So frustrated..

[bluebell83]

Hi

GP referred my mam in October to the Memory Protection Service, someone came to the house to do a written/verbal test which she failed. She's had a CT head and been reviewed by the Neurosurgeon who found a benign meningioma and stated it was not causing her memory problems. We've had visits from OT who have put things in place for her such as an Alexa for her to video call us on, give her alerts to remember to lock the door etc. However, we have had no formal diagnosis I've spoken to the Memory Protection Service today who said she was not under their care and to try the Older Adult Community Treatment Team who I have just spoken to, and they suggested that I try the GP surgery as the Neurosurgeon would have written to the GP outlining any diagnosis and forms of treatment if any. Waiting for the GP to get in touch some time this week....

So, as it stands, I've hit a brick wall, can't believe how long it is taking. Part of me thinks do the OT's know what the diagnosis is as they are providing her with support and aids, would they do this without a diagnosis?

 

[Bunpoots]

Hi @bluebell83 . It does seem a long time to wait! I hope the GP can give you some information soon. I remember the frustration of having to chase to get an answer.

I think OTs will provide equipment without a specific diagnosis as long as the needs are obvious.

Fingers crossed for a quick response from the GP. Let us know what happens.

 

[StressedDaughter]

Hi

GP referred my mam in October to the Memory Protection Service, someone came to the house to do a written/verbal test which she failed. She's had a CT head and been reviewed by the Neurosurgeon who found a benign meningioma and stated it was not causing her memory problems. We've had visits from OT who have put things in place for her such as an Alexa for her to video call us on, give her alerts to remember to lock the door etc. However, we have had no formal diagnosis I've spoken to the Memory Protection Service today who said she was not under their care and to try the Older Adult Community Treatment Team who I have just spoken to, and they suggested that I try the GP surgery as the Neurosurgeon would have written to the GP outlining any diagnosis and forms of treatment if any. Waiting for the GP to get in touch some time this week....

So, as it stands, I've hit a brick wall, can't believe how long it is taking. Part of me thinks do the OT's know what the diagnosis is as they are providing her with support and aids, would they do this without a diagnosis?

The whole process is very frustrating. Mum is still waiting having been referred in June 23. This was expedited in December but still no appointment. I’ve rung again this week - they say they will call back - they don’t!

 

[bluebell83]

It's madness how long the whole process takes. I spoke to the GP surgery finally today, the lady I spoke to was lovely, very helpful. She said there definitely hasn't been a formal diagnosis made yet, she asked had I spoken to the memory team, I said that I had and they had pointed me in the direction of the GP. She said that they're actually waiting for an MRI which Neurosurgery have requested before they take any further steps. Just waiting to find out how long the wait is for an MRI now.......

 

[StressedDaughter]

It's madness how long the whole process takes. I spoke to the GP surgery finally today, the lady I spoke to was lovely, very helpful. She said there definitely hasn't been a formal diagnosis made yet, she asked had I spoken to the memory team, I said that I had and they had pointed me in the direction of the GP. She said that they're actually waiting for an MRI which Neurosurgery have requested before they take any further steps. Just waiting to find out how long the wait is for an MRI now.......

I hope it’s not too long but waiting lists for everything seem grim!

 

[bluebell83]

I hope it’s not too long but waiting lists for everything seem grim!

Here's hoping. I work at the hospital and our waiting lists are long but it's not progressive illnesses so to speak. My worry is that she gets worse while waiting to be seen and there's nothing more to help her without a diagnosis.

 

[mikeb2]

Strange how neurologist think- they think if you continue at work- than your memory is ok- 0 how I wish it was true- but my OH now say he not bothered what anyone think- it wont change a thing