So bizarre !

[DianeW]

Ann I always read every day for news, and just want to say how wonderful you are doing, can only imagine how upsetting and stressful it is for you and the family.

It sickens me that you have to fight so hard for what is so obviously a necessity for your poor MiL......

You have cared and battled for her for so long, be proud of yourself that you have done and continue to do the absolute best for your MIL.....in someways at your own detriment.

Your MIL is so very very lucky to have you on her side, not all vulnerable people are so fortunate.

As I said it disgusts me that at this stage in her life, MiL is being treated so unfairly.

I agree Ann...make it very clear you will hold the lot of them responsible if anything happens to MIL as a result of their decisions and will SHOUT IT FROM THE ROOF TOPS TOO x

 

[Ann Mac]

Thank you everyone, yet again, for the words of support - they do make such a difference xxxxx

I went to see Mil yesterday, walked into chaos tbh, as the admittance of 3 new residents, all with quite a high degree of challenging behaviour had the staff with their hands full. They had managed to get Mil washed and dressed, and into the lounge, but the TD symptoms were starting to build, jaw and tongue tics very evident, starting to impact on her speech and (at that time) quite mild spasms and writhing through the rest of her body. It slowly but surely was worsening, so I would guess that before the end of the day Mil would have had to have been placed on the bean bags again, as the only means of keeping her safe from falls and injury. Usually, they would have taken her to her room as soon as these symptoms started showing, but with no 1-1 till 12pm, and no way staff could be spared to try and cover it, keeping her in the lounge so she could be watched was the only option. She was in a pretty good mood, but her frustration at not being able to speak clearly and at the uncontrolable movements, was starting to show, and the noise and behaviour of the new residents was also getting to her. One gentleman kept banging on the table and shouting - 4 or 5 times Mil screamed at him to 'Shut up'. In the meantime, the two new ladies had the staff running round like the proverbial blue bottomed flies - one is very aggressive, I saw her hit out 3 or 4 times at staff. Another gets up and walks a few paces, before dropping to the floor - with staff runing from all directions to try and break the fall - or she will head to a staff who may be givng another resident a drink, and try and collapse on top of them. It was as close to bedlam as I have seen there, and a stark reminder of what the staff may have to deal with if there are several agitated residents at the same time. Fair play to them all, they kept - when they could - coming over to Mil and checking on her, but they were really struggling to give her the needed attention and as two of them actually said to me, it was a case of them being very glad I was there as the much needed extra pair of hands and eyes for Mil.

Senior carer, the lovely N was there, and I spoke briefly to her about the notes I needed - she asked, very apologetically could she phone the manager S (the assistant manager is now the actual manager) and arrange a time for me to go in on Monday to get what I need and talk with S. Given what they were all dealing with, of course, I agreed. In the meantime, N told me that the HBM had, it turns out, brought the threatened OT with her, and that they had discussed, in front of N, providing Mil with a bucket-style recliner and a waist restraint. The bucket style recliners are rarely used anymore, I'm pretty sure they are regarded as contributing hugely to the likelyhood of pressure sores these days - and I'd already spoken at length about the pros and cons of using any form of restraint with Mil with Dr J, SW and nurse L at the last meeting, with all advising that the use of restraints was absolutely not appropriate for Mil. Because, they agreed, the TD symptoms would cause her to become extremely distressed unless she was able to respond to the complusive need to move and writhe, because she was likely to pull at and try and get the restraint off, and there was a high risk of the strap and her attempts to pull at it causing skin tears, bruising, possibly deep wounds and because the writhing and compulsove movements are strong enough that she could still manage to slip down in the chair and therefore, the risk of any restraint catching round her throat and choking her was extremely high. I've also read several articles where the use of restraint in the elderly has been researched, and there are so many negative aspects to it, that I am hopeful that I can argue successfully against using it when (and it will be 'when', not 'if') the HBM tries to impose it as an alternative to 1-1.

N was also really upset at something else. The HBM had turned up shortly after Mil had woken. She had been very agitated the day before, a lot of TD symptoms, and had finally fallen into one of her very deep sleeps. Staff just let Mil sleep as long as she needs when this happens, they are aware that the TD symptoms are exhausting for Mil, they have spoken to me several times about letting Mil sleep till she wakes naturally on these occasions, and I agree that its better not to disturb her. When the HBM arrived, N had been giving Mi her first drink of the day, N explained that Mil was reluctant and it had taken her quite a while to get Mil to drink just half of the 400 mls of squash that N was trying to get her to take. When the HBM arrived, N obviously had to stop, and at one point she left the room to help another member of staff. The HBM then reported to S that she had checked Mils fluid chart during this time, and that Mil hadn't had a drink for 14 hours - N hadn't filled in the fluids chart at this point, simply because she intended to continue giving Mil the drink once the HBM had left. The HBM - despite the fact that N was giving Mil a drink when she arrived, and despite the fact that the half finished drink was there, insisted that as it wasn't charted, Mil can't have had anything. I presume her intention there is to blame Mils behaviour on dehydration and try and claim the staff are responsible or negligent. I was fuming at the upset this had caused N, and at the HBM's blatent attempt to twist facts to suit her need to find anything at all to remove the 1-1. This evil *$%&^ will stoop to just about anything in order to have her way - and I think 2jays, Red, Lemony and the rest of you are right, she is determined to 'win' as she see's it, its a personal challenge for her, and in her arrogance, Mils actual needs and well being clearly don't feature at all.

Lemony, I have also been wondering if Mil being in some sort of hospital unit would be more cost effective and if that's what this creature is aiming for - that would tie in with her wanting Dr R involved - because he had, prior to him leaving, suggested that could be an appropriate 'next step' in Mil's care.

I stayed as long as I could, but had to leave 30 mins before the 1-1 kicked in, because youngest was in a show at Theatre Clwyd last night, and I was on car pool to drive her and 3 fellow show mates to the venue. I'm going in today at 10, and staying till 12 when the 1-1 can start again. I wish I could do that every day, because yesterday showed me how impossible it is for the staff at the moment, but obviously, with work, I can't. I'm taking a very early 'lunch break' tomorrow, to go in and get the copies of the paperwork I need, will have the email to the mister ready today, and just attached the paperwork and send it as soon as I get back from the CH tomorrow.

As a side note, daus show last night was amazing - the 13 to 18 year olds from 4 theatre school branches in the area were in a production called 'Life' where they performed songs to reflect the '7 ages of man'. They treated us to everything from 'The circle of life', to 'smells like teen spirit', to 'when I'm 64'. Fom start to finish, it was fantastic - there is some serious young talent between the 4 branches. The show stopper was a wee girl of about 16, who sang the Carpenters 'Goodbye to Love' and pretty much reduced everyone to tears. As always, I was the volunteer photographer for the performance, so today, I have a lot of editing to get through.

2jays, I am glad you are on the mend - supervision rather than doing stuff yourself is definitely the way to go

Much love to all of you, will update you when I can - and again - thank you xxxxxx

 

[RedLou]

Does the system allow for the HBM and the OT to visit MiL on their own without the permission of the holder of Health and Welfare?
[If they did not visit MiL and merely looked at notes, how can they properly assess her needs?]

Also, I think the HBM will shoot herself in the foot if she tries to argue dehydration. N has informed you that MiL was being hydrated but she was unable to record this, so her argument is easily shot down and the fact is manipulating the facts is exposed. Or -- as MiL is resistant to hydration and dehydration is - according to HBM - playing a part in her behaviour then does it not follow that she needs 1:1 in order to be hydrated?

 

[Oh Knickers]

Good morning Ann,

It is frustrating when someone behaves in the way that this HBM woman does. However, it very much sounds as though she is preparing a case. Unhappily in these situations, it can feel very unfair, but it is following the law. The nurse, N, should the HBM arrive again, follow all procedures in full view. 'Excuse me, I have been called to help with another resident, however, I need to ask you to move so I can fill in the drinks chart.' type scenario. This is turning into a tick box scenario and has legal implications. Good intentions and compassion are not on the tick box. In part due to what has happened in other homes which can be frightful and only come to light later.

I used to teach and had experience of what schools would do prior to and during OFSTED inspections. One school, during my training, ensured that the really disruptive pupils were excluded for the 2 day inspection. In addition, I was asked to work out of sight as my views might have been asked which could have given a poor insight into the school. For example, during a fairly useless course, out of a class of 48, 8 were left at the end as the rest had jumped out of the window. Teaching staff would be swapped round so lessons came across better etc etc. So a certain cynicism creeps in.

You are doing all the right actions in terms of gathering evidence. Gather as much as you can. One point to raise, Dr R, sounds as though he was 'invited' to leave the NHS. More particularly as he is no longer working in the UK. So, it is how to manage a discrete annihilation of his treatment and, more pertinently, his prescribing. Might be worth having a brief update with
Dr J.

In terms of prescribing this might come in useful: https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5472076/
and this:
https://www.mind.org.uk/information...-problems/tardive-dyskinesia-td/#.W0HEqvlKjIU

If you can cross reference, and you have such an easy, low hours job (!), the drugs and the symptoms, particularly the huge amount of drugs your MIL was prescribed by Dr R and the contraindications. HBM might be like to explain her reasons for continuing to refer back to someone who has not only left the service of the NHS but the country as well. Let alone ignore the advice of a senior medico, Dr J, who has had to step in to pick up the pieces.

The other small task is to follow the guidelines to the letter and see where HBM has crossed the line. Other good points raised are POA and permissions which have already been raised by other posters. Could Mr Mac help with the cross-referencing of drugs?

In the famous phrase, don't get mad, get even.

My thoughts, along with many others, are with you on this.

 

[Ann Mac]

I don't know where else to take this other than to those who I know understand.

I'm sat here crying, and not sure if its temper or just sheer heartbreak at what I've seen this morning.

I arrived at the CH at 10.30, and walked up to Mils room to find her lying on the bare floor, have kicked the mattresses and bean bags out of the way, face down and naked from the waist down. She had removed pad and short pj bottoms, and the long night shirt was pulled up to just under her breasts. Her door was wide open, giving the gentleman who had arrived at the same time as me a clear view of her mostly nude body, and she was calling for help. The staff had checked her 15 minutes beforehand, she was fast asleep . They were one man down, plus no 1-1 for Mil until 12, and they also had an electrical fault which was causing smoke to pour into the corridors further along from Mils and they were waiting for the fire brigade. One of the staff was able to come and help me - but not before I had her nightshirt pulled down to cover her nudity, and -and I feel awful admitting this - I had taken a picture of her on the bare floor.

It was chaos - I had to help the one staff who was was able to give the time to get Mil up and into clean pad and clothes, then as a precaution, we were moved to the sensory room which has doors leading to outside in case we needed to evacuate. There was no way that Mil could be washed, and if I hadn't been there, I don't know how the hell they would have managed to get her a drink or food. There was no way that anyone was free to do more than check on her every 20 minutes or so whilst they waited for the 1-1 staff to arrive. She was still displaying TD spasms and writhing, I had to get help to reposition her twice, and spent most of the time with me using my body to block her onto a sofa and stop her falling.

I am so furiously angry that I honestly feel like punching a wall. The photograph and an account of this is going to the minister first thing in the morning. If 1-1 isn't restored immediately, then its going to the press, with the video's that I have taken. I'm just passed it now, lost the plot completely. How can treating someone like this possibly acceptable, just to save money? It goes against every standard of basic care and decency that there is.

 

[2jays]

Oh Ann

Heartbreaking. Utterly heartbreaking

Words seem so useless to express my sadness for your situation

Hugs xx

 

[CeliaW]

Oh Ann - this is so wrong for all of you. No wise words, just a huge supportive hug xx

 

[Amy in the US]

Oh, Ann, I am so sorry. Anything I can say is completely inadequate to how you must be feeling (you plural, I mean, as Mister Mac must also be angry and heartbroken).

Please don't feel awful about telling us, how it is. We are here to support you, not judge you, and in your situation I would be doing exactly as you are: fighting to give MIL the best care possible and what she needs. This is all you have ever wanted and what you have been doing all along. You have done nothing wrong and I know how important it is to you, to do whatever you can for poor MIL.

I am sorry it has been such a long and heartbreaking journey.

I hope you can find a way to get the time and energy you need to deal with this. In the meantime, don't ever feel you need to apologise to us. We are here for you!

Masses of ((((((hugs)))))) and keep us posted, please, when you are able.

 

[Herewego]

Ann, like many others, I have read your posts for quite a while now. What has impressed me is the care and thought, never mind the huge amount of personal care, you have provided for your MIL.

I echo what Celia has written and would go further. May I suggest you write to your local MP and Jeremy Hunt, Secretary of State for Health and Social Care? I would also provide a link to your posts here as an educational link.

If organisations making decisions are playing hardball just show you are prepared to play even harder. Copy the contact names to the above as well. For your MIL's care home to spend the huge amount of hours photocopying their evidence is a testament in itself.

Very best of luck.

Oh this whole saga is soooooo heart-wrenching, annoying and a number of other expletives not printable!

I would suggest getting in touch with the national/local paper - this is a story that should be told!

 

[Spamar]

(((((Hugs))))) Ann. Something like this, without the fire/smoke, was bound to happen. The blame is with the HBM. Yes, go public, or at least to the minister. There is a much loved lady, who is being abominably treated by someone who know nothing. Hugs for Mr Mac as well, he can’t be feeling too good about this.

 

[RedLou]

You are so completely doing the right thing. You are fighting for MiL out of love, but you are also helping numerous other people you don't know, whose future dignity would otherwise be trampled upon by HBM. Remember that those who are supporting you here are those who know about dementia. We are the people who have informed opinions. You are an amazing woman and an amazing advocate for MiL. xxx

 

[CeliaW]

Perfectly said Red, thank you.

You know you have support here Ann, in whatever way we can give it xx

 

[Moggymad]

Hi @Ann Mac i agree definately go to the press. How many more people is this woman denying much needed help to I wonder. If it's made public they may well respond to the media as well & I would even consider legal action. Perhaps she's after a bonus! It should all be sent to the people above, are they even aware of her reducing the 1-1 hours? It's a disgrace & they should be named & shamed

 

[Herewego]

Ann I do so feel for you - my OH has Dementia too and has just had a 5-6 week very steep downhill period, and I looked after my MIL when she had Dementia (while with 4 young children, no other family and working full time while doing my MBA) so really do know how juggling care with work family etal can be so tiring - at the time my husband referred to Social Services as the SS!

My blood boils when I hear what you have had to go through for your MIL I am amazed you have not been to the press yet - you need to go now and take this woman down!! Trying to balance the books for her department is no excuse for her behaviour, she clearly has an agenda and plans to carry it out come hell or high water.

I don't know your personal (or your MIL's) circumstances but I would suggest you look into engaging a legal practice (a specialist one) and tackle this - they may agree to take your case as Pro-Bono (free) as it is likely it could become quite high profile and would provide great exposure to the firm taking it on. I would also use a multi prong approach via MP's, Local, Councillors etal as well as legal and the press.

People like your woman rely on the non-confrontational nature of the patients relations who are both physically and emotionally exhausted and the relatives/carers - with the best will in the world will try every avenue before turning to the legal / press route - but some times and some people don't hear anything else and will drive rough shod over rules, directives or anything else if they think they can get away with it.

Sorry - a bit of a rant - I get sooooooooo annoyed at what I perceive to be people who have an inflated sense of power and appear to get away with treating everyone (their staff as well as patients and colleagues) with contempt - just because they can.

 

[Spamar]

Red couldn’t have spoken truer word.

 

[Slugsta]

Evening all,

Ann, I am so sorry that things have gone so far awry with MIL and her care. We know that you only motive has always been to ensure that MIL get the very best care possible.

I am utterly furious about the actions of HBM who, IMHO, is going far beyond the remit to manage resources as well as possible whilst ensuring that patients/clients get the care they need. I really hope she gets what she deserves - which I believe is to be drummed out of her job with the maximum publicity, to try and stop this happening to anyone else.

Please let me know if I can help with looking up side effects of drugs etc.

Sending lots of (((hugs))) to the whole Mac family.

 

[2jays]

Read this on care to be different

1. Roger Burgess 4 months ago
   
   I have been advocating for many years that the ‘impartial’ co-ordinator should always remain impartial. Impartiality means exactly what it says, the word impartial is clearly defined in the English dictionary. This means that whoever the co-ordinator maybe they MUST NOT be allowed to takes sides, or have any direct input regarding an individual NHS Continuing Healthcare (CHC) status, otherwise they would not remain impartial and the whole and process becomes completely unfair, unreasonable and above all undemocratic, it also means that the assessment process is heavily weighted in favour of the CCG.
   
   Therefore the minimum requirement at an Multidisciplinary Team (MDT) meeting would have to be two individuals from different healthcare professions, or one from healthcare and one ‘from social services and in addition an ‘impartial co-ordinator, this forms the basis of a democratic process, The use of the impartial co-ordinator is repeatedly echoed in other NHS related documents.
   
   Failure to recognise the importance of any impartiality within the CHC process means that the individual undergoing the assessment is clearly at a disadvantage and far to often left to the mercy of sometimes unscrupulous and corrupt CCG / MDT members, who willfully deny would-be eligible individuals with ‘primary health needs’ the status to which they are legally entitled, this is mainly carried out to protect budgets, unfortunately at the expense of vulnerable individuals.
   
   When an individual has a primary health need which is mainly determined by their actual needs in relation to the Nature, Intensity,Complexity and Unpredictability of their care requirements and any one of these alone could indicate a “primary health need”. The NHS have a duty to award continuing healthcare to anyone who has a primary health need, it is not a discretionary option like so many NHS staff seem to believe it is

 

[emp]

Oh Ann this is just terrible!!! Poor MIL. I don't have any words of advice to offer you, but sending both you and Mr Mac warm hugs

 

[Ann Mac]

Thank you everyone, yet again x

I sent the email, with the photograph of Mil on the floor, to the minister on Sunday afternoon. I didn't pull any punches, I outlined the situation, pointed out that HBM had ignored the CHC framework and said we had had enough. That we would hold the HBM and health board resposible if Mil suffered any more injuries or indignities as a result of the HBM's actions, and should that happen, we would take whatever action we felt was appropriate, legal or otherwise. I pointed out that one of the reasons Mil needs 1-1 is because of the TD and that had also been caused by the actions of consultants' employed by the health board. And that I have several images and videos that document Mil's condition and that not only was I happy to share them all with the minister, but should I feel it necessary, I was prepared to put them out in the public domain, as I felt that the patients served by the Health Board in the area have a right to know just how it treats elderly, sick and vulnerable people.

I let him know just what I thought of the HBM - callous, unprofessional, lacks the capacity to understand the framework of the legislation she is supposed to be responsible for applying, refuses to take on board the opinion of experts because she is clearly driven by budget and costs, not people, etc.

I also referred to the HBM's 'grasping at straws' in terms of her trying to blame infections or dehydration for Mils condition and behaviour, how she seemed to be considering restraint as an option and also mentioned her insistence of involving Dr R, though he is not longer employed by the HB - and said that none of that was acceptable. I said I wanted the 1-1 back by no later than Tuesday morning - adding if HBM could remove the care with less than 24 hours notice, then I assumed she would have no problem restoring it within the same time frame.

9 am yesterday morning, I rang HBM - after a few moments wait the secretary told me she was in a meeting. Didn't believe it for a minute. She asked could she take a message? So I then pretty much said all I had said in the email, adding that I was totally disgusted with the HBM - that she was a disgrace and that I should I be forced to go the the press, I would have no hesitation in naming and shaming her personally. I said that Dr R would not be admitted to the meeting, that Dr J was to be invited instead and that there was to be no mention of infection, dehydration, the use of restraint or any of the other bits of nonsence that HBM is using to muddy the waters and as an excuse to remove Mil's care.

Just before 9.30, HBM phoned me. I told her that I had given all the info to her secretary and that I actually I found her and her behaviour so disgusting that I would prefer not to talk to her at all. She said she just wanted to let me know that the 12 hours 1-1 was back - with immediate effect. That she had phoned the home and sorted it. I can't remember everything said during the conversation - I don't think I swore, but I definitely told her what I thought of her, and that I would be making a formal complaint about her. I asked her how dare she remove Mils care in the face of expert opinion and with no justification. Got a lot of stuttering and feeble bluster in response. She asked 'What if Dr J couldn't make the meeting?'. I suggested that she, the HBM, had better make sure Dr J could - perhaps by putting in some of the effort she had been expanding to stop Mil receiving essential care? She did try to engage me in a longer conversation, but I just said that I had told her what I expected to be done, and the consequences that would happen if it wasn't and repeated that I found her so disgusting and unprofessional that I really didn't want to even speak to her - and hung up on her.

Got to the home to find she had rung them twice. In the first phone call, she had told S (manager) that the 1-1 was being restored for the full 12 hours. In the second phone call, she told S that firstly she is 'allowed' to remove care like that if she thinks there are grounds to do so (!!!) And then she claimed that she had told one of the nurses at the home that she was 'just seeing' if it was possible to remove the 2 hours care, and that she had told the nurse that if there were 'any problems' they could contact her and she would put it back. S told her it was very strange that the nurse had neither recorded not passed on that information - and added that it was equally strange that the HBM hadn't put that in the notes that she had writted in Mil's care plan, saying she was reducing the 1-1 hours. She is a lying ******* (insert your own description - I have so many, but none I dare write on TP). I do not believe for one minute that she said any such thing - she is just trying to cover her own back.

So - 1-1 back for now. I spent an hour photocopying and photographing notes and reports from Mil's care plan - discovering that the DST from the CHC meeting wasn't in the file (although its supposed to be) because the HB had not sent a copy of it as they are supposed to (something else for me to chase up) - that of course, would show the scores awarded by the original assessor and his notes - which the HBM I guess, would be very happy not to share.


I am so drained and cross still - glad the 1-1 is back, but no sense of triumph, because I can't get passed that it shouldn't have been taken away in the first place, nor can I 'celebrate' getting it back when I think of what haapened to Mil in order to acheive that.

I just wanted to update you all asap - you have all been so amazing, and I am so grateful for you all xxxxx

I have 4 really full on work days ahead for the rest of this week - today off to Ludlow, tomorrow in South Snowdonia for the Cadair Idris Climb, projects on Thursday and Friday, and a shed load of admin that I have no idea how I am going to fit in. But I will try and pop in and catch up with everyone elses news soon, I promise.

Love to you all xxxx

 

[Bunpoots]

I'm absolutely appalled at the way your poor MIL has been treated and the face of that woman!!!

Is she even human?!

Well done you for finding the strength to fight!!