OT love: Something really positive to report! Less... - LUPUS UK


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OT love

whisperit profile image
32 Replies

Something really positive to report! Less than a fortnight after being referred for a home Occupational Therapy assessment, I have already got a new stair rail, perching stool and bath hoist. And all for free!

It might be helpful for you to know how that happened.

First, unlike my previous OT referrals - which were requested by my rheumatologist - this one was triggered by a Care Coordinator in the local A&E Department. She visited me on the ward during the second of my two recent spells as an emergency admission. I suspect the key thing was that I said the critical incident that led to the second admission was not being able to get upstairs to bed on that particularly bad day.

Anyway, the OT arrived at my home just 3 days later. She was sympathetic and actually listened to what I said about my daily routine.

The VERY NEXT DAY, a man in a van turned up and 20 minutes later, I had a new stair rail. Today, another man arrived and installed a bath hoist and the perching stool. Some custom made walking sticks are on the way too. I haven't had to fill out a single form, nor provide a letter from the GP, or consultant, or the Queen. There is no deposit, or 'trial period', not even a receipt to sign.

This has all been done through a local Social Services multi-agency team. I love them.

32 Replies
Barnclown profile image

HURRAH!!!! Well Done!!!! ENJOY!!!!

AND thanks: Am going to remember this: it’s the “critical incident” that can trigger the care we’ve been truly madly deeply needing...we just have to recognise a CI when we hit one & be proactive about making sure the NHS knows we know the significance of a CI...eg i had a CI mo last spring during a phase of intestinal blockage...(but i didn’t know the “CI” term existed & had official significance)...even so, i reached out by email to the right NHS dept...this communication immediately triggered the tertiary care which is helping me greatly ongoing

😘🍀😘🍀 coco

Ladyuponthelake profile image
Ladyuponthelake in reply to Barnclown

So do you actually use the term Critical Incident when you call? I've never phoned when I was having a intestinal incident. In my experience with anaemia they just leave me to it. One Dr said he couldn't believe I was sitting up with levels of 7.2 or 6.8 can't remember. Ordered a blood transfusion, then a consultant came and cancelled it. So I've stopped asking for help. When I was Neutrapenic during chemo, Dr said "I doubt your Neutrapenic as you don't look or act it" I ended up in hospital with 3 infections and 2 blood transfusions. I'm just strong willed, but that doesn't make one not I'll. So rambling now, my question is... do you phone and say your having a 'critical incident'? When does this term come into play and who says it?

Thank You 🌻🤔🌻

Barnclown profile image
Barnclown in reply to Ladyuponthelake

Good question! I think it’d be better to ask Mike, rather than me, cause his post has only just introduced me to this term (Critical Incident).

I think you & i are alike, and we’re certainly not alone: many with our health issues tend to become so accustomed to “managing” while ultra ill that we sort of “adapt” to life in critical mode which then becomes our normal. As a result, we can “self-cope” rather than reach out for help...when we probably should.

Having thought a bit about mike’s post, i figure i’ve had a series of what i guess are critical incidents over the decades: i’ll try to make a list of these...just to remind myself there really are times i really must reach out, preferrably using a few cues in “dr speak”, eg when that phase of persistent volcanic diarrhea + projectile vomiting started in March etc, i guess i would’ve done well to ring the Out of Hours GP Service and say the critical incident that led to this hyperreaction was drinking iodine-based contrast during Barium Swallow...that is, i guess i would’ve had i known that drink was iodine based contrast, but back then all i’d been told was that this thin drink would be better for my slow transit dysmotility than the standard thick barium drink .😉🤗


Ladyuponthelake profile image
Ladyuponthelake in reply to Barnclown

Yes I remember when that horrible trip started for you. It seems a lot of the helpful tests they're doing for you are ummm 'killing you softly with their love'

Mike's Post yes does help.


Barnclown profile image
Barnclown in reply to Ladyuponthelake

I ❤️ your “killing you softly with their love”:

this situation is so often a gamble - we try to be alert re risk/benefit ratio while trusting whichever medics we’re seeing. But we tend to have had so many zebra crises over the years, that we know to be ultra cautious of risks relating to well-intentioned generalist medics faltering over the sort of known unknowns that more specialist medics would’ve been more prepped to figure out. And during Critical Incidents we tend to see conscientious caring (well, relatively 😉🙄) generalists first 🤷🏼‍♀️

Mike’s discussiinbis perfectly timed to help me when i most need help. Thanks vvvv much to you too 😘🍀😘🍀😘

whisperit profile image
whisperit in reply to Ladyuponthelake

From my pov, it was pure luck that I used that term. My understanding is that there was a two-part trigger at work.

First, I had been readmitted as an emergency within 48 hours of being discharged. Second, when the Care Coordinator appeared at the bedside and asked something like, "I see you've been admitted twice now in the last week. What were the circumstances that led you here?" I highlighted a simple, practical 'fix' that might prevent a further readmission. Specifically, I said that after returning home, I had tried to manage without further support, but that (second) night, the 'critical incident' was that I had found myself without the strength to get upstairs to bed and was faced with the choice of going to A&E or else spending the night on the hall floor, whilst experiencing significant symptoms....etc.

So it was the combination of two emergency admissions in a very short time PLUS highlighting a possible but easily fixable problem (the stairs) that might make it much less likely that the same thing would happen again. My guess is this might not have worked if BOTH of these factors aren't applicable i.e. no recent history of recurrent emergency admission AND a 'quick fix' solution. I don't think a one-off flare in some chronic medical problem, or where there is no obvious OT-type 'fix' would trigger the same action. But. as ever, I might be wrong. x

Barnclown profile image
Barnclown in reply to whisperit

THANKS! I love your analysis: this is how i “try” to analyse my most recent crtical incidents, eg the barium swallow hyper reaction which resulted in intestinal obstruction + intolerance of food by mouth & significant rapid weight loss..l.then a few months later the hyper reaction to the incompletion + retension of the video capsule endoscopy which almost resulted in emergency intestinal surgery (PHEW: dodged that) : both cases involved critical incidents due to documented multiple contributing factors. Now this week i’ve just managed to dodge a hyper reaction to CTE with contrast (i try not to think what Critical Incident that was most likely to cause)...

Now am on alert for what the MRI enteropathy coming up at the end of this month can do to me

Ladyuponthelake profile image
Ladyuponthelake in reply to whisperit

Well I'm still so very glad that someone took the time to CARE for you. Thank God for such people looking out for us. 🌻❤🌻

Ladyuponthelake profile image
Ladyuponthelake in reply to whisperit

Ahhh yes get it! Thank you for the I formation.


Kali profile image
Kali in reply to whisperit

Hello, I am an OT living with lupus which I manage fairly well as I work in a community team where we provide the things you have been given. Anyone struggling with daily activities should ring their local Social Services and ask for an OT assessment. There is often a waiting list but in our team we reprioritise if we are made aware of a crisis so I would recommend you ring back if things change drastically.

In hospital there is usually access to an OT if you ask but in hospital the more acute problem is looked at in order to get you home to be able to admit new patients.

There are more teams attached to hospital nowadays who can follow up which is what happened in this case. If you are having falls mention this as preventative care is a buzz word these days.

Personally I find 2nd stair rails, raisers to chair, toilet etc good. Using a stool in the kitchen really helps. If you are struggling getting up from a settee it is easier to get up from a chair as you can push up bilaterally. Sit to do things where you can to conserve energy so that you can do nice things later.

If the kettle is heavy, a travel kettle is good for making one or 2 cups. Also something called a one cup drinks dispenser is useful as you put cold water in the back and just one hot drink comes out. When I’m having a flare my joints feel a bit unstable so it prevents tipping hot liquid.

whisperit profile image
whisperit in reply to Kali

Thats really helpful. Thanks, Kali x

Kevin53 profile image

Brilliant news.

flap7 profile image

I'm so pleased for you - it's almost surreal when someone actually "gets it", listens and acts!

Enjoy a lovely long soak and I hope that these small things give you some respite from your recent trials 🛀💆‍♂️❤

whisperit profile image
whisperit in reply to flap7

Exactly. I realised how in virtually every other conversation I have with a professional, their basic attitude is so often, 'Hmmm, really? Why should I believe you?' As if you are trying to cheat them out of something....

Lupiknits profile image


weathervane profile image

Really pleased for you ! Hope it makes life alot easier for you 😀

eekt profile image

Tremendous! Glad you're spreading the joy! xxx

whisperit profile image
whisperit in reply to eekt

Feel free to come round and we'll have a hoist party x

eekt profile image

WooHoo! I could bring my neti pot! xxx

baba profile image

Really pleased for you, hope it makes a difference.

misty14 profile image

Lovely reading your good news Whisperit. Thanks for sharing how it was achieved and great to learn how joined up thinking in NHS can work wonders!. Hope they make a BIG difference to your everyday

life. X

eirinym profile image

It's great to hear you're having a positive experience. I hope your days continue to improve, we all need more progress and positivity in the world.

Best wishes

PMRpro profile image

Brillliant - and how very encouraging.

whisperit profile image
whisperit in reply to PMRpro

Indeed. Every few minutes, I was asking, "Is there a cost to this?' 'How long can I keep this?' 'Is there something I have to sign?'. And they just said, 'This is what you need, so why would we charge?' In light of Wendy's debacle in Pembs, maybe I should mention that this is also in Wales! x

panda2 profile image

That is downright wonderful! You have your own veritable playground now!

P x

Ladyuponthelake profile image

So so pleased for you! I hope this makes life easier for you! Thank goodness someone very kind heard your suffering. Enjoy the freedom these things will give you. 🌻❤🤗

Angelann69 profile image


DRunnerchick profile image

So glad things worked. Those of us "across the pond" have to fight for things when insurance denies it. As a sign of solidarity, I fought and won (with the assistance of my 🌟GP) by filing an appeal and requesting a hearing for my denied physio rehab. I stated how ridiculous it was to deny after my fifth fall (what you would call a critical incident?) I asked if they were waiting for me to break a hip. Needless to say, they immediately called me and told me a hearing wouldn't be necessary and my treatment visits had been approved 🤣😎🤠💪🏻. Unfortunately, because of their shenanigans I can't get in with my neuro PT for 3 months. I still feel like it's a victory. Yours definitely is!


Barnclown profile image
Barnclown in reply to DRunnerchick


whisperit profile image
whisperit in reply to DRunnerchick

Well done DRunnerchick. You hit the nail on the head - too often, our 'providers' seem to be doing just that - waiting for a disaster rather than putting in an earlier preventative measure. Hope you get that physio input in time! x

DRunnerchick profile image
DRunnerchick in reply to whisperit

Thanks so much! Fingers crossed 🤞🏿 I can keep myself out of trouble for that long 😉. Thanks again for sharing your good news. We could all use more of it in the 🌎.


Treetop33 profile image

Well done. That's great. Hope it all makes a difference to your quality of life.

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