So bizarre !

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
Totally disgusted

Ditto

Would it be feasible, possible, to contact new consultant about this idea of involving Dr R in the meeting and find out if they can over ride Dr R being consultant of choice by HB manager and have their input to the meeting?

Ahh sorry, just read you have the same idea. It might be worth giving new consultant a heads up that this meeting is being arranged

So pleased that mil enjoyed her fish :)
 

Oh Knickers

Registered User
Nov 19, 2016
500
0
Good morning Ann,

This is a ridiculous situation and pure politics and delaying tactics to try and wear you down. To involve the old Dr (he is not a consultant as he is not a Mr) is insulting to all the efforts you and your MiL's care team have gone through and have tried to sort out. What is even more insulting is the Mr's claim that MiL now is suffering brain damage as a result of his own prescribing!

Sadly, having gone through various other life events I learnt it is better to get even rather than mad. The more you can do to come across as balanced and meticulous, the better. You are already doing a fantastic job.

I hope this is alright, have been a long time reader and stood back in amazement and respect at your organisational abilities, there are a couple of suggestions. I appreciate you must be feeling cross and drained and do not want to push any more.

Firstly, write a summary of the phone call. I note the woman does not appear to have given anything in writing. That, frankly, smells, as she can wriggle out of anything she has said. Send her a summary just to 'check your facts' with her. Also, send that summary to Mr Gethin.

To add grist to your mill, sorry to suggest this, send the list of the medications to the Pharma manufacturers and ask them for any comments on the multiple prescribing and claims of brain damage. The fact you can say you have done it tends to get a level of concern that can concentrate minds as it smacks of going down the legal route. Mind you, you could just raise that you are considering doing so.

If that appears to be too much of 'legal route' is there anyone who can help you find a consultant geriatrician who can give an input and comment on what has occurred thus far? I have found: http://www.bgs.org.uk/. There are abstracts on there which will give names.
UCL (University College London) has this: https://search2.ucl.ac.uk/s/search....ry=geriatrician&profile=_website&tab=websites

You MiL has a legal right to a second opinion. Many moons ago I worked as a Medical Secretary in a health centre. One patient had a clear broken leg but did not believe the diagnosis and insisted on a second opinion as he was fed-up with his cast. He got sent to a Harley Street specialist who confirmed the diagnosis. Now that, in the sceme of things, is minor compared to what you MiL is going through.

Power to your elbow and wishes of success.
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
Oh Ann! It is not often that words fail me, but it seems to be an increasingly common phenomenon when trying to respond to your posts. It is upsetting even to imagine MIL's distress and the toll this is all taking on you (((hugs)))

Yes, I do think the new consultant should be alerted asap. He will be a busy man and might not be able to drop everything and attend the review at short notice. The more warning you give him, the better the chance of him being able to attend. If it will be impossible for him to get there, could you ask for a copy of his records and/or a letter outlining his opinion about the previous treatment? Anything that shows Mr R in a poor light will be helpful to you.

I am so glad that MIL was calm when you visited and enjoyed her fish and chips :) Another good thing about the 1:1 is that the person with MIL can take as long as needed to help her eat, they will not be under pressure to rush off and see to anyone else.

(((hugs))) to all.
 

Slugsta

Registered User
Aug 25, 2015
2,758
0
South coast of England
@ohknickers - the new consultant is the one who believes Mr R (he is a consultant physician, thus a Dr, but Ann refers to him as Mr to differentiate from MIL's GP) caused many of the problems by over prescribing. This new consultant seems to be on the ball and Ann is going to try and get him to attend the review meeting.
 

Prudence9

Registered User
Oct 8, 2016
478
0
Totally disgusted too Ann. If that manager put as much energy in to caring for vulnerable people and keeping them safe as she does in twisting and turning to save money then what a service you would have in your area!

If you can find the energy, I'm another who would recommend contacting the newer consultant and following up with an email for The Trail.

Sending you as much support as I can possibly muster in this continuing struggle. Xxx
 

RedLou

Registered User
Jul 30, 2014
1,161
0
Firstly, do you have an email for this woman? If not, my advice would be that you contact her on the direct line, ask her for her direct email and say you wish all interaction to be in writing in the future - should she not wish to do this then you will assume she gives permission for all telephone calls between you to be recorded.

When you have the email, slap in a Freedom of Information request for all correspondence she has, including emails and notes of conversations, pertaining to MiL. There is nothing like a FoI request to put the wind up these people, in my direct experience.

Do you have the right to refuse the old consultant being involved on the basis you have no confidence in him, so would reject any opinion he offers? Can you refuse the OT from her department and insist that an independent OT is found? I just don't know how the system works. I'd be tempted to put in writing that if seating is suggested and provided that proves unsuitable and MiL comes out of said seating and injures herself, you will take the matter through official and legal channels.

Finally, take heart from the insincere sweetie-pieness. You've got her rattled. If she gets any further rattled she may just go away and seek her savings elsewhere. (Would a pay cut be too much to ask?! :rolleyes:)
 

CeliaW

Registered User
Jan 29, 2009
5,643
0
Hampshire
Ann, my initial reaction is to suggest you copy your 2 posts from today into an email to the minister (Gethings?) that you contacted. Your post is heartfelt and sincere and no-one could fail to see that.

I am so sorry this continues on.

Hugs xx
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Definitely got that woman rattled. Wouldn’t trust her an inch/ 2 cm!

My own problem is that, on receiving and checking the latest bank statement, there are several items on it that are none of my doing. I haven’t lent my card out, I don’t live with anyone, I have never written the pin down. So, several lengthy calls to the bank fraud squad. They have said I will get the money back, but, naturally, have stopped my card. Luckily, I had taken out cash last week, so no problem there!
So now I wait for card and pin.

There’s always something! My mobile gave up the ghost last week, got another one, but thought it was unfit for purpose, but found a few more things on it this morning (!), so now I guess I’ll cope. I wish they wouldn’t write the instructions in such small print, we haven’t all got 20/20 vision!

Ann, hope things get better from now on, but watch out for that woman!
Red, you must be such a proud grandmamma!
Everybody, have as good an evening as possible!
 

jugglingmum

Registered User
Jan 5, 2014
7,110
0
Chester
Ann sosorry to hear about latest kerfuffle.

Only thought is if you or oh has h & w poa can you refuse for dr r to have any involvement in MIL'S care. It would seem a fair use of h & w poa.

I think foi request seems good suggestion as well.
 

2jays

Registered User
Jun 4, 2010
11,598
0
West Midlands
Love to all the Mac’s

Just an aside. My daughter had problems with PayPal. Someone cleared her bank account through PayPal. Luckily she noticed very quickly and has been refunded the money.

I immediately tried to close my PayPal account but for some reason was unable to, so I closed the direct debit at my bank

Just received an email from PayPal telling me that they cannot pay outstanding payment as I need to authorise with the bank....

Not me requesting a payment to be made... can only think it’s a scammer
 

Spamar

Registered User
Oct 5, 2013
7,723
0
Suffolk
Seems to be a lot of it about!
Got my new card in the post today, but it doesn’t say anything about new PIN number, just go out and use. Really? Forgot to bring it with me ( I’m out for lunch), but I’m sure the bank will tell me!
 

carolynp

Registered User
Mar 4, 2018
569
0
Echo the sentiments from Amy and Slugsta.

Just a (hopefully cheering) photo to share, too. Three months old, tomorrow.

View attachment 59391
This baby! Gorgeous from the moment she was born and now such a character too! The gleam in those eyes. Can’t believe she’s three months already.

Sorry to be three days late with response, but huge thanks for fabulous photo, she’s made my day. C. xxx
 
Last edited:

carolynp

Registered User
Mar 4, 2018
569
0
Whoops - pressed post before finishing!

The CH manager wasn't impressed. As she said, before asking for 1-1 support for Mil, they had investigated and tried so many alternatives. They had looked at seating, at finding a type of chair that would prevent Mil either inadvertantly writhing to, or deliberately throwing herself to the floor. There isn't anything. The writhing and jerking is so violent that she has come out of every single chair they have tried when the TD symptoms are bad, ditto her strength and determination are so strong that she has found a way to throw herself from every seat they have tried when she is agitated. Recliners and bucket seats add to the risk, as an injury is likely to be more serious if she is going over the side of a seat because it is reclined back - something she has attempted to do when they have tried this style of seating, only the intervention of staff has prevented her falling. Because she still has the ability to get up and walk, on occasion, and because of the potential for causing her distress, restraint is absolutely not appropriate. If she can lift her legs to throw them over the side of a chair, she can do the same with bed rails, meaning she can still get off a bed with them in place - just she would have further to fall and there is the added risk of injury due to her bashing her legs against metal rails too. Cushions, padding, slip mats, raising her legs - been tried. If there had been a type of seating, or a stratagy to stop her ending up on the floor and prevent the risk of injury, it would have been used - the whole point of this has been to keep her (and others) safe, and I really don't think that there is anything that the CH haven't tried. Distraction or re-direction doesn't work, particularly when its the TD symptoms causing the writhing and falls risk - she has no control at all over that. And no seating exists that will make any difference to the other issues - the violence, the risk of injury to staff and residents - unless they propose pretty much tying her into a chair, despite the fact that her mobility and the potential for distress makes that a big fat No. No type of seat will stop the choking risk if she vomits. It won't stop her screaming and upsetting the other residents in the lounge, it won't stop her pulling at her clothes and exposing herself. Unless she is tied down to a bed, bed rails won't stop her falling out of it. 1-1 is very much the last resort. And, at the end of the day, what the CHC board don't seem to understand is that all of us would much prefer that it wasn't necessary, that she wasn't in this awful state that has made it essential.

Mr R's re-involvement is another cause for concern. His last take on Mil was that if medication didn't work, then the 'only solution' was that Mil would have to be placed in an 'alternative setting' . As the CH said, the only 'alternative setting' is a secure ward, something that we, they and the new consultant believe would cause her incredible and unacceptable distress. But there is concern that he will argue for that, and if the manager see's that as a way to save CHC costs, she may push for it too, under the guise of Mr R, having been Mil's consultant for over a year, knows what is 'best' for her.

So - Mil has the care for now, but it looks like it is not going to be easy to retain it for her. I am so weary and fed up of having to be ready to fight. And exhausted with the constant going from relief that an issue seems to have sorted, to sudden misery when you find out that actually, no - it is far from being sorted at all. It's mental and emotional torture. I am hoping that the new consultant, who everyone thinks so highly of, will agree to attend the CHC review too - I think we need someone with as much 'clout' as Mr R, to speak on Mil's behalf. I'll ask at the meeting next week.

I visited Mil yeserday morning, after phoning and being told that she was calm at the moment. She had been agitated during the morning. In between her obs yesterday morning, before the 1-1 kicked in at 10a.m., Mil had removed her clothing and pad, and smeared herself and the bean bags with faeces. This is the 3rd time this has happened in the last 5 days, a new issue and one that leaves her very distressed and agitated. Just when you think dementia has taken every scrap of dignity from her, that it can't take anything else, it throws something else into the mix.

Twice in the last week, the topic of fish and chips had come up during visits to Mil, and each time she had responded with obvious pleasure at the idea. So after finding out that she was calm (and therefore more likely to eat without choking) I turned up at lunch time with fish, chips and mushy peas for her. The portion was huge, so I donated half of it to another resident, and chopped the rest finely, before giving it to Mil for her lunch. It took over 50 minutes for her to eat it, but boy - did she enjoy it. It was so nice to be able to give her something that brought her obvious pleasure. It may not be so well received if I try it again (though for some reason she is currently more likely to eat for me than anyone else) but I am so glad she has had the enjoyment of eating her favourite take away at least one more time. I did note that she was 'pouching' on several occasions whilst eating though - giving her a drink helped to overcome this, and I noted it in the hourly log that is being kept, and which I've been asked to contribute to when I visit. She remained calm for most of the 1 1/2 hours I was there, just one occasion when she suddenly sat more upright, pointed to the end of the room and gave someone or something only she could see a really angry telling off - or at least that's what it sounded like, couldn't make out any words, it was just the tone that indicated she was cross.

If at the CHC review, they come up with a suggestion that we haven't tried, and has the potential to help her, then I will agree to it - providing the 1-1 care is NOT removed whilst it is being tried. This isn't about insisting on high level care for the sake of it, it's about just getting whats needed to keep her safe and comfortable. If there is an alternative that works just as well as 1-1, why wouldn't we agree to it? The HB and their manager don't seem to realise this, they just can't see the person at the heart of it all. Its all about the money for them.


Love to you all, as always xxxxx

Ann I’m sorry not to be saying anything but I simply haven’t got the words. Totally disgusted about sums it up for me too. May I just send you my most heartfelt good wishes and tsunami sized waves of support to you and family. Also very, very impressed with daughter’s intitiative, empathy and follow-through. Love C.
 

LadyA

Registered User
Oct 19, 2009
13,730
0
Ireland
Love to all the Mac’s

Just an aside. My daughter had problems with PayPal. Someone cleared her bank account through PayPal. Luckily she noticed very quickly and has been refunded the money.

I immediately tried to close my PayPal account but for some reason was unable to, so I closed the direct debit at my bank

Just received an email from PayPal telling me that they cannot pay outstanding payment as I need to authorise with the bank....

Not me requesting a payment to be made... can only think it’s a scammer
Aw no, @2jays ! :(
 

Ann Mac

Registered User
Oct 17, 2013
3,693
0
Morning everyone,

Again, massive thanks to each and everyone of you for the support and advice xxx

Spamar, so sorry to read about the hassle with the card. There do seem to be a lot of incidents involving fraudulent use of cards happening at the moment. Oldest dau had her card used to purchase several things on-line, about 2 weeks ago, and both her pay-pal account and email were hacked at the same time. She spotted it quickly, thank goodness, and got it sorted, but such a pain in the btm to deal with. Sending {{{{hugs}}}}

I will be emailing the HBM (Health Board Manager) probably on Wednesday afternoon, but before I do that, I need to speak to Mil's new consultant on Wednesday morning, Dr S, at the medical review. Firstly to ask if she can attend the CHC review next month, and secondly, to get her opinion on the points raised by the HBM, which I think (and the CH think) she is likely to use to try and remove 1-1 care. Specifically, the suggestion that Mils behaviour has been caused by recurrent infections, and the insistence that an 'in house OT' should see if they can come up with some sort of seating that will stop Mil ending up on the floor, either through deliberately throwing herself to the ground or through her writhing, wriggling and jerking herself off the seat, due to the TD.

There is plenty of documented evidence that infections, whilst they may have caused some worsening of the behaviour when Mil has had them, overall have had nothing to do with the decline that has led to the need for 1-1 . That need is down to the TD, and the increased psychosis caused by a combination of the dementia and over-use of meds. I've already explained this to the HBM, as have the CH and even the CHC assessor who came out to see Mil, but she seems inclined to ignore and ride over what we have said - I think it needs the clout of the new consultant to get through to her. My big concern here is that the HBM and Dr R may try and insist on more medication, possibly in the form of extremely strong anti-biotics. Struggling to find a way of writing exactly what it is that worries me about that, and a little worried about how it might come across. But - taking a deep breath - I'll be blunt. She is dying. Declining physically, getting frailer, breathing getting worse, and basically slowly but surely her body is 'shutting down'. That's the opinion of the staff, nursing staff and her new consultant. And I can see for myself that they are right - it may be days or weeks away, but its happening - and I hope that everyone understands me saying that its time now, that this is what is right and best for her. She has been through enough. To give her continuous strong antibiotics could prolong this process for her, whilst at the same time give unpleasant side effects, upset stomach, vomiting, etc. And will probably do absolutely nothing to relieve the TD symptoms or agitation. I feel so strongly that at this point, all emphasis should be about making this last part of the journey as comfortable and comforting as is humanly possible - not experimenting with yet more meds that could extend and make this stage horrendous for her.

The talk of an OT to look at 'chairs' worries me. After the CH trying out alternative seats that would prevent Mil ending up on the floor, and not finding anything that she couldn't get out of, the only thing that seems to be left is to look at restraint, particularly as one of the issues is Mil falling from her bed as well as chairs. The CH - and I - guenuinely believe that if bed rails are put in place, Mil's strength and ability to 'thrash' her legs and arms around will lead to probably injury, and possibly, her managing to throw her legs/body over the rails, and her ending up with an even more serious injury due to falling from what amounts to a greater height, or banging herself on the rails as she falls. As for a waist strap or similar in a chair, the huge concern there is that it will cause her immense distress and agitation, and the poor woman is distressed enough - to take action that would almost certainly increase her misery and upset is cruel. She already has a tendency to gouge at herself, and pull her own hair out when she is frustrated and upset, there is real concern that preventing her from moving from her seat will increase the liklihood of self injury, and also increase the incidents of her hitting out at staff/residents if they get within her reach. She is still considered to be 'mobile', because she can still get herself up and walk on occasion. Because of this, as I understand it, any form of restraint would be usually considered totally inappropriate, especially as restraining someone to a bed or chair increases the risk of bed sores, and her skin integrity is already compromised as a result of skin tears and severe bruising. Again - an 'experts' opinion on this will, we think, carry more clout than anything we say.

If the HBM comes up with anything that may make Mil's quality of life better, then I am more than happy to consider it. But, there are two major obsticles to taking that approach. Firstly, the worry that if we agree to try something new, that the 1-1 will be withdrawn before we know if the 'suggested solution' works or not, and then we will face a huge battle to get 1-1 back. And secondly, by far the biggest concern is knowing that anything the HBM suggests is going to be based around saving money. No matter how skillfully she tries to present her suggestions as being in 'Mil's best interests', we all know what her bottom line is.

The email will also say that I have 'no confidence' in Dr R, in light of the concerns raised by the CH, and request that he is not involved. I don't know if the HBM can ignore/over rule that request - it seems like she can interpret the rules and make decisions as she wants, no matter what I or anyone else thinks - but I want a paper trail of that request being made. In the meantime, I have asked the CH to provide me with the notes that pertain to how many times they approached Dr R for help and advice, and his responses. I have only seen a few so far, none of them show him in a good light.

The suggestion to request to see all notes/correspondence relating to Mil under FOI is brilliant - Thank you Red :) I'll be following that up - and I've also requested from the CH a list from Mils notes of all her medications, what was prescribed and when - and by whom. So many different consultants involved in her care - I need to be sure about who prescribed what - and why! I think, no matter how I approach fighting for Mil, all that information will be very useful to have.

Visited Mil yesterday, but found her deeply asleep, and I only stayed 20 minutes or so. I know the bean bags on the floor are the safest option for her at the moment - but dear God, its pitiful to see little, frail Mil sleeping on the floor, with bean bags and mattresses and cushions heaped around her, her legs and arms sticking out and covered in bruises and tears. Add a few cardboard boxes, and she would look like a bag lady. Her door is left open, to accomodate the bean bags and make easy access if more staff have to rush in, in an emergency. I see other visitors passing and looking horrified at seeing her like that. Just no dignity for her left at all, all I can do is be glad that she is probably totally unaware of just what her current situation is.

One nice thing during the visit was that several staff I saw came over to thank me for the email I sent to the head office, saying thank you to them all for fighting so hard for Mi, and for caring for her. I am so glad I made the time to do that - it seemed to mean an awful lot to them all.

OH went back to work yesterday - thankfully! Because having a bloke recovering from Man Flu in the house is a bit like living with Victor Meldrew ! Youngest is actually being Ok, none of the major tantrums/kick offs that I have been anticipating (well, not so far, anyway). Meanwhile, we have booked the travel for us to go to Ireland to see my sister at the end of next month (so looking forward to that!) and, having had a run of bad nights, have at least had time to catch up on sorting photographs and get on top of the housework (You have to lok for the silver lining where you can, I guess!). Today, I will pop to see Mil again and just pootle I guess.

One of the photographs I've finally edited, I thought I would share. I have a 'thing' about damsel and dragon flies, I think that they are just beautiful, and on one of OH's kayaking runs, wandering by the river, I saw dozens of my favourite species of damsel - the Beautiful Demoiselle. They are absolutely stunning little creatures :)

Much love to all of you xxxxx

0G8A8939.jpg
 

Cazzita

Registered User
May 12, 2018
617
0
How bizarre all of these sound indeed and it is weird that lots of animals are involved. Mum watches nature documentaries and is always on the look out for crocodiles in the back garden! Yesterday, I woke her up at 2pm as she was still sound asleep from 11pm the night before and she asked me if she' had to go to school today' and I said no, it was Saturday! She was so relieved but she clearly thought I was her mum...