So bizarre !
- Thread starter Ann Mac
- Start date
Bless you all - thank you so much for all the lovely hugs xxxxx
Spamar, really hope your poor shoulder is better today xxx
I've tried to pop on a couple of times to update you all, but it's been a bit manic. Monday, I started early and got a load of admin for work done, then spent the rest of the day playing 'phone tag' with the manager at the HB (who wants 'more evidence') and the local councillor who holds the portfolio for health and social welfare for this area.
The manager phoned me back finally around 1.45. Found her very patronising and overbearing, not interested in listening to anything, just repeating over and over and 'there isn't enough evidence', without explaining why everything that had been given wasn't enough. She said she had given the home a week to 'come up with more'. It was like talking to a brick wall, a complete waste of time.
The councillor phoned me back early evening. She was totally appalled, very sympathetic, but wasn't sure what she could do, believe it or not! She described the HB as a 'law unto themselves', a 'nightmare' and 'impossible to deal with'. She has had many run in's with them, by the sound of it, but they seem not to be answerable to her - or anyone else for that matter. She said she would get back to me, by Thursday. I am still waiting.
Tuesday I had to go to South Wales for 2 days of meetings, mandatory, no way could I get out of it. I left at 5a.m Tuesday Moring, got back 9.25pm Wednesday night
Meanwhile, the new consultant had made herself 'available' for an emergency meeting with us on Wednesday morning, a fact that was only communicated to OH Tuesday night, and with him working and me in Swansea on Wednesday, neither of us could attend, which was infuriating and frustrating. Even if I could have somehow missed the second day of meetings with work, the journey takes around 5 hours, so there was no way I could have got back in time. That meeting is now scheduled for 27th June - the consultant being on holiday till then.
Yesterday morning, I contacted by email, the Welsh Minister for Health and Social Welfare, Vaughan Gething. I explained the situation, heavy emphasis on how often Mil had been let down by the local Health Board and was deliberately graphic about the potential outcomes if CHC continue to avoid providing her with the support that Mil needs. There is no other way for me to communicate with him on matters like this, as I am not in his constituency. I got a bog standard automatic response saying that his office would aim to reply within 17 days.
So - currently we have Mils social worker (another new one, never met her, but told she is good and is very supportive of CHC being awarded), the nursing staff, managers and care staff at the CH, the consultant and us, back by supporting evidence from a CHC assessor, fighting on Mils behalf against a manager from the Health Board, who is able to completely ignore us all if she wishes and basically do what she likes. There seems to be no avenue to 'go above' her head, no matter how urgent the situation is considered to be, no matter what the potential risks to Mil or other residents (never mind staff!) if it isn't dealt with swiftly. If she says 'No', the only option is appeal, and that can take weeks, with this manager seemingly able to throw whatever obsticles she likes in our path. The CH are completing reports on every single thing Mil does, which is adding massively to their work load, but they are committed and determined - bless 'em, every damn member of staff there is aware and furious on Mil's behalf. Every spasm, every repositioning to stop her falling off the chair, every fall, every indication of agitation, every single indication of or actual act of agression, every time she struggles with a mouthful of food or drink, every behaviour - no matter how small - is being documented in minute detail.
I went to see Mil after emailing Gething yesterday morning. This is odd to describe, but although she sems physically 'better' in terms of her breathing and her responsiveness, there is still a noticable difference in her, a decline that is hard to put into words. Her speech is just that bit worse and she seems more - well, I don't know if manic is the right word really, but in seconds she goes from laughing and giving you hugs to a sudden spasm, or to tears and repeating 'Mum, mum, mum'; or to suddenly shouting, or turning to the person next to her and grabbing them quite viciously, or suddenly trying to slide or throw herself off her seat, and it seems intentional. The staff think she is hallucinating a lot, turning her head or pointing to 'someone or something', talking unintelligibly as if responding to something said, even nodding her head in agreement. I saw that myself yesterday - Its so strange. The nurse told me that earlier in the morning, after it had taken 3 staff to assist her to walk to a chair, she had then got up and moved quickly enough to get through the lounge door as a cleaner was coming through, and had headed off down the corridor, banging on doors, screaming and fighting against staff who tried to get her back into the lounge. Shortly after that, the nurse watched in amazement (she said) as Mil slid to the edge of her seat, very carefully kneeling on first one leg, then the other, then carefully stretched herself out on the floor - and began rolling around. She has now done that several times, and its another massive risk as some staff have seem her appearing to roll towards residents who are walking round, as if to deliberately 'get under their feet'. I had to grin when the nurse described it as 'so bizarre' - took the words out of our mouths.
The nurse also told me that a lot of Mils medications have now been removed. She has the pain patch and sleeping meds still, and the quetiapine is being reduced. Her GP, despite there being no evidence of infection apparent from blood and urine tests, has now insited on a 'last blast of antibiotics', just in case there is something underlying, but after that - no more anti-biotics. So far, there isn't much change either in terms of her health getting worse or her behaviour improving. The general consensus of the nursing staff is that Mil is physically failing and deteriorating, and that we are still talking at the very most, weeks.
So - that's where we are up to. I don't quite know what to do next, to be honest. Until this meeting, we are in yet another sort of limbo. I am totally worn out and obviously we all feel really stressed, and even hopeless at times. The whole system feels geared against her, and its horrible.
Sending love and very grateful thanks to you all xxxxxxx
Spamar, really hope your poor shoulder is better today xxx
I've tried to pop on a couple of times to update you all, but it's been a bit manic. Monday, I started early and got a load of admin for work done, then spent the rest of the day playing 'phone tag' with the manager at the HB (who wants 'more evidence') and the local councillor who holds the portfolio for health and social welfare for this area.
The manager phoned me back finally around 1.45. Found her very patronising and overbearing, not interested in listening to anything, just repeating over and over and 'there isn't enough evidence', without explaining why everything that had been given wasn't enough. She said she had given the home a week to 'come up with more'. It was like talking to a brick wall, a complete waste of time.
The councillor phoned me back early evening. She was totally appalled, very sympathetic, but wasn't sure what she could do, believe it or not! She described the HB as a 'law unto themselves', a 'nightmare' and 'impossible to deal with'. She has had many run in's with them, by the sound of it, but they seem not to be answerable to her - or anyone else for that matter. She said she would get back to me, by Thursday. I am still waiting.
Tuesday I had to go to South Wales for 2 days of meetings, mandatory, no way could I get out of it. I left at 5a.m Tuesday Moring, got back 9.25pm Wednesday night
Meanwhile, the new consultant had made herself 'available' for an emergency meeting with us on Wednesday morning, a fact that was only communicated to OH Tuesday night, and with him working and me in Swansea on Wednesday, neither of us could attend, which was infuriating and frustrating. Even if I could have somehow missed the second day of meetings with work, the journey takes around 5 hours, so there was no way I could have got back in time. That meeting is now scheduled for 27th June - the consultant being on holiday till then.Yesterday morning, I contacted by email, the Welsh Minister for Health and Social Welfare, Vaughan Gething. I explained the situation, heavy emphasis on how often Mil had been let down by the local Health Board and was deliberately graphic about the potential outcomes if CHC continue to avoid providing her with the support that Mil needs. There is no other way for me to communicate with him on matters like this, as I am not in his constituency. I got a bog standard automatic response saying that his office would aim to reply within 17 days.
So - currently we have Mils social worker (another new one, never met her, but told she is good and is very supportive of CHC being awarded), the nursing staff, managers and care staff at the CH, the consultant and us, back by supporting evidence from a CHC assessor, fighting on Mils behalf against a manager from the Health Board, who is able to completely ignore us all if she wishes and basically do what she likes. There seems to be no avenue to 'go above' her head, no matter how urgent the situation is considered to be, no matter what the potential risks to Mil or other residents (never mind staff!) if it isn't dealt with swiftly. If she says 'No', the only option is appeal, and that can take weeks, with this manager seemingly able to throw whatever obsticles she likes in our path. The CH are completing reports on every single thing Mil does, which is adding massively to their work load, but they are committed and determined - bless 'em, every damn member of staff there is aware and furious on Mil's behalf. Every spasm, every repositioning to stop her falling off the chair, every fall, every indication of agitation, every single indication of or actual act of agression, every time she struggles with a mouthful of food or drink, every behaviour - no matter how small - is being documented in minute detail.
I went to see Mil after emailing Gething yesterday morning. This is odd to describe, but although she sems physically 'better' in terms of her breathing and her responsiveness, there is still a noticable difference in her, a decline that is hard to put into words. Her speech is just that bit worse and she seems more - well, I don't know if manic is the right word really, but in seconds she goes from laughing and giving you hugs to a sudden spasm, or to tears and repeating 'Mum, mum, mum'; or to suddenly shouting, or turning to the person next to her and grabbing them quite viciously, or suddenly trying to slide or throw herself off her seat, and it seems intentional. The staff think she is hallucinating a lot, turning her head or pointing to 'someone or something', talking unintelligibly as if responding to something said, even nodding her head in agreement. I saw that myself yesterday - Its so strange. The nurse told me that earlier in the morning, after it had taken 3 staff to assist her to walk to a chair, she had then got up and moved quickly enough to get through the lounge door as a cleaner was coming through, and had headed off down the corridor, banging on doors, screaming and fighting against staff who tried to get her back into the lounge. Shortly after that, the nurse watched in amazement (she said) as Mil slid to the edge of her seat, very carefully kneeling on first one leg, then the other, then carefully stretched herself out on the floor - and began rolling around. She has now done that several times, and its another massive risk as some staff have seem her appearing to roll towards residents who are walking round, as if to deliberately 'get under their feet'. I had to grin when the nurse described it as 'so bizarre' - took the words out of our mouths.
The nurse also told me that a lot of Mils medications have now been removed. She has the pain patch and sleeping meds still, and the quetiapine is being reduced. Her GP, despite there being no evidence of infection apparent from blood and urine tests, has now insited on a 'last blast of antibiotics', just in case there is something underlying, but after that - no more anti-biotics. So far, there isn't much change either in terms of her health getting worse or her behaviour improving. The general consensus of the nursing staff is that Mil is physically failing and deteriorating, and that we are still talking at the very most, weeks.
So - that's where we are up to. I don't quite know what to do next, to be honest. Until this meeting, we are in yet another sort of limbo. I am totally worn out and obviously we all feel really stressed, and even hopeless at times. The whole system feels geared against her, and its horrible.
Sending love and very grateful thanks to you all xxxxxxx
Bless you all - thank you so much for all the lovely hugs xxxxx
Spamar, really hope your poor shoulder is better today xxx
I've tried to pop on a couple of times to update you all, but it's been a bit manic. Monday, I started early and got a load of admin for work done, then spent the rest of the day playing 'phone tag' with the manager at the HB (who wants 'more evidence') and the local councillor who holds the portfolio for health and social welfare for this area.
The manager phoned me back finally around 1.45. Found her very patronising and overbearing, not interested in listening to anything, just repeating over and over and 'there isn't enough evidence', without explaining why everything that had been given wasn't enough. She said she had given the home a week to 'come up with more'. It was like talking to a brick wall, a complete waste of time.
The councillor phoned me back early evening. She was totally appalled, very sympathetic, but wasn't sure what she could do, believe it or not! She described the HB as a 'law unto themselves', a 'nightmare' and 'impossible to deal with'. She has had many run in's with them, by the sound of it, but they seem not to be answerable to her - or anyone else for that matter. She said she would get back to me, by Thursday. I am still waiting.
Tuesday I had to go to South Wales for 2 days of meetings, mandatory, no way could I get out of it. I left at 5a.m Tuesday Moring, got back 9.25pm Wednesday night
Yesterday morning, I contacted by email, the Welsh Minister for Health and Social Welfare, Vaughan Gething. I explained the situation, heavy emphasis on how often Mil had been let down by the local Health Board and was deliberately graphic about the potential outcomes if CHC continue to avoid providing her with the support that Mil needs. There is no other way for me to communicate with him on matters like this, as I am not in his constituency. I got a bog standard automatic response saying that his office would aim to reply within 17 days.
So - currently we have Mils social worker (another new one, never met her, but told she is good and is very supportive of CHC being awarded), the nursing staff, managers and care staff at the CH, the consultant and us, back by supporting evidence from a CHC assessor, fighting on Mils behalf against a manager from the Health Board, who is able to completely ignore us all if she wishes and basically do what she likes. There seems to be no avenue to 'go above' her head, no matter how urgent the situation is considered to be, no matter what the potential risks to Mil or other residents (never mind staff!) if it isn't dealt with swiftly. If she says 'No', the only option is appeal, and that can take weeks, with this manager seemingly able to throw whatever obsticles she likes in our path. The CH are completing reports on every single thing Mil does, which is adding massively to their work load, but they are committed and determined - bless 'em, every damn member of staff there is aware and furious on Mil's behalf. Every spasm, every repositioning to stop her falling off the chair, every fall, every indication of agitation, every single indication of or actual act of agression, every time she struggles with a mouthful of food or drink, every behaviour - no matter how small - is being documented in minute detail.
I went to see Mil after emailing Gething yesterday morning. This is odd to describe, but although she sems physically 'better' in terms of her breathing and her responsiveness, there is still a noticable difference in her, a decline that is hard to put into words. Her speech is just that bit worse and she seems more - well, I don't know if manic is the right word really, but in seconds she goes from laughing and giving you hugs to a sudden spasm, or to tears and repeating 'Mum, mum, mum'; or to suddenly shouting, or turning to the person next to her and grabbing them quite viciously, or suddenly trying to slide or throw herself off her seat, and it seems intentional. The staff think she is hallucinating a lot, turning her head or pointing to 'someone or something', talking unintelligibly as if responding to something said, even nodding her head in agreement. I saw that myself yesterday - Its so strange. The nurse told me that earlier in the morning, after it had taken 3 staff to assist her to walk to a chair, she had then got up and moved quickly enough to get through the lounge door as a cleaner was coming through, and had headed off down the corridor, banging on doors, screaming and fighting against staff who tried to get her back into the lounge. Shortly after that, the nurse watched in amazement (she said) as Mil slid to the edge of her seat, very carefully kneeling on first one leg, then the other, then carefully stretched herself out on the floor - and began rolling around. She has now done that several times, and its another massive risk as some staff have seem her appearing to roll towards residents who are walking round, as if to deliberately 'get under their feet'. I had to grin when the nurse described it as 'so bizarre' - took the words out of our mouths.
The nurse also told me that a lot of Mils medications have now been removed. She has the pain patch and sleeping meds still, and the quetiapine is being reduced. Her GP, despite there being no evidence of infection apparent from blood and urine tests, has now insited on a 'last blast of antibiotics', just in case there is something underlying, but after that - no more anti-biotics. So far, there isn't much change either in terms of her health getting worse or her behaviour improving. The general consensus of the nursing staff is that Mil is physically failing and deteriorating, and that we are still talking at the very most, weeks.
So - that's where we are up to. I don't quite know what to do next, to be honest. Until this meeting, we are in yet another sort of limbo. I am totally worn out and obviously we all feel really stressed, and even hopeless at times. The whole system feels geared against her, and its horrible.
Sending love and very grateful thanks to you all xxxxxxx
Dearest Ann,
Words fail me. Thank you so much for update. I don't know how you managed to find the time or energy to write it, but am so grateful. I know I'm far from being the only person watching and waiting with bated breath on TP. Am sending heaps of hugs and trying to dredge up positive vibes also. (Against overwhelming odds!)
My only observation apropos of the manager is that it seems to me these people get these jobs precisely BECAUSE they have hearts of flint and faces like iron masks and can resist ANY appeal, whether based on reason, or on evidence, or on social and community "values", or on simple human compassion. It's what they're there for, contrary to what one might foolishly assume - and they are very, very good at it.
Enough said. Thinking of you and family at this horrendous time.
Oh P.S: and, as for the new consultant giving your OH (and you) less than twelve hours' notice for a meeting?! Again, no words for this. Except to say I can only assume the plan is to make an offer assuming that you will be unable to fulfil it.
Sending strength to you.
Carolyn xxxxx
Is it because the HB are closer to the money, and know there isn’t any, or even being pressurised from above?
Whatever, it’s nonsense to say they need more proof. I bet they haven’t read through the 100+ pages that the home photocopied!
I’m so sorry, and annoyed, it’s come to this.
((((((((Hugs)))))))
Whatever, it’s nonsense to say they need more proof. I bet they haven’t read through the 100+ pages that the home photocopied!
I’m so sorry, and annoyed, it’s come to this.
((((((((Hugs)))))))
For Wales ????
Public health Wales committee for feedback
http://www.wales.nhs.uk/sitesplus/888/page/46740
People on the committee board
In photo. Main contact is mentioned under the Picture
Community Health Board
http://www.wales.nhs.uk/sitesplus/899/home
I think they might be the persons boss....
@Ann Mac - appalled by your issues. Yesterday I attended a speaker at a dementia cafe at our local hospice who is supporting dementia patients and carers. She was from the Older Peoples commissioner for wales office. They can intervene if having issues with local bodies etc. It might be worth contacting them to see if they can offer any help. They have a case team apparently. Google older people’s commissioner for wales and you should get the link to their website. Hope it is of some help.
Thanks for the update Ann. Like you, I am furious that MIL's needs are being ignored, despite overwhelming evidence and share your frustration that there appears to be nothing else you can do about it
(((hugs))) all round.
(((hugs))) all round.
Truly awful what your poor MIL is having to endure without the support of our "public guardians". You are magnificent - keep strong.
Your hubby and children are made of strong stuff too. (your youngest daughter is of a similar age to mine...so many similarities)
Sending you invisible everything i can.
Your hubby and children are made of strong stuff too. (your youngest daughter is of a similar age to mine...so many similarities)
Sending you invisible everything i can.
Hi everyone x
2jays, thank you so much. When I asked who I could go to for support, I was told only that I could contact our local health board if I wasn't happy with the CHC decision/actions. Complain to the health board about the actions of the health board, in other words, and expect them to deal with it fairly. It's not going to happen, is it? The info you have found for me, bless you, along with the suggestion from Harlech, gives me a lot more options - I really, really appreciate it xxx
Another glimmer of light - Vaughan Gethings' Office have actually replied! Or at least, a person from a Government Health and Social Services group, which is called 'Complex and Unscheduled Care' , which I have never heard of before - didn't know it existed.
"I am writing to acknowledge your email to the Cabinet Secretary for Health and Social Services, Vaughan Gething and to let you know that I have been in touch with relevant officials at the Health Board about the decision that was reached following your Mother in Law’s CHC assessment. We expect to have the health board’s response early next week and if there is anything we need to clarify with you, I hope you will not mind if I contact you directly before we submit our findings to the Cabinet Secretary. "
That was quick - and totally unexpected after the auto response I originally received. It's a case now of waiting to see if they just accept the 'we need more evidence' from the manager at face value, or whether they actually question that in the light of so many others - the care home staff, manager and nurses, the social worker, the consultant, ourselves and even the CHC assessor - arguing that there is already plenty of 'evidence', and the 1-1 needs to be in place urgently. Half my brain is saying 'No way can they ignore so many other professionals and her family' - the other half is saying 'You think? Just watch them!'.
Youngest has a rehearsal for her theatre groups latest show in Chester this morning, and I'll go straight from dropping her off to see Mil. OH is full of a cold, so though its his weekend off, it's best if he stays away from Mil at the moment. The oldest two are not down this weekend, though oldest dau is planning on coming down next weekend if she can. No idea if I will get to the CH this morning to find Mil in bed, sleepy and unresponsive, or up and causing chaos - her condition is swinging from one to the other by the hour, let alone by the day. My biggest worry at the moment is a return of the vomiting, which seems to come and go for her, as she is unable to sit herself forward, or call for help once it starts. The risk of her choking, of aspiration, is so high, the thought of that is horrific, and is really playing on my mind and also on OH's mind a lot.
A million thank you's to all of you, yet again, for all the hugs and good wishes and support xxxxxxx Love to you all xxxx
2jays, thank you so much. When I asked who I could go to for support, I was told only that I could contact our local health board if I wasn't happy with the CHC decision/actions. Complain to the health board about the actions of the health board, in other words, and expect them to deal with it fairly. It's not going to happen, is it? The info you have found for me, bless you, along with the suggestion from Harlech, gives me a lot more options - I really, really appreciate it xxx
Another glimmer of light - Vaughan Gethings' Office have actually replied! Or at least, a person from a Government Health and Social Services group, which is called 'Complex and Unscheduled Care' , which I have never heard of before - didn't know it existed.
"I am writing to acknowledge your email to the Cabinet Secretary for Health and Social Services, Vaughan Gething and to let you know that I have been in touch with relevant officials at the Health Board about the decision that was reached following your Mother in Law’s CHC assessment. We expect to have the health board’s response early next week and if there is anything we need to clarify with you, I hope you will not mind if I contact you directly before we submit our findings to the Cabinet Secretary. "
That was quick - and totally unexpected after the auto response I originally received. It's a case now of waiting to see if they just accept the 'we need more evidence' from the manager at face value, or whether they actually question that in the light of so many others - the care home staff, manager and nurses, the social worker, the consultant, ourselves and even the CHC assessor - arguing that there is already plenty of 'evidence', and the 1-1 needs to be in place urgently. Half my brain is saying 'No way can they ignore so many other professionals and her family' - the other half is saying 'You think? Just watch them!'.
Youngest has a rehearsal for her theatre groups latest show in Chester this morning, and I'll go straight from dropping her off to see Mil. OH is full of a cold, so though its his weekend off, it's best if he stays away from Mil at the moment. The oldest two are not down this weekend, though oldest dau is planning on coming down next weekend if she can. No idea if I will get to the CH this morning to find Mil in bed, sleepy and unresponsive, or up and causing chaos - her condition is swinging from one to the other by the hour, let alone by the day. My biggest worry at the moment is a return of the vomiting, which seems to come and go for her, as she is unable to sit herself forward, or call for help once it starts. The risk of her choking, of aspiration, is so high, the thought of that is horrific, and is really playing on my mind and also on OH's mind a lot.
A million thank you's to all of you, yet again, for all the hugs and good wishes and support xxxxxxx Love to you all xxxx
