nurses twice a week to reduce the risk of infections. This was rated `Severe` in the assessment but she needed 2 x `Severes` or other scorings to hit the jackpot as presumably her other needs are being met by the care staff. However there also appears to be an emphasis on `behaviour` which can trigger a higher score if severe enough but presumably that is something that can be addressed by carers. Therefore the rationale behind the scoring is somewhat mystifying to me
 

nitram

Registered User
Apr 6, 2011
23,220
0
North Manchester

Palerider

Registered User
Aug 9, 2015
2,697
0
North West
Hi @ChrissieM -an interesting encounter with CHC. My mum was awarded CHC funding last year with no issue, but at the end of lockdown when the funding was up for review for the next financial year, mums CHC funding was reviewed and taken away. This all happened very quickly, because I was told by the CHC assessor the deadline was 30th March and they had to meet it. The whole process felt as though it was predetermined and the assessor did not include me as mums LPA, I had to make enquiries on my own, and they had even got my and mums surname wrong, which does not exact much confidence in the system.

I have since consulted two solicitors on this matter and one firm I have instrcuted to take on mums case. In both of those disucssions by solicitors who deal in this they both maintained there was a seperate agenda. Contrary to what people believe, the DST is highly subjective and often used as a tick box exercise with no professional consideration of the facts by these panels, they make assumptions from limited narratives and don't consider the worse case scenario. Many are sub-contracted companies that obviously wish to please their contractor in not awarding CHC funding. Mums assessors belonged to such a company and I have to say they were rude, obstructive and limited any flow of information.

Many poeple are not aware that there has been widespread critiscm of the CHC process and since 2015 its clear there has been a move to cut funding. This has been under the media spotlight for years and currebtly there is a legal challenge going through for judicial review, Even the NHS recognises there is a risk of legal action. In 2018, the head of CHC policy endorsed a report, stating:

“The NHS may become open to Judicial Review and severe reputational damage.”


I would strongly advise you challenge this decision, @Shedrech has given a good advisory group, which is free and experienced

I decided to use a legal firm which is expensive but they work soley on CHC cases
 

ChrissieM

Registered User
Jan 9, 2021
34
0
Hi @ChrissieM -an interesting encounter with CHC. My mum was awarded CHC funding last year with no issue, but at the end of lockdown when the funding was up for review for the next financial year, mums CHC funding was reviewed and taken away. This all happened very quickly, because I was told by the CHC assessor the deadline was 30th March and they had to meet it. The whole process felt as though it was predetermined and the assessor did not include me as mums LPA, I had to make enquiries on my own, and they had even got my and mums surname wrong, which does not exact much confidence in the system.

I have since consulted two solicitors on this matter and one firm I have instrcuted to take on mums case. In both of those disucssions by solicitors who deal in this they both maintained there was a seperate agenda. Contrary to what people believe, the DST is highly subjective and often used as a tick box exercise with no professional consideration of the facts by these panels, they make assumptions from limited narratives and don't consider the worse case scenario. Many are sub-contracted companies that obviously wish to please their contractor in not awarding CHC funding. Mums assessors belonged to such a company and I have to say they were rude, obstructive and limited any flow of information.

Many poeple are not aware that there has been widespread critiscm of the CHC process and since 2015 its clear there has been a move to cut funding. This has been under the media spotlight for years and currebtly there is a legal challenge going through for judicial review, Even the NHS recognises there is a risk of legal action. In 2018, the head of CHC policy endorsed a report, stating:

“The NHS may become open to Judicial Review and severe reputational damage.”


I would strongly advise you challenge this decision, @Shedrech has given a good advisory group, which is free and experienced

I decided to use a legal firm which is expensive but they work soley on CHC cases
Hi Palerider - Thanks for the advice. The more I think about the assessment the more incensed I become. However the situation is ridiculous in that even if you strike lucky and get awarded the money there`s always the possibility that it could be taken away. I despair with the whole process and am seriously considering going down the legal route, following your advice.
 

Palerider

Registered User
Aug 9, 2015
2,697
0
North West
Hi Palerider - Thanks for the advice. The more I think about the assessment the more incensed I become. However the situation is ridiculous in that even if you strike lucky and get awarded the money there`s always the possibility that it could be taken away. I despair with the whole process and am seriously considering going down the legal route, following your advice.
I think you need to look at the DST before spending money on legal firms. You need to be sure in your own mind that your own assessment is valid and worth pursuing, if you feel that your mum scores on the DST, then the next move is to call one of the legal firms who deal with this or the AS team, there is one firm to avoid because they are linked to CHC (on legal advice) -PM me if you wish to know this information.

Download the DST and carefully read through it, you need to score the following or be reasonably close to it:

A clear recommendation (and decision) of eligibility for NHS Continuing Healthcare would be expected in each of the following cases:

A level of priority needs in any one of the four domains that carry this level -domains in this level are breathing, behaviour, drug therapies and altered state of consciousness

A total of two or more incidences of identified severe needs across all care domains -domains in this include -breathing, nutritional needs, skin and tissue viability, mobility, cognition, behaviour, drug therapies and other significant care needs

Its stunning that advance dementia residents are denied this, although they automatically fit these health needs in most instances

If you feel this is you mum then I would move forward
 

ChrissieM

Registered User
Jan 9, 2021
34
0
I think you need to look at the DST before spending money on legal firms. You need to be sure in your own mind that your own assessment is valid and worth pursuing, if you feel that your mum scores on the DST, then the next move is to call one of the legal firms who deal with this or the AS team, there is one firm to avoid because they are linked to CHC (on legal advice) -PM me if you wish to know this information.

Download the DST and carefully read through it, you need to score the following or be reasonably close to it:

A clear recommendation (and decision) of eligibility for NHS Continuing Healthcare would be expected in each of the following cases:

A level of priority needs in any one of the four domains that carry this level -domains in this level are breathing, behaviour, drug therapies and altered state of consciousness

A total of two or more incidences of identified severe needs across all care domains -domains in this include -breathing, nutritional needs, skin and tissue viability, mobility, cognition, behaviour, drug therapies and other significant care needs

Its stunning that advance dementia residents are denied this, although they automatically fit these health needs in most instances

If you feel this is you mum then I would move forward
Thanks again for your advice
 

canary

Registered User
Feb 25, 2014
15,550
0
South coast
@ChrissieM , please be very careful about paying legal teams as there is no guarantee that they will be successful. Do please, please look at the Decision Support Tool and compare this to the scores that you should have been given. If you are only a few marks short and you can identify those places then it may be worth it, but I suspect that you may be quite a lot short.. When MartinWLsaid "The rule of thumb is that if carers can give the person the help they need, you don't get CHC. You only get it if qualified nurses are necessary" it doesnt mean district nurses popping in a few times a week, it means that qualified nurses are required on site 24/7 because emergencies happen quite frequently. Its this frequency and unpredictability that gets the high scores.