My neuro writes all the persriptions fo my PD, I have a primary care dr who basically coordinates it all. The other fun stuff, but when I'm given a chage or what ever it happens that day.
Doctor? What doctor? I don't have a doctor. Or insurance. I have to wait until my Parkinsons Research people call me before I can address my needs and even then I don't think that the guidelines for their grant money permit them to do anything but observe my progress. I got a perscription for meds but I don't think that I am allowed to ask a question regarding the effectiveness of the pills without violating my participation in this important study. It's frustrating.
This is atrocious conduct. Getting the correct medication is so important and being able to take it at the correct time. Contact your NHS Regional team and complain long and loud. There's always the local paper; they well be interested. You have every right. As for your GP, well, hanging is too good for her, it's good kick up the arse she needs!
Alternatively you could move to Angus in the N>E> of Scotland. My team are brilliant. Cannot speak more highly of their respect, knowledge and concern for their patients especially the "Neuro" Ward at Stracathro Hospital.
Hope you now have correct meds but don't hold your breath.
If you are in the UK, ring up the hospital where you see your neuro and request his secretaries number. Then call her/him and explain the situation and ask whether she/he can clarify what needs doing with your PG. This should cut down the time waiting for something to be resolved. OR get the Parkinsons nurse to sort it out. That will be your needs sorted out, and then make a complaint about the wrong prescription. Things are not working great in the NHS at the moment as everything has been run into the ground after the health and social care legislation. I would not go too high with the complaint at this time, but make it official and in writing. Maybe to the practice committee. IF you get no reply, then go higher.
I normally see my Neuro , who i think doesn't really understand PD , who does nothing . So I go to the PD Specialist Nurse who then listens to me and , because she's not able to prescribe , writes to my GP with her "recommendation" . I then have to wait about 10days before going to see my GP who then writes me a presciption - sounds complicated but it seems to work.Although , the PD "specialist" locally is a Geriatrics Consultant who i can't get to see because i'm not old enough (i'm 46) !! It all seems a bit "hit and miss" for me.....
Hard to know who to trust, I'm not so concerened about age, my youngest daughter is a RN, and before she went to nursing school, she worked in an assisted care facility, became certified in dementia, and elderly care, she lived with it, saw the effect day in and day out. More I think than ANY MD. Not that I'm proud of her or anything, but when she had a paticient who she knew was about to pass away and had no family, she went in to sit with her on her own time so she wouldn't be alone. Age doesn't tranlate to knowlede, caring, or compassion.
In the US, our Movement Disorder Specialist writes his own scripts. No matter which specialist we see they order any meds themselves. We report what we take to our Primary doctor who in general oversees our care and gets written consult notes from every specialist we see. Why can't they fax the info instead of mailing a letter. It would be much faster. Do you have electronic medical records in the UK? Or to they still have paper charts? With EMR's the program sends the order direct to the pharmacy, lab or where ever. If it is a referral or consult it is transferred electronically directly into the chart.
I hope your system improves soon as this wait time is very detrimental.
for me neurologists were of little use. I would come into office with a stack of "research" I had done online for alternative treatments and new drugs and therapies and would not get any feedback or even a show of interest. So I went to the Parkinson's center and this is where I found the compassion and the willingness to talk to me that I was looking for. I think if you are unhappy with your neurologist you should keep looking. You are going to have this doctor for the rest of your life, you should have a saatisfactory relationship with him/her.
I've seen 7 (yes Seven) different Neuros in the pas 4yrs - the one i see now has seen me twice so it's a kind of record. Thanks to the UK Govmt for making up the idea of Trust status and them being self-governing - pity the "management" is so poor
I am in the usa and my neuro writes all of my prescriptions. Whenever I have a med change, he speaks to a pd specialist who I also see, and they make the decision together. This does take some time.
Our Parkinson's nurse can prescribe so we are lucky here. I think get back to the Consultant's secretary is the best move. Make sure it was sent and then go and sit in the GP waiting room until somebody looks your notes out and traces the problem.
When we lived in another area of the country we had this happen once.The GP saw to it that it never happened again. I think somebody in the GP admin team got a flea in their ear.
My wife and i joined the Wisconson parkinsons Assoc. Great sourse of info, and support. We need that kind of support for both of us, I'm the PWP, and she is my support.
Please dont give up. Im afraid we all have to be our own advocates and it is hard. You can get support from PALS ( patient advocacy and liaison service). There should be an office at your local hospital. In my experience you get good and fast results with their involvement. I have used them a number of times. Lindylanka gives good advice (as do others) and you could ask PALS to contact the secretary on your behalf if the whole thing seems difficult or daunting.
Do you receive a copy of the specialist letter to your GP? It is usual practice for the patient to get a copy. If you dont i would request one gets sent each consultation, that way you can check medication as well as having a record of your visit.
Your care and medication budget is held by your GP which is why scripts are not written by the specialist.
I went to eight Neuros before I found one that I felt knew about the disease and cared about my well being. I think years ago doctors chose that profession because they would be rich. I remember well everyone thinking they should be a doctor or a lawyer to make it big in society.l am sure there were a few who became doctors to find cures and to help people get well. I have seen very few who remember the HYpocratic Oath they took. After long searches and many hours in waiting rooms, I found a few doctors who are sincerely interested in my well being and in learning more about PD if they weren't already experts. I am so happy now. It is a relief to know someone cares and knows what to do for me. WHEn it comes to health care we most be pro-active and help ourselves. I got names from highly respected doctors in other fields and from PD patients who liked or didn't like their Neuro. GOod LUck!
It is a chore to find good doctors here too. Most of them will not take patients on disability or medicare because of the paper work involved. The government has cut back on the amount they will pay the physicians. So it goes back to those with money will receive the better medical care.
Not to complain as I could have been born to a woman in the African villages.
It all comes down to our personal desire to get well and search for help. THey are out there!
I think we are hard done by . but my word compared to some we are lucky ..
I agree I think LyndyLanka 's comments are right .
It sounds like early days for you but I have learned to yake things in my hands .
I search and read - search and read as much as possible about Parkinsins and it's affects .
I keep records
Only a lay person have learned to trust my gut feeling but after all you visit the consultant / GP / Nurse listen try their advice . But they don't come home and live with it .
I always try and write everything I want to say to the consultant on my next visit , he then doesnt have to listen to my ramblings and I dont come away and wish I had'nt left something out .We usually get to see him at 4 monthly intervals .
When I get desperate and need more help I usually Ring his Secretary and ask for an earlier appt or if he has time to get back to me . HE USUALLY DOES , BUT ! the recent economic situation makes things harder for everyone .
Not a very good time for patients of any kind or the medical proffesional
They can only go by what you tell them and your reactions .
I live in S Wales UK .
Get to see a care of the Elderly consultant who sees young and old patients esp with Parkinsons , and our GP is very supportive to my husband the sufferer but also to my self . He obviously cares about the affects on me...
The consultants decides which medication and gives us the first prescription or enough for 2 months usually and when we next need them it is usually on our GPs system for us to collect or have delivered .
Like I first saID mayb e we are one of the lucky ones
Content on HealthUnlocked does not replace the relationship between you and doctors or other healthcare professionals nor the advice you receive from them.
Never delay seeking advice or dialling emergency services because of something that you have read on HealthUnlocked.
Possible, Probable or Confirmed?
It's my health, my body...why is it that my opinion does not count? I am angry, frustrated and feeling helpless!
Neurologist recommendation 
Addiction to Sinemet
Changing Meds to balance motor fluctuation and dyskinesia - Still working on it. 
