I'm in a bit of a spot. I've run out of the medication that manages my Parkinson's symptoms and it seems there is little prospect of getting more for at least four days.
When I was first diagnosed, the disease was mild enough for medication to mask many of the symptoms so effectively that some people didn't seem to notice. People with Parkinson's are described as being 'on' when they have taken their medication and that medication is active in their system. As the disease progresses, that 'on' period shrinks and we have to take our meds more frequently. Ten years on from that diagnosis I think most people that I encounter realise that something is not quite right even when I'm 'on'. The drugs effectively top up the dopamine that is lost as a result of Parkinson's so that my brain can continue to regulate what my body is doing. The difference between being off and on feels a bit like the difference between Popeye before and after he has eaten a can of spinach.
My point is that it's pretty important that I take my medicine so why have I let myself run out? It's a bit of a long story.
Last year I was registered with Lloyds Online pharmacy and it all seemed to work pretty well: I ordered items from my prescription and a few days later they arrived through the post. After a while though Lloyds Online were taken over by Pharmacy4u and things started to get trickier. Eventually I got an email to say that they hadn't been able to source the Sastravi that I take for Parkinson's and that I'd have to arrange an alternative with my GP. Given that Sastravi was prescribed by my neurologist who I only get to see once or twice a year, this isn't as simple as they seemed to assume. I certainly wasn't going to get anything sorted before my current stock ran out. After advice from my super-helpful neurology nurse, I joined a local pharmacy instead who seemed to be able to source Sastravi with no problem. Great!
For a while that arrangement worked well too. One bottle of tablets was about enough to last me a week so when I had only two bottles left that was my alert to re-order giving two weeks for the request to be cleared by my GP and for the pharmacy to order it in if necessary. At some point I reached that threshold but when I went to my NHS acccount, Sastravi wasn't on the list of things that I could order. I rang the GP to try and see what was happening and they said that I didn't need any. I countered that I did and, I confess, I was quite impatient. Eventually they approved my request and ordered some more. The next time I went to refill my dosset box I realised that they had started dispensing bigger bottles of Sastravi so I had loads left. The lady on the phone had been absolutely right and I had been dead wrong. I immediately rang back to apologise. The woman I had wronged wasn't there so I asked if they would pass on my apology. They agreed to do so but asked me to consider the effect that I'd had on this lady who had only been trying to help. If she happens to be reading this and if it's any consolation I have thought about it a lot and I am suitably ashamed.
Fast forward to a week before Christmas and my stock seems to be running low but again I notice that Sastravi is missing from the list of prescription items that I can order from my NHS account. "It's OK, don't panic, you've probably got more than you think," I tell myself. A week later it's still not showing and I can see that I haven't got much left at all. I navigate to the 'your prescriptions' page and spot that there is a note against Sastravi to say that I can't order any more until I clear it with the GP. It would have been nice if someone had contacted me to let me know. I ring the GPs and explain my situation. Apparently that is enough to clear the note and they assure me that it will be with the pharmacy by next Tuesday. Counting out my remaining tablets, I can see that I have enough to last me until next Wednesday morning. Phew!
I dutifully give my details at the pharmacy desk after gingerly navigating the thick layer of glass-like ice that covers the car park this morning. My bag, when it arrives, is suspiciously small.
"Is there any more than this?" I ask, voice quavering a little.
"Let me just check that for you."
She taps away at her terminal for a minute or two.
"We've got another request but we don't stock that item I'm afraid. We can order it in for you which takes four days or I can cancel this so that you can take it to another pharmacy?"
Do I gamble on finding somewhere that does stock this seemingly rarefied item or do I go for the 'safe' option of spending four days largely incapacitated while I wait for the order to come through?
"I'll ring the hospital to see what they say."
The order is cancelled
"Thanks for calling Neurology Nursing. Please leave your details and we'll aim to get back to you within three working days," the answerphone says.
They've come through for me before though so I cross my fingers, sit tight and start typing this blog entry. Sure enough, a couple of hours later, my phone rings and it's one of the neurology nurses. As always, she is sympathetic, unflappable and incredibly helpful. Her database shows that my prescription is in stock in Boots just down the road albeit under the name Stalevo rather than Sastravi. Hooray!
"I'm sorry our Pharmacy team are busy right now. Please try again later," the Boots answerphone tells me.
No matter, I can just go down there. Sure enough when I arrive, I can see that the pharmacy team are busy so there's a short wait.
"I'm sorry, we don't stock that item but I can order it for you?"
"I've spoken to a specialist nurse who assured me that you have Stalevo which is exactly the same thing under a different name."
She checks her terminal.
"Yes, we have got that in stock but we're not allowed to give out anything with a different name from what's on your prescription."
I put on a pleading expression. She looks apologetic. I look disappointed. She still looks apologetic. My repertoire of expressions has let me down once again.
Back home, I record an update on the neurology nurses' answerphone. Within half an hour they ring back to tell me that they've sent an urgent email to my doctor asking to re-word the prescription to include Stalevo. They really are the best.
I ring the GP surgery to make sure they've received it. They have! I'll get a text when the doctor has processed it and sent it to my pharmacy. Can they send the request directly to Boots please? They change my pharmacy to Boots. Good idea! Do they know how long it will take? It depends on how busy the doctor is and I'll receive a text when they've done it. Fair enough.
An hour later I get a notification from Boots:
We've received your prescription ...
I was expecting it to be from the GP but whatever. I jump in the car and drive to Boots. My elation sours as I read the rest of the text while I queue:
Please wait & we'll text you when the medication is ready.
Bugger! Maybe I can brazen it out?
"I received this text to say you received my prescription. It says I need to wait but it's quite urgent. I need the medication today and the specialist nurse spotted that you have it in stock under a different brand name. The name I need is Stalevo."
The pharmacist processes this information and consults her screen then goes to the printer.
"We've got a new prescription for you but it says Sastravi."
I hold my head in my hands.
"I'll ring my doctors back again," I say.
"Do you want me to order the Sastravi for you anyway? We can get it by tomorrow?"
"Will that mean I can't order the Stalevo?"
"I'm not sure if you'd be able to order the Stalevo if we order this."
"I'll try and ring the doctors again."
Speaking to the GP surgery from the car park I feel like I've slipped into another dimension. Apparently my GP hasn't processed my request yet so the Boots text relates to the request the GP sent them yesterday. Except Boots wasn't my pharmacy until an hour and a half ago. We go round in circles for a bit before she rightly concludes that my request is still flagged as unprocessed so I just need to wait for a text from my GP.
Ten minutes later a text arrives from my GP. They've changed the prescription to Stalevo and sent it to Boots. Nice one GP!
Back to Boots. They've got the new prescription! But they haven't got any Stalevo either. Neither have any of the other local Boots. They suggest an alternative pharmacy. It's the one I started in this morning. I tell them that the neurology nurse's database flagged that this Boots did have Stalevo but there seems to be no getting round the fact that they haven't actually got any.
She orders some Stalevo which should arrive tomorrow. She files it under 'acute' to try and speed it along. Perhaps my expressions are still working a little magic after all.
I gambled and lost. Although I'll get my meds in one day instead of four so maybe I won? The day ahead is going to pose some problems and I'll find out just how dependent on medicine I really am but at least it's just a day.
Thanks to everyone who read this especially if you got this far. I didn't realise quite what a saga it was going to become.
In this video Lou Reed describes the Velvet Underground song "I'm Waiting for the Man" as being about "a man's love for a controlled substance". Lou, if you're reading this in rock-star Valhalla, I know just how you feel.
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