Drugs used during assessement for care home move

alfjess

Registered User
Jul 10, 2006
1,213
0
south lanarkshire
Hi gabriel,
Why would you want input with the drugs when the consultant is the expert? Sure ask him questions why is he using that drug, when will it work, side effects and dose etc and if you think its effecting your mum badly then tell them they will listen. The ward is (or should be) the best level of care your mum gets, they are highly trained specialists. The EMI unit is where they go when they are more settled or are being managed effectively. She should not be being moved if she is still this agitated.
x

Hi psych nurse

This wasn't my experience with Mum.
I know it should have been, but----- maybe some psych nurses aren't as caring as you.

Mum went into the ward, walking, talking, continent, upright in stature and was then transferred to a dementia NHS care home when they had done their worst and I was told she didn't have long to live. She couldn't walk, talk, was incontinent and was like a vegetable.

I am sorry if this is stabalizing, I would rather have had her unstabalised.

She was prescribed medication PRN and I think this was used often.

Frequently, when I visited she was barricaded in a chair by a table with the wheels wedged behind the legs of the chair to stop her walking while, the psych nurses were watching television.

When she was transferred to the dementia home and had a new consultant, they sorted medication, she started walking, although listing front, side, back, whatever, on different days (parkinson effects of the drugs, she had been given?) She never really spoke again, but she lived for another year.

With my experience of Mum and that ward, I would never consent to anyone else in my family being admitted, indeed, I strongly fought against Dad being a patient in the same hospital.

Sorry for the rant and I am sure you are not like the nurses in that ward and thanks for your imput on the forum

Take care
Alfjess
 

gabriel

Registered User
Jan 17, 2010
84
0
West Sussex
Well I'm hoping that like Alfjess's mother, that my mum will improve with the move to care home. It is just that it is so hard to see someone go downhill in a place where they are supposed to improve them. It is drugs all the way.

I was given a condensed form of my mum's notes from the previous hospital (one hour away because of no bed available locally and transported in the middle of the night) by the local hospital, all claiming about the urination on the floor and waking and wandering at night. They never once said it might be the drugs. My mum doesn't take drugs.

There ought to be diversion treatment. I have proved it in the ward that my mum can be calmed down, even at sundowning. All I did was give her two pieces of dry hand roll tissues from the toilet and she played with those until she nodded off for a short nap. She was concerned about where she was going to stay that night. If they would just take the time to find out what the anxiety was about. But I must say they are very caring otherwise.

Gabriel
 

alfjess

Registered User
Jul 10, 2006
1,213
0
south lanarkshire
the drugthat caused the most damage was Haloperidol, please do not let them give this to your mum, it caused my husbands head to be bent double on to his chest, and very stiff joints and muscle spasms, although they never said this was a side effect and kept giving it to him, when i discovered that it was i fought to have it withdrawn, and eventually his head came back upright, but it can be permenant side effect, and is not intended or liscensed for dementia patients, but is very widley used.pam

Yes I agree. The drug which caused the most harm to Mum, WAS haleperidol.

She was also stooped, almost bent from the waist down and one of the nurses would kindly!! tell her to staighten up:(
Now that I think back, this was the drug that caused Parkinsonism symtoms, but I think repiredone was the drug which caused a mini stroke and the start of Mum's severe deterioration.
Alfjess
 

Psych_nurse

Registered User
Jan 20, 2010
33
0
Lancashire
Yes haloperidol is an awful drug not only for dementia patients but for schizophrenics as it was originally used. I would not recommend these old antipsychotics to anyone. I have seen people who have been having haloperidol via injection (haldol) for a number of years and the side effects are horrendous, speech incomprehendable, rocking violently back n forth and shuffling when walking.
There is a drug called Procyclidine that counteracts the side effects of haloperidol but on the whole its prob best to steer clear as there are much newer drugs with less side effects xx
 

JPG1

Account Closed
Jul 16, 2008
3,391
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I wonder whether there are any statistics to indicate how many people with dementia have been admitted to ‘assessment wards’ fully mobile, continent, talking and walking.

But during their time in the assessment ward and before discharge, they have become doubly incontinent, immobile, have lost the ability to engage in meaningful talk, and are even more confused than on arrival.

The above is exactly what happened to my relative as result of time in an assessment ward. So trouble-free (apart from dementia) on admission, that even some of the nursing staff were asking us what the reasons were for the admission, because they could only see a fairly well-functioning individual. Cheerful, happy, chatty, but with dementia. (I won't go into the reasons for admission here, because it is irrelevant to the thread.)

Our experience of the assessment unit doesn’t match your description, Psych_nurse. The only time a consultant was ever seen in that unit was at the weekly ‘ward round’, when she sat at the table, surrounded by staff and files. They discussed the patients, and spoke with any relative who attended the ward round to ask about their own relative in for assessment.

But only after the relative(s) had left, was the “Plan” (as they call it) discussed and written into the notes. That “Plan” often included changing medication, adding new meds, removing existing meds. With absolutely no discussion with the family at the time. Lots of other things were discussed as part of the “Plan” too – but not with relatives.

A small group of relatives became concerned, and we asked questions. We got to see the full notes of our relatives, and the “Plans” as discussed at the ward round, but not discussed with the family. That was very revealing.

There are wonderful assessment wards – there are also lousy assessment wards.
There are wonderful psych nurses – there are also lousy psych nurses.
There are wonderful consultants – there are also lousy consultants.
There are wonderful caring relatives – there are lousy uncaring relatives.

But there’s only one kind of patient – a patient in need of care.

It troubles me that you say the consultant is the expert as far as drugs are concerned, yet you are happy to post details of drugs that you say counteract side-effects of other drugs. (I'm not doubting you - because I have not researched that particular drug.) Psych nurse, I am worried to find you posting such information. You may well be the best psych nurse ever, but you may not even be a psych nurse for all we know. Forgive me my worries, but as I am sure you will understand, those of us who have 'less good' experience of assessment wards will forever carry those memories and doubts with us.
 

Psych_nurse

Registered User
Jan 20, 2010
33
0
Lancashire
Hi,
Whether you believe I am a psych nurse or not really does not affect the fact that I know I am and therefore with many years experience have developed a good understanding of the drugs I give out. However, when all is said and done the consultant is the expert on drugs. It is sad you have had such bad experience of the assessment wards and obviously have come accross bad consultants and staff, this luckily is not the case where I work. The consultants are based on the ward and see the patients at all times of the day ( and the junior doctors at night). I cant understand how there can be such a big difference in assessment units, you would think there would be a benchmark for them all. I was simply saying about the procyclidine because if someone is on haloperidol long term and they are on no drugs for the side effects then the side effects can become permanent even after the drug has stopped. If you want to read about this you can just google in putting "the use of procyclidine for Extrapyramidal side effects" should be quite helpful x
 

JPG1

Account Closed
Jul 16, 2008
3,391
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Whether you believe I am a psych nurse or not really does not affect the fact that I know I am

Psych_nurse, the fact that you know you are a psych nurse does not affect the fact that I do not know whether you are or not.

Any more than I know whether or not the Prime Minister is posting on this forum.

There are no benchmarks as far as dementia care is concerned at all, IMO - not just in relation to assessment units. If there was a benchmark of any sort which determined the quality of health and social services we all meet, thus rendering it all excellent - then there would be few threads about many of the enormous problems many of us have encountered. (NB. I have not used the word "most" so by no means "all" of us.)
 
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Psych_nurse

Registered User
Jan 20, 2010
33
0
Lancashire
I know that there are not, I am saying I cant believe there isnt and how sad it it. There are benchmarks in the form of the national service frameworks but they do not state specific things ie doctors being present on the ward etc etc.

Like I said it really makes not difference to me what you think as I am not coming on here to prove I am a nurse it really has no bearing on what I am saying and I am not going to argue about my career on a public forum.
 

gabriel

Registered User
Jan 17, 2010
84
0
West Sussex
Hi JGPI,

Can you or anyone tell me how you got the notes of your relative, because the consultant has told me they cannot give out medical information only to the patient and that I would have to apply somewhere formally (didn't catch the name of the organisation). So they down right refused.

My mum is now in special knickers for people who are incontinent. I saw them in her drawer in her bedroom. My mother was not incontinent when she went in. The first five days she was in a hospital, way out of her area, there was no sign of any trouble at all, not even behaviour-wise. Now she told me the other day as I was taking her to the loo, that that day she had found herself doing it and it was trickling down her leg. The ward manager has labelled her DISCONTINENT, which means that she just decides to do it wherever she is. You have no idea how upsetting this is.

Anyway, the EMI residential dimentia home manager (a very super person full of compassion and great ideas)came to see my mum yesterday and invited her to go and live with them. Mum's diabetes has to be stabilized apparently. How they will do this I don't know when they are feeding her jam in her rice pudding and biscuits at tea breaks. Then telling me this is ok. All this with her name on the board in the dining room labelled diabetic.

I am praying hard that Mum will be released very soon into that lovely ladies' care. I just want her out of there. She told me they often change the drugs anyway. Mum is delighted and thinks she is going on an adventure.

Gabriel
 

JPG1

Account Closed
Jul 16, 2008
3,391
0
Gabriel,

I can only tell you how we achieved it.

It was not easy, but it was possible.

On admission, the 'ward manager nurse' had said it would never be a problem for close family (i.e. named next-of-kin plus one other named on admission by me, and 'recorded on the file') to ask any questions, talk to anybody about any concerns, to attend ward rounds and speak to consultant, to be given information about medications and so on. That lasted about a couple of weeks, and then the same requests to be kept informed were denied, for whatever reason. So whether there was a change of policy, a change within the unit we were not able to establish.

I tracked down the name of what was called in our area the "Lead Nurse" who was not on the ward, or even in the same building very often. I spoke with her on the phone, met with her in person, and then wrote to confirm my request to be allowed to see the notes/meds/whatever of my relative, as next-of-kin and not as an interfering busy-body. (We had no EPA/LPA then as the dementia had progressed too rapidly for that to be a feature of our life.) I met with all the usual arguments about 'patient confidentiality' and 'capacity to consent' and so on. Argued the toss and in particular gave information about dementia to the Lead Nurse! I was eventually graciously granted access. It took me a week or so.

And then the other 'concerned' families of other patients did likewise.

I'm not saying it was easy - it wasn't. And it is something that I feel should be tackled 'on high' as far as patients with dementia are concerned, so that immediate family are allowed access to essential information. And I'm not for one moment suggesting that all family members, however distant, should be granted that same access, but the nearest-and-dearest should, IMHO.

It is definitely worth following through, and I wish you all the best.
 

gabriel

Registered User
Jan 17, 2010
84
0
West Sussex
Jpg1

Thanks for the info. I now need to find out who is above the ward manager/nurse, because the consultant is going on her suggestions as to what medication to use. I was in a meeting with her and the consultant and that is what happened. It is the ward manager that seems to be pulling the strings.

I am not even sure what ward this hospital is connected to. The consultant works out of a cottage hospital mental health division, in my town. The ward my mum is in is in an isolated set of buildings in the next town holding all sorts of mental health wards, some permanent, but set apart from the main general hospital there.
 

Skye

Registered User
Aug 29, 2006
17,000
0
SW Scotland
Hi gabriel

In our area it's Director of Nursing, presumable the equivalent od JPG's Lead Nurse. I always contact her if I have something to say about hospital care.

You may have to find out who exactly the Top Nob is, but it's well worth it.
 

gabriel

Registered User
Jan 17, 2010
84
0
West Sussex
Medical records

Thanks. After a bit of chasing around I have been given the name of the one in charge of medical records who I can call on Monday. Apparently I have to fill out a form
Gabriel
 

gabriel

Registered User
Jan 17, 2010
84
0
West Sussex
Diabetes and Risperidone

I found my mother in a comatose state today. Couldn't bring her out of it in the assessment unit. She was slurring her words. Ward manager/nurse came and tried several times to bring her to. She kept at it for a while and gradually mum came to a bit at a time.

Doctor gave her a thorough medical and found a slight heart skip. (she has always had this since a heart attack many years ago). Everything else checked out ok. Face perspiring. Diabetic nurse says to further space out the Risperidone (she is getting it twice a day). Mum ok when I left, had a hearty meal.

www.netdoctor.co.uk/medicines/ says:

NOT TO BE USED IN people with vascular dementia (which she has). Also says use with caution in Diabetes, which she has. Heart failure (which she has had). People with history or risk of stroke (which she has had).

Says this medicine should only be used for people with Alzheimer's whose aggressive behaviour is unresponsive to non-drug approaches and when there is a risk of the person harming themselves or others.

This is all very disturbing to me. Now what do I do? Isn't the consultant supposed to know all this? And the ward manager/nurse who suggested it in the first place:

Gabriel
 

alfjess

Registered User
Jul 10, 2006
1,213
0
south lanarkshire
Hi Gabriel

Sorry, but with my experience of my Mum and resperidone, I would be asking to have this medication stopped.

Can your Mum be transferred to a dementia care home of your choice, where the staff are more caring and have more time.

Maybe with the right staff attitude and a secure unit, she wouldn't need these dangerous drugs?

Sorry if I am negative, but it does worry me when, dementia sufferers are just drugged.

Love
Alfjess
 

gabriel

Registered User
Jan 17, 2010
84
0
West Sussex
Getting mum off drugs

Hi Alfjess,

The care home we have chosen is an EMI residential unit and the best one we could find for her. The manager of the home is a lovely caring woman who knows how to divert attention and has lovely staff. However, she and the assessment unit have always worked together and the care home manager has told me she has great confidence in the particular assessment ward my mum is in.

She did once say to me that they have taken people off risperidone in the care home, but she is going along with the assessment unit. They are trying to get my mum well enough (diabetes count down), also has contacted a virus in the ward which is not going away), trying to get her well to transfer her to the home; there is a bed saved for her.

However, I have just re read this information about risperidone and it seems to me she should not be on it. Obviously there is some link between the effect of it on her diabetes as the diabetic nurse told them to space out the dose further. How do I tell the consultant that I don't think she should be on it?

Also they're now doing another urine test to see if that is the cause. They always say it is something else, not the drug. All this delays her entry into the home, where I feel she will be better off. I have also found out that they are doing cognitive therapy. I think that is what has disturbed my mum also.

This is endless. I have also written a 3 page letter to the consultant and social worker, a copy of which was handed to the assessment ward manager, about my concern about mum, and met with the consultant. That is when the ward manager/nurse told him she wanted mum on resperidone. I don't seem to have any say in it. Can you suggest anything?

Someone here on the site is going to find someone I can talk to who is higher up than the consultant. I don't like to cause a disturbance and have mum's move delayed any longer. I just feel that they will then try another drug. What a mess.

Gabriel
 

NewKid

Registered User
Mar 26, 2009
367
0
Warwickshire
Gabriel, so sorry to read what a terrible worry you have with your Mum. It doesn't sound like they are getting the balance right at all at present, and some of the reading here has been very sobering indeed. On the other hand so glad you have such a good care home up your sleeve. Hope your Mum can move there very soon. Good luck and keep up the good work in trying your very best for your poor Mum
 

gabriel

Registered User
Jan 17, 2010
84
0
West Sussex
Getting the balance right

Hi NewKid,

You must have some experience of 'getting the balance right'. That is what they told us they wanted to do in the beginning, but there have been so many problems, I am surprised my mum is still with us. Even though she is getting risperidone she is still up at night sorting out her clothes, or refusing to go to bed, or lashing out, so I don't know why they are continuing it.. perhaps it is sorting out some anxiety during the daytime, who knows.

I wonder how they would feel if they were suddenly taken from the home they have always known and put in a building with 20 other patients all day long, all with behavior problems, with no let up, and transferred all over West Sussex (4 times in 3 weeks). Then given psychotic drugs. How can a dementia person be expected to know where the bathroom is in the middle of the night in a strange place? My mum didn't even recognize the lounge yesterday after being across the hall in the dining room. We had to ask to go in as she thought it was a private party or something. I bet they would be a bit disturbed after all this.

I just wish it was me and not her.

gabriel
 

NewKid

Registered User
Mar 26, 2009
367
0
Warwickshire
I wonder how they would feel if they were suddenly taken from the home they have always known and put in a building with 20 other patients all day long, all with behavior problems, with no let up,


I couldn't agree with you more. What the hell do people expect? It breaks my heart when people report Mum's oddities to me... cos.. what the hell do people expect. ..

Drugs are such a small part of the solution - and not always any solution at all. You are like me up very late, looking for said solutions.. Take care, and really understand your worries
 
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