Is it worth seeking a private referral?

Helen58

New member
May 2, 2024
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My mum has been referred to the memory clinic but there is a 9 to 12 month waiting list. She is 90, her memory is very poor and she is becoming more confused and "feeling lost". She recently experienced 4 days of hallucinations which was very scary for her and upsetting for the rest of us. They seem to have stopped for now. Mum lives alone in the same village as me. She copes well enough physically but is all over the place mentally and emotionally.
Does anyone have any experience of seeking a referral to a private memory clinic? Would getting a diagnosis more quickly make any difference?
 

maggie6445

Registered User
Dec 29, 2023
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My mum has been referred to the memory clinic but there is a 9 to 12 month waiting list. She is 90, her memory is very poor and she is becoming more confused and "feeling lost". She recently experienced 4 days of hallucinations which was very scary for her and upsetting for the rest of us. They seem to have stopped for now. Mum lives alone in the same village as me. She copes well enough physically but is all over the place mentally and emotionally.
Does anyone have any experience of seeking a referral to a private memory clinic? Would getting a diagnosis more quickly make any difference?
Sorry to hear about your mum. I'm not sure if a diagnosis would make much difference ,in our experience. Once we had the diagnosis we were referred back to our GP for care.

Have you contacted her GP about the recent hallucinations? She may have an infection or delirium.

You can still claim Attendance Allowance once she has had difficulties for six months . It's awarded on the help someone needs not diagnosis.

If she needs help in the home then contact social services for a needs assessment.
Hope your wait isn't too long although the 9 - 12 months you mention is the same in our area and seems common.
 
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Rayreadynow

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Dec 31, 2023
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If you received a diagnosis tomorrow , what would you do with that information?

The condition will probably fluctuate which will make it more difficult to cope with for you both.
 

SherwoodSue

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Jun 18, 2022
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I think I would chase symptom support ahead of a diagnosis
GP - mum has been hallucinating for four days, what is to be done ?
You are blocked one way but not the other
Does mum have history of heart trouble or stroke?
You could assume vascular dementia if so and just keep going x
 

SAP

Registered User
Feb 18, 2017
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Unfortunately a diagnosis changes little other than knowing what kind of dementia a person has. Then it’s in the hands of the GP. I’m assuming you have already gone down the route of the GP checking for all other reasons for memory loss. Obviously any sudden change like the hallucinations need to be referred back to the GP.
Really it’s about thinking if it is worth spending her money now or waiting for the clinic to get back to you.
 

Helen58

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May 2, 2024
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Thank you for your replies.
We did go back to the gp with the hallucinations and Mum was checked out with blood tests, urine test and a head CT scan, none if which found anything other than "age related changes" in the scan. So no infection, deficiencies, tumour or bleed.
We successfully applied for attendance allowance last year, thank you. Mum has heart failure but is doing fine on her medication. She presents as "well" and in good spirits when we see the gp but as soon as she is back home it's another story!
I think I agree that there is little to be gained from a faster diagnosis and I don't think it is how mum would want her money to be spent. I guess we just have to carry on!
 

SherwoodSue

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Jun 18, 2022
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I wonder as mum has heart failure whether the changes you are seeing are linked to vascularisation, which can vary day to day. If the heart is pumping well there is plenty of oxygen for the brain then you are having a good day. When the heart is not pumping efficiently when the rhythm is ‘off’ then cognition suffers.

Hard to cope with sometimes as you never know what you are going to get.
 

Helen58

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May 2, 2024
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I wonder as mum has heart failure whether the changes you are seeing are linked to vascularisation, which can vary day to day. If the heart is pumping well there is plenty of oxygen for the brain then you are having a good day. When the heart is not pumping efficiently when the rhythm is ‘off’ then cognition suffers.

Hard to cope with sometimes as you never know what you are going to get.
That seems to make sense. Thank you.
 

maggie6445

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Dec 29, 2023
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@Helen58 , is your mum on beta blockers for her heart failure? My oh had just been taken off his as the cardiologist has said it can cause confusion , slow heart rate and can make heart failure worse in some patients. My oh was getting light headed and having falls as well as being very sleepy. Also hallucinations!
Been on the bisoprolol over 2 years!! Maybe the reason for his rapid " dementia" decline !!
 
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Helen58

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May 2, 2024
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@Helen58 , is your mum on beta blockers for her heart failure? My oh had just been taken off his as the cardiologist has said it can cause confusion , slow heart rate and can make heart failure worse in some patients. My oh was getting light headed and having falls as well as being very sleepy. Also hallucinations!
Been on the bisoprolol over 2 years!! Maybe the reason for his rapid " dementia" decline !!
Hi @maggie6445
mum is on bisoprolol (I think) but her heart rate is fine and she hasn't had any falls, touch wood, or particularly sleepy, so I don't think that is an issue in her case. Thank you for raising it.
 

maggie6445

Registered User
Dec 29, 2023
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Hi @maggie6445
mum is on bisoprolol (I think) but her heart rate is fine and she hasn't had any falls, touch wood, or particularly sleepy, so I don't think that is an issue in her case. Thank you for raising it.
That's good. My OH has been on it as I say,for two years but it's only in the last six months that's that things have gone dramatically downhill . So it's something to bear in mind. GP hasn't mentioned it but cardiologist has this week .
Also the cardiologist wants a review of memantine dementia drug as that can have a similar effect on some.
 

GeorgeIP

New member
May 11, 2024
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Can anyone advise how to get a private memory assessment, please? Our local NHS clinic has a 6 month waiting list. I am worried that my wife will get worse without any treatment and may miss out being included in a trial if there is one.
 

Helen58

New member
May 2, 2024
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You could ask your gp if they can make a referral for a private assessment. Otherwise you can go to a private gp and they will make the referral. Unfortunately the private gp will be an additional cost on top of the private assessment. I don't know whether the results of the assessment will then go back to your own gp for treatment on the NHS, or if you have to pay for private treatment, if there is any? Good luck.
 

Kevinl

Registered User
Aug 24, 2013
7,009
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Salford
Can you get a private referral to an NHS memory clinic, hate to use the phrase "queue jumping" or are there privately funded memory clinics too? If so wouldn't they cost too?
This is a serious question and I wouldn't want to cause any offence, but can you buy you're way to the front of the queue with a privately. K
 

jennifer1967

Registered User
Mar 15, 2020
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Southampton
Even if you get there quicker privately, please bear in mind there is no treatment for dementia
There maybe meds if she has alzhwimers but these may only slow it down but not treat. Some don't get on with the tablets and they are only for symptoms. If another dementia found, there no tablets to slow it down. Needs a lot of thinking about and you may have to pay for scans as well which would bump the price up. Really need to weigh up if it would be any more beneficial not to wait 6 months.
 

SoniaR

Registered User
May 25, 2024
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Hello, I think a diagnosis is a good thing as otherwise you are floating around not really knowing. I fought for my husband to have a proper diagnosis as the stroke doc and the emergency docs all said his memory issues were due to his brain injury after he hit his head after a fall. They also found signs of 2 strokes.

The memory clinic people were brilliant. They not only did some simple memory tests but asked me for a full history and how life was for us. They were very kind and very helpful. At the end they said he had classic symptoms of Vascular Dementia. They gave me lots of info as well as a list of organisations who held social groups, and we now attend one near us.

I know dementia is incurable but getting a diagnosis really helped us both. If you have the funds then get a private diagnosis. A lot of private hospitals have their own dementia units, so you won’t be jumping any queue. Wishing you well.
 

SoniaR

Registered User
May 25, 2024
17
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Just checked my local private hospital (Hatfield) and they have a memory clinic. Total cost is £2400 and that includes initial assessment, blood tests, MRI etc. if that is affordable then worth looking in your area. With private hospitals you can self refer so no need for GP referral. Cut out the middle man!