Do you feel your priorities were listened... - Cure Parkinson's
Do you feel your priorities were listened to by your Parkinson's specialist?
I have the best doctor!
I once had an excellent specialist, a geriatrician who specialised in PD, who gave her patients all the time they needed and listened attentively. It seemed a bit weird seeing a geriatrician at the Centre for Elderly Medicine when I was only in my 40s but I soon got used to it! Then, sadly, she retired, and I quickly lost faith in her replacement when he prescribed Azilect while I was taking Fluoxetine - a potentially lethal combination I understand. I asked for referral to a Neurologist, which I got, but I think I'd get better attention from a vet!
My Neurologist is a very nice chap - but as I only get 15 mins once every 12 months with him it is somewhat a futile gesture. Increasingly I get the impression that Support for PD depends on your Post Code
15 minutes once a year!!! That's insane. Where do you live? Your local NHS trust might as well burn money as give you so little time. Do you have a PD nurse to see between appointments? I live near Worcester & I see my consultant twice a year & my PD nurse twice a year - worked so that I see someone with specialist knowledge every 3 months. It works for me.
I obviously need to move to Warwickshire. I live near to Kettering Northants Prior to the NHS cutbacks in April the Area had a full ttime nurse specialist and a part time assistant supporting not only Parkinsons but including a number of other neurological conditions. I found out at the end of APril that the support in this area was being cut back to the Part time post - a cut of 2/3rds. The person holding this role is doing a fantastic job supporting PwP's in the area but it is still a massive cut.
As to the appointment with my Neurologist my most recent was 3rd July - I actually had 17 mins of his time . I had sent him a list of questions in advance and we went through about 2/3rds of them. He had commented that I looked like I was having difficulty when I got out of the chair to go into his office and to finiish I was asked on the way out to make another appointment for July 2014 . My next apointment with the nurse specialist is 16th September prior to that it was November 2012 - and then people wonder why I say I thnk I and anyone else living in North Northants have been abandoned . As we PwP's all know PD is a big enough problem on is own - apologies for this shaggy dog story but as you may guess I am not very happy with the situation
Apologies again honeycomb3 I should have said Worcestershire not Warwickshire
Wow! You chaps with socialized medicine will pass before the Intake Eval is complete. I see my PD Specialist an hour/ either every 3 or 6 months and with my caregiver along. We talk/ask questions for 30-45 minutes and this is in the US military system. The last 10-25 minutes she is busy changing meds and doing re-assessment testing. Then she off and running to next patient. Cuts me off if I talk too much. I am grateful to have her ear that much.
Virtually all of Europe has either publicly sponsored and regulated universal health care or publicly provided universal healthcare.
We have a choice of private care but unless we have insurance it will be expensive.
Yes the NHS can be a Postcode Lottery and under the ConDems is likely to become ever more so as they sell off the NHS bit by bit! (blood-donor service just sold!).
I am fortunate to live in N Devon where services are usually very good, but my Neurologist is based in Exeter so has to travel here one a week or so.
After first diagnosis, about 4 yrs ago, I found it very difficult to get on with my Neuro who seemed very distant/unresponsive - we have got to know each other better now though and things have improved.
15 mins every 3 - 12 months seem to be the norm in the UK, although I don't usually feel rushed.
Having had problems with meds (obsessive compulsive behaviour due to Requip) I currently get to see him 3 monthly; we do have a PD nurse here but quite honestly I don't find her any use and have stopped seeing her
My greatest help comes fron our Parkinson's UK Information and Support Worker who has been a real lifeline for me.
I was amazed you get 15 minutes with your neurologist. I am usually in and out in less than ten minutes. I have had to start requesting the letters he sends to my GP so I can see his opinions
many of which seem to be about me personally.
i.e. He thinks I am an odd Chap! I won't say what I think of him, because I may be odd, but I am Polite. I reckon it is no good wishing to change consultants because they get the notes from the previous one. Before you even go in they have pre judged you, and already have an opinion.
Doctors are like that. They stick together like S*** to a wet Blanket.
I AGRFEE WITH BLONDIR
TH EPOST CODE IS IMPROTANI SEE MY NEURO 1 EVERY 8 JMONTHS WHICH IS A LONG TIEM TO NOT EANY CHNAGES IN ME
*(I HAVE PSP)
;LOL JILL
Hi there Moodyblue,
You are the only other person I'm aware of on this who has had a geriatrician as their consultant. Mine has all the qualities yours had - patience, time, understanding, time, etc. I fear he's about to retire as he's 65 like me & in UK that is the norm. However he is young for his age & will probably return to work but maybe privately & definitely shorter hours so I must be extra nice to him as I really don't want to lose him. It's a pity all doctors aren't trained to treat patients holistically & then given the time to do so. The money spent on training & time would repay itself many times over - but then that's common sense & at present the lunatics seem to be running the asylum!
great doc, will even respond to emails!
She is a Movement Disorder Specialist and she is marvelous. A week ago, she kinda called me on a statement I made that I wanted to be around for the cure. That I was part of it by each contribution/volunteering that I do. I didn't like her reality, but she was right and I got over it.
Where is she located?
I have a great neurologist at Yale I see him every 10 weeks for my Botox injections in my neck and feet! He always spends extra time with me during the injection time!
I have a great neurologist in Seattle, I see him about every 6 months and spend 1/2 hour or more each visit.I was diagnosed in 2006 , but I probably have had PD longer than that. Every time I see my Dr, he encourages me and I like that.
I think my neurologist is great, and he listens well , acceptable of alternative therapies.
I like him
I wish I could find a great neurologist. I am in the Chattanooga, TN area of the US.
I now have a different neuro who is an excellent listener and diagnostitian
I live in Mansfield area and I see consultant twide a year and parkinson nurse twice a year ,they are also helpful and make you feel at ease and can also ring the parkinson nurses if I have any problems.
