Neurology consultation/memory clinic

Pudster

Registered User
Jul 29, 2013
24
0
Braintree
My OH was diagnosed with AD in May 13. His last appointment with a consultant was Jan 14 to review the donepezil prescribed during the diagnosing process. We were advised that he would be invited annually to the memory clinic. My daughter phoned the hospital when the appointment became quite overdue and we were experiencing some difficulties with OHs anger/frustration. She was told that OH had been discharged, without our knowledge, and that we would need to go back to the GP to re-refer. I finally did this a few weeks ago and our GP wrote to the same consultant. During the GP appointment I briefly shared a fraction of the difficulties, I had to phone the police when OH wandered off to a near town 14 miles away, continence issues. Yesterday I received a copy of the consultants reply to GP which advised a new med to phase in alongside current prescription and that he was not offering an appointment! I am gobsmacked! although he did suggest mental health team if needed. I have arranged daily support, and respite in our home so that I get an occasional overnight break, I contacted local authority for carer assessment, though we would have to pay for support, which is already in place, social work assistant said she wasn’t sure what else could be offered but would ask a qualified social worker to contact....never happened. Apart from 6monthly GP appointments we have no ‘professional support’. Is this the same for everyone? Can anyone help me understand what a memory clinic is please?
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Im afraid your story is very common.
Mum with Alzheimers went to the memory clinic, she had a scan and some tests done. When we went back she was given the diagnosis. As she had a low heart beat the doctor said that donepezil was not recommended and discharged her. Later the cardiac clinic managed to improve her heart rate and so mum was referred back. She was given donepezil and discharged back to the GP for him to manage the prescription. She never went back to the memory clinic after that.

The memory clinic seems to be a way of getting a diagnosis and getting medication. Everything else is seen as social support and comes under social services. It sounds like you have already found them, but if the Social Worker has not contacted you then you need to follow this up and find out what is happening.
Unfortunately support for dementia is very underfunded and pretty thin on the ground. It is worth finding out from your local Alzheimers Society what is available in your area.
 

Louise7

Volunteer Host
Mar 25, 2016
4,694
0
I found the memory clinic was fine for establishing an initial diagnosis but my Mum got 'signed off' after a couple of visits as I think all they really do is measure the decline. If the consultant has suggested a referral to the mental health team ask your GP to refer your OH, making sure that you tell the GP everything that has been happening rather than 'a fraction of the difficulties'. The mental health team are more specialised in dementia behaviour than the GP and from personal experience they take the time to consider all symptoms and prescribe suitable medication, although it can be a case of trial & error to find the right balance of medication to help (although you may find that the new medication already advised by the consultant may improve things).

It's difficult but I've found that you have to be proactive and keep pushing for help otherwise it never appears, and you really need to let people know the full extent of your difficulties. Your OH wandering off is a safeguarding issue so make sure that you let social services know this, and point out that your OH is a vulnerable adult at risk.
 

Beate

Registered User
May 21, 2014
12,179
0
London
We were never signed off. We were faithfully seen every six month, with the consultant even making home visits. I think that's how it should be and I am sorry to hear it isn't in your case. When it comes to medication for dementia, they are the experts so for that alone they should see you regularly to check whether all is still well or medication has to be changed.

As for any other help, you need to contact Social Services, your GP (if other medical issues) or the community health teams. Your GP could for example refer you to the Continence Service if there are incontinence issues.
 

Kevinl

Registered User
Aug 24, 2013
6,064
0
Salford
It seem to me that it varies by where you live and people in the south seem to get discharged back to the GP more than most.
Once diagnosed both my wife (now) and my mother (some time ago) where seen by the memory clinic every 6 months. The people from the memory clinic used to visit my mum at my house as she lived with me right up until she passed away.
The memory clinic here is a stand alone unit with a clinic and 3 wards for residential assessment, my wife ended up in one of the secure wards for 6 months then went from there into an EMI nursing home. The memory clinic still send some one to the nursing home to visit her there every 6 months and do an assessment, last visit was just a few weeks ago and as she left the nurse said she'd see her again in 6 months.
I guess it's a postcode lottery thing.
K
 

Pudster

Registered User
Jul 29, 2013
24
0
Braintree
It seem to me that it varies by where you live and people in the south seem to get discharged back to the GP more than most.
Once diagnosed both my wife (now) and my mother (some time ago) where seen by the memory clinic every 6 months. The people from the memory clinic used to visit my mum at my house as she lived with me right up until she passed away.
The memory clinic here is a stand alone unit with a clinic and 3 wards for residential assessment, my wife ended up in one of the secure wards for 6 months then went from there into an EMI nursing home. The memory clinic still send some one to the nursing home to visit her there every 6 months and do an assessment, last visit was just a few weeks ago and as she left the nurse said she'd see her again in 6 months.
I guess it's a postcode lottery thing.
K
The postcode lottery,
 

Pudster

Registered User
Jul 29, 2013
24
0
Braintree
The postcode lottery! That was what I feared! I was aware that even neighbouring hospitals were very different in that one has support workers via Alzheimer’s Society and, unfortunately the one my OH went to didn’t. I am interested in the mental health team..is that social services? I don’t have much hope with the carer assessment but we are currently just about making it work. I am attempting to proactively plan but recognise that the system around us wait until a crisis occurs. Thanks for the replies and I’m glad that there are pockets of good practice to bench mark
 

Louise7

Volunteer Host
Mar 25, 2016
4,694
0
I am interested in the mental health team..is that social services?

They are part of the NHS but have close links with social services. My Mum was referred by her GP and they have been really good so far, with review visits every 4 weeks. This could of course also be a postcode lottery though!
 

Pudster

Registered User
Jul 29, 2013
24
0
Braintree
Thanks Louise. Worth a try as they will have more time than GP double appointment...I hope!
 
Last edited:

dasntn

Registered User
May 21, 2014
29
0
North Devon
Hi
I came online today to ask exactly the same question, and found your post.
We used to live in Berkshire, and my OH was finally diagnosed in 2013. The local hospital failed to diagnose, so the local memory clinic referred us to the National Neurology Hospital in Queens Square, London. They carried on looking after my OH after diagnosis with 6 monthly visits.

In 2015 we moved to North Devon, and our new GP arranged a visit to the memory clinic, but in effect that was just to sign my OH off from medical support and introduce the Alzheimers Society contact. Very much a postcode lottery.

Our local GP has been pretty good - I wanted to try alternative medication and he is working with us on that.
 

Pypsy

New member
Jan 15, 2018
8
0
It seem to me that it varies by where you live and people in the south seem to get discharged back to the GP more than most.
Once diagnosed both my wife (now) and my mother (some time ago) where seen by the memory clinic every 6 months. The people from the memory clinic used to visit my mum at my house as she lived with me right up until she passed away.
The memory clinic here is a stand alone unit with a clinic and 3 wards for residential assessment, my wife ended up in one of the secure wards for 6 months then went from there into an EMI nursing home. The memory clinic still send some one to the nursing home to visit her there every 6 months and do an assessment, last visit was just a few weeks ago and as she left the nurse said she'd see her again in 6 months.
I guess it's a postcode lottery thing.
K
 

Pypsy

New member
Jan 15, 2018
8
0
Yesterday I got her n touch for the first time. I had been told my husband was on a waiting list for neuropsychological assessment and was told it would be done quickly.
That was n November and we are still waiting.
We could go private but its £700 and can't afford it.
After getting advice on this site yesterday I rang the hospital and spoke to a very lovely secretary.
Today she rang and after much string pulling my husband is being assessed in 2weeks time on NHS.
There are still kind people who will help.
I am very grateful to those who gave me advice.
Maybe try speaking to a secretary. They may help you too.
 

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