Disturbing News

[Grommit]

Had a visit from the Community Mental Health Team leader last week who came round to tell me that Jean’s Friday Day Centre attendance is under review.

The Centre she uses is dedicated to Advanced Alzheimers patients and is open from 9 am to 3 pm on Fridays. There are about 9 patients that attend with 2 qualified and 1 apprentice carers who look after them.

The powers that be have been reviewing the patients and have decided that, because they are advanced patients and, in some cases, not very mobile and, in all cases, unable to use any sort of cognitive reasoning, the patients are not getting any benefit from attending the centre.

Their idea is to close the centre to advanced patients by replacing those that pass on to Nursing Homes or reach the inevitable end of the disease and only use it for early onset cases who have just been diagnosed with the disease.

I immediately got on my high horse and asked the following questions:-

1) If the the patients have lost their ability to communicate, what evidence can the reviewers show that the patients are not getting benefit from attending the Centre?

2) Are the main carers to be consulted about the benefits they get from a brief respite once a week?

3) At what point will the centre not be available in numerical terms. At the moment there are 9 patients and 3 carers. Will it close if there are only 8?, 7?, 6?. Can it be expected to remain open if there is only 1 patient and 3 carers?

4) What arrangements are to be made for transferring the patients to a Daycentre at another location. Will they be split up and have to get used to losing familiar faces amongst the other patients and the familiar faces of the carers?

The Team Leader acknowledged that they were good points that I had raised but added that the review results were not as yet an absolute proposal and the details had not been worked out at this time. In other words “we have not got a clue what is going on” (my interpretation).

She did say that it was not a cost cutting exercise as the centre would remain open for early diagnosed patients and “no I can’t tell you why they are not proposing to accommodate those patients elsewhere rather than move the advanced patients to strange surroundings”.

Why cannot this Government, Council or whoever these nameless reviewers are just leave poor, confused, disorientated patients and their struggling, tired carers alone?

 

[Izzy]

Grommit I'm so sorry to tead this news. No wonder you are so incensed.

 

[Grannie G]

We've always thought we were just seen as numbers ad this mindless proposal proves it.

I'm angry for you and Jean, Grommit and for all others in similar positions.

 

[jenniferpa]

She did say that it was not a cost cutting exercise as the centre would remain open for early diagnosed patients

Yes, well I don't believe that. They are cost cutting by ceasing to provide you with this service so that they can provide others who also need a service. They may still be spending the same amount, but they are withdrawing services to you: how can this not be cost cutting? What they need to do is fund services for you AND early diagnosed patients. Perhaps the phrase should be "cost restricting".

 

[Kevinl]

The way I read;

"Their idea is to close the centre to advanced patients by replacing those that pass on to Nursing Homes or reach the inevitable end of the disease and only use it for early onset cases who have just been diagnosed with the disease."
Is they'll no longer take on any new "advanced" cases or allow those who move into nursing home continue to attend the group and instead only take on new members from the less advanced group.

So as such the group will continue in its present form other than its new intake will from now on be from those from a less advanced group.
You said it's a "dedicated to Advanced Alzheimers patients" so all they're doing is changing it from being dedicated to advanced AZ patients to AZ patients at an earlier stage. That's if I've read it right.
To be fair if help is currently only offered to the advanced cases then those who care for those with a lesser state of the disease who are getting nothing so it is just a shift of a resource.
Personally I think those caring for the more advanced deserve the break more, but we all deserve a break of some sort. If the ones in the advanced group derive no actual benefit them maybe something for the less advanced who will is a good thing, it's just a shame it has to be one or the other.
K

 

[lin1]

Grommit. I am gobsmacked but sadly not surprised . I agree with every one of your points.

I am glad you got on your high horse and sincerely hope you have the strength to continue to fight this.

I too would like to know the answer to your first question . IMO it takes an experienced person who knows the person well . To be to able look at their face and into the persons eyes and see those often small but tell tale signs that we know so well.


IMO day centres are as much for the carer as for those attending . Those few hours a week are vital to us and enable us to continue to do the main caring at home for far longer.

I sincerely hope you win this battle .

 

[RedLou]

I interpreted this as Kevin did. I suppose they're presuming if sufferers pass on to a nursing home the main carer no longer needs respite. I think you need to seek clarity on this, and especially that you and Jean will be protected.
Incidentally, 'early onset' should mean people diagnosed under 65. Do they mean this? Or do they mean people with mild cognitive impairment who have just been diagnosed, whatever the age? If it's the former, funds are being re-routed.