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How to get a proper diagnosis?

cazzann

Registered User
Jun 4, 2020
11
My mother has been having difficulties for quite some time, she has been in hospital recently and they sent for me, my husband went with me and they told us she has some kind of dementia, probably vascular. She has many other illnesses, COPD, heart failure and chronic kidney disease. Her GP is not very helpful as we cannot get a proper diagnosis because of COVID19. We have social services helping out now but she cannot go to the GP's surgery as she would have to get 2 buses, the GP is now refusing to visit her at home and insists its safe for her to travel to them. I live too far away to do all her appointments and a weekly pain patch as she also has Osteoporosis of the spine. She is not as mobile as the GP says, she can just about managed to get about in her flat. To walk to the car park for an appointment is hard for her she is very out of breath. Not sure where we can go from this. What can we do? i am stuck.
 
Last edited:

karaokePete

Registered User
Jul 23, 2017
5,651
N Ireland
Hello @cazzann and welcome to the forum. You have come to the right place for information and support

The best and usual thing to do in this situation is have a chat with your GP, I wonder if you might have a more sympathetic doctor at the surgery. I know some people have gone down the private route but this is not available to all. Many treatable conditions, such as depression, stress, thyroid problems, vitamin deficiencies etc., can cause dementia like symptoms so it's important to have a check-up and rule out other possible causes of the symptoms. Please don't cause additional stress by jumping to the immediate conclusion that it's dementia. On the other hand, if it is dementia then a diagnosis may open up support for you.

Here is a link to a Society Fact sheet about the diagnosis issue. Just click the second line to read or print the document

Assessment and diagnosis (426)
PDF printable version

Now that you have found us I hope you will keep posting as the membership has vast collective knowledge and experience.
 

nellbelles

Volunteer Host
Nov 6, 2008
8,868
leicester
Hello @cazzann and welcome to DTP
My first thought, is your Mum claiming attendance allowance? That might help get the GP to visit..
my second thought is a bit drastic but as there is no way your Mum could get to the surgery I wonder if a letter to the practice manager listing all the reasons that you are requesting a home visit and stating she is A VULNERABLE ADULT, would the SW contact the GP to reinforce how vulnerable your Mum is? I did say it was a bit drastic!
now you have found the forum I hope you will continue to post for further support
 

canary

Registered User
Feb 25, 2014
13,646
South coast
Would a telephone consultation help?
Its not ideal and the main problem is that you dont know exactly when the doctor would call, but if you could arrange to be there when the calls and you put the telephone on speakerphone so that you and your mum can hear, and be heard by, the doctor it can work quite well. OH has had several phone consultations recently and its what I have done - but then I am with him all day, so its easier for me to arrange. If its possible it would mostly be a question of the doctor asking questions, organising blood tests and a referral to the memory clinic.

You might also want to send a letter (or email) to the doctor beforehand outlining the reasons why you are asking for the appointment, together with a brief overview of your mums problems. This would mean that you dont have to say them in front of your mum.
 

imthedaughter

Registered User
Apr 3, 2019
507
Well, the GP can't diagnose her anyway, but they need to make the referral to memory clinic. I would get social services to call and demand a referral, if they will do that, to be honest. And or follow @canary 's sound advice. I got some phone appointments with Dad's GP to tell them about what was happening which was really helpful.

We had a very sympathetic pair of GPs and it still took over a year to get my dad diagnosed, it sounds like the hospital have already had some insight so I am hopeful yours could be a lot faster.
 

cazzann

Registered User
Jun 4, 2020
11
the hospital consultant told me she has dementia, the GP is useless, and not wanting to do any home visits, there lies the problem. she has been in hospital 2 x since the pandemic, a nightmare.
 

cazzann

Registered User
Jun 4, 2020
11
we now have social services involved and she has a 1 daily call. GP says she can visit the practice, its 2 bus rides for her
 

cazzann

Registered User
Jun 4, 2020
11
Would a telephone consultation help?
Its not ideal and the main problem is that you dont know exactly when the doctor would call, but if you could arrange to be there when the calls and you put the telephone on speakerphone so that you and your mum can hear, and be heard by, the doctor it can work quite well. OH has had several phone consultations recently and its what I have done - but then I am with him all day, so its easier for me to arrange. If its possible it would mostly be a question of the doctor asking questions, organising blood tests and a referral to the memory clinic.

You might also want to send a letter (or email) to the doctor beforehand outlining the reasons why you are asking for the appointment, together with a brief overview of your mums problems. This would mean that you dont have to say them in front of your mum.
mum is now deaf, no good on phone
 

canary

Registered User
Feb 25, 2014
13,646
South coast
I have a feeling @cazzann that you are going to have to wait until after the pandemic and the doctor will be willing to do a home visit again. It can take quite a long time to get to diagnosis, so although I understand that you want a diagnosis quickly, it doesnt always work out that way. I would still send in that letter outlining your concerns and your mums symptoms of dementia, so that its there in your mums file.

You can still contact Social Services and ask for a needs assessment, although they too will probably wait until after the pandemic to come out (unless its urgent) and many of the things to support people with dementia, like coffee mornings, dementia hubs and day care are shut at the moment.

Does your mum require help with things like washing and dressing, or need someone to check her medication or make sure she eats a hot meal? Agency carers and meals on wheels are still working and if your mum would be self-funding you can just go ahead and sort it out yourself.

I realise that none of these ideas are complete solutions and possibly none of them may help. Covid has really mucked everything up
 

cazzann

Registered User
Jun 4, 2020
11
My mother had an appointment and the pandemic came about, she has got worse in this time as well. Her GP refuses to do home visits, my mother would have to get 2 buses to get there. We have social services involved and she has a care plan in place. She forgets to eat or says not hungry, so we bought her a pill dispenser machine but still find medications all around her flat. We had to remove her packets of medication as she was just taking what she fancied. This has been going on far longer than we realised. No one will take responsibility for her medications me and my sister live quite a distance from her. She gets one visit from a carer every morning and will not allow them to do anything, its either I will do it later or my daughter will do it. We buy her shopping online, but we have problems with a list this week she has no tea bags as she didn't ask for them. Not sure if she will be self-funding waiting for the assessment on that one. I expect she will pay something but not all. Her GP just says she is not on the extremely vulnerable list, although she has COPD, heart failure, Chronic Kidney disease, high BP, Osteoporosis of the spine. She is 82 years old, and because of the dementia does not understand social distancing. GP thinks she can get the two buses to the surgery, she can hardly walk she is so out of breath, and could not wait at a bus stop either.
 

cazzann

Registered User
Jun 4, 2020
11
mum is now deaf, no good on phone
the place that does the assessments here is closed, they are not doing any, she did have an appointment, it got cancelled because of COVID19, when I phoned again a couple of weeks ago they said they had removed her from their list! No reason.