The thread has been a bit dormant lately so just inviting anyone who has or has not made progress to share any information that may be helpful to others or to ask about any issues that have arisen which members may have experienced.
CHC (Continuing Healthcare) support thread
- Thread starter stanleypj
- Start date
"...just inviting anyone who has or has not made progress to share any information that may be helpful to others..."
Members may not be aware of
http://forum.alzheimers.org.uk/show...inal-illness&p=1281045&viewfull=1#post1281045
Members may not be aware of
http://forum.alzheimers.org.uk/show...inal-illness&p=1281045&viewfull=1#post1281045
I suspect foul play.
Recently the check list was done for chc. I went to the care home to discus with a nurse the week before the check list. She was a senior nurse who knows my LO well. She said, yes she will definitely pass the checklist. She really needs chc.
The day before the meeting I asked the care home manager if that nurse would be present. The manager said no ‘I deal with funding’ she there will be a social worker present who will act as an advocate for you.
Come the day of the check lists, there was no advocate just me and the representative from the council care home support team. She was very abrupt and went out of her way to mark my mother down and she told me that ‘relatives opinions were of no interest to her’.
I can see why an officer in this role would want to mark my LO down as it is a funding issue.
But I also suspect that the care home manager is deliberately enabling this officer with this.
The care home manager has not replied to my emails regarding my mother’s health care and the fact she misled me about the process of the meeting. I have reported this to the CQC and actually brought a social worker into her office as a witness. She told me in front of the social worker yes I did reply to you and you replied back to that email. I said no I didn’t show me where you replied.
She looked at her screen for ages while I and the social worker didn’t say a word and just watched her. Then she said I have it here. I came round to look at her screen and there was one that appeared to be to me. I checked the date and it was recent. Then I checked who it addressed to. And it was actually addressed to the same officer who carried out the assessment. I pointed that out to her and she just said that that officer had asked her to copy her in with all emails between me and the care home.
One of the points I feel that my LO should get an A for is on the skin section. I won’t go into detail as to why to save time but my LO’s social worker agreed with this.
At the checklist meeting when I pointed out that my mother needs cream applied twice a day and tubby bandages as per the instructions from the sister at the leg ulcer clinic from mu LO’s previous borough , her response was that she is under this borough now.
That is when she made her comment about relatives’ opinions. Complaint in the pipeline.
Back to the care home manager and the meeting with the social worker present re the email trail avoidance, one of these emails was details of the recommendations from the leg ulcer clinic and raising my concerns this not being adhered to she said speak to the nursing staff. I pointed out that I had done that it still not being done and asked her again to reply to the emails.
Then out of blue she mentioned mums cognitive state, which threw me as it wasn’t relative to the conversation, but she said 'her cognitive state is good, she understands things.' I said no it wasn’t (how could it be when she has advancing Alzheimer’s thinks she 19 and can dance and is taking the knowledge to be a taxi driver)
Any way getting to my point, It seems to me that the care home manager is in in collusion with the council officer who did the check list.
I can’t think of what she would gain from this, brownie points maybe?
I will also point out the my LO’s original placement at the care home was by the NHS after multiple hospital admissions, this care home they sent her to is very far away from where she lived at the time and from where I live.
So food for thought.
Any opinions?
Recently the check list was done for chc. I went to the care home to discus with a nurse the week before the check list. She was a senior nurse who knows my LO well. She said, yes she will definitely pass the checklist. She really needs chc.
The day before the meeting I asked the care home manager if that nurse would be present. The manager said no ‘I deal with funding’ she there will be a social worker present who will act as an advocate for you.
Come the day of the check lists, there was no advocate just me and the representative from the council care home support team. She was very abrupt and went out of her way to mark my mother down and she told me that ‘relatives opinions were of no interest to her’.
I can see why an officer in this role would want to mark my LO down as it is a funding issue.
But I also suspect that the care home manager is deliberately enabling this officer with this.
The care home manager has not replied to my emails regarding my mother’s health care and the fact she misled me about the process of the meeting. I have reported this to the CQC and actually brought a social worker into her office as a witness. She told me in front of the social worker yes I did reply to you and you replied back to that email. I said no I didn’t show me where you replied.
She looked at her screen for ages while I and the social worker didn’t say a word and just watched her. Then she said I have it here. I came round to look at her screen and there was one that appeared to be to me. I checked the date and it was recent. Then I checked who it addressed to. And it was actually addressed to the same officer who carried out the assessment. I pointed that out to her and she just said that that officer had asked her to copy her in with all emails between me and the care home.
One of the points I feel that my LO should get an A for is on the skin section. I won’t go into detail as to why to save time but my LO’s social worker agreed with this.
At the checklist meeting when I pointed out that my mother needs cream applied twice a day and tubby bandages as per the instructions from the sister at the leg ulcer clinic from mu LO’s previous borough , her response was that she is under this borough now.
That is when she made her comment about relatives’ opinions. Complaint in the pipeline.
Back to the care home manager and the meeting with the social worker present re the email trail avoidance, one of these emails was details of the recommendations from the leg ulcer clinic and raising my concerns this not being adhered to she said speak to the nursing staff. I pointed out that I had done that it still not being done and asked her again to reply to the emails.
Then out of blue she mentioned mums cognitive state, which threw me as it wasn’t relative to the conversation, but she said 'her cognitive state is good, she understands things.' I said no it wasn’t (how could it be when she has advancing Alzheimer’s thinks she 19 and can dance and is taking the knowledge to be a taxi driver)
Any way getting to my point, It seems to me that the care home manager is in in collusion with the council officer who did the check list.
I can’t think of what she would gain from this, brownie points maybe?
I will also point out the my LO’s original placement at the care home was by the NHS after multiple hospital admissions, this care home they sent her to is very far away from where she lived at the time and from where I live.
So food for thought.
Any opinions?
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I'd be just as suspicious as you in the circumstances.
Forgive me for teaching my grandmother how to suck eggs again] but please document everything, take notes contemporaneously, ask helpful witnesses to sign the notes (you can also ask the unhelpful ones to - they're not likely to agree!) and take screen shots if possible. The more serious and well-organised you are in gathering info for formal complaints the more likely it is that the "opposition" will back down beforehand.
Forgive me for teaching my grandmother how to suck eggs again] but please document everything, take notes contemporaneously, ask helpful witnesses to sign the notes (you can also ask the unhelpful ones to - they're not likely to agree!) and take screen shots if possible. The more serious and well-organised you are in gathering info for formal complaints the more likely it is that the "opposition" will back down beforehand.
Thanks also confused, as I am learning as I go down this path, it is indeed essential to record things and get as much evidence as poss.
A few quick comments
A very useful thread thank you.
From my own very recent experiences:-
Document everything in writing and use photos where appropriate.
Question staff at the sharp end to see if their story differs to management.
Complete the questionnaires before the meeting and challenge it hard.
I doubt that my Mum is bad enough for CHC, but as she is early advanced none specific dementia plus a whole raft of other issues, I suspect it may be when rather than if.
Whatever happens we are happy to lose all the money just to ensure Mum enjoys her final few years.
A very useful thread thank you.
From my own very recent experiences:-
Document everything in writing and use photos where appropriate.
Question staff at the sharp end to see if their story differs to management.
Complete the questionnaires before the meeting and challenge it hard.
I doubt that my Mum is bad enough for CHC, but as she is early advanced none specific dementia plus a whole raft of other issues, I suspect it may be when rather than if.
Whatever happens we are happy to lose all the money just to ensure Mum enjoys her final few years.
Good advise Dothedealnow;
I have taken photos and filmed things on my phone. The films show clear evidence of how the ch is neglecting and failing her.
I would help if I could email a health care professional with the film but of course these films are too large to be sent by email.... if anyone know of another way I can do this please let me know. If I find out first I will post it here.
I have taken photos and filmed things on my phone. The films show clear evidence of how the ch is neglecting and failing her.
I would help if I could email a health care professional with the film but of course these films are too large to be sent by email.... if anyone know of another way I can do this please let me know. If I find out first I will post it here.
"...but of course these films are too large to be sent by email.... if anyone know of another way I can do this please let me know...."
Store it somewhere on line and email the link.
Utube
https://www.youtube.com/?gl=GB
can't password protect but you can make private.
Vimeo basic
https://vimeo.com/upgrade?utm_mediu...gclsrc=aw.ds&dclid=CJ2ntOuwk80CFeY92wodll0DgA
can password protect.
Depending on extension
http://www.tinyupload.com/index.php
can't password protect.
Store it somewhere on line and email the link.
Utube
https://www.youtube.com/?gl=GB
can't password protect but you can make private.
Vimeo basic
https://vimeo.com/upgrade?utm_mediu...gclsrc=aw.ds&dclid=CJ2ntOuwk80CFeY92wodll0DgA
can password protect.
Depending on extension
http://www.tinyupload.com/index.php
can't password protect.
Thanks nitram, I have also discovered by phoning a tech support number you can also do it if you have a hotmail account then you should be able to access 'One Drive' and from there you can create a link to the video that you can then email...
Open hotmail look for the sqaure icon with the 9 dots, then open 'One Drive' then go to upload arrows at the top, upload your video, then rightclick on it, then click 'create link'
then you have a link already to send in an email.
I am not going off chc suject here this is for anyone who would find phone video evidence usefull.
Open hotmail look for the sqaure icon with the 9 dots, then open 'One Drive' then go to upload arrows at the top, upload your video, then rightclick on it, then click 'create link'
then you have a link already to send in an email.
I am not going off chc suject here this is for anyone who would find phone video evidence usefull.
Feeling quite cross now can someone please advice me about the folllowing
I have just had a copy of the checklist back after one month.
I have only read part of it and am quite angry.
The part about cognition. My mother as I have mentioned before thought a few months ago that she was 19, now she says she is 50. She thinks the date is 1960 and that she is taking the knowledge as she is going to be a taxi driver.
That will give you a general gist.
When we had the checklist it was just me and the assessor present. She was abrupt and told me that 'relatives opinions were of no interest to her.' She went out of her way to mark my mother down.
Reading the notes for this section she states that my mother ‘has a diagnosis of dementia, but is capable of indicating her needs and wishes’. (This is rubbish she has a history of self-neglect) she also says that she was able to have a lengthy conversation, and could follow a three stage command read and write a short sentence. This is entirely fabrication. She cannot even sign her own name anymore. She has done this behind my back so that my mother had no advocate or relative present on her behalf. I have power of attorney and this was done without my consent.
I am sure that this is going against some guideline.
Does anyone know if this is contravening a guideline and if so which one?
I have just had a copy of the checklist back after one month.
I have only read part of it and am quite angry.
The part about cognition. My mother as I have mentioned before thought a few months ago that she was 19, now she says she is 50. She thinks the date is 1960 and that she is taking the knowledge as she is going to be a taxi driver.
That will give you a general gist.
When we had the checklist it was just me and the assessor present. She was abrupt and told me that 'relatives opinions were of no interest to her.' She went out of her way to mark my mother down.
Reading the notes for this section she states that my mother ‘has a diagnosis of dementia, but is capable of indicating her needs and wishes’. (This is rubbish she has a history of self-neglect) she also says that she was able to have a lengthy conversation, and could follow a three stage command read and write a short sentence. This is entirely fabrication. She cannot even sign her own name anymore. She has done this behind my back so that my mother had no advocate or relative present on her behalf. I have power of attorney and this was done without my consent.
I am sure that this is going against some guideline.
Does anyone know if this is contravening a guideline and if so which one?
If it's a complete fabrication, that's what it is, and it brings the whole checklist into question. You surely don't need anything about guidelines,it's simply a demonstrable fabrication and I think you should just put that in writing.
I completely agree with Stanley about the fabrication.
The nurse who did (original) MIL's worked through the checklist alongside the CH manager. At the time MIL had some pressure sores, the CH had documented them and taken photographs. I'm quite squeamish so couldn't look. This was discussed and MIL was given quite a high score for skin integrity.
18 months later, at a detailed review, MIL had no sores at all and her skin score was downgraded although in my "comments" which went to panel anlong with the DST, I pointed out that a well managed need is still a need. No idea if it made any difference.
Just as an aside, one of the senior carers was utterly furious about the skin score. Her comment went along the lines of: Oh I see, if we neglect her she gets CHC funding but, as we do our job properly and look after her she loses her funding!!!!!
The nurse who did (original) MIL's worked through the checklist alongside the CH manager. At the time MIL had some pressure sores, the CH had documented them and taken photographs. I'm quite squeamish so couldn't look. This was discussed and MIL was given quite a high score for skin integrity.
18 months later, at a detailed review, MIL had no sores at all and her skin score was downgraded although in my "comments" which went to panel anlong with the DST, I pointed out that a well managed need is still a need. No idea if it made any difference.
Just as an aside, one of the senior carers was utterly furious about the skin score. Her comment went along the lines of: Oh I see, if we neglect her she gets CHC funding but, as we do our job properly and look after her she loses her funding!!!!!
"When we had the checklist it was just me and the assessor present."
How much contact with your mother did the assessor have, and over what time spam?
Were any opinions of people who cared for your mother on a daily basis considered?
Did you provide any evidence of what was described as 'relatives' opinions'?
Who asked for the checklist assessment?
How much contact with your mother did the assessor have, and over what time spam?
Were any opinions of people who cared for your mother on a daily basis considered?
Did you provide any evidence of what was described as 'relatives' opinions'?
Who asked for the checklist assessment?
Yes that is what is think too stanleypj, and was going to write to her manager to offer to bring my mother to see her so she could see for herself.
I am afraid the care home is of no use as I have just reported them to the CQC for many things including refusing to reply to emails and having completely inadequate notes. They have been of no help regarding this issue and in fact are a large part of the problem and I suspect that the care home manager is also doing what ever she can to help the assessor from the care home support team. I wont go into details as to why as I am going off my original point now.
I will put all this in writing, I have got film evidence which clearly shows my mothers level of cognition, I don't really like to send films of my mother though but would be happy to go there and show her. Or actually take my mother there, but it would be a bit of an upheaval for her.
Does anyone know where I can get an independent assessor just for cognition that would not cost a fortune?
And surely the assessor should not be seeing my mother without her having any advocate or family member present, I have power of attorney how it be ok for her to do this?
I am afraid the care home is of no use as I have just reported them to the CQC for many things including refusing to reply to emails and having completely inadequate notes. They have been of no help regarding this issue and in fact are a large part of the problem and I suspect that the care home manager is also doing what ever she can to help the assessor from the care home support team. I wont go into details as to why as I am going off my original point now.
I will put all this in writing, I have got film evidence which clearly shows my mothers level of cognition, I don't really like to send films of my mother though but would be happy to go there and show her. Or actually take my mother there, but it would be a bit of an upheaval for her.
Does anyone know where I can get an independent assessor just for cognition that would not cost a fortune?
And surely the assessor should not be seeing my mother without her having any advocate or family member present, I have power of attorney how it be ok for her to do this?
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nitram, I requested the checklist. I don't know how much contact she had because she made sure that I was not present.
Were any opinions of people who cared for your mother on a daily basis considered? the week before the checklist I spoke to a senior nurse at the care home who knows my mother well. She said she will pass it for sure I know how much care she needs. I asked if that nurse could be present. The manager sounded quite stern and said 'I handle everything to so with funding.' I have not seen the nurse on duty since.
The comment about the relatives opinions came when I said to her at the assessment I disagree with your finding, then she said 'relatives opinions are of no interest to me'
Were any opinions of people who cared for your mother on a daily basis considered? the week before the checklist I spoke to a senior nurse at the care home who knows my mother well. She said she will pass it for sure I know how much care she needs. I asked if that nurse could be present. The manager sounded quite stern and said 'I handle everything to so with funding.' I have not seen the nurse on duty since.
The comment about the relatives opinions came when I said to her at the assessment I disagree with your finding, then she said 'relatives opinions are of no interest to me'
My Mum is still under the care of a psychiatrist - is yours under the care of a psychiatrist, psychologist or geriatrician please?
I 'phoned up Mum's psychiatrist when I wanted her support over the issue whether Mum could communicate in any meaningful way ... and I didn't offer to pay for the advice!!!
Thanks for your comment AlsoConfused, my mother has not seen the doctor from the memory clinic since diagnosis 2 years ago, but I will contact her and perhaps an admiral nurse.
But meanwhile I will be writing a very strong letter about the way the checklist was conducted. I know I read somewhere that the person being assessed should have an advocate present and or family member.
My mother does not have the mental capacity to understand what an assessment even is, so she is a vulnerable person and this has been taken advantage of.
But meanwhile I will be writing a very strong letter about the way the checklist was conducted. I know I read somewhere that the person being assessed should have an advocate present and or family member.
My mother does not have the mental capacity to understand what an assessment even is, so she is a vulnerable person and this has been taken advantage of.
'I handle everything to so with funding.'
This statement by the manager is out of place, the CHC checklist is nothing to do with funding, it is solely an assessment of a person's medical care needs. Admittedly if CHC were granted it would lead to funding being at the CCG rate which would probably be much lower than the self funding rate.
Very little weight can be given to relatives' opinions unless they are backed up with evidence. Even a statement that an event occurred at specific places, dates, and times bears more weight than just saying the event commonly happens.
Yourself and/or an advocate should have been given access to care plans and records so that a true picture of your mum's medical needs could be established. Does your mum have a social worker?
This statement by the manager is out of place, the CHC checklist is nothing to do with funding, it is solely an assessment of a person's medical care needs. Admittedly if CHC were granted it would lead to funding being at the CCG rate which would probably be much lower than the self funding rate.
Very little weight can be given to relatives' opinions unless they are backed up with evidence. Even a statement that an event occurred at specific places, dates, and times bears more weight than just saying the event commonly happens.
Yourself and/or an advocate should have been given access to care plans and records so that a true picture of your mum's medical needs could be established. Does your mum have a social worker?
nitram, my mother is LA funded. The problem is the notes at the CH are terrible. Some barely legible and others just incomplete or just missing things entirely.
For example there is a note of the mum seeing the chiropodist at the CH, but what they have failed to mention is that she refused any treatment. They didn’t even inform me of this I only found out by checking her feet myself and finding them in a terrible state with badly curling over nails almost going into the skin.
Just one example.
The social worker has also taken this up with the manager as their notes are very poor indeed. Unclear and full of contradictions. No note of a fall mum had in the grounds in December and much more just missing.
I have raised this and other points with the CQC. And will be looking for another CH.
In the meantime, all I can provide as evidence is film footage of my mother’s level of cognition and of her skin problems.
Mum was under the leg ulcer clinic and is supposed to be in tubby bandages and have cream applied twice a day. This was emailed to the manager 2 months ago but she simply ignores it, she has told me that she has received it but refuses to reply. (Just another reason why I f eel she is acting in the interest of assessor in not providing evidence.) This has all been reported now.
The Sister at the leg ulcer clinic is writing to the CH and to the DR.
Meanwhile all I can offer as evidence is film footage or actually taking my mother in person to the assessor’s manager.
For example there is a note of the mum seeing the chiropodist at the CH, but what they have failed to mention is that she refused any treatment. They didn’t even inform me of this I only found out by checking her feet myself and finding them in a terrible state with badly curling over nails almost going into the skin.
Just one example.
The social worker has also taken this up with the manager as their notes are very poor indeed. Unclear and full of contradictions. No note of a fall mum had in the grounds in December and much more just missing.
I have raised this and other points with the CQC. And will be looking for another CH.
In the meantime, all I can provide as evidence is film footage of my mother’s level of cognition and of her skin problems.
Mum was under the leg ulcer clinic and is supposed to be in tubby bandages and have cream applied twice a day. This was emailed to the manager 2 months ago but she simply ignores it, she has told me that she has received it but refuses to reply. (Just another reason why I f eel she is acting in the interest of assessor in not providing evidence.) This has all been reported now.
The Sister at the leg ulcer clinic is writing to the CH and to the DR.
Meanwhile all I can offer as evidence is film footage or actually taking my mother in person to the assessor’s manager.
So sorry to read about your and your Mum's plight MDM ... Life's hard enough even when everyone does their job and works co-operatively, it must be dreadful to feel you're fighting against deliberate unkindness, neglect and obstructiveness. Good luck to you.
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