Wow thanks for your response on my last blog! Great to know so many care about our NHS! Well, today was *that* hospital appointment. Despite a month of messages, I still didn’t hear back from my hospital to tell me if my chemo was ready aka ‘would driving in today be a wasted journey making me more ill?’ So I did my best ‘dragging a dead body around’ impression this morning, driving an hour in crazy traffic to get to hospital. These two dialogues happened…
Firstly I was ‘greeted’ by the rheumatology receptionist and gave her my name. Our encounter went like this:
You can check in on the screen
It’s ok I’ll just check in with you as I’m here.
No you have to do it on the screen.
(Receptionist goes back to doing nothing)
Now I know this is just new procedure and I passionately believe the vast majority of NHS staff are awesome but the receptionists in this dept are known for being nonchalant and rude. She literally sat there twiddling her thumbs! Ok that’s not true she also gossiped with a colleague for a bit.
After waiting for an hour and a half I eventually got seen. I had not encountered this particular nurse before;
You should have been here yesterday.
No my appointment is today.
(He then started to calculate my DAS28 score which I hate for its primitive evaluation of disease activity, negating factors such as other conditions)
How long are you stiff for during the day?
Most of the day sometimes all of it.
(He doesn’t seem happy with this answer and changes the question)
Ok how long does it take you to physically get out of bed in the morning?
About an hour or so
(Yep you just f*cked up my DAS score)
Which joints hurt?
Neck, shoulders, hands, knees, feet and I’m very exhausted all of the time
On a scale of 1-10 where would you put your pain today? (10 being the worst)
8? 10 is the highest you know
(No shit Sherlock. I can count, just like I’ve counted the number of times I’ve rung your helpline over the past month with no reply) aka:
(At least he didn’t make me point to the smiley faces chart. Yes sometimes they actually give us this…)
Have you also started the ball rolling with my biologic drug Humira?
Humira? You only left messages about Methotrexate
So my messages have been received? And no, I’ve left five messages over the past month about my Methotrexate and Humira renewal.
(He looks perplexed)
I will have to look into that but I have your Methotrexate
Ok great, I have also stopped my steroids now.
Oh right. (his face tells me he didn’t know I was on steroids, he turns to the computer screen)
I was almost off them, then the doctor put me back on a high dose which I have been reducing over the past month before I stopped.
You know with steroids you have to reduce them, you can’t just stop them
(Not listening to a word I’m saying then?)
We will book you in for your next Methotrexate collection
What about Humira?
The biologic company will contact you when the prescription has been processed
But has that prescription has been ordered by this hospital?
Hmm if it’s been over 6 months the biologic company may have cancelled your prescription and we will have to start the application process from scratch.
(???Holy crap! This means applying to NICE for funding all over again!!!)
I have already injected the few I had in the fridge left from last year so I am mid-treatment. I have none left now, I cannot just stop. The doctor reinstated Humira over a month ago – has this been instigated?
I don’t know I will have to look into it (a minute ago the biologic company were on it, now you don’t know)
I’ve left five messages over the past month about this and the Methotrexate, now I have completely run out of both – why haven’t I had a response?
We got your messages and your Methotrexate is ready to collect
But I didn’t know that because I didn’t get a reply, I didn’t even know whether to come today. I have been anxious for a month not knowing if I’m going to get my medication, the least I could have is a response.
We are busy with other things, we don’t have time to reply to every message
I’ve left five and we used to get a reply within a day on the helpline
It’s better we are sorting out medications rather than making phonecalls
It’s…a…helpline? (and you still haven’t sorted out my medications!)
I left the room. ‘Eau de Nonchalant’ was clearly the air freshener of choice in the rheumatology department today. The rheumatology nurses are usually fantastic but it was Sod’s law I got this one today. I’m glad I got the Methotrexate of course but that doesn’t negate the month of anxiety, stress, worry and time wasted in chasing it up and it looks like I will continue to have to for Humira. A simple ‘sorry for not getting back to you’ wouldn’t have gone amiss. The point is I shouldn’t even be chasing this stuff up. I should simply be able to trust in my NHS service. I know staff are like headless chickens right now with NHS cuts and closures. And – that’s all this nurse needed to say, instead of trying to make excuses to a person with a long term chronic illness. Rule number one of being a healthcare professional ‘do not attempt to bullshit a chronically ill person’ we have been in the NHS system our entire lives and know b.s when we smell it. And most importantly we are on your side! Patients across the U.K. really are bearing the brunt of the NHS cuts which are literally systemic to our lives.
It is sad that this used to be an award winning rheumatology department. And it is scandalous that a NHS helpline designed to put chronically ill patients in touch with specialist nurses is now only running three days a week. In my previous blog I wrote ‘manned’ three days a week but it seems obvious now that the messages are listened to a lot less than that – if at all.
Bear in mind this helpline also covers patients encountering health complications. Without a reply we are going to end up in, you guessed it, A&E. And we all know the pressures there. That’s the way the NHS cookie crumbles.
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Isn’t it just? And it’s exhausting being on the receiving end
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