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Is This Usual ?

Bree

Registered User
Oct 16, 2013
242
MOH has been diagnosed with AZ for over a year now. He is on Aricept and sertraline, I found out by accident that he has been 'discharged' by the memory clinic, and no follow up appointments have been arranged for him.

Is it usual just to dump a patient without informing them or their carer, and is it usual to discharge them totally, once they are receiving mediation ?

Not happy :mad:
 

Everton Annie

Registered User
Feb 25, 2015
111
Hatfield Hertfordshire
MOH has been diagnosed with AZ for over a year now. He is on Aricept and sertraline, I found out by accident that he has been 'discharged' by the memory clinic, and no follow up appointments have been arranged for him.

Is it usual just to dump a patient without informing them or their carer, and is it usual to discharge them totally, once they are receiving mediation ?

Not happy :mad:
Hi Bree my husband has also just been discharged from the memory clinic after nine months but we were told that at the outset. He is now back in the care of the GP but a referral can be made back at any time when things change. I'm surprised they didn't tell you that doesn't feel like a good service and I'm not surprised you are angry. Been reasonably happy with our EMDASS just wish I had the opportunity to speak to them without my husband there as they haven't got a true picture of where we both are on this journey. Hope things go well for you.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
It seems from TP that memory clinics often discharge people after diagnosis. In my view, there is no excuse for this not to be made clear to them and/or their carer. But I don't doubt it happens.

When Sue was discharged after diagnosis she was referred to the Adult Mental Health team. The consultant from AMH visits on a six monthly basis. Has your OH been referred on to anyone else?
 
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Bree

Registered User
Oct 16, 2013
242
Thank you both for your replies. No we were not told about MOH being discharged, and no referral to anyone else either, that said it appears to be the norm then. So if we need to see anyone from the memory clinic, we have to start right back at square one, the GP and wait for a referral again ? not good.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
Sorry for senior moment re MOH. I think that the point is that memory clinics do tend to concentrate on diagnosis and that they may have the view that it is not their job to advise people who have been diagnosed.

I can see a need for a service specifically concentrating on people already diagnosed but I don't know if any such services exist.
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
To be honest Bree I don't know what you're bother about. Memory clinics do nothing as there's nothing to be done, we still get called in every 6 months for the standard tests none of which get completed, I think it embarrasses and upset my wife for no purpose. I'd be quite happy if she never went again.
I don't know how you "found out" but they should have kept you informed, don't you get sent a copy of the letter that goes to the GP?
K
 

Optomistic

Registered User
Jul 24, 2014
123
Manchester
The same thing happened to my husband he was discharged from the memory clinic and consultant. He was given Aricept and told to go to the GP if things go worse. We do still go to see a Nurologist once a year.
 

rafferty

Registered User
Dec 27, 2011
85
cardiff
Bree, i can only add this has been my experience with my mum . i was told by the memory clinic that they don't routinely follow up post diagnosis . How can they just abandon us?
 

Kevinl

Registered User
Aug 24, 2013
4,771
Salford
How can they just abandon us?
Firstly because there's nothing they can do medically so the doctors and nurses can't actually do anything useful to help and secondly if I were to be paid the national minimum wage for looking after my wife (currently £6.70) then let's say I work 16 hours a day (even though I don't get 8 hours sleep but imagine I did) then 16 hours a day, 7 days a week = 112 hours a week x £6.70 = £750.40 a week, nearly £40k a year. it's much cheaper to pay me the £62.10 a week carer's allowance or about 55p and hour and have done.
K
 

Bree

Registered User
Oct 16, 2013
242
kevinl

I don't agree that there is nothing they can do, there are always new drugs/treatments being discovered for all conditions/diseases. By your reckoning, if there was to be a miracle drug discovered to treat dementia, you would be ok with your charge not being offered it ? Well not me.

Your point about the cost of care just proves how we are being used and abandoned by the powers that be. MOH has no six monthly follow up appointment, nothing. It matters not how I found out about being discharged, suffice to say I did.

No we do not receive copies of letters to our GP.
 

stanleypj

Registered User
Dec 8, 2011
10,708
North West
So if we need to see anyone from the memory clinic, we have to start right back at square one, the GP and wait for a referral again ?

I don't know for sure but I doubt whether it would even be possible for you to be referred to the MC again Bree. They diagnose people and when they've done that they consider it 'job done'.

But someone should now be responsible for overseeing your OH's care, other than the GP. You should make enquires about who takes on the responsibility.

The recent history of drugs to treat, not cure, dementia has been extremely disappointing. The handful of drugs that exist help some people with the symptoms. No drug slows the progression of the disease. That, sadly, is the current state of affairs.

But, like all carers, you need someone who knows about dementia to oversee your OH's condition and answer the questions that arise regularly with regard to how your OH can best be helped.
 

cragmaid

Registered User
Oct 18, 2010
7,941
North East England
Bree... I Would ask to be included in all correspondence with your GP regarding each clinic or hospital appointment. They are supposed to ask if you want to be copied in but I don't know if you have an LPA which would enable them to send a copy to you directly.
With regard to the Memory Clinic, my mum was discharged back to the GP some six months after she was settled on Aricept, with the understanding that she could go back if the need arose.... It didn't !
If the "miracle drug " ever came on the scene, it would be with a substantial amount of publicity and many years of testing and trials. Your oh would have every chance of being a guinea pig as they would publicly seek volunteers.



Sent from my iPad using Talking Point
 

jikkie

Registered User
Aug 23, 2015
64
My OH was diagnosed in December 2012. Infinite care was taken about that...

Then we had a home visit shortly afterwards from a nurse, who started the donepezil. We had to collect the next 2 prescriptions from the hospital, all following ones from the GP.

At the home visit, I asked "Is that it? Nothing more until I can no longer cope?" The reply was simply, "yes, that's right".

So zero further assessment. This is in Cardiff btw.
 

Tammatha

Registered User
Sep 2, 2015
11
Jikkie

My OH was diagnosed in December 2012. Infinite care was taken about that...

Then we had a home visit shortly afterwards from a nurse, who started the donepezil. We had to collect the next 2 prescriptions from the hospital, all following ones from the GP.

At the home visit, I asked "Is that it? Nothing more until I can no longer cope?" The reply was simply, "yes, that's right".

So zero further assessment. This is in Cardiff btw.
My husband was given donepezil, i woke one night with his hands around my throut thinkink he was wrestling a polar bear other night mares occured and i phoned the doc and he said stop the tablet just like that, what do you do and where is the help x