Hey! Hey!
Welcome to another toe dip into gastro (sort of) via a very reluctant A&E visit. Confused already? That’s understandable because I was too! In light of that, sit back, relax and prepare for some top tier time wasting and some gold standard gaslighting!
This whole sage began following a telephone appointment with my lovely dietician who believed my minimal intake (both fluids and solids) had gone too far and required urgent attention. Unfortunately, that urgent attention materialised in the shape of being sent to A&E.
Less than impressed, but desperate for some help, we reluctantly made our way to New Cross A&E. Somehow, New Cross was the only hospital in the West Midlands that I had managed to never attend which also meant there would be no form of records available to them. Thinking ahead of the inevitable conversations about my heart, I decided to take a paper copy of all my neuro letters (discharge summaries and consultation letters) because it was like I’d foreseen being disbelieved!
Armed with a literal ring binder of neurology notes, we arrived at A&E only to be informed that they were aware that I had been instructed to attend and the nutrition team would be down soon to see me! Fairly efficient was my initial thought! Yeah … it was luring me into a false sense of security.
A cannula was inserted and bloods were taken before I was moved to a sort of cubicle, sort of bay in another part of this seemingly huge emergency department. It was here where it all started to go downhill …
I was approach by who I assumed was a doctor. Thinking back, she never actually introduced herself to me in any capacity, but I was feeling too faint and not with it to even realise in the moment! She led with the usual script of questions which comprised of why I had come to A&E and my medical history. Then she made a list of all the anti-emetic medications I had tried, and explained that she would need to wait for my bloods to come back. In the meantime, the nutrition nurse should be down soon to chat to me.
True to her word, the nutrition nurse did in fact appear shortly after to chat to me about the difficulties I have with nutritional intake. It was at this point I whipped out the ring binder of neuro notes because the confusion on his face would have been obvious to a blind person! I kid you not when I say he stood at the nurses station for 20+ minutes just skim reading everything I had given him!
Whilst he was still consumed by neuro jargon, the other lady returned to tell me that half the bloods had come back and were so far okay so that meant there was no need to give me any anti-emetic medication. If there are any medical professionals reading this, since when did feeling nauseous show up in bloods? It was at this point I was starting to get the impression that she didn’t believe what I was telling her …
She proceeded to tell me CSF leaks don’t cause nausea and then question how I had come to the conclusion that the two were associated. I mean aside from the fact we hadn’t presented to A&E to dispute my neuro diagnosis, I couldn’t help but firmly shut down her claim by offering her links to every CSF Leak Association worldwide where it is in fact listed as a symptom on each!
Shooting my dad a quick side eye, she performed a quick abdominal examination and listened to my lungs before disappearing again. By this point, I’d lost track of how many hours we’d been here, but I was feeling pretty faint! The nutrition nurse had finally finished digesting my neuro notes and returned to explain that they absolutely would not be placing an NG tube as recommended by my dietician because they hadn’t received the key piece of information surrounding my need to lie completely flat in order to obtain some symptom relief. He continued to inform me that lying flat whilst receiving a feed runs the risk of the nutrition running back up and potentially entering my lungs which obvs is a medical emergency! Therefore, if my bloods all come back normal they would pass me back to the community team to manage my malnutrition …
Another passing of the responsibility … I couldn’t help but burst into tears at the sound of another bunch of medical professionals not wanting to take any sort of responsibility and help. As I have always said to anyone who picks up my case, I fully appreciate it is complex and rare, but that doesn’t mean I’m not entitled to the same level of care as someone who’s case is straightforward. If you don’t know what to do, that is okay, but make contact there and then with somebody who might. Don’t just bat me back into the abyss with the false promise someone else will pick up the slack! I wasn’t being managed in the community which was why I’d been sent to A&E, so passing me back to the community wasn’t going to result in “continued management” as there was no management!
Unfortunately, I knew all too well that now that they would do nothing to help, so we were basically sitting (lying) around waiting for the rest of my bloods just to then be sent on our way. This just triggered more frustration which in turn triggered more tears. In the middle of all this, a gorgeous HCA approached to see if I was genuinely okay, but I wasn’t. ECG done as well as a lying and standing blood pressure, we were left for another few hours.
Eventually, all the bloods came back and were “normal“ which meant nothing else would be done. It was now somewhere around 6pm and my irritation had overruled my suffering. In my eyes, she’d decided hours ago that I was fine and to be honest I was wishing she’d just let me go then because you can’t win with someone who had made their mind up before even receiving the facts. The breaking straw for me however was when she told me to carry on drinking because I was doing well …
- I’m not a child, don’t talk to me in a patronising tone …
- I didn’t drink anything the whole time I was in A&E. That was the literal reason I had been sent to A&E!
It’s safe to say, I will NEVER be returning to New Cross A&E department, and best believe I have submitted a complain to PALs because upon receiving a copy the discharge summary electronically there were multiple inaccuracies recorded! It was also here that I found out I wasn’t seen by a doctor like I was told I would be. She was an advanced clinical practitioner. Under normal circumstances that wouldn’t bother me in the slightest, but given the complexity of my case and the fact she didn’t know what to do, common sense would surely have suggested seeking an opinion from someone more senior? Like put the best interests of the patient above your ego? Just me?
It could only happen to me!
X O X O,
Your favourite headache!
You say, “I don’t understand, ” and I say, “I know you don’t” ~ You’re losing me, Taylor Swift, Midnights (from the vault)
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