So bizarre !
- Thread starter Ann Mac
- Start date
I get the feeling that the 2 hours less is testing to see "if it's really necessary for 1-1", and if there's no problems in those 2 hours it will open the gate for more hours to be shaved off.
Lets just hope there's no serious incidents during those 2 hours (or should that be "let's hope"...!)
Lets just hope there's no serious incidents during those 2 hours (or should that be "let's hope"...!)
Morning everyone,
Rainbow has summed up why I think the hours have been stopped
The staff, being aware that the HBM was likely to try 'something' have been at pains to point out that the 1-1 intervention is 'managing a need' - looking at the incident sheets, there is no doubt that the 1-1 has saved several residents from possible injury, as well as it keeping Mil safe. HBM has taken the time from the morning, the time period where Mil recieves personal care, and all the notes document repeatedly that this is the time when you can almost guarantee that Mil will be very aggressive. There is no justification for the removal of care - other than, as rainbow says, trying it on to see if she can get away with it and save money.
I am so angry.
By sheer co-incidence, yesterday I recieved correspondence from Huw Irranca-Davies, the Welsh Minister for Children, Older People and Social Care. It says . . .
"Thank you for your email addressed to the Cabinet Secretary for Health and Social Services. Since your correspondence relates to Continuing NHS Healthcare (CHC), which falls within my responsibilities, it has been passed to me for response.
I have read with genuine interest your detailed account of dealing with your mother in law’s progressive dementia and your obvious wish to ensure the best possible care for her as she approaches the final stages of her illness. I was therefore, sorry to note that the outcome of the CHC assessment had caused further distress to you and your family.
The Welsh Government has issued comprehensive guidance on the assessment of eligibility for CHC in Wales and on its subsequent delivery. In the light of your concerns, my officials have been in touch with the CHC lead official at Betsi Cadwaladr University Health Board to gain a clear understanding of how the assessment reached the conclusion of a need for further evidence to support eligibility. I understand that this led to an immediate review by the lead official.
I am now informed that a range of actions have been put in place to support and enhance the nursing home care your mother-in-law has been receiving. In particular, I believe that twelve-hour periods of the 1:1 care you referred to have been implemented on an interim basis prior to a full multi-disciplinary team assessment of her future care needs at a time that is convenient to you. I am also aware that you now have the contact details of the lead CHC official to enable you to raise any concerns directly with her for prompt consideration and response."
Note the bit I've underlined and made bold . He has been told that the 1-1 on a 12 hourly basis will continue until the review. And the HBM has changed it.
And this bit
"In the light of your concerns, my officials have been in touch with the CHC lead official at Betsi Cadwaladr University Health Board to gain a clear understanding of how the assessment reached the conclusion of a need for further evidence to support eligibility. I understand that this led to an immediate review by the lead official. "
So, as soon as her original decision was challenged and questioned, the HMB (who I presume is the 'lead official?) 'reviewed' it - which proves the required evidence was there all along. I would be interested to know, in that case, why she was so insistent that more evidence was needed in the first place?
The home have told me that they managed to still provide the 1-1 during the reduced time period yesterday, but that it was a struggle and its not something that they can guarantee to be able to do every day - if a staff phones in sick, leaving them short until they can draft someone else in, or if they have other residents seriously unwell or in need of unexpected extra care, then they are not going to be able to give Mil the 1-1 support during the hours that it isn't covered for. Its been removed from 10 in the morning untill 12pm. That may mean that they will be unable to wash and dress Mil until 12pm, without the additional staff present to combat the aggression or if the TD symptoms are bad (they can allocate up to 2 staff per resident to attend to personal care, but in Mils case, it often takes 3 to ensure both her safety and the safety of the staff). If they do manage to get her washed and dressed, if Mil is aggressive at this time, the only option may be to leave her in her room for the safety of other residents. Same if she has a period of bad TD symptoms and she is unable to remain safely sat in the lounge. This will probably mean extended unsupervised periods of her being left on bean bags, on the floor. If she chokes or vomits during the time she may have to spend in her room unsupervised - well, with no one there, you can all imagine what might happen.
I'll be sending another email to this minister, and making a phone call to the HBM on Monday. Today I am going into the home and photographing the incident reports and all the notes that refer to issues/incidents that have occured during the time period that the 1-1 has been stopped. That can all go to the minister too. Along with a clear statement saying that I will hold the HBM and the Health Board responsible for any injury or harm caused to Mil during periods where she is not supported and cared for in the manner advised by the nursing and senior staff at the home, the original CHC assessor, her consultant psychiatrist, her consultant specialist in geriatric care and her social worker. And should she injure another resident, I'll be telling the minister that I will let that residents family know who's responsibility it is. I may include one of the video's I have of Mil with the email, too - I don't know how anyone could watch it and not see just how horrendous her situation is, or how anyone could argue against the need for so much additional care.
I am so, so fed up of this. Really tired, feeling every bit as stressed as when we had particularly bad times when Mil lived with us and we had to fight for help. I can't get my head round it - so much documented evidence and expert opinions from people qualified to give those opinions, that catagorically demonstrates the risks to Mil and others and why there is a need for 1-1. And without any justification being given, the care can be removed, just like that.
I'll keep you all updated - thank you, as always for all the support xxxx
Rainbow has summed up why I think the hours have been stopped
The staff, being aware that the HBM was likely to try 'something' have been at pains to point out that the 1-1 intervention is 'managing a need' - looking at the incident sheets, there is no doubt that the 1-1 has saved several residents from possible injury, as well as it keeping Mil safe. HBM has taken the time from the morning, the time period where Mil recieves personal care, and all the notes document repeatedly that this is the time when you can almost guarantee that Mil will be very aggressive. There is no justification for the removal of care - other than, as rainbow says, trying it on to see if she can get away with it and save money.
I am so angry.
By sheer co-incidence, yesterday I recieved correspondence from Huw Irranca-Davies, the Welsh Minister for Children, Older People and Social Care. It says . . .
"Thank you for your email addressed to the Cabinet Secretary for Health and Social Services. Since your correspondence relates to Continuing NHS Healthcare (CHC), which falls within my responsibilities, it has been passed to me for response.
I have read with genuine interest your detailed account of dealing with your mother in law’s progressive dementia and your obvious wish to ensure the best possible care for her as she approaches the final stages of her illness. I was therefore, sorry to note that the outcome of the CHC assessment had caused further distress to you and your family.
The Welsh Government has issued comprehensive guidance on the assessment of eligibility for CHC in Wales and on its subsequent delivery. In the light of your concerns, my officials have been in touch with the CHC lead official at Betsi Cadwaladr University Health Board to gain a clear understanding of how the assessment reached the conclusion of a need for further evidence to support eligibility. I understand that this led to an immediate review by the lead official.
I am now informed that a range of actions have been put in place to support and enhance the nursing home care your mother-in-law has been receiving. In particular, I believe that twelve-hour periods of the 1:1 care you referred to have been implemented on an interim basis prior to a full multi-disciplinary team assessment of her future care needs at a time that is convenient to you. I am also aware that you now have the contact details of the lead CHC official to enable you to raise any concerns directly with her for prompt consideration and response."
Note the bit I've underlined and made bold . He has been told that the 1-1 on a 12 hourly basis will continue until the review. And the HBM has changed it.
And this bit
"In the light of your concerns, my officials have been in touch with the CHC lead official at Betsi Cadwaladr University Health Board to gain a clear understanding of how the assessment reached the conclusion of a need for further evidence to support eligibility. I understand that this led to an immediate review by the lead official. "
So, as soon as her original decision was challenged and questioned, the HMB (who I presume is the 'lead official?) 'reviewed' it - which proves the required evidence was there all along. I would be interested to know, in that case, why she was so insistent that more evidence was needed in the first place?
The home have told me that they managed to still provide the 1-1 during the reduced time period yesterday, but that it was a struggle and its not something that they can guarantee to be able to do every day - if a staff phones in sick, leaving them short until they can draft someone else in, or if they have other residents seriously unwell or in need of unexpected extra care, then they are not going to be able to give Mil the 1-1 support during the hours that it isn't covered for. Its been removed from 10 in the morning untill 12pm. That may mean that they will be unable to wash and dress Mil until 12pm, without the additional staff present to combat the aggression or if the TD symptoms are bad (they can allocate up to 2 staff per resident to attend to personal care, but in Mils case, it often takes 3 to ensure both her safety and the safety of the staff). If they do manage to get her washed and dressed, if Mil is aggressive at this time, the only option may be to leave her in her room for the safety of other residents. Same if she has a period of bad TD symptoms and she is unable to remain safely sat in the lounge. This will probably mean extended unsupervised periods of her being left on bean bags, on the floor. If she chokes or vomits during the time she may have to spend in her room unsupervised - well, with no one there, you can all imagine what might happen.
I'll be sending another email to this minister, and making a phone call to the HBM on Monday. Today I am going into the home and photographing the incident reports and all the notes that refer to issues/incidents that have occured during the time period that the 1-1 has been stopped. That can all go to the minister too. Along with a clear statement saying that I will hold the HBM and the Health Board responsible for any injury or harm caused to Mil during periods where she is not supported and cared for in the manner advised by the nursing and senior staff at the home, the original CHC assessor, her consultant psychiatrist, her consultant specialist in geriatric care and her social worker. And should she injure another resident, I'll be telling the minister that I will let that residents family know who's responsibility it is. I may include one of the video's I have of Mil with the email, too - I don't know how anyone could watch it and not see just how horrendous her situation is, or how anyone could argue against the need for so much additional care.
I am so, so fed up of this. Really tired, feeling every bit as stressed as when we had particularly bad times when Mil lived with us and we had to fight for help. I can't get my head round it - so much documented evidence and expert opinions from people qualified to give those opinions, that catagorically demonstrates the risks to Mil and others and why there is a need for 1-1. And without any justification being given, the care can be removed, just like that.
I'll keep you all updated - thank you, as always for all the support xxxx
I'm so sorry you are having to deal with this and the attendant stress. The key thing is that the HBM has gone against what was agreed. Think all of your plan is a good one. I would send the video. Worth also telling them you are documenting everything with a view to going to the press? (You can name drop at least one local journalist with whom you have contact from before, I think.)
Good point
This HBM dealings smacks of running close to the wind as regards to legalities of implementing CHC, twisting things to save money..... Only in my opinion obviously, as I can only see one side of the story and money doesn’t come into it.....
I'm working my way through the CHC framework for Wales - talk about complex and wordy! However, already I have high lighted several areas where I think there is either a justifiable challenge to the HBM's actions, or evidence that the framework hasn't been followed. One of the primary ones is of course, the guidelines around 'managed needs'. 1-1 was managing an identified need during the 12 hours it had been awarded for - removing the 1-1 for any of that period means that during that period, the need is no longer managed, and all the identified risks come back into play.
There is also the section dealing with the HB taking into accoun the views and assessments presented by the Multidisiplinary team members - Mils family, CH carers and nurses, other health and social care professionals. If a CHC care package is to be changed or refused, there has to be a reason why their vews are not accepted. We have been given no reason.
The HBM told me that she was bringing an OT to see Mil, she even gave me a date. That didn't happen. Instead she turned up the day after to go through Mils notes, without warning - so red, yep - I'll be querying that too. And the fact that Nurse L's comments and opinon were ignored.
Its going to be a long few days trying to sort this.
There is also the section dealing with the HB taking into accoun the views and assessments presented by the Multidisiplinary team members - Mils family, CH carers and nurses, other health and social care professionals. If a CHC care package is to be changed or refused, there has to be a reason why their vews are not accepted. We have been given no reason.
The HBM told me that she was bringing an OT to see Mil, she even gave me a date. That didn't happen. Instead she turned up the day after to go through Mils notes, without warning - so red, yep - I'll be querying that too. And the fact that Nurse L's comments and opinon were ignored.
Its going to be a long few days trying to sort this.
@Ann Mac
Don’t want to add to your reading list... ( in the word “list” spell checker kept changing the i to u )
Way back when, I read on here of someone who has made it their mission to help people in extreme dispute with the CHC process. I think, not 100% this is the link.
If it isn’t, Maybe one of the other who read about it might remember who I mean
https://caretobedifferent.co.uk/nhs-continuing-healthcare-decision-support-tool-tips/
I had a read of the link at the bottom of the page “if you need someone to help you” seems it’s a free initial consultation then costs but possibly the initial consultation may help
Don’t want to add to your reading list... ( in the word “list” spell checker kept changing the i to u )
Way back when, I read on here of someone who has made it their mission to help people in extreme dispute with the CHC process. I think, not 100% this is the link.
If it isn’t, Maybe one of the other who read about it might remember who I mean
https://caretobedifferent.co.uk/nhs-continuing-healthcare-decision-support-tool-tips/
I had a read of the link at the bottom of the page “if you need someone to help you” seems it’s a free initial consultation then costs but possibly the initial consultation may help
Thanks 2jays. I've had a brief peep and that could be very useful x
According to what I've read, there should be a copy of the DST (decision support tool - basically, the assessment form filled in by the initial assessor) in Mils care plan - I'm going to ask for a copy of that too, to send to the minister. There are also statements written by Dr J and the social worker, supporting the 1-1 and saying why they feel its needed - I asked for them to write those statements, they read them out to me before they were added to Mils care plan. I am also very glad that I asked about alternatives to 1-1 at the last meeting. It means that I have proof that it isn't a case of this being asked for on a whim, that other alternatives have been looked at.
Its like being involved in a flipping game - trying to anticipate every single obsticle and action that your opponant might use, and being ready to answer and combat any and every gambit, no matter how ridiculous or unexpected it may be. My brain is totally mashed
According to what I've read, there should be a copy of the DST (decision support tool - basically, the assessment form filled in by the initial assessor) in Mils care plan - I'm going to ask for a copy of that too, to send to the minister. There are also statements written by Dr J and the social worker, supporting the 1-1 and saying why they feel its needed - I asked for them to write those statements, they read them out to me before they were added to Mils care plan. I am also very glad that I asked about alternatives to 1-1 at the last meeting. It means that I have proof that it isn't a case of this being asked for on a whim, that other alternatives have been looked at.
Its like being involved in a flipping game - trying to anticipate every single obsticle and action that your opponant might use, and being ready to answer and combat any and every gambit, no matter how ridiculous or unexpected it may be. My brain is totally mashed
quote is from Mahatma Gandhi:
“First they ignore you. Then they laugh at you. Then they fight you. Finally you win.”
My opinion
You are a challenge to HBM who is possibly a person who feels they are always right and for you to point out they are wrong, can’t bring themselves to back down until the bitter end.....
You have the law on your side
And TP
“First they ignore you. Then they laugh at you. Then they fight you. Finally you win.”
My opinion
You are a challenge to HBM who is possibly a person who feels they are always right and for you to point out they are wrong, can’t bring themselves to back down until the bitter end.....
You have the law on your side
And TP
Feeling lots better. The brain has kicked back into gear, the body is slowly getting there.
Thinking positive: If body not at full speed, no need to find excuse to “do things” myself, can use brain to direct and supervise others to “do things”
Feeling lots better. The brain has kicked back into gear, the body is slowly getting there.
Thinking positive: If body not at full speed, no need to find excuse to “do things” myself, can use brain to direct and supervise others to “do things”
That's the way to do it!!
Ann, I am so sorry that you re going through this
What discipline is the HBM from? What right has she to view personal medical/care records? BTW, that question is not rhetorical. She has accessed a resident's personal files, I would like to know on what basis she has done this! I know she was set copies of much of this, but that allowed trained personnel to send what they thought was appropriate. Reading the unexpurgated records if a different matter.I'm afraid I do not have any helpful advice and still need to watch my words for fear of saying something not appropriate for a public forum
Why am I shocked she has done this?
Playing devils advocate has she removed the 1-1 at the time when the staff will be in danger from MIL so they will throw her out? MIL will have to be re admitted to a ward which might be seen as cheaper by that abominable woman so will earn the evil woman brownie points with her bosses.
If you think that is even in her head I'd play the almost end of life card. Also MIL will be seen as too frail to move.
Playing devils advocate has she removed the 1-1 at the time when the staff will be in danger from MIL so they will throw her out? MIL will have to be re admitted to a ward which might be seen as cheaper by that abominable woman so will earn the evil woman brownie points with her bosses.
If you think that is even in her head I'd play the almost end of life card. Also MIL will be seen as too frail to move.
