How to get a diagnosis for my parent.. why is the GP stalling when time is precious?

[kathy123]

I'm new here, and I joined because I'm concerned for my mum's wellbeing. For the past year and a half, gradually I have noticed changes in mum's demeanour and abilities (i.e. with housework or lack of, personal hygiene, skills using tv remote etc). I have gotten more involved in helping mum manage GP appointments and her prescriptions etc. My mum would have had regular blood tests due to hypothyroidism. But since around February 2017, I started going to GP appointments with mum and I raised my concerns with mum's GP, that I was worried she was suffering from memory loss etc. I discovered that as a result of mum starting to get confused with her medication, it meant her dose of thyroxine was all over the place.. missing days, then over medicating on other days. this is dangerous! (i have now got her onto using the weekly Monday to Sunday blister pack containing all her meds, and my dad has got more proactive with assisting her. I live about 10 miles away and I don't drive, logistically it's not easy to oversee her medication everyday)

Since March I have been going back and forward with mum to the docs.. they said they want to make sure her thyroid is working well, so they can rule that out as possible cause of memory loss symptoms. This is starting to get frustrating.. how many months of blood tests does it take to make sure her thyroid is okay?

As a family we desperately need to know what is actually wrong with mum (she's 77, dad is 86). When will the GP refer my mum for memory tests/MRI? What's the process? I feel like they can't see what I see. My mum no longer knows how to use a washing machine, she is incapable of doing any housework.. not knowing how to plan things out. She can't follow a conversation, and comes out with strange sentences that don't relate to what we are talking about. I change her bed, and notice the smell of urine.. She was always so meticulous with her personal hygiene.

My question is, at what point does the patient's GP take family's concerns seriously? All I am getting is.. 'we will keep an eye on things' and 'lets book you in for another blood test'. Knowledge is power they say!! Can anyone advise me on what I need to do next to get mum's GP on side?

 

[Kevinl]

Hi Kathy, welcome to TP
My wife became ill in her early 50's. so much younger than your mum. The doctors started of blaming the menopause, the kids leaving home, depression...anything they could think of. Then they found she had a thyroid problem too and started treating that too but nothing changed.
Eventually (about 3 years I think) she'd got so bad that the GP had to take notice, did a memory assessment test and referred her to the memory clinic. That was quite quick and it only took a few weeks to get an MRI scan which was inconclusive and then a SPECT scan which lead to a diagnosis of Mixed, Atypical AZ.
They prescribed Donepezil (called Aricept in those days) but whether it does anything or not is a matter of opinion, certainly she carried one getting worse and the medication only helps slow down the symptoms, there is no "cure" or anything that makes anyone better, you can just slow down the progress in certain types of AZ.
Memory clinics once they've diagnosed either just see you every 6 months, year or discharge you back to the GP.
To be frank, don't expect that a diagnosis will do anything other than confirm what you already know, there is no treatment and in many parts of the country very little help.
Most of the help; AZ society, AGEUK, dementia cafes and the like don't necessarily need a diagnosis to offer help and these are charities not the NHS/Social Services.
The GP should be referring her on if for no other reason than to eliminate any other possible causes within the brain.
K

 

[Georgina63]

Hi kathy123

Welcome to TP. Your post sounds quite familiar and similar to the situation I was in with my parents. Getting diagnoses in our case was important to getting the right services and support in place for my parents. Go back to the GP and insist on a referral to the Memory clinic as you know what is wrong. Take your notes of what's been happening if necessary. If the GP, for whatever reason, is not forthcoming, I would definitely recommend your local Alzheimer's society - I found them extremely helpful in getting the ball rolling and pointing me in the right direction. I hope you are able to get things moving. Take Care, Georgina x

 

[LilyJ]

Just a little word of caution, it really can take many months to get the thyroid function back on an even keel; it can be a bit trial & error.
That said, I agree that it's well worth pressing the GP for a referral. Not that the Memory Clinic is necessarily much use, ours certainly isn't!
I hope that you can find help & support. You can ring your local Adult Social Services for a care assessment of your Mum & a Carer's Assessment for you & your Dad.

 

[Oh Knickers]

If you have POA for Health and Welfare in place you can ask for a second opinion. That second opinion should be the local Gerontologist or Memory Clinic. Your mum is entitled to a second opnion and has a legal right to one.

Many moons ago I worked as a Medical Secretary. One patient insisted on a second opinion as he did not believe the GP or the Orthopaedics consultants at the hopsital. He got sent to Harley Street. (Those were the days). The diagnosis remained the same. He had a broken leg and needed to be in a cast!