I'm from a small - somewhat isolated rural town in western Victoria - Australia and recently had an unsucessful chat to the CEO of our local hospital about not being able to access equal care at the emergency department due to labels like "It's anxiety" and/or.....pick any unfounded label or obviscation you like 😖😡
I told them I no longer feel confident going there and in an emergency I'd trek elsewhere - which I have - 100km away when I couldn't breathe due to severe anaemia. More recently I had chest pains - ( but was semi confident it was a pre - diagnosed autonomic symptoms ) but nonetheless I preferred to stay at home which was absolutely the wrong choice - I was just so tired of the humiliation and discrimination.
I spoke to the hospirltal patient Liason officer in more depth yesterday and while she's trying to encouage me to use the ER without hesitation - she said the responsibly for complex illness' like SLE lies with my specialist and GP. I asked what if both these areas fail me - or are too slow to diagnose - which for me has happened once too often ?
That's when the conversation became a circular wirlygig and she started to blame me for these gaps in the system, implying I need help figuring out what my symtoms are and where I need to go in these circumstances.
They just cant accept the problem isn't me.
I've lost count of how many times I've been in limbo with serious - unexplained symptoms - in the middle of the night and either just waiting for GPs and specialists to do their job - or finding out too late that they're not actually even trying - hence the desperate treks to the ER.
In the end I told her it's a structural and cultural problem and theres nothing she can do.
For chronic illness I feel there's no in - between place for us to go when this happens. At least that's how I feel right now ?
But she's ringing me again tommorow....... hence......my brain snap. 🙄🤔😖😞😣😬😡
I just don't know what else to tell her ?
Any suggestions 🤨😁🤓 ?
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Freckle1000
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Be careful with chest pains, I had chest pains for six months that got worse and worse, they kept doing silly little scans over the course of the six months then finally decided to give me a ct scan to find I had blood clots on my lungs caused by hughes syndrome (onset illness of lupus) do NOT!!! take there word for anything with sle until they've actually tested and ruled it out, I recently been diagnosed with lupus nephritis that I have been going to the hospital for 4 months with early symptoms to be dismissed saying it was indigestion and stomach bug NO!!! it was early signs of kidney damage....you know your body and know when something is wrong get them to rule it out by testing for things not just assuming, I nearly died once and could have had serious kidney problems if my husband hadn't persisted.
Wish you the best of luck keep pushing, I tend to find now doctors need pushing in the right direction with sle .......dont take their word for it they know fuck all excuse my language
I wish I was in the same time zone as you guys - gotta sleep - but my sentiments are absolutely enraged mega ditto right now. Thank you for reminding me they know f**k all, as it's probable I've let my guard down and trusted for too long - I've had dangerous levels of anamia since before November and it's taken up to now to get them to take notice of the seriousness of it ....and then look for a cause. Found out today I have a very positive Faecal Occult blood - sounds like a psychic up my bum - but it's unseen blood loss from the digestive system.
It's just another preventable - unacceptable delay.
I have a fast referral to a gastro for a look inside - but you've reminded me I need to contact my specialist. Being foggy headed from blood loss does not help with the thinking process right now. I've had an iron infusion so that's helping me think a little better.
Thankyou for reminding me of my Doctor asserting principles !!!! And reminding me I have to keep doing a lot of this stuff myself.
Hi Freckle the way I look at it is that we are our own PA! We have to document either mentally or on paper what each Cons or Dr says - then cross reference for our own peace of mind or so we can query their idea.
Complete nightmare when you are ill but have to try and stay alert enough so the b***** don’t kill you.
I’m weary with it all tbh. I need my own personal advocate who I can hand over to, trust and just spend time on me getting better. One day perhaps 🙄😢🙏🏻
You just made me laugh with the - try to stay alert so the B***** don't kill me.
Again - documenting - pro's and con's and cross referencing is brilliant advice - A very large thankyou !!! because at the moment I can barely remember the course of recent events with Doctors - and the random bits of information I have managed to maintain have been spinning around in my mind like flies in a blender. (e.g..... wether I should dump my GP) - but I can't quite assimilate all the historical facts mentally right now. This is not a great way to be sick.
Yes......I dream of a magical fairy advocate. I do have a vague recollection of my GP doing this once with a specialist when a letter wasn't forthcoming so perhaps he's a good one. He's also aware my brain isn't at full mast at the moment which is a bonus.
Wouldn't it be lovely to have a magical 🦄 Doctor who we could just hand over all responsibility, have an empathetic conversation - and just walk away and actually have a life - sound in the knowledge that were being looked after.
🌈
Again - Thank you for the very timely advice. Wot you said is a very good idea. 🙂
Hi Freckle.
There was someone on the NRAS HU from Australia who was always struggling similarly to the ways you describe. So I think we both concluded that the two systems were similarly fraught for autoimmunity unless a person had a fabulous health insurance policy and lived near one of the major centres,
I’m not suffering in same way as you but I am having similar issues with being bounced from pillar to post over episodic facial swelling and pain just now. Initially I was hospitalised for this facial stuff four years ago - they thought I had GCA vasculitis. Then they decided finally that it was some other autoimmune disease - nameless and impossible for a small remote hospital to get to the bottom of.
Then I relocated and discovered that a neurologist, in his wisdom, had diagnosed stroke like issue (due to Tramadol as it turned out!) was functional left sided facial hemiparesis. This meant all the doctors I was seen by, including my next rheumatologist, smirked when I described facial pain and burning lips and gums.
Finally, 4 years on, its emerged that I have Sjögren’s rather than RA and this year the lip pain was found to relate to a kind of potentially invasive skin cancer and the rest of the facial pain was due to long-standing simmering dental abscesses.
For me, having lived for decades on an island off Scotland and just been back up there for a week - I can honestly say that things are no better here on the Scottish mainland. If anything they are worse. At least I was given an appointment with the specialist dentist up there 2 weeks ago in the brand new community general hospital and he seemed more knowledgeable about Sjögren’s and had a good grasp of my present struggles with a squamous skin cancer on my lip and simmering dental abscesses by the time I left clutching second course of antibiotics in a month.
The thing is because it’s “just” lips and just skin it doesn’t sound like anything that comprises an emergency as it would if I described chest pain or stroke like palsy to the phone person on the NHS out of hours line. But then my lip was burning and swollen due to the chemo cream with a seeping lesion and one of the two molar teeth gave me an abscess when I was young that bored a hole into my jawbone. I mean Neolithic human remains show us that people often died of dental sepsis and it’s still as possible that this could happen now as any other sepsis from an infected wound anywhere in the body.
So I phoned out of hours on Saturday reporting ear and jaw pain and swelling and requested more antibiotics while I wait to have my appointments. I was initially sent to see an out of hours GP who couldn’t help because she decided it was dental rather than ear and lip. She asked me to phone back for the emergency dentist. I did and was told that I’d have to wait until next day and drive myself an hour each way to get seen and prescribed antibiotics?! I suggested that I just drive ten minutes over the bridge to the emergency dentist there but they said no I’d be turned away as my post code is wrong due to living on the other side of the bridge. I politely asked what happens if one of these abscesses - or perhaps new abscess turns much worse and enters my bone or blood stream then? She said she didn’t know really - perhaps this would change the protocol but meanwhile rules is rules.
So, like you, I’ve had brain snap (like brandy snaps only not as tasty) as I’m all out of fight. At least no one can tell me this time that dental abscesses or skin cancer are all of the mind ...can they?!
Personally I think it’s astonishing how much gets blamed on anxiety with autoimmunity rather than failure to deliver health services to us zebras properly as a trigger for anxiety? It’s the age old chicken and egg thing turned into a huge banana omelette! Xx
Yep. Ive followed you're struggles here and the diagnostic overshadowing issues - especially the insidious functional, it's enough to make the strongest and most sane person loose their mind.
They don't take dental emergencies in our ERs. I witnessed this myself one night.
I am just too burnt out and confused - as like you - it's been a constant fight for life for 6 years.
I think you're absolutely right about the disparity between rich and poor - and access to time and services.
On the ABC ( equivalent to the BBC ) they're doing special reports every evening on this very issue. Apparently about 46,000 people here have died over the past year - essentially from being poor and not being able to get equal access. I now see this has been a larger factor for me than I thought. - even the hospital liason officer admitted this.
When I was diagnosed with SLE at 15 I remember asking a specialist do I need private health insurance - he said "he could never foresee a time when I would have a need for this" the public system for all had been such a solid foundation for so many years - no one could imagine it.
Thankyou so much for you're support. It's really helped me to actually have a good cry over it all - ready to fight tommorow to get quick gastro care.
Also - Thankyou for recounting your move from an isolated region to somewhere larger. It's something I really have to contemplate. Unfortunately here - the smaller the town - the more judgemetal and petty the attitude. But I've copped the same behavior in Melbourne. I kind of feel like these problems will just follow me ?
I don’t regret moving because, love my old island as I still do, my 3 sons can come and visit us and we can visit them much more easily here as they all live in Scotland just for now. I also have realised, since being here, how much I love hills and trees! And there’s less relentless wind and more warmth generally here compared to up north.
But otherwise I’d say that I wouldn’t have moved here for better healthcare if I’d known what I know. And I wouldn’t minimise the sheer effort and expense involved in relocating and starting again or trying to meet people/ make new friends when energy levels and poor health have been such an issue for me.
Work-wise moving has set my husband back considerably as a healthcare support worker and he’s had to take a large drop in wage from moderately well paid public sector job to agency work on a lower scale so he’s overqualified and on a stupidly low wage for what he is expected to do. I was getting the odd commission but am not anymore. I work with my husband. All the opportunities go to young graduates - or “emerging artists” as they call them. I can emerge until the birds sing but at 56 I’m too old?! That said I am still optimistic that one day we will be discovered and there will then be no looking back!! Thankfully there is no emoji for someone with their head stuck firmly in the clouds!! 😏☁️! Xx
ps it's pretty mandatory for artists to have their heads in the clouds - how else could we function. It's not an entirely rational occupation - If you're anything like me you know you don't have any other choice.
I would so love to live in an isolated shack in a mountain range nearby and just paint. I almost chose to do it a few years ago - an old semi - house where my great aunt used to to live. But I'm pretty sure I'd be dead by now if I had, but it would have been a gorgeous place to die 🙃. I've also got family obligations closer to concrete civilization too - so not much painting going on here for the moment. Everyday - It's always in the back of my head to do it - like a terrible obssession, but life gets in the way.
Limboland is no place to be, especially when urgent treatment is needed, and after all you've been through
I guess the hospital Patient Liaison Officer is feeling powerless too, so you could try offering up some suggestions eg the UK has a rare disease implementation plan and the first commitment is 'Empowering Those Affected By Rare Diseases'
'Help patients to contribute to research and other activity related to rare disease.' etc
Wow.....That's such a wonderful implementation. I'll definately have a read. On the news here there's been suggestions for block funding parcels for non retired age people with chronic illness so GPs and multiple specialists can get the money they seem so desperately seek - so we can get better preventative care. In the cities our emergency departments are space age - but by then the damage has been done.
And the worst thing about all this is we don't have a Doctor shortage ?
At least people in power are thinking about these issues.
Thankyou for you're encouragement to keep at them. I agree that the Liason officer is feeling helpless. She asked me how I felt about my hour with the CEO and I said I felt he was trying to shift the blame on to me. She was at the meeting and quietly said - I don't blame you for feeling this way - a she's stuck in an awkward middle. and is genuinely trying to help.
In the US, it is the responsibility of the “rheumatologist” to be the “orchestra leader” of all of the other doctors that may be involved with your lupus symptoms.
If you have any problems with your lungs, they will send you to a pulmonologist. If you having problems with your heart, they will be the ones to send you to a cardiologist, if you’re having problems with your skin, they will set up an appointment with a dermatologist.
You are not the one supposed to figure out which specialist that you are supposed to see - the rheumatologist does that for you.
Your GP can help in this area, but the rheumatologist is the main one in the US, it is the responsibility of the rheumatologist to be the orchestra leader of all of the other doctors that may be involved with your lupus symptoms.
If you have problems with your lungs, the rheumatologist will send you to a pulmonologist; if you have problems with your heart, they will send you to a cardiologist; if you’re having problems with your skin, they will send you to a dermatologist, etc.
This should not be on your shoulders. ER of course will be no help to you, they want to fix you and send you out - they are great when we are having emergencies and they can give us the quick fixes we need for hospitalization if needed.
But go to the rheumatologist or call them to make them aware of “any problems” you are having; and maybe even over the phone, they may be able to send you to the correct doctor.
You have not lost your brain, but we do feel like we’re beating our heads up against the wall a lot 😳🤔
Good luck to you and hoping you’ll find better care in the future. 💜
That is a much better system than we have here. It's my GP that's in charge of my care - and I've been doing a hell of a lot of my own self referring. It's absolutely not right - but if I'd hadn't googled specialists and self referred at one stage - I would have lost my Kidneys. The flare was diagnosed - but I was being woefully under treated by another specialist.
I was astounded when I asked this new specialist who was in charge - thinking it would be her. Nup. It's the GPs who generally know very little about Lupus. And here they can double their money with a private patient. The difference in bedside manner is amazing between the two groups too.
You are so smart and so proactive – you keep doing the great job you’re doing to take care of your health.💜👏👍
Just for reference in the United States, we’ve been told they only get “one hour” of training in medical school about “Lupus”.
For instance, when I saw my general practitioner a few years back and her “new nurse” came in for the pre-review of my situation and I told her I had SLE - she asked me what is that?😳😓🧐 I told her – systemic lupus erythematosus. I was educating her - sad.
“Only the rheumatologist is educated in the extreme details of the different autoimmune diseases and how they can affect the whole body, ie like lupus” - at least that’s how it is here. So that’s why they know all the organs, but they’re smart enough to “then send us to the specialist” for those particular organs.
I have the same problem with my local hospital. Have been twice,they infer that I should contact my GP. GP is really good,but has no experience of lupus. Also appointments are available at 8 am,if you miss this,that’s it For the day, unless they will fit you in as an emergency. So out of hours, effectively I feel that I am on my own.
I’m newly diagnosed with SLE, struggling to cope with the disease and the effects of the Azatropine.
Don’t know how to differentiate between the 2.
Feel tired ,my concentration is poor,which frustrates me.
Read somewhere that I should treat lupus proactively.
I don’t know how.!
All I really know is that if I get severe pain or my urine goes very dark,or no urine,should go to Drs..I wonder if I would be better ringing the rheumatology helpline at the hospital where my lupus is being treated. I have an appointment next week with the rheumatologist and the ILD consultant. I’m hoping to get more information, but don’t know how much I will actually get. I have scarred lungs The result of the lupus. Need to know the future implications of this.
Yep. It's such a varied and unpredictable illness and the system just can't quite cater for it just when we need it. Ringing that Rheumy hotline sounds like a good idea to me. Dont hold back on telling them those all those symptoms !
I think a large part of our problems is we can get to a point where we are so run down and confused - that trying to figure out the best place to seek help in this state can sometimes really too much of a challenge.
I've had to be pro - active in my own care. I don't mess with my meds unless a specialist advises it - when there's a non reaction from Doctors ( and it takes too much time to recognise this in itself ) I've mostly only ever gotten anywhere by self referring. Finding the prognosis on you're lungs sounds like a classic - self referral job. You might have to pay to see a private specialist for it but it would be worth it for peace of mind.
Oh Freckle, so hard when trust is lost - and for very good reason in your case
There are a couple of solutions that have really helped me. Unfortunately we can't improve Drs knowledge of lupus quickly or remove the damaging tendency of some to decide it's anxiety etc when they do not have the knowledge to make a diagnosis, but we can have in writing what we need them to do.
Ask the patient liaison lady to put an alert on your medical records that is the first thing the A&E Drs will see, mine is 5 bullet points,- has SLE, contact Dr ***** if presents to A&E, test for the following, immunocompromised, do not withhold or deny treatment due to negative inflammatory markers as patient's severe immune dysfunction presents with no acute phase response even in the presence of severe infection and SLE flares. If you can think of the 5 key things that will help them to help you this could go on your alert?
I also have a file with clinic letters from rheumy, neuro, immunologist and nephrologist and a letter from me saying 'how to help me if I present to A&E' (that was mainly because I can lose cognitive function so can't explain myself - and previously got lost etc!) that we hand straight into A&E.
Both of these have made a massive difference, last A&E visit they whisked me straight into a private room, IV steroids straight away etc but most importantly I feel much less fear that I will be misunderstood. Drs will still get things wrong with us, even with guidance as we're so unusual (I narrowly avoided a lumbar puncture because one A&E Dr was convinced my lupus vasculitic rash was meningitis).
Hope they can help in some way, it's not fair to be left to you to find a solution but I think everyone is quite powerless in these situations and the patient liaison lady will hopefully want to help.
Hope you get a solution to the bleeding - your description of a psychic up your bum did make me laugh though!!
Good luck tomorrow and remember whatever you manage to do, you're educating 'the system' to make improvements for lupus patients everywhere (and well done for getting the CEOs ear) and you're not on your own, we're all with you
Thankyou so much for all that advice Melba. I think it's time for me to stop staring at a wall with what really is good old fashioned medical PTSD - ( and months of slow blood loss ) and slowly exactly just what you suggested. Its great that you're sytem has worked for you - apart from narowly avoiding a luber puncture 😳. The Liason officer hasn't rung back today - so a shift of focus & getting back into organising myself propperly for current and future 'situations' is a priority right now..
My GP sent his referral to a gastro who has just retired ?/ unavailable (or will only do the procedure for $ ( hard to determine after the coversation I had there ) - so I've spent the day on the phone - trying to fix the situation quickly. It's such an alienating experience . I'd been trying to contain my emotions all day but now I'm crying in relief at having mostly resolved the situation via the public system and reading that you're all there for me.
Its a good indicater at how bad things are that I absolutely knew - to ring the Gastro's office to see wether there was a problem - and there was.
Oh. ps. I did ask the Liason officer to put an alert on my records. She said all she could do was - put ' I have a chronic illness ' on there. Any suggestions from me........nothing ?
However she was good enough to tell me that on my last ER visit my bloods did show dangerouly low levels of iron - hence not able to breathe properly. Shrinks the blood cells etc. Doctors didn't tell me or follow up. She gave me the precise patholgy number which I studied closer today. Perhaps that was her ' follow up ' 😶😯
I wish the world was more strait forward.
x
Hi Freckle1000 I'm in a phase at the moment where I'm pondering what's happened so far in my journey of healthcare and how to proceed. I have had good and bad experiences and have used emergency care several times over the past 12 months. The Accident and Emergency department at my local hospital have been excellent, they have taken into account that I have UCTD and been mindful of that when testing. I have always been treated respectfully and although they might think it's anxiety fuelled, they have never suggested it. Other services have not been so respectful, GP (see my first post) and local Rheumatologist have both commented on anxiety and this has now left me wondering how to move forward with treatment etc. The ironic thing is the anxiety was caused by the symptoms in the first place but made them ten times worse. Now it is more controlled thanks to CBT counselling, the pain has subsided and along with lifestyle changes I feel much better for now. I hope it continues but would obviously consider other options if things deteriorated. I feel like sticking two fingers up at the GP who told me to either live with it or take the medication 😂. I have a Rheumatology helpline number to ring inbetween appointments if anything changes or a bad flare so that's reassuring but I am still hesitant about symptoms being interpreted as anxiety so I do worry that I prefer not to say anything now and that might make things worse if it's left? It's a difficult situation 🤔
😁 Yes......sticking various nasty objects up the wotsit's of Doctors has been a long term dream for me, let alone two fingers.
I'm glad that you at least get treated with dignity when you go to an ER. It might be worth having a look at you're medical records just to see wether you might be suffering from Doctor bullying. It's happened to me. They form a letter club of idiocy. I gut my medical records on a regular basis - just to see how much psychiatric discrimination is actually going on and wether its out if control. Its been a chronic problem for me all the way through. I believe most people are quite shocked - even run of the mill people without trauma and chronic illness - when they see the unqualified assumptions being made about them by Doctors on their records......It's not for the light hearted.
Because I'm feeling a tad fragile right now - I haven't done it in a while.
I totally and utterly agree with you - that bad experiences beget further bad experiences causing a kind of spiral of Doctors becoming trauma triggers themselves - and them picking up on it - then a breakdown of what could be a potential friendly relationship because of being brushed of with the " its only anxiety label" - delays in treatment because of it- leading to more anxiety.....and then the labels sometimes accumulating to more complicated labels & even bullying.
I can also totally relate to not feeling able to express myself fully to them when I should. I do exactly the same thing. Apart from suppressing a lifetime of rage every time I lay eyes on them - my life depends on them and I don't want to push them too far. I also don't want to appear 'hysterical' which is how they already see me anyway. I've even keep back vital information if the Doctors impatient or in a foul mood. Not sharing everything is an instinctive trauma reaction for me that comes from the base of my mushy brain - the thinking part has no part to play with this at all and I'm always angry with myself afterwards.
Pretty much everybody says being assertive is the key - no matter how rude or obnoxious I have to get.....? easier said than done.....it is a tricky one. If I actually behaved genuinely aound Doctors - it would be just one long primal scream. I am however not caring as much about apearing mentally off kilter or anxious. Trying not to appear anxious - makes you anxious......🙃🤐 But I have less shame about my psychological scars now - getting myself into trauma councelling right now. I've seen my potential psychologist twice and she seems genuinely wise.
It's great that CBT has helped you.
Invalidation seems to lead to more invalidation - I can see this in myself and know I have to stop the rot. Ive actually tried being polite my entire life and it hasn't worked.
I think being a little bit more 😁obnoxious 😁 is my next step given the medical culture here. I think part of my jitteryness now is that I'm starting to cop flack from being assertive with them for the first time - but I think its nessesary for me to learn to take this - to move forward.
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Starting methotrexate
My funniest brain fog moment!
I have SLE and a lupus like condition , plus Raynauds, arthuritus, fibromialgia, chronic fatigue how much more can i be diagnoised with?
Horrible virus, now I think it's going into a flare!!!
