Thanks for replying, Carole.
They’ve not even gone yet, and already the first glitches are starting to happen.
What is - or should be - a routine part of my life now (ordering repeat prescriptions) has become something of a dreaded ordeal.
To be fair, this is the first time I know without doubt the GPs have slipped up. Usually, it’s the pharmacy that gives me the total runaround. However early I order, even allowing, from experience, for “a bit of bother”, they still seem to manage to hold things up until I’m absolutely on the brink of running out of something!
It’s so stressful - the thought of being without any of my meds - but especially the Baclofen, which may cause hallucinations or convulsions if stoped “cold turkey” - fills me with dread. Almost as soon as I’ve filed the request, I start to feel the now familiar anxiety of: “What will go wrong this time? Will it turn up in time? Will it be correct?” It shouldn’t be like this.
I really worry about what will happen if my condition deteriorates to the point I don’t have the mental or psychological faculties to keep to keep chasing stuff like this. I have no relative or carer to look out for me, and honestly don’t trust “the system” (pharmacy or surgery) to notice or care if I’ve been left without meds, and lack the stamina or organisational skills to sort it out myself!
Nearly every month, I’m on the phone asking: “Are they coming soon? It’s been ten days!”, or: “Thank you for your delivery, but what happened to the rest?”
Most of this has had nothing at all to do with the doctors, except this latest time.
But I am very worried about continuity of treatment - whether I opt to change surgeries, or stick with this one, and hope the new consortium are alright.
I always had my GP on my side - sometimes overriding what the neuro (who doesn’t really know me) had to say. I’m worried that a stranger will start trying to force me to reduce or come off things that could be regarded as controversial: comparatively high dose of baclofen, routine diazepam, and contraceptive pill, for example. The latter is only controversial because of my age. They don’t really like to prescribe it at my age (peri-menopausal), but it has made a big difference to quality of life, because I’m actually using it to reduce MS symptoms - not for contraceptive purposes. I used to be in a right state once a month - or once every three weeks, as my natural cycle had reduced to - because all my MS symptoms flared up. Now, I not only have shorter and lighter periods, but can go up to eight weeks without having one at all, because I’m allowed to run two cycles back-to back without a break. So although it’s not a recognised MS treatment, it’s massively helped in practical terms.
I’m concerned that whoever I end up with next will believe the Baclofen should come down, and the diazepam and the pill should go altogether!
If that should happen, my only appeal will be to my neuro, to say: “Look, these really help - can you write and tell them I need them?”
I considered myself very fortunate to have landed a GP who trusted me as a responsible patient who won’t take drugs willy-nilly, but, only if there’s a tangible benefit. But that trust took years to earn - and only really came once she realised I was seriously ill, and far from moaning, had barely complained.
I don’t know if I shall be so lucky with a newcomer who may be very “by the book”.