We need to find a new pharmacist. Yes, another one. I’ve explained before about the difficulties involved in getting a regular supply of the medicines Amy takes on a long-term basis – the to-ing and fro-ing between GP and pharmacy, the debates over whether certain things can be supplied, and all the rest. I thought we had it sorted when we found a new pharmacist last year who was able to provide Amy’s epilepsy medication without any drama.
But it’s all gone wrong. The thing I’ve noticed with the NHS is that if you get into a good routine with something, don’t attempt to change it. Don’t try to add anything new, or take anything away, or ask for it to be done differently. Just thank your lucky stars that it’s working and you can get on with your life.
I forgot this rule when, back in March, Amy’s neurologist picked up signs of dystonia in her neck and arms and advised that she should start taking a tiny dose of trihexiphenidyl, a drug that helps tightened muscles relax. I assumed, naively, that it would be a simple matter of adding a new medication to the prescription list. I discussed it with our community paediatrician, who said that the GP should prescribe it and wrote her a detailed letter explaining what was proposed and what the treatment plan (gradually increasing the dose over a few weeks and then reviewing) would look like.
Still with me? The GP, it turned out, did not agree. The GP pointed out that trihexiphenidyl isn’t licensed for children – although is certainly used by kids like Amy, and parents and doctors report it is effective – and so should (in the GP’s opinion) be prescribed in secondary care, by a consultant. In other words, she wanted our neurologist or community paediatrician to take responsibility for giving Amy this medicine in the first instance. If it works out fine, she explained, she would do repeat prescriptions in the future.
Okay. But can’t you discuss it directly with the consultant, I asked. The answer that came back was one of those answers that doesn’t use the word ‘no’ but you’re left in no doubt that it isn’t going to happen. So back I went to the paediatrician to explain what the GP had said. Paediatrician wrote a prescription, and re-sent the treatment plan. (These events may all sound like they happened in rapid succession, but several months had gone by by this point.)
The conversation with the GP had raised my antennae that our community pharmacist might also have concerns about giving Amy this medicine. So I went prepared – I thought – when I took the prescription form to him. I also took along a copy of the paediatrician’s letter and treatment plan, explaining what and why and how.
He said no. He couldn’t/wouldn’t. The paediatrician’s letter didn’t contain enough information. And he handed both letter and prescription form back to me, in a ‘that’s that’ sort of way. Can’t you call the prescriber and discuss it directly with her, I asked. (I do hate having to relay between health professionals what they have all said to me. Why can’t they just say it to each other?) No. No, he wasn’t going to do that. Goodbye.
I’m afraid I lost my rag, right there in the middle of the pharmacy. Clearly it wasn’t the pharmacist’s fault that this had been going on since March and it was now July, but it was the total lack of willingness to help us sort it out that made me see red. It was pushed back to me, with no hint that he knew or cared anything about why Amy might need the medicines that are prescribed for her, and what the symptoms might be that a bit of proactive can-do-ish-ness from him could help relieve.
Back home, I considered the situation. Somewhat sheepishly, as I had handled it badly. It’s all very well to fall out with the pharmacist – but no getting away from it, he is the current source of Amy’s medicines. And we were running out of sodium valproate (Epilim). A prescription for Epilim was at that moment on its way from the GP to the pharmacy.
So I had to go in there again yesterday. I picked up the Epilim, and tried to have a calm conversation with the pharmacist about why Amy had been prescribed trihexiphenidyl. He said he didn’t want to discuss it.
A good community pharmacist is an essential piece in the puzzle that is living with a long-term condition. We need a good relationship with a pharmacist who can get hold of the medicines Amy needs and who is willing, when necessary, to pick up the phone and speak to the doctors who prescribe them. Who shows, dammit, just a small passing interest in the person for whom the medicine is provided. (Isn’t he even curious?)
This relationship has broken down, and right now I don’t know where we will get Amy’s meds. (I called the GP practice to tell them not to send any more of her prescriptions to this pharmacy, and they were dismayed.) But London apparently contains more than 1800 pharmacies. One of them, surely, must be able to cope with complicated Amy and her exasperated mother.
* With apologies to Oscar Wilde