As a general rule please may I ask how often you see a Parkinson’s professional be it a Consultant or Nurse? I have not been reviewed for over two years now and am wondering if this is the “new normal “.
Good morning Welshlady … I last saw my Neurologist about 6 months ago. I was due to see him again December 2023, but he left the NHS & returned to Armenia so in theory I have no Neurologist. But I have had a letter from another NHS Neurologist & I think I am on his list BUT no appointment is scheduled. I saw my Parkinson’s nurse 3 months ago & was put on Sinemet by the the nurse & am seeing him again
in April. My reaction to Sinemet has been very good. I feel I am a lot better than I was. So it would not bother me if I didn’t see a Neurologist while this is still the case.
I was only diagnosed in June / July 2023 so I would expect to be seen more in the short term. So every 3 months to start, then every 6 months going to every
12 months. The Parkinson’s nurse I expect to be seen every 6 months.
I do except that the NHS is under a lot of pressure. Too many people needing to be seen & way too few consultants to see them. If I don’t need to be seen then I am happy to wait till I am. You can imagine the conversation …
Doc … How are you finding Sinemet is dealing with your symptoms?
Steve2 … I feel a lot better thank you.
Doc … So I suggest you carry on taking the Sinemet. Any questions?
Steve2 … No. Bye …
Doc … Bye.
These valuable appointments should be given to Parkinson’s sufferers that really need them.
I don’t know why these routine follow up consultations can’t be done by
Skype / Zoom etc …
Best wishes
Steve2
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I absolutely agree, with everything you said. I was diagnosed in 2016, and was seen quite frequently whilst they arranged DAT and brain scans etc and then ultimately put on Sinemet. I’m generally ok but do have a few issues, and imagine any conversation with my Consultant may go as you describe . However how long should you wait ? As an ex nurse I know I need to have my meds reviewed and will contact my PD nurse, but I guess I really wanted to know on average how often people with PD are seen. Regards Kate
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Hello again Welshlady … Of course if you find you need an appointment then you are talking about 6-12 months before you get one. So maybe have appointments scheduled that you can cancel. Although Parkinson’s is a health issue that can be best judged face to face.
I feel seeing my Parkinson’s nurse is more beneficial than seeing the Neurologist AFTER diagnosis.
My Neurologist specialised in neuropathy not Parkinson’s. His stated opinion to me was that as I had Atypical Parkinson’s & I was wasting my time taking medication as it would have no beneficial effect on me.
Best wishes
Steve2
Hello Welshlady
The minimum standard is 6 monthly reviews. I see my consultant once per year and my Parkinson’s Nurse Specialist once per year each appointment being 6 months apart. I can also contact them in between if I need. Sadly as posts on the forum show, neurology services are not consistent across the country. I am ‘lucky’ in the service I get but it is only the basic minimum and luck really shouldn’t come into it. May I suggest you give the helpline a call to see if they have any information local to you that may help you determine who you need to contact to get back on someone’s radar. You will probably need to stand your ground and ‘jump up and down’ figuratively speaking, to be heard. I wish you luck and do let us know how you get on, it is simply appalling that your experience is shared by many.
tot
I’ m a fairly new diagnosis so I’ve been in contact woth the Pd nurse every 3 months as they build up my drugs. I’m about 9 months from diagnosis and haven’t see a consultant see diagnosis day.
My appointments have been cancelled during the last two years and the Parkinson’s nurse has gone absent without leave also.
My guess is something happened during the last 3 years and neurological conditions have skyrocketed.
Hi Lar, phone up the neurology secretaries at the hospital where you are looked after and ask them when you’re going to be seen. That’s too long without a review.
Podd
I now have another appointment and hopefully this one won’t be cancelled like the last 3 , I am not to worried just plodding along.