Where next?

Trich

Registered User
Aug 16, 2007
31
0
France
My dad has been in a EMI unit for nearly a year and for the most part things have gone as well as they ever can in the circumstances. Unfortunately, he has recently had sporadic violent outbursts which were treated with upping the dose of his medicine (not something the family were happy with)and usually done without consulting us first. After the last incident we were told that the doctor was seeing dad and they might not be able to keep him there. This is devestating news as we all feel that to move him will only make things so much worse. This home has a dedicated floor for dementia sufferers and we imagined I suppose that they could cope with all eventualities. Does anyone know whether all EMI homes have the same policies and ask people to leave when they become too difficult. If so, where would he go?
Trich
 

connie

Registered User
Mar 7, 2004
9,519
0
Frinton-on-Sea
Dear Trich, can understand your concerns.
Does anyone know whether all EMI homes have the same policies and ask people to leave when they become too difficult.

No, all homes do not have the same policy thank goodness. The home my Lionel is in set themselves up as a dedidcated centre for EMI and I was so glad. Lionel went through some very trying (for them) times. But that does not help your situation.

If so, where would he go?
Don't know the answer to that. Can only suggest you ask for a meeting with the care home manager, and ask for their help.

Does dad have a Social Worker, or CPN that you could involve.

We were self funding and so there was not a lot of help around, but I don't want to sound all doom and gloom.

Please let us know how things pan out for your dad.
 

Trich

Registered User
Aug 16, 2007
31
0
France
Hi Connie,
Thanks for your response. Dad is funded by social services so I will contact the original social worker as a starting point. The home has not made a decision yet but it has unnerved us all that dad might be uprooted again. I will certainly ask my sisters to speak to the home manager. Unfortunately, I am not in the UK so this becomes very frustrating for me. As we had a difficult job finding this home in the right location for visits, all happy with it etc. I know it will not be easy to find an alternative. Anyway, as you say musn't be too doom and gloom, it may not happen!
Trich
 

j.j

Registered User
Jan 8, 2007
91
0
hi trich,
Our mam was also in an emi unit, they said they could not cope with her, our social worker said they were licensed for emi care and should therefore be able to cope, We were devastated, like yourselves we had looked hard for somewhwere suitable. It was decided Mam would have to move to a home for people with challenging behaviour, it was very upsetting. Mam has now been there eight months and we are happy with the care she is receiving, we feel that here the staff are second to none they are trained to deal with all sorts of situations, we are confident in their ability to cope well with mam, whereas on the emi unit we felt bad if mam was agitated. I hope your situation can be resolved in a way which you are comfortable with.
regards j.j
 

alfjess

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

This happened to my Mum. Although the part of the home, where Mum was, wasn't EMI, they couldn't cope with her challenging behaviour.

The Mental Health Team moved her to hospital for assessment and eventually she was assessed as needing NHS continuing care.

We were given the choice of only two homes, both a distance away. Both of these homes were owned and managed by private companies, contracted to provide NHS beds. I chose the nearest one, because they were both similar and nothing between them

If this happens do not panic, tis was the best thing that could have happened for Mum. The staff are very experienced and Mum is very well looked after.

So much so,that I have moved Dad from the very expensive luxuary care home to one of the private units next to Mum and he is doing OK also

Alfjess
 

Trich

Registered User
Aug 16, 2007
31
0
France
Hi Alfjess, Thanks for your positive slant on things and I am very glad that things worked out well for your parents. I do feel that my dad is in the wrong place. They obviously can't cope with his outbursts and are not trying to find out the underlying cause of them, only to use the 'chemical cosh' to keep him quiet. When one sister rang the nurse told her dad might have to leave. When another sister rang the manager she was told there wasn't a problem and when she saw dad on Tuesday (the incident happened on Monday so no rush eh!) he was o.k. The problem is that I am not there all the time otherwise I would be having a lot more to say. I don't want to make things worse for my sisters who do visit dad regularly by insisting that dad be reassessed and perhaps moved somewhere that would be impossible for anybody to visit. It just makes me so sad to think of him left alone in his room all day. They say that he is encouraged to join in activities but if he refuses they just leave him. When I have been there they even bring his food to the room so not even mixing with people in the dining room. I have asked that they not do this but again they say if he doesn't want to come out they can't make him. You would think that given they have a specialised emi/dementia floor that the staff there would be able to cope with this type of behaviour. Sorry for the rant but am feeling sad, angry and frustrated today and it's not fair to burden my sisters with it, so you got it!
Trich
 

alfjess

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

Rant away, I don't mind. I have been there myself.

Does your Dad have a Cpn? Maybe you could have a word with her/him? Saying you are worried about the lack of stimulation and the lack of dementia expertise/understanding with current care home staff.

If the home have a dementia unit within the complex, then why should your Dad have to move miles away? Maybe they don't have a bed available at the moment, but would there be any harm in putting his name on the waiting list, just in case?

Residential care cannot cope with challenging behaviour (my opinion/experience)

Take Care
Alfjess
 

Trich

Registered User
Aug 16, 2007
31
0
France
Hi Alfjess,
I have contacted the person who was dad's social worker and he said that dad's case is on review to another team ( i wonder when we were going to be told that). Dad is actually on the floor dedicated to dementia patients and so I feel staff should have had training how to deal with all that this entails. I would say that he is one of the most able there with many others bedridden or in wheelchairs. Fortunately, he has always been fit and has gained his strength back after the last period in hospital, mostly due to the food that is taken in for him. He is supposed to have choices at mealtimes but nearly a year on and he is till being given food he doesn't like. What always surprises me is that we can let ourselves in, sign in, walk to his floor and go into his room, make tea, back to the room and sign out again without seeing anyone. Where are the 4 carer supposed to be on his floor? I know I can bring this up with the Manager but I think the ice is a bit thin already so my sisters don't want to rock the boat. We are treading carefully and that's what get's me most. I look at the other posts and know that there are people in worse positions but the family feel guilty enough having had to put dad where he is without now feeling that we have to keep our mouths' shut in case he is placed somewhere worse. Damned if you do and damned if you don't eh! Thanks for listening.
Trich
 

alfjess

Registered User
Jul 10, 2006
1,213
0
south lanarkshire
Hi Alfjess,
I have contacted the person who was dad's social worker and he said that dad's case is on review to another team ( i wonder when we were going to be told that).

What other team, did you get the name of the Team Leader? I would be wanting to be kept informed and either you or you sisters should be present at the review, so if you don't mind me saying, contact the new team leader.
Is a Cpn part of this review team? Does the review team include your Dad's consultant?

If your Dad is self funding, then you can move him to any care home of your choice.

Even if your Dad isn't self funding, then you can still move him to a home of your choice, if it is within the SS allowance and it has spare beds.

Would it be possible to check out other homes?

Or maybe at the review, voice your concerns and with a bit of luck they could be addressed.

Take care

Alfjess
 

Trich

Registered User
Aug 16, 2007
31
0
France
Hi Alfjess
Lots of questions so here goes:
What other team, did you get the name of the Team Leader
The team is called Assessment & Care Management Team and I am ringing them to find the name of the team leader on Monday morning.
Is a Cpn part of this review team? Does the review team include your Dad's consultant?
Wouldn't think so. As far as I know there hasn't been a Cpn involved. The last person he saw was in hospital a year ago and that was the Consultant Psychiatrist. That was when he was put on Quetiapine. Would he still be in charge of dad's care? The only people he has seen since is the doctor at the home who seems to be the one authorising the increase in the drug. On looking back at the notes at the meeting in hospital the CMHT representative gave her apologies for being absent and I can't remember her ever contacting us after that.
Even if your Dad isn't self funding, then you can still move him to a home of your choice, if it is within the SS allowance and it has spare beds.
I know we could move him but we had such a job finding this place which is local to 2 sisters. Also any change to his routine seems to affect him badly. Plus it's not me doing the running around is it. I know what I would do if I was there and I keep my mouth shut most of the time so as not to stir things up. Don't worry about sounding bossy you are only saying what you would do and you know what "it is what I would do usually". I think a good kick up the 'virtual' backside is what I needed. I have already asked one sister to try and get a copy of dad's care notes from the home. I will get as much information as I can on Monday and press for the review to be held ASAP. If there is anything else anyone can think of that I should do please let me know and I will plough now that I am in "kick a.." mode.
Regards Trich
 

Trich

Registered User
Aug 16, 2007
31
0
France
Just an update. I did ring the Assessment & Care Management Team and got the following information.

I spoke to the duty person but she would not give me the team leader's name.

She advised that they had information about dad on computer but didn't know whether his records had been received. Apparently there was a review on the 18th February 2008??? and a social
worker called Nicky was in attendance. The next review would therefore be 18/2/09. She didn't know who else was there. As far as I am aware we were not informed about this meeting? Might be my bad memory but I don't recall it.

I asked whether the notes said whether dad had been seen by a CPN. She couldn't confirm either way but did say it was up to the local authority where the home was to put this in place as dad had moved outside the original area. I don't think this has ever happened. Maybe getting a CPN involved might help dad in some way - I don't know!

I asked whether an EMI placement should be able to deal with challenging behaviour and she confirmed they should.

The notes from the hospital review a year ago indicated that there was a Community Mental Health Team representative involved (although absent from the meeting) and she would be in contact. Don't think this ever happened or again whether it would have made any difference.


At the moment all dad's care and medication revolves round the home and a local doctor. As far as I know he hasn't had a review by a consultant to say whether he should still be on Quetiapine or whether there are now better alternatives. Given what I read on the site which I have copied below this is very worrying. Maggie said it was unlikely that the consultant who prescribed dad Quetiapine at the hospital would still be his consultant due to the move so does he have a consultant anymore?

The following came from the Alzheimer's site. I should say that dad has been diagnosed with dementia with Lewy bodies.

Side-effects include excessive sedation, dizziness, unsteadiness and symptoms that resemble those of Parkinson's disease (shakiness, slowness and stiffness of the limbs).
Major tranquillisers may be particularly dangerous for people with dementia with Lewy bodies, possibly causing sudden death. If a person with dementia with Lewy bodies must be prescribed a major tranquilliser, it should be done with the utmost care, under constant supervision, and should be monitored regularly.
A new generation of major tranquillisers may be less prone to produce troublesome side-effects, although some of these drugs (risperidone and olanzapine) have been determined to be unsuitable for use in people with dementia because of the high risk of stroke. So far, there is very little information about the possible risk of stroke with other drugs in this class, such as quetiapine; therefore, their use is not recommended at the moment. Whichever drug is used, treatment with major tranquillisers should be regularly reviewed and the dose reduced or the drug withdrawn if side-effects become unacceptable.
Excessive sedation with major tranquillisers may reduce symptoms such as restlessness and aggression at the expense of reducing mobility and worsening confusion.
Evidence is also beginning to accumulate to suggest that major tranquillisers may accelerate the rate of decline and disease progression in people with dementia, so there are particular concerns about the long term use of these drugs.

Can anyone tell me where this information is taken from. Are they NICE guidelines. If not, who is giving their opinion. Is the information something that the medical profession take seriously? I did try to get our concerns across at the meeting a year ago and was told everything would be carefully monitored. Obviously this has not happened and none of the professionals have picked up on this. In our ignorance we thought that 'someone' was doing this.

It seems to me that you are left much to your own devices as to whether you get the right treatment or not. There now seem to be huge gaps in the care that dad might have been getting if the right professionals were involved. Most of the information and support I have got has come from TP and thank goodness for it!
Thanks for taking the time to read this is does mean a lot that somebody is listening.
Trich
 

christine 22

Registered User
Jul 31, 2008
3
0
hillingdon, middlesex
Your Delimma

Dear Trish, I Agree With Your Statement We Too Are In The Dark About Who When Where Of The Treatment My Father Is Receiving Or Actually Not Receiving. You Are Right There Isnt Enough Continuity For Alzheimer Sufferers, And Yes Just Get On With It Is There Motto.
Chris Harvey
 

jenniferpa

Registered User
Jun 27, 2006
39,442
0
Trich - I can't swear to it but I "believe" that this is information provided by the drug manufacturers based on the results of clinical trials. At the very least it's not coming directly from any UK based body (such as NICE) because if you search you'll see that this warning is posted in lots of different countries. As to how much notice has to be taken of such warnings I'm not sure: I believe that they are in the nature of guidelines rather than edicts (at least they seem to be treated so by medical professionals) so I suspect that there is little or no enforcement.