A Hope for Better Care

I checked into the clinic and waited for my appointment. Shortly after that time I was called by a doctor, he introduced himself and was a pleasant young man. We headed into one of the rooms and sat down and the doctor asked some questions. The head doctor burst into the room and asked us to go and find another room saying this was the room a senior doctor uses and it needed to be kept empty for him only. The senior doctor was still complaining loudly when I was grabbed by another doctor that politely led me to another room. When it finally settled, I said to the young doctor that I thought this kind of carry on was gone in this day and age. He just shrugged it off and started to take notes and ask questions.

An unfortunate experience

I was telling him I had problems mainly with sleep. I had been taking Requip 12 weeks previously and it took me 12 weeks to go up to 4 mg (in this clinic they only see you every 8/9 months but give you a script for six months and you need to phone the PD Nurse to get another script. If you got no one you left a message which was normal or you emailed). The young doctor told me to stop it and “see how it goes" those were his exact words. I explained to him it took me 12 weeks to slowly get to 4 mg that I could not stop suddenly like that, I had to slowly come off of it like I went on it. He insisted on stopping and put me on Sinemet Cr x2 at night. I protested but he didn’t listen and I got a script for six months with Cr for nighttime and that was that. He was aware I wasn’t happy and reluctant to leave. As I came out, the senior doctor hadn’t commenced his clinic, so the original room was empty. The senior doctor was no where to be seen, there was no PD Nurse around or any nurse in attendance at all. I was to make an appointment for 4/6 months. I left the clinic and swore I would never come back.

Withdrawal symptoms

I felt very unwell in the following days. My family looked everywhere for a neurologist to try and get me seen even in the North of Ireland 🇮🇪 and the UK. Thank God a relative got me an appointment in Dublin. At this stage from the withdrawal of Requip, I could not stand, walk, or get in or out of bed. I then twisted my right knee and tore the meniscus. I had to go to the private VHI clinic to get a knee protector. I could not use the stairs so my bed was brought down to my sitting room, and my family had to stay overnight for nearly three weeks in spite of them having their own families. I thought this was the end - and to top it off my best friend for 20 years died and I could not go to his funeral.

A hope for better Parkinson's care

The private neurologist was extremely kind and listened and changed my medications with precision and care. It took me over a year to get back to where I originally was because stooping Requip so suddenly had huge consequences. I made a complaint about the clinic to the Health Board Hospital. The doctors and PD nurse did not take this lightly. The two senior doctors made apologies to me but I think the most senior doctor only did it because the investigation made him do it. The outcome was the Head of Nursing was very apologetic and promised to do all she could to promote education and teach the patients all about Parkinson’s and included an extra PD nurse (which she has done). The professor who investigated my complaint also apologized sincerely and promised to bring changes. He has also promised further comments like Leaflets and personnel like an OT, physiotherapist, pharmacy inputs and ongoing education and leaflets.

My intention in doing this was never money or revenge, from my Heart and Soul I did not want another person to suffer in the way I did. I think it was all carelessness and there are consequences to carelessness. I am now having to return to this hospital to hopefully be selected for Duopa, I don’t fancy that but I have no choice. This is my difficult story. Thank God I’m out the other end and doing okay.

Katherine Byrne