abandoned

catsmomzie

New member
Dec 3, 2019
9
0
Hi I am new to the group and thank you for letting me join. I feel abandoned by the nhs and the system. We have been waiting nine months now for an assessment for my husband. I have seen my GP and she just says it does take a long time. I know many people will identify with this, we have both worked all of our lives and paid into a system that just does not have the resources that it should. Any suggestions about what we can do whilst we are waiting for the assessment.
 

canary

Registered User
Feb 25, 2014
25,018
0
South coast
Hello @catsmomzie and welcome to DTP

Diagnosis can indeed take a long time. Things that can be put in place straight away (and infact should be, even if its not dementia) are things like wills, POA and if you own your own home think about owning it as tenants in common rather than jointly, so that you can both leave your half to chidren.

Other than that enjoy your time together and make memories. If you have any specific problems, do post about them as Im sure someone will have come across it already. This forum has vast collective knowledge and experience.
 

Pink-geranium

Registered User
Nov 27, 2019
16
0
london
Hi I am new to the group and thank you for letting me join. I feel abandoned by the nhs and the system. We have been waiting nine months now for an assessment for my husband. I have seen my GP and she just says it does take a long time. I know many people will identify with this, we have both worked all of our lives and paid into a system that just does not have the resources that it should. Any suggestions about what we can do whilst we are waiting for the assessment.

Hi catsmomzie,
Is this a social services assessment you're waiting for, or an NHS consultant to properly diagnose the disease? Has your GP actually referred you to a hospital memory clinic or similar? What part of the country are you in?
I got my OH referred to a consultant - a memory clinic in an "older persons' support unit" I think within about 3 months. Since then we have been able to see her approx 6 monthly (not that they can do much beyond confirm it's Alzheimer's and prescibe Donepezil) but maybe that's just because we're in London. Haven't been into SS as yet.
 

Avis

Registered User
Nov 2, 2019
106
0
Hi, I am in Australia so we have similar but different problems than yours. I would suggest that you keep a diary of all the difficulties you encounter so that when the assessors finally arrive you have evidence of what you are going through on a day to day basis. Wishing you all the best.
 

catsmomzie

New member
Dec 3, 2019
9
0
Hi catsmomzie,
Is this a social services assessment you're waiting for, or an NHS consultant to properly diagnose the disease? Has your GP actually referred you to a hospital memory clinic or similar? What part of the country are you in?
I got my OH referred to a consultant - a memory clinic in an "older persons' support unit" I think within about 3 months. Since then we have been able to see her approx 6 monthly (not that they can do much beyond confirm it's Alzheimer's and prescibe Donepezil) but maybe that's just because we're in London. Haven't been into SS as yet.

Hi Thank you for your reply. I really dont know. The dr has not been very forthcoming with help. She just said she would refer him but that it may take a long time. I have been again to see if it can be speeded up but she just said, no, it does take a long time. She would not tell me to where he had been referred. I think it is with an nhs consultant but not sure. I am in Birmingham. Things are pretty dire here in all aspects of the health service.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
It sounds as if you are waiting for an appointment at the memory clinic for a diagnosis. I am shocked you still don't have one after 9 months. My mother had memory clinic appointments (London) in 2015 and 2016 and the wait was about two months - certainly no more than three months.

To be honest though, while it will be useful to have a diagnosis, it will make little difference to your day to day life. If you need help from social services in the meantime, you can get it - you can ring Adult Social Services for your area and request a needs assessment. There may not be much additional help forthcoming after diagnosis, I'm sorry to say.
 

catsmomzie

New member
Dec 3, 2019
9
0
It sounds as if you are waiting for an appointment at the memory clinic for a diagnosis. I am shocked you still don't have one after 9 months. My mother had memory clinic appointments (London) in 2015 and 2016 and the wait was about two months - certainly no more than three months.

To be honest though, while it will be useful to have a diagnosis, it will make little difference to your day to day life. If you need help from social services in the meantime, you can get it - you can ring Adult Social Services for your area and request a needs assessment. There may not be much additional help forthcoming after diagnosis, I'm sorry to say.

Hi Thank you for your advice. I do agree that probably nothing will change with day to day life but it would just be nice to have an official assessment. It feels like we have been forgotten. My husband is I think at the early stages but we do not know what the future holds, how quickly he will get worse.
 

catsmomzie

New member
Dec 3, 2019
9
0
Hello @catsmomzie and welcome to DTP

Diagnosis can indeed take a long time. Things that can be put in place straight away (and infact should be, even if its not dementia) are things like wills, POA and if you own your own home think about owning it as tenants in common rather than jointly, so that you can both leave your half to chidren.

Other than that enjoy your time together and make memories. If you have any specific problems, do post about them as Im sure someone will have come across it already. This forum has vast collective knowledge and experience.

Thank you. We have done Power of Att. and Wills etc. Yes, you are right we just have to make the most of every day.
 

catsmomzie

New member
Dec 3, 2019
9
0
Hi, I am in Australia so we have similar but different problems than yours. I would suggest that you keep a diary of all the difficulties you encounter so that when the assessors finally arrive you have evidence of what you are going through on a day to day basis. Wishing you all the best.

Thank you.
 

Roseleigh

Registered User
Dec 26, 2016
347
0
Hi Thank you for your advice. I do agree that probably nothing will change with day to day life but it would just be nice to have an official assessment. It feels like we have been forgotten. My husband is I think at the early stages but we do not know what the future holds, how quickly he will get worse.

This is the awful thing not even a cosultant will be able tell you how long the course of the disease will be.
All you can know about the future is it will get harder. If you want to move house , perhaps to somewhere nearer shops, adult children, smaller garden or anything else you may want to change then do so asap because it will get harder as he becomes more confused, unable to drive, and increasingly hard to care for.
 

Sirena

Registered User
Feb 27, 2018
2,324
0
Hi Thank you for your advice. I do agree that probably nothing will change with day to day life but it would just be nice to have an official assessment. It feels like we have been forgotten. My husband is I think at the early stages but we do not know what the future holds, how quickly he will get worse.

I understand why you want a diagnosis, of course. But it is unlikely that anyone will be able to you how quickly the illness will progress - it's different for each person and varies really widely. The one thing you can be sure of with dementia is that it is unpredictable. I'm sorry you are being kept waiting for so long, but I doubt you will get the answers you want even after diagnosis. I hope you will keep posting, members on here will understand how you feel.
 

catsmomzie

New member
Dec 3, 2019
9
0
This is the awful thing not even a cosultant will be able tell you how long the course of the disease will be.
All you can know about the future is it will get harder. If you want to move house , perhaps to somewhere nearer shops, adult children, smaller garden or anything else you may want to change then do so asap because it will get harder as he becomes more confused, unable to drive, and increasingly hard to care for.

Thank you. We are actually quite well situated for shops and amenities. We do not have any children we can call on but have good friends.
 

catsmomzie

New member
Dec 3, 2019
9
0
I understand why you want a diagnosis, of course. But it is unlikely that anyone will be able to you how quickly the illness will progress - it's different for each person and varies really widely. The one thing you can be sure of with dementia is that it is unpredictable. I'm sorry you are being kept waiting for so long, but I doubt you will get the answers you want even after diagnosis. I hope you will keep posting, members on here will understand how you feel.

Thank you, I certainly will keep posting.
 

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