“I will not be beaten by the system. I repeat, I will not be beaten by the system.”
Three weeks ago, I tweeted my vow in a right pique. I was fed up. Despite Isobel’s complex needs, the local pharmacy still hadn’t stepped up to the challenge of supplying one of her medicines on time.
Clobazam, which Isobel has twice a day, is not readily available in liquid form, as it is rarely prescribed, if ever, to children under the age of three years old. The local pharmacy – there’s only one in the village - will make just one 100ml bottle specially at a time, and in no less than five working days.
Given that one bottle lasts us ten days - and a doctor’s prescription takes two working days - that gives us just three days’ buffer before we are forced to ask for a repeat prescription. Less, if it's a Thursday preceding a bank holiday.
The standard nine-to-five office timescale doesn’t give us enough breathing space to keep chasing the doctor twice a week. Unfortunately the small-town surgery thinks in very tight boxes; so although there is room for pleasantries - unlike London’s medical clinics, so often characterised by a surly and overcrowded ambience - their concept of disability is not so generous, or broad.
They have a close relationship with the pharmacy, and won’t deliver prescriptions to any others, not even those with a faster turnaround.
And never mind that there is a very real threat of Isobel’s seizures - once so tough to control – returning, should she miss just one dose. Certainly her developing cognition, already severely impaired by past seizures, doesn’t need any more damage.
Three weeks ago, I'd had enough. I was sick of yelling my mouth dry at a resolute pharmacy assistant on a Friday afternoon. Especially, as once happened, if they made a mistake with the order, but did nothing to alleviate the delay it caused. It didn't even occur to them that it was potentially a life-or-death situation.
There had to be a quicker way.
I remembered chancing upon something in a local carers’ newsletter about a doorstep prescription delivery service. So I went on the web.
Pharmacyspace is located in Aylesbury and delivers prescriptions to your door for free. The only fees you pay are in relation to your NHS exemption status. To register you have to complete a one-page A5 form, and as soon as posted - hey presto! - you're done.
More miraculously, Pharmacyspace make liquid clobazam on their NHS-endorsed premises in one working day and have even persuaded the surgery to fax Isobel's prescriptions to them once ready. Knowing the surgery's steadfast refusal to co-operate with other pharmacies before, I wonder how they managed that. Is it me, needing to work more on my negotiation skills, or does the surgery just not believe that a deaf person's word is authority?
I don't mean for this to be a plug for Pharmacyspace - I don't even know if they deliver to areas beyond the Aylesbury district - but I do want to illustrate how resourcefulness can take you places. No-one should have to take the system - ie. establishment attitudes like this - as gospel, particularly when you have more pressing needs than your pharmacy's schedule to attend to. You might as well be a faceless statistic if you do.
Certainly, I'm not prepared to let my little girl's wellbeing slip just because of "the system." The state of being a system doesn't make it right. In many cases, it exists only to serve its own bureaucracy, not the people. But that doesn't detract from my own right, as a human being, to be a responsible parent - and I'll make sure the the system knows it.
