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Should I chase up an assessment?

Milvus

Registered User
Sep 5, 2019
15
Following a cognitive assessment in September, Mum is supposed to receive further assessment from Old Age Psychiatry. We've noticed a marked decline in her abilities since then and I'm wondering whether to ask how long it's likely to be before she is assessed? Part of me wants to know and to get advice and help but on the other hand I shrink from her receiving a diagosis. I feel it would be such a hard thing for her to be told and to have to accept, although we all assume this is dementia.

She is so very confused now, can't manage simple tasks (she spent a whole day unsuccessfully trying to write an address on an envelope), loses things all the time, has word-finding difficulty, doesn't know what day it is, has had a couple of incidents when she hasn't recognised where she is in familiar surroundings, and so on. We got her a simple four-button dementia mobile recently and she was fine with it for a while but now doesn't seem to be able to work out how to use it.

So - do I chase up the assessment or spare Mum the knowledge for a little longer? How long does it usually take to receive an appointment?
 

Vitesse

Registered User
Oct 26, 2016
220
Following a cognitive assessment in September, Mum is supposed to receive further assessment from Old Age Psychiatry. We've noticed a marked decline in her abilities since then and I'm wondering whether to ask how long it's likely to be before she is assessed? Part of me wants to know and to get advice and help but on the other hand I shrink from her receiving a diagosis. I feel it would be such a hard thing for her to be told and to have to accept, although we all assume this is dementia.

She is so very confused now, can't manage simple tasks (she spent a whole day unsuccessfully trying to write an address on an envelope), loses things all the time, has word-finding difficulty, doesn't know what day it is, has had a couple of incidents when she hasn't recognised where she is in familiar surroundings, and so on. We got her a simple four-button dementia mobile recently and she was fine with it for a while but now doesn't seem to be able to work out how to use it.

So - do I chase up the assessment or spare Mum the knowledge for a little longer? How long does it usually take to receive an appointment?
I would certainly chase up the assessment. It may be that other tests have to be carried out before she is seen by Old Age psychiatry, blood tests, brain scan, and all these things take time. There may be another underlying cause of her deterioration and they may have medication that can help. Don’t assume the system is working! Make a fuss and get your Mum’s assessment ASAP.
 

Beate

Registered User
May 21, 2014
12,044
London
We can't tell you how long it will take, and three months since the last one is not long enough for them to fix a new date automatically, so phone them up and say that she has declined considerably, and changed circumstances warrant a new assessment.
 

Milvus

Registered User
Sep 5, 2019
15
We can't tell you how long it will take, and three months since the last one is not long enough for them to fix a new date automatically, so phone them up and say that she has declined considerably, and changed circumstances warrant a new assessment.
They assessed her while she was in hospital during a three week stay when she was unwell, and said she would get further follow-up assessment because of the results and that it might happen while she was still in hospital. This gave the impression that it would be very quick as the results warranted further investigation. It's not just a regular routine assessment we're waiting for but a completion of their initial testing. We haven't been told anything about the first test except the score and there has been no diagnosis or feedback as they have not finished their testing.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Ring & chase up that assessment ASAP. Your instinct is right, I’m afraid you are going to have to push as the GP should be the lead in this once your Mum is discharged from hospital.
Ring the clinic direct & tell the receptionist your concerns, believe me these lovely people are happy to have direct contact with family. I was Dads contact point, & am still Mums contact point & liason.
Good luck lovely
X
 

Milvus

Registered User
Sep 5, 2019
15
Well, I phoned the GP again. The receptionist said I should contact the hospital as they had referred Mum. The hospital told me to contact the mental health hospital as they would be carrying out the assessment. After a bit of nonsense trying to get the right phone number I eventually got through to the mental health hospital and was passed from one person to another. They promised to check what was happening and get back to me.

The person who phoned back was the man who had assessed Mum ten months ago and diagnosed Mild Cognitive Impairment at the time. He did not have Mum on his waiting list and had heard nothing about her being referred for assessment after her hospital visit! Why does this not surprise me?

The result is that he is very anxious to assess Mum as soon as possible and we have a date arranged for a couple of weeks' time. Result!
 

Hil76

Registered User
Jan 5, 2020
50
Well done for being so persistent @Milvus
@Milvus ive just read through your thread, I’m delighted you’ve finally managed to get an appointment for mum to be assessed, she has clearly gone downhill considerably since her previous assessment of mild cognitive impairment and if she is diagnosed with AD, it at the very least means there will be medications available to her that may be of some help among other resources that can be of help. It’s so hard to come to terms with all of this. I feel like I’m always saying this but I’m going to say it to you too, consider looking into getting POA put in place, you are going to need that at some point in the near future I’m afraid. You have my every sympathy, there is simply no easy way to get through this, and you have my every sympathy. Personally I’ve never gone through anything as difficult as this and I wouldn’t wish it on my worst enemy. I wish you the best xx
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Well, I phoned the GP again. The receptionist said I should contact the hospital as they had referred Mum. The hospital told me to contact the mental health hospital as they would be carrying out the assessment. After a bit of nonsense trying to get the right phone number I eventually got through to the mental health hospital and was passed from one person to another. They promised to check what was happening and get back to me.

The person who phoned back was the man who had assessed Mum ten months ago and diagnosed Mild Cognitive Impairment at the time. He did not have Mum on his waiting list and had heard nothing about her being referred for assessment after her hospital visit! Why does this not surprise me?

The result is that he is very anxious to assess Mum as soon as possible and we have a date arranged for a couple of weeks' time. Result!
yay! so pleased you rang the CMHT , I found by ringing them direct they put pressure on the GP for referral & bingo Bango! We were in a system that seems to work!
a lot better than social services.
Keep in contact with this team as eventually the liason of CHC will rely on their assessments.
Good luck & wishing quick diagnosis! xx
 

Milvus

Registered User
Sep 5, 2019
15
yay! so pleased you rang the CMHT , I found by ringing them direct they put pressure on the GP for referral & bingo Bango! We were in a system that seems to work!
a lot better than social services.
Keep in contact with this team as eventually the liason of CHC will rely on their assessments.
Good luck & wishing quick diagnosis! xx
Thank you! The man who is going to do the assessment has given me his email address. Very helpful indeed.
 

Milvus

Registered User
Sep 5, 2019
15
@Milvus ive just read through your thread, I’m delighted you’ve finally managed to get an appointment for mum to be assessed, she has clearly gone downhill considerably since her previous assessment of mild cognitive impairment and if she is diagnosed with AD, it at the very least means there will be medications available to her that may be of some help among other resources that can be of help. It’s so hard to come to terms with all of this. I feel like I’m always saying this but I’m going to say it to you too, consider looking into getting POA put in place, you are going to need that at some point in the near future I’m afraid. You have my every sympathy, there is simply no easy way to get through this, and you have my every sympathy. Personally I’ve never gone through anything as difficult as this and I wouldn’t wish it on my worst enemy. I wish you the best xx
Thank you. Fortunately we have POA in place. We were quite concerned to get this done last year as we were afraid that Mum might not be considered fit to do so if we waited. When she contacted her solicitor to arrange this she discovered that she had arranged POA eleven years previously. She had forgotten and we didn't know!
I think the family is expecting a dementia diagnosis of some kind. It will come as no surprise to us. I'm more concerned with how Mum will take it. It must be a horrible thing to realise you have. I don't know what she will be told or whether I can discuss things with the person who assesses her without doing this in front of Mum. Could be awkward...
 

Milvus

Registered User
Sep 5, 2019
15
Mum had her assessment today. She scored 84% on the ACE-III test which was down about 8 points from last April. From what I can find online that doesn't seem too bad even if she did think the president of the USA was called Thump!

Of particular significance to the tester was the fact that she couldn't copy simple shapes in one question although she had been a talented artist in years gone by, able to draw a portrait to the life.

Today was a good day for Mum and she performed well. If he had come yesterday he might have got a different result. She was unable to change a hair appointment as she just couldn't understand what she needed to do to ask for a later time. It confused her enormously. She also couldn't manage to phone me even using the simplest phone from the Alzheimer's Society. Then when she saw a dog in a cage on television she got alarmed and asked who was sending her a dog in a cage.

He has arranged to test her again in three months to see if anything has changed. It's a relief to know that she is finally being monitored.
 

DesperateofDevon

Registered User
Jul 7, 2019
2,742
Mum had her assessment today. She scored 84% on the ACE-III test which was down about 8 points from last April. From what I can find online that doesn't seem too bad even if she did think the president of the USA was called Thump!

Of particular significance to the tester was the fact that she couldn't copy simple shapes in one question although she had been a talented artist in years gone by, able to draw a portrait to the life.

Today was a good day for Mum and she performed well. If he had come yesterday he might have got a different result. She was unable to change a hair appointment as she just couldn't understand what she needed to do to ask for a later time. It confused her enormously. She also couldn't manage to phone me even using the simplest phone from the Alzheimer's Society. Then when she saw a dog in a cage on television she got alarmed and asked who was sending her a dog in a cage.

He has arranged to test her again in three months to see if anything has changed. It's a relief to know that she is finally being monitored.
That’s brilliant!
 

Milvus

Registered User
Sep 5, 2019
15
Following on from a score of 84 (actually, they're now saying it was 88) in January, Mum has had a delayed follow up assessment a week ago and scored 70. That's an18 point drop in 8 months. Nothing was done until I chased it up. Everyone has noticed a marked deterioration in her condition. Still no diagnosis. She has now been referred for a further review. What a lengthy process!