Survey from Leeds for patients about tapering steroids

[PMRpro]

healthunlocked.com/vasculit...

This has been posted on the VasculitisUK forum. I imagine there are far more people who could express an opinion here - so please go and have a look. You can't say you haven't time

[Yellowbluebell]

I hgot time, as far too busy in my garden supervising!!YBB

[PMRpro Ambassador in reply to Yellowbluebell]

What, even at night? It looks quite good actually ...

And suggests there is to be a new NHS emergency card - credit card sort of thing.

[Koalajane in reply to PMRpro]

It does look good and I will try and get some more tablets as it suggests

[Topcar]

Thanks for the links I've printed the booklet (great ammunition) and completed the survey it was very informative ☺

[PMRpro Ambassador in reply to Topcar]

It probably isn't the final version - but they are asking for patients to tell them if they can't understand it I presume. Looks OK to me - but then, they could give me the professional version and I wouldn't complain!

[nuigini in reply to PMRpro]

Booklet is great! Survey was a bit repetitive in terms of question on the design etc.

I made a comment, which will likely be ignored, about it not dealing with those who only absorb 50 % of prednisone. At the same time I realize a booklet of this nature really can't deal with the unique one-offs.

Sadly it's a fact that is never considered/mentioned other than a side comment at times. Yes, I'm still frustrated dealing with this.

[LIVEORDIEHEREIAM in reply to nuigini]

We are a "special minority"!

[SheffieldJane]

Tried to do it but couldn’t progress from question 12, the “ next” button wouldn’t respond.

I plead extreme fatigue if it’s my fault. The leaflet is better than anything I was ever sent.

[PMRpro Ambassador in reply to SheffieldJane]

Which I assume is why they have done it!

[Hidden in reply to PMRpro]

The drs letters are great idea ...hopefully it'll stop a lot of messing around if they follow it.

[Lookingforideas in reply to Hidden]

Hi there. I’m just printing out the 8 pages (16 with 2 on each page lol) if this document as I want to discuss it with my GP at my telephone appointment this week and ask for the 2 week “rescue steroids” extra prescription. However although it mentions the ‘Dr’s letter’ I can’t find that... it’s not attached to the link in the PMR post and there nothing in the doc to follow to find it. Do you have any idea where I can find that Dr’s letter so I can send that to her too, or at least tell her what it says? Thanks for any help with this - I accept its maybe there somewhere and I’m just being thick not finding it 😬🤪

[Lookingforideas in reply to Lookingforideas]

Ps. I did manage to complete the survey so I’m now feeling quite smug 😂😂😂

[PMRpro Ambassador in reply to Lookingforideas]

Not sure what you mean. The booklet is a work in progress and this is it up for feedback from patients about patient-friendliness. There is not yet a full option for doctors and patients.

[Hidden in reply to Lookingforideas]

It still in the development phase. The last few pages are for Dr eventually but it's not finished as a task by the team yet. 🌻

[Lookingforideas in reply to Hidden]

Ok, thanks a lot - I just saw a mention somewhere by someone that there was a letter for DRs/GPs which was connected to this ... knowing me I’ve either misread it in a rush or I’ve connected two unconnected things together in my head🤪. Thanks for the quick replies (PMR pro too 😃). I never fail to be impressed by the speed and efficiency of you guys 😍👍

[Hidden in reply to Lookingforideas]

Just check the last couple of pages where it says "for the Dr". This may not be how it looks in the end but at least it says what issues the Dr should be considering. 🌻

[Lookingforideas in reply to Hidden]

Ah, I did find that bit, but had been thinking there was a letter as well ... sorry, I hadn’t registered the fact it wasn’t a final version ... which was stupid because I’ve now realised it did say it was the 2nd draft 🤪

[Hidden in reply to Lookingforideas]

At least it's something to take to Dr. Better than nothing and I suspect the contents will remain the same.

[Lookingforideas in reply to Hidden]

It’s definitely useful for sure. I have a telephone appointment on Thursday morning so I’ve printed it off to read bits to her 😃👍

[SheffieldJane in reply to PMRpro]

Well it beats a syringe and ampules of Hydrocortisone. 😳I received these with no warning a little info.

[Hidden in reply to SheffieldJane]

It's a quirk of the forms design. Wherever a red asterisk appears you not only have to not agree/ strongly agree but write a comment or n/a in the answer part below. That allows you past question 12.

[SheffieldJane in reply to Hidden]

Thanks I will re-visit it.

[CT-5012]

I couldn’t get past 12 either, will try again later .

[Hidden in reply to CT-5012]

See reply to sheffieldjane

[CT-5012 in reply to Hidden]

Done it🤯

[Thelmarina]

This is brilliant. So clear! Thankx

[Hidden]

Interesting and informed. Thank you; I’ve submitted feedback. It’s really helpful.

[Telian]

Cant open the booklet!

[Hidden in reply to Telian]

The leaflet? Have a got a pdf reader on your device?

[Telian in reply to Hidden]

I have - done it now x

[Telian]

Completed

[ignatz]

Done!--

"Rheumatology patients taking long-term steroid tablets during COVID-19

Your response has been recorded."

My specific comments...

@ 02. Why is this relevant to me if I take steroid tablets?

"If you have been taking 5mg *****per day?***** or more of prednisolone, for 4 weeks or longer,

@ Rule 1./ Rule 2./

*****could be more legible and understandable if different colour/ typeface behind each rule?*****"

[PMRpro Ambassador in reply to ignatz]

I often wonder about that - the background colour is important for visually impaired people. Just like background music is a nightmare for the hearing impaired - as if it weren't nightmare enough for the rest of us!!

[Andypan]

Thank you so much. Was absolutely excellent and so informative, esp the bit about how to increase one's dose if you are ill etc. I've printed it out and will keep with me!

[PMRpro Ambassador in reply to Andypan]

Did you respond to their survey?

[Andypan in reply to PMRpro]

Yes i did!

[Mimma]

Done

[Viviolops]

Excellent, really clear. I feel much happier now I'm better informed.

[PMRpro Ambassador in reply to Viviolops]

Did you respond to their survey?

[Viviolops in reply to PMRpro]

Yes I did

[Hildalew]

Really excellent Wish my printer hadn't decided it just doesn't want to work! Will definitely print it out when I can get to a printer. Yes, I did the survey.

[Rugger]

Done. I thought it was very clear, but like you, I worked in the NHS. I used to produce patient information leaflets and know the process of working to get things just right.

I have one of the new steroid emergency cards. It's bigger than a credit card (11cm x 7cm) and I had to fashion a plastic pouch for it, to stop it getting dog-eared in my handbag! Unlike the previous cards, it has no space to record the dose.

[PMRpro Ambassador in reply to Rugger]

Lord - who thought that up! Where are you supposed to carry THAT!

[Hildalew]

Wouldn't it be great if it was possible to produce a similarly clear and straightforward leaflet about the general principles of tapering pred.

[PMRpro Ambassador in reply to Hildalew]

Mmmm - except the medics don't necessarily all agree on that point!!!! Especially with us ...

[Hildalew in reply to PMRpro]

Sad but true.

[Phoenix51]

Thank you for sharing this .. the booklet is excellent. I have completed the survey . wonder if there are any plans to produce other info booklets in this easy to read/understand format ?

[PMRpro Ambassador in reply to Phoenix51]

No idea - I just picked it up from the VasculitisUK forum. I wonder if Prof Mackie knows.

[Rugger in reply to PMRpro]

I expect she was involved with writing it. I'm sure I saw her name on the last page of the survey, as one of 2 authors, but I can't go in again to check, without repeating the survey!

[PMRpro Ambassador in reply to Rugger]

I assumed she was - it was the question about other booklets I wondered about.

[bunnymom]

Very clear and reassuring I thought. I took the survey. Thanks for posting it.

[herdysheep]

Have printed off leaflet and done survey. Having been on pred since 2012, slightly concerned to read of sick day rules for the first time!! Wish I had known that when laid low by bad UTI and mega antibiotics!

[Bj2016]

I completed the survey. I thought it was a clear, informative leaflet. No big blocks of text, short sections/pages, simple illustrations and easy to understand language.

Of course I have heard of adrenal insufficiency from this site (not from a doctor) but I didn't have any inkling of the possible need for a rescue dose of pred. I think I will be contacting the surgery to ask for a supply. And I'm going to put a note in my purse with my dog-eared blue steroid card.

Keep safe and as well as you can, everyone.

[Spittal9]

Thanks for highlighting this. Found it to be informative and will be good to share it with GP. Completed the survey.

[tangocharlie]

I've had adrenal problems a couple of times, both times I felt I really thought was going to die, I just felt so ill and dizzy with low BP. The first time in early 2017 when tapering off steroids and more recently when there was too long an interval between steroid injections. First time I was delighted I'd got down to 3.5 Pred at last and that as what I thought was a result, I lost a stone quickly in a week. Thanks to Googling adrenal symptoms and ringing Dr Mackie to ask if she thought it could be happening to me she rushed into action I then ended up in A&E on a drip and emergency steroid injection and was given Hydrocortisone for a few months and another emergency steroid injection to keep on me at all times. The second time this last December I realised what was happening and went to A&E and they did a blood test and told me I wasn't having adrenal problems because my pottasium and salt levels were fine, but to me it felt the same as before so I went back on the Pred. Again I felt so very ill. My current rheumy said it wasn't adrenal problems and I could only have the depo-medrone injections every 3 months, not before, but I'm sure it was the effect of being between injections, which is why I'm concerned again now.

[PMRpro Ambassador in reply to tangocharlie]

Not a theoretical risk as some doctors would have it, is it?