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