The day started well enough. I had another restful night’s sleep. Bringing the camping mattress to add a few centimetres to the bed’s height turned out to be a good idea after all. I tried out the new pyjamas I collected from ASDA in Stevenage the other day. They are comfortable enough, but clearly cut for people over 9 feet tall. Either that or the latest fashion is to wear the waistband above the chest. For lounging around the house, they meet the brief (no pun intended).
After pottering around for a bit, I fixed myself up with a couple of slices of buttered toast for breakfast, with the full intention of settling into a relaxing, stress-free day. That is, after all, a big part of why I’m here. It was at this point that my morning took somewhat of a turn for the worse, and those intentions didn’t survive the morning. When I was at the hospital in Maastricht receiving my diagnosis from the neurologist, we discussed the option of his prescribing the medication for me there and then, versus waiting until I could see my own neurologist. The idea was that it might make more sense to have everything under the supervision of my own neurologist. As I wrote in day 1’s blog entry, we also discussed delaying the start of the medication until after this UK trip, just in case there were side effects or other complications.
It had already taken a few weeks after my referral before I got the callup from my own neurologist’s clinic. I noted the date in my calendar, and a couple of weeks later, Sandy and I went in for that consultation. Due to a miscommunication, we were informed upon arrival that we were exactly one month too early. That was frustrating to say the least, but this was quite likely my mistake, so there was little I could do. I pressed them on whether I could see the neurologist sooner, as it seemed like a nearly 2-month wait was a little excessive. Alas, the holiday season meant that they were just too busy to get me an earlier appointment. So be it. I left the original appointment in place, but we decided in the meantime to contact the neurologist in Maastricht who diagnosed me and ask him whether his option of prescribing the medication was still available. This is where things first started to go awry. The assistant whom I spoke to seemed put out by my request to ask the neurologist to write the prescription. He wasn’t available, as he was busy with his duties. I pressed her, explaining this was the original plan. She said she could try and contact the neurologist. “Ok, so should I perhaps call back in half an hour?” She said I could try that.
When I called back, the neurologist still wasn’t available, and I was again being treated as though I was asking for things beyond what they felt was reasonable. This was really starting to annoy me. On this second call, a different assistant told me that if I couldn’t get in to see my own neurologist within a month, I shouldn’t expect any faster treatment from them. Seriously!? After some more pressing from me, including using a slightly more forceful tone than I would normally use, she eventually said she would contact the neurologist and ‘see what they could do’. I wasn’t happy with this non-committal and open-ended arrangement, so I pressed them again on what I should expect and when I should expect to hear back. Do I wait half an hour? Until tomorrow? Next week? Next month? Alas, no such commitment or clarification was forthcoming. At this point, it was clear the assistant just wanted to end the call and get rid of me.
I was seeing red by the time that call ended—so much so that I resolved to submit a complaint. I called the hospital’s main number and was directed to a page on their website. Sadly, no option to speak with a real human was available, so I compiled my complaint and submitted it online.
This morning, I received an unexpected call from the hospital’s complaints department. The discussion started reasonably enough, but the woman’s tone and demeanour quickly left me with the distinct impression she wasn’t especially sincere about wanting to address my complaint—at least not to my level of satisfaction. She offered me two options. I could go on a 4-6 week waiting list for a phone conversation with the complaints commissioner, or she could send a message to the neurology department informing them of my complaint. I asked what would happen after she sent a message to the department, and, more to the point, what happens if they don’t react to that? What does the remainder of the complaints process look like? From this point, the situation and resulting tension between us deteriorated rapidly. “We don’t mediate for non-medical complaints.” What? Who does mediate for non-medical complaints? She heavily implied there was effectively no further recourse for me. That now means I have two complaints that need addressing. The first complaint is about how I was originally treated, and now the second is about the clearly unacceptably deficient complaints process itself. I wasn’t going to let this go.
The exchange went downhill from there until the call fell apart entirely, after I raised my voice to let her know that a complaints process that excludes any non-medical issue was simply absurd.
I went back to the complaints submission form and submitted a very carefully revised complaint, this time pointing out the absurdity of the situation. I even went as far as to cite the relevant Dutch laws and governance they are compelled by. As if by magic, I received a personal email response from the actual complaints commissioner not half an hour later. Although worded in a guarded way, she clearly backtracked on the issues I brought to her attention and now offered me a 2-week calendar slot for a formal complaints discussion call.
The satisfaction of standing my ground, and having something to show for it, did wonders for my stress levels, which now started tapering off. However, the whole episode has left me wondering whether I am pushing these things too hard. Am I becoming more cantankerous and argumentative as I age? I would argue not, but I do wonder. I have found myself ‘going to battle’ in various situations more frequently in recent years. That’s either a coincidence, or I’m starting to suffer from ‘grumpy old man syndrome’. At this point, it’s a coin toss.
Stress levels were further reduced with the impromptu decision for us to all go for a relaxing drive around the surrounding countryside. To say this part of the world is idyllic would be a gross understatement. Rolling hills, lush greenery, picturesque fields and quaint winding lanes make this a truly pleasant place to be. We stopped at numerous points along the country lanes to pick blackberries from the plethora of thickets dotted around the place. We also trekked into some fields, exploring the banks of the River Severn and some of its tributaries. At one point, we ditched our shoes, rolled up our trousers, and waded into the crystal clear, fast-moving waters. I did notice that I seemed a lot less stable on my feet as I waded barefoot and knee-deep through the water rapids. I found myself wondering just how much of that might be influenced by Parkinson’s. Is this gradual loss of stability just me getting older, or is Parkinson’s partly to blame? It’s starting to look like second-guessing such things is going to be the new norm for me.
Although I didn’t bring my DSLR, I took some nice shots of the scenery throughout the day with my iPhone. After a couple of hours, we came back with two large punnets of blackberries, and many more pleasant memories.
Back at home, we whipped up a few sandwiches for lunch, and spent some more time enjoying the summer sunshine in the garden. John has a dartboard in the garage, so we enjoyed a couple of rounds of Cricket. Once again, I wondered whether my throwing arm tremor was the cause of my dismal performance. More likely, I’m just crap at darts.
While playing darts, or more accurately ‘throwing the darts aimlessly at the board and hoping for the best’, Jae called. She wanted to confirm the colour of the new iPhone we promised her for graduating and passing her driver’s test. Passing ‘only’ took 4 attempts…all of which I paid for as part of an earlier Christmas gift commitment! Anyway, I digress. We flipped on the video, and she had an impromptu tete-a-tete with her uncle John, so that was nice.
John pointed out there was a country farmer’s fair on tomorrow. The Trefeglwys Show is advertised approximately as follows:
“Join us on Saturday 1st August 2026 for a traditional country show with livestock, food, shopping and family entertainment.”
At just £6, and with perfect weather forecast, why would I not attend? Actually, there is one potential reason. I still don’t have my wallet, so visiting the show will require me to pay contactless using my iPhone. I reached out to the organisers via their Facebook page, and they were good enough to confirm that they do indeed accept contactless payments.
We rounded out the day, as is the norm here, with an evening in front of the TV watching quiz shows, shouting answers at the flatscreen.