Venting about healthcare

[Cobalt1312]

Hi good people, this post is me venting my rage and frustration with the healthcare system at large.

I was typing a question to one of my doctors through the online portal we are encouraged to use, and I discovered while about 1/3 of the way through my message when I was told I was "over the allowed number of characters" that the allowed message length has been reduced by 2/3 with no warning, explanation or apology to the patients.

The system used to allow 1.500 characters (not words, 1,500 letters, spaces and punctuation between words) and now they are forcing us to condense whatever we have to say down to 500 characters (not words, 500 letters, spaces and punctuation between words).

I have little doubt this is coming as a top down, administrative move to 'free up more time for providers to interact meaningfully with their patients on any given day' (in the 'generous' 15-20 minutes they are allowed to spend face-to-face) but honestly, it just feels like another way health care is being transformed into seeing patients as business commodities for profit and making sure doctors' time is billable.

Feeling defeated. Thanks for letting me vent.

[Miss-guineapig]

Aww Cobalt now wonder you feel defeated. It’s hard enough trying to explain in writing. My husbands GP practice has a version similar to yours but although they limit the words for your symptoms, they ‘always’ email back on the same day with a face to face appointment or time for a phone consultation, so you can explain in more detail. My GP is great but we have to just phone and wait on an appointment which is frustrating too. Sending you a big tight calm hug . I would Message back, just list symptoms, say you’re worried and unwell and need to talk with someone ….hopefully they will phone or give an appointment . Keep us posted x

[Cobalt1312 in reply to Miss-guineapig]

Thanks so much for your empathy Miss-guineapig, the big tight calm hug is so welcomed!! It's hard enough having difficult symptoms that can be scary and confusing, it's just made worse when you reach out for help and are treated like you're a cog in a machine. You get it!

That's a good idea to just list symptoms. Some of my issues seem to be really sort of subtle and creeping, so at any given time my medical team isn't very concerned. I suppose partly what's hard for me is feeling like some of the things are progressing and I can't prove what's happening. There is no 'smoking gun' so to speak. Just my intuition and symptoms that are generalized enough that no doctors seem to have helpful advice.

I was diagnosed with PA about a year and a half ago, and the experience of knowing things were wrong and getting worse for a long time before that was fairly traumatic. It was extremely validating to get the PA diagnosis, but also horrifying. It can feel really helpless knowing something is off, but not being able to prove anything. The message I sent was re-iterating concerns I may have yet another serious GI issue and asking how people with the condition fare on different medical test scores that I've had done recently. I'd much rather my concerns be unfounded but I also don't want to ignore something that's actually a warning. I'm kind of trying to find the needle in the haystack before my health explodes in my face (again). I will update!

[Wwwdot in reply to Cobalt1312]

My dear Cobalt1312

What a horrible day you’ve had. Well that day is behind you now and Miss guinea-pig has given us a brilliant idea - I will adopt it too.

Big hug, sleep well and see today as a success in the art of succinct communication! It will take less time to list symptoms Ieaving you more time to do nice things. 🤗🤗🤗

[Cobalt1312 in reply to Wwwdot]

Thank you for your kind words and the big hug Wwwdot! They are so appreciated!! Hear hear! Wishing you success with the new communication tool as well and more time spent doing things you love! 🤗🤗🤗

[wedgewood in reply to Cobalt1312]

As you have had a Pernicious Anaemia diagnosis you must have LIFE-LONG treatment with B12 injections . You need them often enough to keep your symptoms at bay . We are all different and need these injections at different intervals - not the usual “ one size fits all” .

Sending best wishes and a big hug as well . Stay strong .

[Cobalt1312 in reply to wedgewood]

Thank you wedgewood, your support and kindness are so appreciated!! Hugs back to you!

[Jillymo]

My surgery have an online service that patients can no longer activate. I tried to explain this to one of the receptionists who retorted we are not experts in I.T. I tried to email my Dr but received an automated message telling me Drs do not read emails and that I would need to make an appointment - thats fine if only the pateint could get through.

I rang the surgery dead on 8am when they open to get a recorded message telling me the que was now full and I would have to ring at another time !

I managed to get through yesterday after persistantly pressing redial for 40 minutes and requested a phone consultation. I had never even heard of this young Dr but explained I am no longer sweating from under my armpits and suspect a glandular issue (I have sjogrens) and finding it hard to cool down in this warm weather.

She offered to come out to do my blood pressure and check my heart ! I explained I have a nurse coming out today who will check my BP whilst she is here and if she were concerned about my heat to kindly get in touch with my cardiologist who is now 'two years' behind with doing my annual cardiac MRI. That was the end of the conversation and nothing done to investigate my glandular issue.

Going back to the days when Drs doctored they would have examined glands to see if they were swollen ect. It seems all that is now in the past.

Rant Over. Grrrrrrr 🤬

Cobalt1312 I know exactly how frustrated you feel..

[Cobalt1312 in reply to Jillymo]

WOW Jillymo, what a poopy time for you! Grrrrr 🤬 It does really feel like the human element is being discouraged and suppressed in 'healthcare' today, doesn't it? You poor dear!

How repeatedly infuriating for you... Shakes head in disbelief.

Sending big hugs and warm thoughts your way friend - Hang in there, you are a warrior! 💪

[Gambit62 Administrator]

Its much more likely to be poor system spec - NHS has an extremely poor rep when it comes to IT implementation. It would be good if systems that interact with patients had patient representation feeding into the design but I very much doubt it does.

[Cobalt1312 in reply to Gambit62]

Gambit62, thanks for your insight. Sometimes it's easy to feel we are intentionally being suppressed by medical authorities 😬 AMEN to your suggestion.

[Sneedle]

Hello Cobalt1312 ,That's just such a rubbish experience. I would be raving too.

These days I've resorted to old fashioned letters in the post in advance of any appointments, detailing everything - it has to go on your file and they can't limit what you say!

I'd much rather my concerns be unfounded but I also don't want to ignore something that's actually a warning.

That's a good thing to say in any letter- recently I sent a tome to our gp in advance of my daughter's appointment as there was no way she would remember everything. In it I said:

'As her parents, we may be barking up the wrong tree at times, but while she remains ill we are continuing to investigate.'

All that said, a succint symptom list as suggested byMiss-guineapig will bang it right in their face - maybe you could do BOTH!

[Cherylclaire Forum Support in reply to Sneedle]

.....word limit permitting !

[Cobalt1312 in reply to Cherylclaire]

😂👍❤️

[Cobalt1312 in reply to Sneedle]

Sneedle I really like your idea, and thank you for your empathy!

It's important to have documentation, and writing a letter is a pretty smart (using understatement here) way to accomplish that. Thank you for your encouragement. It can get really wearing to keep persisting about concerns when you feel sort of looked down on or rebuffed for attempting to communicate.

You are tenacious and creative. It lifts me up to see how you are advocating for your daughter.

I agree maybe a one-two combo of letter and symptom lists is what's called for! Wishing you success in your communications as well!!

[Wwwdot in reply to Cobalt1312]

Go Cobalt1312! Go!

I send regularly letters to my GP summarising my self help (aka lack of help from them), my progress and it’s importance as carer for my mum and being the sole breadwinner in the house, and thanking them for their continued support (ie agreeing to suggested blood tests, referrals etc). I end by appreciating how busy they are, that self injecting is my recognition of that, and that if I can participate in any B12 deficiency patient group they start in the future not to hesitate to contact me.

The letters appear to do no harm and I am noticing a lessening of resistance as my file grows!!

Keep smiling everyone it’s one of our best weapons! ✊🤗🤗🤗🤗😂

[Sneedle in reply to Wwwdot]

a lessening of resistance as my file grows!!

Made my day😃👍

Imagining a weighty tome sitting there being immovable!

[Sneedle in reply to Cobalt1312]

Aww your words made me feel all cheerful😊!Yes fighting 💪 on for my daughter who is really not well, the very good news is the long letter I wrote to gp detailing everything (supplements and dosages, private blood tests, how her daily life is, a b12 symptoms form she filled in, an active b12 assay doc someone on here gave me a link to to convince gp of private test validity) resulted in gp organising an IFAB test and wanting to trial injections!

I saw her medical notes and gp has written:

'Mum wrote a comprehensive letter' and I felt like I was 10 and got a Gold Star for an essay!

🌸😀🌸

[Wwwdot in reply to Sneedle]

⭐️⭐️⭐️⭐️⭐️

[Sneedle in reply to Wwwdot]

😄👍

[Cobalt1312 in reply to Sneedle]

Sneedle amazing, amazing advocacy work!!! I concur with Wwwdot: ⭐⭐⭐⭐⭐

[Sneedle in reply to Cobalt1312]

Oh thank you😊I guess it helps to have a Gp who is up for it, but I did try hard to leave her nowhere else to go😃

[Cobalt1312 in reply to Sneedle]

Agreed, GPs attitude makes a HUGE difference. Make sure to give credit where it's due though for being the catalyst for better treatment for your daughter. You are the X factor here! 🤗💪🎊

[jade_s in reply to Sneedle]

Wow well done!! 🥳🥳 A gold star for sure! ⭐⭐⭐🤩 Sending best wishes for your daughter! 💉

[Cobalt1312]

Wow, thank you all so much for your empathy, hugs, kind words and encouragement!! I'm in the U.S. and had to give myself an 'internet time-out' last night before bed because it was a rougher day, and when that happens I tend to struggle to fall asleep before 3am. I'm told it shouldn't affect me like this, but early Monday morning I had about 6 vials of blood taken for endocrine tests, 4 of them being the jumbo size type. So, I've struggled feeling more lethargic, spacey, slow and overwhelmed the last couple days.

Waking up to see all of your replies of support and stories of commiseration has made my day early!! Thank you all again, getting some human interaction and gentleness is EXACTLY what the 'doctor' ordered for me feeling more fearful about some of my symptoms. Too bad we have to band together like this, but SO glad I have you all!!

Short update: I saw an endocrinologist for the first time ever a couple weeks ago, he ordered a ton of tests, prelim finding is that I have raised ACTH - part of the reason he ordered a ton of tests is because about 1.5 -2 years ago my DHEA tested sky high.

No doubt something significant is going on for me in terms of metabolic dysfunction - maybe there is some connection to my GI complaints that I couldn't message about how I wanted to yesterday... I will say more when I know more. Lot's more blood results to come in.