My dad had a mini stroke last year and a Parkinsons consultant at the hospital saw his hand tremor whilst he was in for the stroke (it had been tremoring for a while - we thought it was due to an carpel tunnel op) and put him on Madopar. We saw her again after a few months and questioned whether the tremors were to do with the carpel tunnel op as the medication was doing nothing. The consultant was very defensive and didn’t agree. We saw her again for a regular check up a few months later and asked if we could decrease the Madopar as it still wasn’t doing anything. The consultant left the room with the nurse and we heard her saying she was going to sign dad off because we’d questioned her and the nurse had to persuade her to keep dad on… She also mentioned dad had vascular parkinsons not parkinsons but didn’t explain any further.
We saw her yesterday and again she kept correcting my mum everytime she mentioned parkinsons, saying my dad had vascular parkinsons. They questioned whether he should still be on Madopar if he has vascular parkinsons and she said no he shouldn’t but didn’t elaborate any further. His tremor is worse so she’s giving him a new prescription but again we don’t know what to do about the Madopar - hoping it will be in the letter she sends to the dr. I looked up vascular parkinsons but it says they don’t get tremors with vascular parkinsons so we’re even more confused. If we question the consultant again, she might sign dad off for good (as it is she says he doesn’t need to come back for a year now as she’s ‘pleased with how he’s doing’). We’re so confused. I feel so hopeless. Dad won’t pay or let me pay for a private consultation so I’m not sure what to do, but I don’t think this consultant is acting in dad’s best interests. Not sure what to do.
Hi and welcome to our friendly forum, @Suffolkdaughter. I can’t imagine how frustrating and upsetting this is for you. You obviously are very involved with your dad’s care and want the best for him, so this scenario must be really stressful. Hopefully our supportive members will be along to commiserate and share any of their own experiences with unhelpful medical care.
I would strongly encourage you to pursue this. You can’t push dad to do anything at the moment but the offer is on the table and you never know. The day may come when he’ll take it up. Meanwhile, have you been in touch with your hospital’s PALS: What is PALS (Patient Advice and Liaison Service)? - NHS? They may be able to do something about this. As well, why not give our helpline a call when they reopen tomorrow to see if they have any advice or can support you with ways to make things better all around? You can reach them on 0808 800 0303,
I really hope you can reach a point when you feel more reassured with your dad’s condition and treatment and that you’ll update us along the way. Taking care of your own physical and mental health right now is so important, and you can read more about this here: Caring for someone with Parkinson's | Parkinson's UK - Looking after Yourself.
Best wishes 
Janice
Forum Moderation Team
Good evening Suffolkdaughter … About 10 years ago I had Prostate Cancer & had a very bad consultant that I didn’t like or trust. So I got myself another consultant.
In your case I would certainly like your Dad to see a consultant that you all trusted. There are poor consultants out there with zero empathy. It would be easy enough to tell your Dad a white lie & say he is seeing a consultant whose first consultation is free & secretly pay it yourself.
You don’t say how old your Dad is … He may have a number of different health problems that cloud the diagnosis.
I have found that where I live there are very few NHS Neurologists. I don’t have a choice. The one I had does not specialise in Parkinson’s [He has just left the NHS, so I have no one official at the moment]. I do have a Parkinson’s nurse who I get on with & I feel I am on the right medication.
Best of luck
Steve2
Thanks for your reply Steve2. My dad’s 75. He’s been as fit and fiddle until the tremor and then the mini stroke last year. Its all really aged him bless him.
Was it easy to get another consultant? Was it NHS or private? I had a look at getting another consultant but it appears you have to get your GP to agree with the need for a second opinion.
Mum and dad did meet with a nurse about his medication (the one who persuaded the consultant not to sign him off) and she gave them her phone number if they had any questions so they’re going to try ringing her regarding the Madopar and confusion about his new diagnosis so fingers crossed.
Tina
Thank you for the information, Janice. It’s much apprecated.
Kind regards,
Tina
Good morning Suffolkdaughter …
Vascular parkinsonism … Vascular parkinsonism (also known as arteriosclerotic parkinsonism) affects people with restricted blood supply to the brain. Sometimes people who have had a mild stroke may develop this form of parkinsonism.
I certainly think your Father ticks the Vascular Parkinson’s box as he has had a mild stroke.
Thinking about what you have said I think your Father will be taken off Madopar [which hasn’t worked] & put on another drug to see if that helps.
I have Atypical Parkinson’s & was first put on Madopar … which didn’t work … I am now on Co-careldopa also known as Sinemet which is working for me.
Best of luck.
Any questions please ask.
Steve2
Hi @Suffolkdaughter I changed consultant after my previous one emailed the Parkinsons Nurse saying that as I was choosing not to follow her advice I should find a different consultant. The Parkinsons Nurse recommended a consultant at a different hospital and asked my gp to refer me. It was over a year on her waiting list though but I’ve now had my first appointment and am very pleased to have one who is more willing to listen to my concerns.
Get a different consultant NhS or go private
Hello again Suffolkdaughter … If you want you could speak to your Father’s GP & ask that your Father be referred privately to a Neurologist. I’m sure he / she will have a list & maybe tell you who he / she recommends. In the past I have been referred privately to Consultants for a knee, brain, spine & cancer. I got to see the relevant consultant within days / a few weeks rather than 12-36 months on the NHS.
Cost wise you will be talking in the region of £200 for the first consultation. If you get on with the consultant you should ask if he takes NHS patients for any follow up.
Best of luck.
Steve2
That sounds like a good idea as their Parkinsons nurse has been very helpful. Thank you!
Thanks Steve.
If you can get down to London you might want to get your Father’s GP to refer him to the National Hospital for Neurology and Neurosurgery, part of UCLH and a centre of excellence. I live in Norwich and get my care for Parkinson’s Disease from there. As a result of a review MRI Brain, I have now been following agonised with Moderate Cerebral Small Vessel Disease. The small veins around and in my brain are prone to getting blocked and each time that happens part of my brain dies - shows up as bright flashes on the MRI. As a result I am now at greater risk of TIAs or a stroke and also vascular dementia.
Doug