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Parkinson's diagnosis and sent away with no treatment or follow up

(15 Posts)
muddiboots Tue 30-Aug-16 23:04:18

Does that seem likely?
My dad is 81 and has been progressively deteriorating over the last year. He has been seeing his gp for a variety of things over this time, with no real diagnosis.
I googled and found that his symptoms were completely explained by Parkinson's disease so I sent him and my mum off to the gp armed with a list of symptoms, all highlighted. Gp agreed that was a likely diagnosis and said he would arrange a referral to a neurologist.
An hour later gp phones mum to say he was sorry but couldn't refer him as my dad was diagnosed with Parkinson's 14 mths ago at a geriatric clinic. He had just found the referral letter in his history.
This was an appointment when he started losing weight, when he got back he said that the dr had examined him, watched him walk and said he was fine and made him an appointment for 18 mths time.
They are saying that they diagnosed Parkinson's and sent a letter to the Gp.
This makes no sense to me, dad is perfectly lucid and would have taken in the diagnosis. My mum was waiting outside, surely she would have been called in for a discussion of some kind, it's got to be a fairly life changing diagnosis?
Since then he has seen the gp for Parkinson's type symptoms and has just had various blood tests with no diagnosis. Surely if they knew he had Parkinson's they would have mentioned it?
Just all makes no sense.
Have got a cancellation slot with the neurologist tomorrow to try and see what's happening but just wondered if it was the norm, if diagnosed at this age to just be sent away and left to ones own devices?

chough Wed 31-Aug-16 08:27:49

Hope you got some clear answers at the neurology appointment, muddiboots.
Your dad and mum and yourself seem to have been the victims of a chain of poor communication.
I just came on to say that I have heard that Parkinson's UK is a helpful support charity for people living with the disease.
Good wishes to you and your parents.

Footle Wed 31-Aug-16 10:51:28

chough, read the OP again. There has been no neurology referral, no appt to discuss PD.

Footle Wed 31-Aug-16 10:52:43

And yes, muddiboots, get on to Parkinson's UK straight away.

muddiboots Wed 31-Aug-16 11:20:17

We are going today , am hoping I can go in with them try and see what's going on.
Just seems odd to say yep you have Parkinson's, off you go !!
Thanks, will contact Parkinson's uk

Footle Wed 31-Aug-16 11:21:45

If you feel like posting about what happens next, I'd be interested.

twinkletoedelephant Wed 31-Aug-16 11:25:52

That's pretty much what happened to my dad...
He waited 8 months to see a Parkinson's nurse and nearly a year to see a consultant who was angry that he hadn't seen anyone in the mean time... Gp referred him at least 4 times.
He is finally now on medication and it seems to be helping with the tremors

chough Wed 31-Aug-16 13:39:38

Footle, I understood OP to have said that her dad had a neurology appointment yesterday as someone else had cancelled.
I read the post carefully; sorry if I misunderstood.

chough Wed 31-Aug-16 13:48:04

Appointment today, rather.

Footle Wed 31-Aug-16 14:25:07

chough, it's none of my business anyway , sorry ! Close relative has PD and I can't believe some of the holes in the system.

chough Wed 31-Aug-16 14:28:55

Sorry to hear that, Footle, yes, the system can let people down, I agree.
Hope OP and dad get some help.

StringersBellend Wed 31-Aug-16 14:35:11

It sounds like the GP has cocked up. The letter to your GP was probably so that the GP could call him in for a review and explain it all.

At a guess, I would say that whoever scanned in the letter forgot to code the Parkinson's, so the Parkinson's was not added to your dad's electronic record and therefore it wouldn't have come up on his notes as an active diagnosis.

Either an admin error or a GP being careless. I'd write to your practice manager to ask for an investigation.

Davros Wed 31-Aug-16 15:25:25

At his age he should probably go on Levadopa straight away. Try to avoid Ropinrole and Rasagiline, they cause awful side effects. There were a couple of programmes on Eddie Mair's Ipm Radio 4 a month or so ago, well worth listening to

HateSummer Wed 31-Aug-16 15:35:06

Seems odd and there must have been an admin error, which is ridiculous.

It's good you have a neurologist appointment but at your father's age, he should be seen at the Parkinson's geriatric clinic in your hospital as well. The neurologist appointments weren't helpful for my dad at all.

Also a word of warning, Parkinson's medication is very different for each person. There will have to be a lot of trial and error until your father is happy his symptoms are being dealt with effectively with the correct dosage. If he at all feels too rigid or slow or suffers a lot of dyskinesia he must let your GP know so they can try another dosage.

I hope he gets a proper diagnosis today.

HateSummer Wed 31-Aug-16 15:35:32

His GP *

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