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A couple of afternoons ago, before I was due to start my 1st chemo cycle (at 10am the following morning), I developed symptoms suggestive of a UTI. Chemo had already been postponed twice & I was desperate to start, as my cancer has shown signs of active spread in the 4 months since I first found a lump. Recent negative experiences (x2 in the previous week when trying to seek pre-chemo immunisations) of not being able to get past my GP Practices’s “gate-keeping” RECEPTIONISTS had me phoning my local Boots Pharmacy Prescriber as a first port of call instead.
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Pharmacist went through their protocol, asking a series of Q’s before telling me “I’m sooo sorry I’m gonna have to refer u back to ur GP regardless, because this one’s outwith my (?)competence … (?) prescribing remit…”
I can’t remember the exact word now. -
Mindful of the difficulties I was having with gatekeeping & the urgency due to impending chemo she said she’d send an email through to the GP Practice in hopes of easing my access to clinicians. Advised I give it 5 mins for it to get through, before phoning them myself.
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I waited the 5mins and called my GP Practice at 4.44pm (it was due to close at 5pm). Same Receptionist as before responded with “there’s no urgent slots left for the day, and I can’t see an email from Boots in any case”. For some reason she said “I’m going to hand you over to the Practice Manager” (had I been flagged up as a difficult patient, since failing to secure pre-chemo immunisations with a clinician the previous week? The only date they were offering was for AFTER my chemo was due to start … really just not grasping the limited time left to build up that immune response in the remaining days before chemo could impact it). The benevolent side of me also held space for the fact that she could be a new-ish Receptionist, and still being supervised (hence the handover to a more senior member of staff)?
(Anyway, that’s the background story to me resorting to other sources of help where possible now, like the Boots Pharmacy Prescribers as a first port of call).
- The Practice Manager wasn’t budging either; saying, “I can’t see any email from a Boots pharmacist in any of our systems; and so we have no urgent slots to offer you. If she wants to CALL instead, she’ll have the number, and can she can TELL me what was going to be in her email instead” (or something to that effect) basically making me believe that I could still potentially be given a chance to be put through to a GP, before closing time). However looking at my watch, 4.50pm, I knew in my heart it was probably a well-rehearsed delaying tactic to her/them off the hook, as at 5pm their phones would be switched off and an automated message would direct callers to the 111 helpline.
Still, I played ball and tried to get through to Boots again; the minutes were passing without being answered, and with rising panic I re-dialled the GP Practice in hopes of pleading & re-explaining things again…in a different way that may help them grasp the gravity of me potentially missing yet another deadline for starting chemotherapy for my highly proliferative tumour that has remained untreated for 4 months.
No such luck.
Phone now switched off. They’d won…finished their job on time, able to go home and switch off whilst leaving me with the weight of the world on my shoulders.
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Through sobs at their heartless behaviour, I was still managed to phone 111; waiting 1/2 hour to be answered; spending a further 1/2 hr answering their questions (waaaay longer than the Boots protocol)….only to be told “as long as you see someone in the next 24 hours it should ok”.
Like the GP Receptionist & Practice Manager, the call handler either couldn’t grasp the gravity of the bigger picture or didn’t care enough about the potential for another delay to chemotherapy starting. What’s the point of a healthcare system that doesn’t work at the most vulnerable time in your remaining life? -
Now panicking, I put the phone down rather than waste precious time trying to convince her I needed a more urgent attention. I spent the remainder of the night traipsing through my city to find a Prescribing Pharmacist at ANY chemist that could still possibly help me before everything closed down (either in issuing medication, or in helping me to understand why it might not be suitable, or in offering alternative recommendations for easing symptoms). I walked-in to a Boots chemist a couple of miles away; explained the same story and this time was issued with antibiotics. Had it made a difference going in, in-person; whereas hours earlier my contact with my more local Boots pharmacist had been by PHONE? Initial relief, was soon followed by wariness.
I sat on a bench and started googling (something I’ve been trying to avoid in this journey, for fear of stumbling across Prognosis statistics about my rapidly spreading cancer). I found some vague blurb about avoiding Nitrofurantoin in certain cancer treatments - sarcomas were mentioned, but couldn’t see references about breast cancers. -
I saw a there was an Asda pharmacy still open, til 11pm, so went there in a last bid to be able to discuss my concerns. Landed on a really understanding pharmacist, who showed me his printed crib sheet of the protocol their chain uses, and explained that (? ALL) Pharmacy Prescribers are limited to dispensing only Nitrofurantoin for UTIs (not trimethoprim, which is an antibiotic I’d successfully used for a past UTI; pre-cancer diagnosis). He pointed to a sentence on the sheet that indicated that he wouldn’t have been allowed to prescribe the same drug for me in the context of my impending cancer treatment (I specifically saw the word “breast” amongst a list of other cancer treatments). I thanked him for sharing, whilst I hastily purchased back-up supplies of ‘cystitis relief’ sachets I saw on the counter - keeping my options open whilst I took the time to mull over what to do on the train back home.
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Decided to go with the sachets of ‘cystitis relief’ - I had time to squeeze in 3 doses before leaving for the hospital at 9am (it was now approaching midnight). I stayed up all night, and managed to drink 3L of water too. The pain on peeing disappeared, but I still collected a urine sample to hand in on arrival at the hospital. Dipstick showed it was ‘clear’ & I was able to start chemo, with the caveat should symptoms return, especially in the coming days where nausea & vomiting could leave me more dehydrated, I’d have to seek urgent medical care again. They cautioned that I may have only temporarily diluted/ washed out the offending bugs and that they may return.
I’m dreading having to contact my GP Practice again, if this returns (I did have minor pain on peeing an hour ago; but took another ‘cystitis relief’ sachet and my last pee was completely painless).
As soon as I’m recovered from the exhaustion of an all-nighter followed by chemo, I’ll start the process of switching GP Practice. The Drs & nurses themselves are all LOVELY, but non-clinical staff are taking it upon themselves to decide who deserves access to them. It’s not safe. It’s not caring. It’s been an obstacle to getting the urgent help I’ve needed to get my ducks lined up to prepare for chemo starting (I‘ve had very unexpected findings during my cancer investigations which has seen my planned treatment change 4 times. I’ve acted as swiftly as possible whenever Oncologists have made/ changed recommendations - they play their part under their remit in the hospital setting; and there was a list of things to be addressed in Primary Care (up to date smear & immunisations, dental check, eye check etc etc). Cancer really is a ‘shared care’ opportunity, and everyone stepped up to help in a timely manner except for my GP Practice. I understand the pressures, I really do. But I struggle to think of a more pressing scenario that was going to be let over the line to have access to an actual GP (a sick baby, maybe?). I can recover from the exhaustion, but not the fear of feeling unsafe in their hands. So I’m minded to still change Practices, even though I’ve been with them 15 years. I can’t even get through to raise concerns directly with a Dr about what their front of House staff are doing.
Any suggestions, any magic words you think I should’ve said to get a better outcome for me when phoning my Practice? Any point in giving them another chance before I leave (it’s the most conveniently located for me, as a non-car owner suffering with fatigue as well) but there are other Practices in the vicinity (will I face the same level of front desk gate-keeping? Does mine sound particularly bad, or is this par for the course nowadays at most GP Practices?
Sorry for the essay; chemo-steroids have kicked in and I can tell they’re affecting me now. Thanks!
