ALERT on medical records so we get the correct care if admitted via A&E - please ask for this!

[Melba1]

Hello, I don't know how many people have this already or if it's available at all hospitals. I had a meeting recently with my local hospital where we discussed the fact many of us with lupus often do not receive the appropriate care and treatment in an emergency.

The Medical Director said they can put an alert on medical records that is the first thing that comes up when any doctor sees us with our diagnoses, instructions, which Dr to contact, if we have any unusual tests required to detect our version of a flare etc. This saves them having to trawl back through our (often multiple!) clinic letters which many don't have the time to do and may receive conflicting, lengthy, difficult to understand information so a short example:

Severe SLE. Immunocompromised. Contact Dr X/ Dept Y, Photosensitive - avoid strong lighting. Consider immediate IV steroids. Test for C3, C4 as these have been markers in previous flares.

I'd be interested to know how many people have this already? It seems a very sensible option for us all but we probably have to ask directly for it? I also found out we can go on a 'special medical needs' list at some GPs, ensuring we are flagged up to receptionists as potentially needing urgent appointments. Although I have supposedly been on this for 6 months and still had a receptionist tell me when I was half collapsed on the floor, bleeding from bladder/ kidneys that the next appointment was in a month...

x

[eekt]

No experience of this but did naively expect there would be a flag on my GP record...had labyrinthitis shortly after SLE diagnosis - not knowing what was going on - just that I was seasick, staggering and unable to focus, in my home 🤪...called surgery and receptionist asked if it was an emergency, I said I dunno, that's why I wanted to see a doctor....💃

An alert sounds ideal 🤩🎃😻 xxx

[Melba1 in reply to eekt]

labyrinthitis is horrible! I wonder if we are more prone to it as I got it around diagnosis too?

I am looking forward to seeing what the medical director writes on my alert to A&E Drs, probably 'highly irritating patient who will think she knows more about lupus than you so give her lots of nasty tests'!? I must remember to ask to check what is written...

[eekt in reply to Melba1]

Labyrinthitis is really alarming when you don't know what it is, because it affects your balance and sight....shiver me timbers, I felt like Captain Jack Sparrow (at 8am) 🏴‍☠️

My GP has an alert along the lines of ⚠️ 'Beware! Patient made extensive complaint against me. Obviously deranged as she presented with hair loss, dry eyes, labyrinthitis and asking for sunblock. Acute depressive episode 35 years ago means PMH. COMPLEX PROBLEMS'...☢️ 😂 xxx

[AgedCrone in reply to eekt]

I really agree about Labrynthitis....first time I had it about 15 years ago I thought I was having a stroke, as everything I reached for was about a foot in the opposite direction......on calling my GP he diagnosed it as Menières disease over the phone!

I have had it about three times now & thank goodness it does seem to get less severe each time.

Just to lighten the tone about flagging up medical info in A&E etc.

I have just renewed my gas/electricity contract, & at the end the procedure the agent asked if I had any special needs "like an auto immune disease that would mean you would need extra help to keep warm".

I asked what that meant & utility companies apparently have lists to prioritise people at risk of hypothermia!

So even if the health service can't flag us up...the gas man can! It made me smile

[DJK99 in reply to AgedCrone]

Hi there - yes when with BG they had me down as having severe Raynauds and heart condition etc - must remember to call my new supplier and tell them the same. Thanks for reminding me!

And re the labrynthitis I remember the first time I had it about 20yrs ago I woke up in the morning and screamed as the room was literally spinning - I didnt know which way was up.Scariest thing ever... Had it many times since but always follow the instructions was given at ENT after that - called the Epley maneuver. ie in a safe place like lying in bed gently turn your head to one side and then the other, and as the spinning gets easier to handle make the movements more extreme - and then sit up and try it with more of your body involved etc - all this helps get the crystals(?) formed in your inner ears to liquidate and er, just get better.. something like that anyway! Also, if youre able, doing yoga or movements that get your head down or to the side etc on a regular basis will help lessen the attacks. Seems to help! D

[AgedCrone in reply to DJK99]

I had never seriously considered how cold a house could get without c/htg for a day or two....but in February this year I had a flood in my house & within 24 hrs I had to move to an hotel as even with a fan heater,electric blanket & thermals it was impossible to keep warm.

Thank goodness my house Bldgs/contents insurance covered that eventuality ....so that is something worth checking.

A word of warning about the Epley Manouevre...you should only ever attempt it yourself when you have been assessed by a qualified person who will diagnose on which side you need to concentrate........if you turn your head to the wrong side & then sit up......it makes things ten times worse.

But I do agree once you know how to do the Manouevre it really does help.....however to this day if I turn over quickly when lying down the room spins.

[Horsewhisper in reply to AgedCrone]

Eeeeuurrgghh! Labrynthitis - horrific - i kept holding onto the bed as I felt I was sliding down the back of it backwards and had to move around on all fours as couldn’t stand up, most disturbing. I regularly take travel sick pills when out and about as I am still left with a permanent slight dizziness/unbalanced/nauseous feeling since my last bout 18 months ago. I often wonder if there is a connection with this and CTD’s? Anyone think similar? X

[AgedCrone in reply to Horsewhisper]

If you still have those feelings you should try to see physiotherapist

who Specialises in vestibular disturbance..

He/she will teach you the Epley manoeuvre with which you can very simply calm the symptoms down. But don't try to do it reading about it on your own ....you need a professional to show you how to do it...if you get it wrong you will make the dizziness& nausea ten times worse.

It's not very pleasant for a few hours after the treatment as you feel very nauseous - but that wears off and as time goes on I find it very successful.

I don't think the slightly unbalanced feeling you have with Labrynthitis ever really leaves you, but this treatment does make it more bearable.

[Horsewhisper in reply to AgedCrone]

Thanks AC - I will investigate this physio as I would like to get back to “normal” whatever normal is on this autoimmune journey!

[DJK99 in reply to Horsewhisper]

Hey there - yes, def a link to autoimmune - medicalnewstoday.com/articl...

vestibular.org/autoimmune-i...

Oh yes - definitely get professional help/advice if its very bad. I am just lucky to have had the session with ENT (dont remember Physio being involved) who showed me how to do it and Ive only had it er moderately since the first time. Or maybe we get used to it - I guess its a bit of both. Understanding a thing generally helps me anyway. If I feel an attack coming on ie it usually starts in bed when turning head, Im right on it - Ill start doing the exercises whilst lying down only and hang onto the mattress with hands either side to try and ground me, lessen the vileness of it. I dont usually do the sitting up version if it deteriorates.. luckily it usually gets rid of it in couple of days of mega rest and regular head turning.. and lots and lots of water throughout the day, as ever.

Hope you getting this looked at if it carries on. My friend has Menieres - ad is prone to crashing into things from time to time whilst out and about. She on meds for this specifically. I have very bad tinnitus for years which is much worse this year I noticed.. thought it was just years of gigs in my youth.. and wearing headphones whilst walking outside. Ive always thought this was due to that and that was due to this etc... hah! Head in sand. Hmm.. been meaning to have that looked at. Hey ho.. the list goes on for us peeps eh! xx

[AgedCrone]

Good for Thames Water!

I bet at your GP.....you can speak to that nice receptionist who thinks answering the phone qualifies her to diagnose & advise! I now don't bother with my GP .......I found I never saw the same person twice & Dr A advised one thing & Dr B another.....both of which were rubbish .....local pharmacist is far more useful!

[Melba1 in reply to AgedCrone]

We now have a pharmacist permanently working at my GPs who does all meds, reviews and immunosuppressant monitoring tests. He’s amazing! So thorough and knowledgeable, rings me about once a month and has a proper chat. Even interested in what the others consider the small complaints like hair loss etc. Organised, efficient, knowledgable and so kind when I’m in a flare and need quick help x

[AgedCrone in reply to Melba1]

Yes we have that too.....she did my annual prescription review,& was responsible for stopping me having the FLUAD Infuenza Vaccine which I had been put on the list to have in a few days

When she saw I was on RTX she asked if my rheumatologist had OK'd it....he hadn't & when I emailed my Rheumy nurse to ask I got no reply....this was within a week of having the jab....& 32 days before infusion.....can only have vaccines 30+'days before .

We aren't put through to GP's at my practice, so I presumed I wouldn't be put through to her if I called&'time was running out.

I asked two local pharmacists- who said the NHS had not issued any guidelines so they couldn't help me.

I emailed the manufacturer....who replied within 24 hours, but although it said there "could be" side effects....there was nothing definite.

Eventually I called the unit where I was due to have my infusion,& was told if I had the FLUAD vaccine i wouldn't be able to have my infusion.

However....when I went for my infusion last week my nurse said she didn't know if I should have had it or not.....

So no flu vaccine this year...but I had one last year & I had the Flu!

So Go Figure!