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Medical Advice

njordan

New member
Jan 22, 2022
1
0
Hi,

My Nan was diagnosed with early onset dementia last year and has the doctors believing that it's not very bad even though her memory has been deteriorating for years.

She currently lives at home with my Grandad who is 80 and has parkinsons disease. My Dad is not particularly helpful so my sister and I are handling everything for them, from sorting bills and making calls etc. However we both work full time and only get the information they give us.

The problem we are having is that my nan has lots of doctors appointments that she attends on her own, but after walking out she has no memory of what has been said. She is still able to make decisions about her health but we are struggling as we do not know what she has been told and what appointments or treatments she has been prescribed. My grandad finds it extremely hard to sort through as he doesn't understand what these are for.

What I want to know is is there a way that records of the doctors appointments can be sent to myself or my sister so we can keep track of what she has been diagnosed with and what medication she has been prescribed? We aren't around to go to every doctors appointment with her and we're not allowed due to covid, but we're also worried that she's not being 100% honest with her doctor and allowing them to know the full extent of her troubles. We're trying to help as much as we can as we don't want our grandad to have to worry about things he doesn't understand on top of his own worries.

So has anyone had any experience on this front and will her doctors speak to us about it or will we be shut down on the patient confidentiality front?

Any advice would be greatly appreciated! TIA
 

Peony21

Registered User
Dec 27, 2021
38
0
Many GPS offer patients option to register for online access to records, appointments, prescriptions etc. Could you set that up for your grandma, or for your grandad or you to be a Registered contact? If your grandad or grandma like the idea of booking online, ordering prescriptions etc, they might welcome your help to set up login and account. They might then also be open to you helping with bookings etc, in which case you could offer to do it for them, or ask them if they're happy for you to have access to it to do things for them. Good luck.
 

Peony21

Registered User
Dec 27, 2021
38
0
Hi,

My Nan was diagnosed with early onset dementia last year and has the doctors believing that it's not very bad even though her memory has been deteriorating for years.

She currently lives at home with my Grandad who is 80 and has parkinsons disease. My Dad is not particularly helpful so my sister and I are handling everything for them, from sorting bills and making calls etc. However we both work full time and only get the information they give us.

The problem we are having is that my nan has lots of doctors appointments that she attends on her own, but after walking out she has no memory of what has been said. She is still able to make decisions about her health but we are struggling as we do not know what she has been told and what appointments or treatments she has been prescribed. My grandad finds it extremely hard to sort through as he doesn't understand what these are for.

What I want to know is is there a way that records of the doctors appointments can be sent to myself or my sister so we can keep track of what she has been diagnosed with and what medication she has been prescribed? We aren't around to go to every doctors appointment with her and we're not allowed due to covid, but we're also worried that she's not being 100% honest with her doctor and allowing them to know the full extent of her troubles. We're trying to help as much as we can as we don't want our grandad to have to worry about things he doesn't understand on top of his own worries.

So has anyone had any experience on this front and will her doctors speak to us about it or will we be shut down on the patient confidentiality front?

Any advice would be greatly appreciated! TIA
Also, whilst there is the issue of confidentiality, as you rightly flag up, maybe you could offer to help your grandad send an email to the gp to express his difficulties and worries about your grandma. If the gp is not willing or able to discuss without your grandma's consent, they will at least be aware of what's happening and might make a suggestion to your grandma at next visit re having a named contact etc.
 

nae sporran

Volunteer Host
Oct 29, 2014
9,093
0
Bristol
Hullo and welcome @njordan. Do you or your sister have Power of Attorney for your Nan ? If she would grant you that then you can register it with her GP to give you a chance to discuss her health over the phone.
 

Grannie G

Volunteer Moderator
Apr 3, 2006
75,844
0
Kent
Hello @njordan

I would contact your Nan`s GP and explain the situation. It is in your Nan`s best interests for you to know her state of health.

I would also try to persuade your Nan and Granddad to let you have a Lasting Power of Attorney so you could act for them in an emergency.
 

nitram

Registered User
Apr 6, 2011
24,907
0
North Manchester
If you both get an NHS login it may be possible to arrange that your Nan's NHS profile on the app is linked to yours allowing you to act as her proxy.
You both have to be registered at the same GP who agrees and uses defined software.
Although NHS login expects you to use a smartphone this is not essential, I run it on a PC as I don't have a smartphone.
 
Last edited:

canary

Registered User
Feb 25, 2014
18,148
0
South coast
I think you are right to be worried about your nan going to appointments on her own. My OH used to go to appointments on his own and it wasnt until much later and after problems arose that I discovered that he was telling the doctors a load of untruths and then coming home and telling me a lot of untruths about what the doctor said. Once I discovered this I always accompanied him to appointments. I didnt ask him, I just said I would give him a lift and then simply walked into the consulting room with him.

You are still able to go into GP surgeries, hospitals etc with someone with dementia - there is an exception to the covid rules in this case. OH has had several appointments during lockdown (the last one just 2 weeks ago) and there were no problems with me going in with him. Another thing I do to make sure that the doctors know what is actually going on (not just what OH tells them!) is I write a letter about a week before the appointment and send it to the relevant doctor bullet pointing all my observations and concerns in an easy to read way. That way I know that the doctor will have read the letter and know the truth about the situation before seeing OH. I would certainly recommend you do this (you might find a way to send something by email), especially if your nan continues to go by herself. You can also explain that she cannot remember what she has been told and so no-one at home knows what is going on and what she is supposed to be doing.
 

jennifer1967

Registered User
Mar 15, 2020
10,931
0
Southampton
i cant go with my husband so one of my children goes with him to hospital appt and make sure they are listening properly and tell me exactly what was said. if its the doctors, he does go to blood tests and diabetes but if there are some new meds or need to ask questions they either phone me or write down the new meds. the phone appts are actually really helpful as he always awards me the phone so i know exactly whats happening
 

Yankeeabroad

Registered User
Oct 24, 2021
72
0
Hi & welcome.
I started attending my parents appointments (both have dementia) virtually via FaceTime or sometimes just the mobile phone on speaker. The doctors have been very accommodating of this because of the dementia and this allows them to get even the most basic info (such as medications) accurately. There has not been a privacy issue (they are in the US with prett strict laws) as we are using a personal phone — basically the same as your Nan inviting you in to the appointment with her. The doctors will not facilitate these calls though.

I also have online access to most of their doctors and medical history as well as messaging. As @canary said, it‘s a good idea to send a letter or online note before the appointment detailing any observations or problems. My dad has dysphasia (can’t find words, particularly under pressure) and this really helps the doctors while allowing my dad a sense of control over his appointment. Most of their doctors also respond quicker electronically to any specific questions I have about care and treatment.
 

Bearz77

Registered User
Jan 18, 2020
83
0
It was a struggle but I managed to get my mum to sign the form that allowed me to have access to mum’s medical records even though at that stage I didn’t have poa. I’d written letters to the doctor to say I had concerns about memory loss, vocab loss and disorientation before this. They asked her in for a review but she wouldn’t let me in and nothing came of it (found out after I’d got access that she’d refused to be referred to the memory clinic). When eventually she gave me access to her records it allowed me to phone up after her appointments to see what the accurate conclusions were. Here’s some info: https://www.nhs.uk/common-health-qu...someone-elses-medical-records-health-records/
 

Wildflowerlady

Registered User
Sep 30, 2019
912
0
When I attend my partners appointments I always get asked about my relationship to him its the same at GP surgery and hospital. I think the age gap makes them question if I am a carer or his daughter.
My dads GP surgery once said that if my dad was happy to sign a letter that I could draft they would be happy to discuss his health with sister or I. The letter never got signed despite my doing it but only because sister deemed it unnecessary. Fortunately dads GP was happy to discuss his medical needs but maybe because he had met sister and I together when dads LPA was set up and dad comfortable for us to be there. GP did sign dads LPA and witnessed signatures.