Kings College Hospital Visit

My appointment came through for 1st August 2013 – only 2 months after my diagnosis. Well impressed!

I asked a good friend J to accompany me to my first appointment. The trip (by train) included negotiating the underground from Paddington to Victoria then a mainline train to Denmark Hill. It sounded complicated but was in fact quite straight forward. It was nice to have company.

As soon as I entered the waiting room it was clear that this was "Parkinson’s Clinic Day." I looked around at the crowd of patients waiting to be seen, of all shapes and sizes and with varying degrees of disability and I wanted to sob. I had joined the "Parkinson’s Sufferers" club and it hit me like a sledgehammer at that moment.

I wanted to walk right back out again but I resisted the urge and took a seat as instructed. I did my best to avoid looking at anyone else as my mind was racing with thoughts like "she’s obviously worse than you are" or "that could be you in a few years time ..."

Completing my intake forms

Thankfully a nurse came and took us into a side room fairly quickly and handed me a wad of forms that needed to be filled in. These mostly consisted of in-depth questions about my symptoms, medication and lifestyle. Kings is a research and teaching hospital and they don’t do things by halves.

Soon I was called to see Professor RC (hereinafter referred to as The Prof) and he welcomed my friend to sit in on the consultation and asked my permission for a number of medical students to sit in also. (Note: 1)

Discussing medication options

We talked at great length and he looked at my completed forms and asked lots of questions. I had brought with me the medication prescribed by my Swindon Dr X (which I had not yet started.) The Prof expressed surprise that they had been prescribed and explained that they were the "gold standard" of PD medication (i.e. the best) and he would never prescribe them at diagnosis.

My research proved correct as he explained that this medication was at its most effective for the first 10 years so the longer we can delay the commencement of those 10 years, the better.(Note: 2)

The Prof. prescribed a much milder medication (Rasagiline) and said to only start taking it if I felt the need to. His words were "don’t let each day become a struggle, start taking the tablets." He made another appointment for 6 months’ time and added that if I had any questions in the meantime I could email him direct. (Note: 3)

I left feeling reassured

It was a day of extremes – feeling distressed, bewildered, and distraught at what I encountered when I first arrived at the clinic waiting room, compared to when I left the building feeling reassured and relieved that I would be well looked after at Kings.

Notes:

1. One of those students who sat in on my first appointment is now, 6 years later fully qualified and is my Neurology Consultant at Kings.

2. Fast forward 5 years and I have parted company with my Swindon Consultant because

• He didn’t listen to me
• I felt like I was on the “Parkinson’s Conveyor Belt”
• I spent 10 minutes max in a consultation with him once or twice a year (this compares with 1 to 1 and a half hours per consultation 2 to 3 times a year at Kings
• Dr X didn’t do any cognitive, memory or physical tests or examine me physically when I saw him and he didn’t record or monitor my symptoms. (compare this to Kings who get me to fill out questionnaires on every visit about my symptoms, and test my memory, cognitive ability, and perform physical tests and examinations on every visit.)
• Whenever I reported back something of interest from Kings’ that might be relevant to my care he arrogantly dismissed it and didn’t bother to note it down – i.e. thought he knew it all and not willing to learn from others

3. True to his word, I emailed The Prof many times and he always responded. On one occasion when I emailed him at half past midnight he replied at 3am!!