I just had to tell you all about my upset today. 😖 I left a message on my Rheumy helpline regarding whether I’ve to reduce my Hydroxychloroquine dose now that my flare has passed and rash has faded. I asked at the same time if I could be prescribed the film-coated Zentiva brand because my gastritis has returned now that I’m off the Lanzoprazole which was suspected to have caused the flare.
Well the very nice Rheumy nurse phoned me back to say I was to stay on the same dose of Hydroxychloroquine and that my Rheumatologist was trying to see if she can prescribe the Zentiva for me. She also added, and this is what upset me, that the posters I’d dropped off for my Rheumy were not allowed to go up on the walls! It is hospital policy!! 🧐 What?? Has anybody else come across this??
However she did say my Rheumatologist had herself laid them out on trolleys for patients to see along with the leaflets I’d enclosed and I asked her to thank the Dr for me. 😘 But I can’t understand this policy!😤
Who would have made such a policy? Would it be a hospital Trust or something? My hubby suggested I contact our local MP. Do you think that would help? I can now see why it took me 6 years after diagnosis to stumble across Lupus UK! If hospitals aren’t allowed to put up posters how are patients going to know? 🤷♀️
If anybody has come across this themselves and if you have any suggestions on how to get this policy changed please let me know. I just can’t get my head around it! All suggestions gratefully received. 👍🏻 Thanks fellow Lupies. 💝
Spotty💕
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I think you are right Boudica, but wouldn’t you think they’d put the small posters on a pin board?🤷♀️ Our hospital is still quite new and I really can’t recall if there are any pin boards or not. I’ll look next time and if they do have them I’ll ask if the posters could be put on there. The fact the Rheumy Dr put them on trolleys suggests there aren’t any. But I’ll look. Thanks for that. 👍🏻
It's possible that there aren't any pin boards and if there are s/he maybe thought one of the nursing staff would pin the poster. Not sure if a busy Dr would think about pinning up a poster to be honest. Have you asked his secretary about posters and leaflets and what the hospital policy is regarding them?
It was the Rheumy nurse who told me that Dr M put out the posters on the trolleys herself because the hospital policy was for nothing to be displayed on walls. I’ve no idea why.
Strange I now your hospital is fairly new like mine but not having a notice board does nothing for people who are looking for a local or national group and a lot of people don't think to look at what's on a trolley unless it's been brought to their attention. I know I wouldn't think to look on a trolley unless there is something to bring my attention to it.
I totally agree. That’s why I’m so upset by this.😖 The posters and leaflets were provided by Lupus UK and are to promote Lupus awareness and the leaflets were regarding support and offering somebody to talk to about Lupus. Let’s hope some patients see them! 🙏🏻🤞 I wish they’d been available when I was diagnosed 6 years ago! But with a hospital policy like that I can see why they weren’t! Thanks for your understanding Boudica. 🤗
It’s to do with infection control. Wanted to put up some drawings for my sister that her grandkids had made for her. Could only put one up due to the kindness of the staff 😞
That was very kind of the member of staff. 👍🏻 I can quite understand that policy in a ward, but this was a waiting area for Rheumatology. Might as well have all clinic patients walk over disinfected mats and wear a medical mask in case of infection.😷🤷♀️
Thanks for your kind words Lupusrelative. I think you aren’t far wrong about a lot of the medical profession being in the dark about autoimmune diseases. 🤨 All the more reason to try to spread the word! 😋😁
I left the posters and leaflets for my Rheumy Dr and had suggested they were put in the waiting area. She placed them on the trolleys for the patients to see because of the hospital policy about not putting anything on the walls. I have already placed posters and leaflets in 2 GP surgeries and a health club, as well as the hospital, but great idea for the other venues you’ve suggested. 👍🏻Thanks.
We don’t have a local Lupus group, so it is down to me. 🥴 Thanks again for your suggestions. 🥰
Nothing like that at my Rheumy clinic I’m afraid. 😢 That’s why I thought I’d give them some posters and literature to display. Now I know why there weren’t any. Not our hospital’s policy. 🤨 I was hoping to help Lupus patients discover Lupus UK because I was unaware of it for the first 6 years after diagnosis. I knew they would learn from both the literature Lupus UK provides and this brilliant forum which also offers invaluable support. 👍🏻Hopefully the info my Rheumy Dr has put on the trolleys will be picked up by waiting patients. 🤞🙏🏻
Well done TM. 👍🏻In my case it was the Rheumy herself who put them on display because she knows herself there is no info on Lupus either. It is just that the hospital won’t allow anything - nothing at all to be put on the walls that I find ludicrous. Why not put up pin boards/information boards????🤷♀️
Which hospital refused displaying the posters?. I have to admit that I haven’t seen a Lupus poster on display in my hospital clinic. The reason may be that if one poster is displayed others will want to do the same for their health diagnosis and this would definitely be a problem, the hospital walls would be overloaded. We are sent Lupus posters to display locally and some outlet say no also. I believe it is a health and Safety rule in the hospital too. X
It is the main hospital for my regiion in the south of Scotland. They haven’t refused to display the posters only refused to put them up on a wall. No explanation was provided except that this is their policy. So 🤷♀️. Thanks for your reply 🤗
It's because they cannot be wiped clean, if they are plastic coated it's fine but it's an infection control policy, everything has to be able to be sizeable as it can hold germs.
No its definitely an infection control policy nothing to do with anything people are saying about not wanting people to know about lupus etc!!
I'm a nurse and in our surgery everything on the walls has to be wipeable so that it can be cleaned.
In clinical rooms if a patient came in with MRSA for example or d&v then the rm would need to be deep cleaned and if there were paper posters on the walls then they would all have to be removed each time whereas if they were laminated or plastic they could be wiped clean.
That’s very interesting . Thanks Sara. So if I laminate the posters before offering them to clinical environments they might be more readily accepted do you think? I could ask them first I suppose. Thanks again. 😘
That is a very good idea. 😁 Excuse my ignorance, but who/what is PALs? 🤔
I actually went into the hospital today and although there were no information/pin boards in sight I did find 1 rotating leaflet stand in the main foyer. There was 1 empty pocket so I quickly and discreetly filled it with leaflets about talking to someone about Lupus. I felt SO good as I walked away!! 👍🏻😊
I also placed poster in 2 Tesco stores and a Costa Coffee all of whom were only too happy to help and thanked me for taking them in! 🥰
Patient liaison Services....do speak to them before you leave any more leaflets....they will help, you I’m sure.
Hygiene must be paramount in hospitals ....enough germs come in ....it is a very serious problem ......whole areas may have to be closed if infections are introduced. I know it’s very unlikely from a few sheets of paper but it could happen.
I know you want to bring attention to Lupus, but please ....not without hospital consent.
I thought you’d approve Kat. 😂 I actually thought of you and wished you were there with the transport to get us away quickly! 🤣
But I’ll take AC’s advice and speak to the PALS for future materials. And it was SO nice to have happy positive people only too happy to take a poster off me at the 2 Tesco stores and the Costa Coffee. 👍🏻👍🏻 I’ll be trying the Tesco in the next wee town too shortly. At this rate I’ll be needing to order more! 🤞🤞
That's it...hospitals although u would think would be the best place turn out to be paranoid about infection control..but let's face it they have had to get a handle on it.. MRSA n all that!!
I have been thinking about u today n was gonna PM just to see how u r...but I can see that your doing just fine n dandy without my getaway car!! 😝
The other thing that I thought is that there r many people in society in general who have symptoms n haven't even been to any doctors...so why not shop windows, cafes, libraries etc.. OMG the possibilities r endless!! N it's great that non-medical peeps r happy to display posters!! Go Spotty!! 🛒☕Xx💜
You are SO right about the symptoms Kat. I had them for 40 odd years before being diagnosed!!🤷♀️ I was sick of being told that tests came back negative and that supposedly unconnected illnesses/conditions like the faulty gall bladder that was removed, the thyroid cyst resulting in half the thyroid being removed, the migraines, miscarriages etc etc were just unlucky isolated events. 😬Nobody ever joined the dots until the reaction I had to Terbinafine when my spots all joined up to become one horrendous mess all over my body and limbs. THEN they took notice and did all the tests. 🥴So hopefully as you say the info put in places other than medical venues will help those with symptoms to join the dots themselves and ask their GP to get them tested for Lupus. 🤒
So thanks again for your support and encouragement in my venture Kat. 👍🏻 Take care and PM me anytime. 😘💕
Hubby wears a lupusuk badge..n he has connected with quite a few people when he's out n about..he went to a butchers shop..local one..n as he was having a chat..the butcher asked him about the badge..hubby said my wife's got lupus..n butcher said..so has mine!! Small world eh? So I wrote a little note to his wife just saying that I find this forum wonderful for info, advice,n general support etc..so everytime hubby goes in for quality meat they usually have a chat about their Mrs's..support happens everywhere..n we get a discount!! Regular customers with something in common 🤔the world works in mysterious ways 😃xx
Nice one Kat! 👍🏻 My hubby and I also wear the badges and have had a few people talk to us about it locally or when on holiday in other parts of the country. A local glass-maker who takes part in our region’s Spring Fling (when artists open their studios to the public) told us she has Lupus too and has to wear special protective gear as she is allergic to some of the ingredients. 😳 She did know about Lupus UK though because she was diagnosed when she lived in the south of England and was told immediately about Lupus UK. Not so here. ☹️ Does your butcher do discounts for all Lupies??🙏🏻😂
Hi maybe the hospitals don’t want anyone knowing about lupus or any illness or disease. I myself attend a rheumatologist and I find it so strange that no one gives you a leaflet and I have asked and got nowhere just a blank stare from the receptionist. There’s absolutely no information on lupus or auto immune diseases such as Sjögrens at my rheumatologist appointments, yet at the same hospital when I attend the migraine clinic I receive leaflets and see leaflets or posters on the walls. Every hospital I have ever attended has always had posters and been given leaflets but not at the rheumatologist clinic. So strange. Who knows.
That is so strange that it appears to be ONLY your Rheumatology clinic that doesn’t have posters or leaflets! So it can’t be the hospital policy then in your case. I wonder why they are keeping patients with Lupus and other AI diseases in the dark?? My Rheumy did give me a leaflet produced by NHS about SLE when I was newly diagnosed, but she had no information about support, this forum or any further information. I had to go searching myself, and my dermatologist had strongly recommended I didn’t Google it because you always get the worst case scenario which he thought would frighten me to death. 🥴 Eventually early this year I did Google Lupus to find out more about symptoms because I was experiencing new ones. And that’s when I discovered Lupus UK and this wonderful forum. 🥰 I then decided I must share this with all other Lupies who maybe didn’t know about it either, as well as people suffering symptoms they didn’t understand who hadn’t yet been diagnosed. It was Lupus UK’s own suggestion of ‘adopting a hospital’ that made me try my local one. The locum Rheumy I saw in May gratefully received the items I gave him and I followed it up with more for Lupus awareness month delivering an envelope of items including 2 A4 sized posters to my regular Rheumy. And this has been the result. Very disappointing. But I’ll keep trying. 😉
Perhaps you could offfer to give some leaflets etc to your Rheumy receptionist to give to other patients next time you go? See what the reaction is like. 🤞
Hi think I will ask my rheumatologist why there are no leaflets or posters on my next visit next month. It’s just so odd. Will try and get some leaflets to give them. Also am off to see PALS next month too so I will Get their opinion on it. I was once told they don’t want to give a diagnosis as people could then claim benefits and the government didn’t want them too. Will keep you updated. Cheers. Elena.
Very good idea to ask your Rheumatologist the question and to take some leaflets with you. 👍🏻 I don’t know what PALS is, but hope they are able to advise you. Not everybody with an autoimmune disease is on benefits. Many still work, so I don’t know if that reason will be right. 🤷♀️ But please keep us posted with how you get on.
To be perfectly honest we have leaflets at my hospital.... on lots of diseases......people with all sorts of germs pick them up & drop them, & they end up in a mess on the floor and the staff are driven to distraction trying to keep them tidy.
I would not pick one up for fear of who had last picked it up, & possibly coughed & sneezed all over it!
We wash our hands and try not to touch doorhandles so why pick up bits of paper in a hospital where germs abound?
Maybe Lupus UK and NRAS and any other societies that would like their services publicised could liaise with the hospital then have a clean laminated notice placed ON THE WALL with contact details?
I think the digital images on the TV screen as Paul mentioned is the way to go. I dropped off a letter to my Rheumatologist today (real reason for going to the hospital) asking her about that and for an e-mail address to pass on to Paul. If they don’t use a TV screen for that purpose then a laminated wipeable notice/poster is the next best thing and I’ll ask PALS about that. Thanks AC 😘
But do remember...the more patients who ask fir a consult to get a “possible“ Lupus diagnosis.....will mean the consultants will be even busier & so there will be even less appointment appointments available!
Good point AC. But having had to wait 40 years to be diagnosed myself, I really don’t want anybody else to suffer that. 🥺 If it means there are fewer appointments with the Rheumatologist, then so be it. 🤷♀️. 💕
Please try not to get too upset!! Remember stress drives lupus!!! You're a warrior woman who wants to spread the word about lupus..so yes be disheartened but rules is rules in the NHS unfortunately!! There's a LOT of red tape n hoops to jump through for something that seems so simple..mad I know but true!!
As Sara says it's an infection control matter..hospitals r places where it's very easy for infection to spread rapidly..n I mean life threatening infections..so hospitals may not be the best place!!
However your rheumy did put the posters n leaflets out on the trolleys so that is progress!!
If u write to your MP u would just probably get the standard reply of 'its hospital policy'..which could leave u even more frustrated!!
Phillipo has some good ideas of where to try within the hospital..u might have better luck in non-clinical areas!!
And hey..hospitals aren't the only places u can target..let's face it it can take many years of suffering with lupus before a diagnosis..so maybe more general public areas might be something u could focus on??
Thanks as ever for your support, understanding and sound advice Kat. 🥰 I woke up feeling lousy this morning, so it probably is getting to me.😫 Not worth it!🥵
So I’ll try other public places. At least my local Bannatynes health club has taken posters to put up for the month and 2 doctor’s surgeries (including my own). So I’ll see what other venues I can persuade before Lupus awareness month is over. Good to hear from you again Kat. 😘
Another thing I'll mention is that if u were to put a poster up outside of October..I don't think there's any law against it!! 😜
Yes October is lupus awareness month but I talk about lupus all year round so it's just literature to inform people about symptoms, lupus UK, and how to get more help n information!!
Thanks Kat. 🤗 Yes, I actually placed the materials in GP surgeries outside of October but thought if I got my foot in the door as it were during October with the other venues, they might be amenable to keeping the literature and/or posters up for longer - maybe even just forget to take them down! 🤞
I’ll keep trying👍🏻 or as my hubby says, Im very trying! 😂🤣
That's the spirit!! 😹😹😹Laughing's sooo much more therapeutic than crying!!
I've got images of u dressed in combat trousers with a cheeky little black vest top..armed with lupus UK leaflets, posters, badges n bookmarks..under the cover of nightfall..breaking into churches n community centres!! 😹😹
😹🐑😹🐈we sure would!! I'll see u later (after dark) but I will warn u that you'll have to push me in the wheelchair..n I usually go to bed about 9 o'clock!! 😴😴😴Xx
😂At least it is dark early now so no worries about your early bedtime. 😁 And a free workout thrown in pushing you to all these venues! 🤗 Brilliant. 👍🏻 As long as you can carry all the literature! 😉 And I hope we don’t have to make a quick escape🥵🤪 We’ll both need plenty of 😴 after that! 💕
It's ok..I've got it covered!! I've got a big rucksack on the back of my brilliant NHS chair..so as long as we target places on hills we can make a very quick getaway..if u don't mind sitting on my lap!! U will need a rest after pushing me up there!! 😳♿ I've got my blue badge though so at least we can park up!! 😹😹
Thanks so much for the giggles..u have brightened my day ☀️☀️💐xx
I was at Worcester hospital for nearly 14yrs and never saw posters on Lupus in that time at my Lupus clinics. Plenty on Arthritis, but nothing on Lupus. Similarly, I even handed my GP a reference books for GPs, on Lupus, which he duly put in a draw, never to be seen again. I was at that GP surgery for 17 yrs AND handed in posters to reception. Well, from the pattern, you can guess the conclusion...
You deserve 10 out of 10 for trying!! 👏🏻👏🏻 But what is wrong with Worcester’s Rheumy dept and your GP surgery? 🤷♀️ That is appalling behaviour. My surgery took down materials I’d given them after only 2 months so I asked why? I asked to speak to the Practice Manager but he’s never available, so I e-mailed him and explained the importance of info for people with Lupus symptoms, if not the disease itself, and how I’d gone over 40 years without diagnosis then 6 years without any support because of the lack of info. He replied that he’d be happy to keep at least 1 poster up on the info board permanently. So I feel that is one victory at least! 👍🏻 Don’t give up! 🥰 Spotty 💕
Thank you so much for ordering some awareness supplies and taking them to your hospital. I am sorry to hear that they have policies preventing posters being put on walls. This is something that can vary between hospitals. Sometimes new hospitals are stricter about this and just use their TV screens to share posters/awareness campaign material now. If this is the case and your rheumatology dept would like to receive digital versions of our posters in the future, I can certainly arrange this. I'd just need the most appropriate email address to send them too.
I hope that some people were able to see the posters on the trolleys.
Only too happy and willing to help. I’ll ask about the digital versions and if they have the facility and agree to receiving the materials, I’ll obtain and forward their e-mail address to you.
It's really wonderful you discover lupus UK, sorry it too so long. I didn't know about lupus UK and when I did it took one year for me to try to make contact because I was fearful and often depressed. Good luck with contacting your mp
Thanks Rumcake. After what Paul said I have written a letter to my Rheumatologist about digital posters and awareness campaign materials so hopefully we’ll get round it that way. Thanks for your kind words and support! 😘
Too many posters around. They become old and leave walls looking a mess.They get dusty and this is not suitable in medical surroundings.Your posters were at least put on a trolley. Why contact an MP when they have plenty on their plates at the moment.
I agree people need to know about lupus etc I have RA .
Having been a podiatrist I the NHS I know how difficult it can be keeping treatment areas as smart as possible.
Too many posters yes of how to contact pals when not happy. Relevant helpful information ...... lupus ... no. Keeping hospitals clean and tidy all part of what a hospital should be, poster on the wall instead of cluttering tables and trolleys, much tidier, replaced or cleaned before dusty easy.
MPs too may have plenty on their plate but what more important than people their health their well being to help contribute to life. MPs got our health system to the point it is, mps neglect the importance of the nhs and us trying to live life in ill health have enough on our plates too , along with wondering how long we will have an nhs for. The same mps so busy seeing what else they can take off the sick as if they don’t suffer enough. The posters are there to help to inform , yes they went on a trolley AT LEAST.
If posters become old and dusty isn’t it because nobody has taken them down before getting to that state? 🤔 They can mess up the walls I agree, so information boards are the answer I think and can be kept tidy.😊 Our local MPs are always busy but also willing to help where justified. However I don’t expect to have to contact him now for the reason I gave Rumcake.
I work for a charity, I display posters across many different trusts, I have found that some hospitals require them to be laminated so they are wipeable.
Thanks for that DMM.👍🏻 I’m going to contact PALS at our hospital to see what they suggest and whether laminating the posters would help. We have a laminator at home. Thanks again. 😁
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Letter to my MP re Hydroxychloroquine
