Results from the INSPIRE Study

[Bcol]

Not sure if this has already been flagged up, if so, I'll delete it if not, although this was basically looking at Lupus some of the results are germane to us.

Some comments from the email I received.

Many thanks for taking part in the INSPIRE rheumatology survey a while ago.

The team has been busy analysing all the results and we will be publishing lots of papers that aim to represent the patient view.

The second paper was published today. Although for this paper, and the next one, we have focused on lupus, the findings about the patient view being under-valued apply to all the rheumatology diseases.

Our later papers will cover all the diseases and will be trying our best to ensure clinicians and policy makers listen to patients and improve rheumatology care.

Here is the paper published today:

doi.org/10.1093/rheumatolog...

It has been covered widely in the national media, here (some may be behind a paywall) :

• theguardian.com/society/202...

• thetimes.co.uk/article/list...

• telegraph.co.uk/news/2023/1...

• dailymail.co.uk/health/arti...

• standard.co.uk/news/health/...

• independent.co.uk/news/uk/u...

[DorsetLady PMRGCAuk volunteer]

Was discussed here -

healthunlocked.com/pmrgcauk...

But leave your post up as it has study name in title ]- also see this link for my comments on previous post-

healthunlocked.com/pmrgcauk...

[Bcol in reply to DorsetLady]

Had seen the earlier post but missed your later one. Brain obviously not working well today!!

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

Join the clan- and I can’t blame Pred any more - had a few trying weeks with household things going to pot , so brain gone to mush!

[PMRpro Ambassador in reply to DorsetLady]

Is that household plans or goods? Daughter was complaining everything is breaking at the same time!!!!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Goods -

New shower cubicle required - one of the doors on old one couldn't be repaired. New cubicle great- very happy with that. So got new power shower as well... slight issue cannot seem to amend the strength of the flow!...okay for shower but takes ages to rinse hair... Guy who fitted it, came back look at it and say "oh see what you mean, will have to get on to manufactures and see what they say" - I just fit it! True there is water coming out, but surely it's not rocket science to check you can alter flow settings the same as you can alter heat settings... or is it me 😏

Also purchased a new bathroom cabinet [self assembly] not an issue except no instructions therein! Contacted online company - do you want a refund or a replacement ? No actually I just want a set of instructions - but seemingly is much too difficult! So I went for refund - the response just dispose of item then, no need to return... what a wasteful approach. So, you know me, searched for manufacture and asked them for instruction - low and behold received this morning by email.

Then on Sunday morning was sorting out some recordings on Sky for upcoming week, and TV suddenly went blank.. with just a red flashing power light... Did all the usual checks - power socket, cables, batteries, other devices input, reboot - zilch.

Spent Monday trying to contact local repairers - no interest. Manufacturers slightly more interested, but only just - did offer contact details - but fruitless as TV too old and parts no longer made. Did get a voucher if I want to buy new one... but only a couple on offer.

Long conversation with all things IT guru [aka son] - he'll have a look through various and see what he thinks I might like - and we'll go shopping in the after Christmas sales - He will install, sort it out and take old one away - so result there in the end.

.. and as he said "I like shopping when I'm spending someone else's money"...didn't say well of course you do - you're a banker!

So looks as if I'm buying myself a new TV for Christmas.

Sorry it's long, but you did ask..

[PMRpro Ambassador in reply to DorsetLady]

What a pain! Not even the sort of things that you DO all buy at the same time either. So did that mean you get a refund AND a cabinet? I'm waiting for my TV to stop receiving local TV - most of it would be no loss (Italian) but might lose Austrian TV and that means wintersports. It is the change to digital HD and whatever, I'm told it is beyond my TV receiver. But at least it is about 40 euros for a receiver to plug in like the rest of my TV reception! The TV is basically a monitor now,

Nurse daughter has a lovely new TV with sound bar - that's the influence of her partner I suspect ...

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

Yes I have refund and cabinet - just need to get it assembled... It was reduced so not very expensive but I begrudge throwing something away without reason...

But that seems to be the mindset nowadays.... was talking to my neighbour about getting TV repaired - and he said - "oh you won't get anyone to repair it, they don't bother nowadays, just say buy a new one!"

No wonder the world's in the state it is....

[PMRpro Ambassador in reply to DorsetLady]

And why the EU is changing rules so things CAN be repaired again. They will repair a lot of stuff here - why I go to the electricals shop I do. They may be a bit more expensive but it is worth it when something goes wrong - and they install things without whinging you haven't done this that or the other.

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

TV was 12years old, and I had been thinking about updating it, so not too upset about that -should have done it on Black Friday (useful comment from son) -but after Christmas sales will do!

[PMRpro Ambassador in reply to DorsetLady]

Don't know - they say BF is NOT the time to buy - and loads of after-xmas sales seem to have started already!

[DorsetLady PMRGCAuk volunteer in reply to PMRpro]

There seems to be sales on all time in UK….

Been ‘making’ my bathroom cabinet this afternoon… done most of it… just 2 drawers to complete - so having a break and a cuppa…

[Lclmlbls in reply to DorsetLady]

One thing after another - doesn’t help the anxiety levels does it! 😵‍💫

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

Didn’t do much for BP levels!! But cabinet all done looks good even if I say so myself..😊

[Bcol in reply to DorsetLady]

Fab, a good result. Ignore the BP for a few hours!! Have another brew and breakfast. I'm just off for my twelve month bloods and checkup.

[DorsetLady PMRGCAuk volunteer in reply to Bcol]

In situ -not very good picture -small bathroom!

As a one-eyed arthritic septuagenarian… quite pleased with myself 🤣😂

BC

[Lclmlbls in reply to DorsetLady]

Looks amazing! People make a living out of constructing Ikea furniture. You could set up your own little business if you're short of summat to do! 😆

[DorsetLady PMRGCAuk volunteer in reply to Lclmlbls]

You could set up your own little business if you're short of summat to do!

Oh right …. I know I’m a bionic woman, a Viking Goddess and an agony aunt but even so, one has to draw the line somewhere you know… 🤨… but thanks for suggestion when I get bored ..😂🤣

[Grammy80 in reply to DorsetLady]

😅😂🤣Oh, I laughed!!! Did it come from Wayfair by chance? Love it, ivy would do great in that moisture. Nice deep drawers. ( Bathroom is large enough---serving one person at a time.)💞

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Spot on - yes it’s did come from there…. Actually have this plant in window - perhaps a bit to big for cabinet

Plant

[Grammy80 in reply to DorsetLady]

Wayfair is well-known for ....' keep it or toss it.' Had a friend who twice received a table with only three legs...the third was fine; one beautiful table and a creative bookshelf were her results ~!😄❣️

[DorsetLady PMRGCAuk volunteer in reply to Grammy80]

Have purchased a few things from them -this is the first time I have had an issue… 😉

[herdysheep in reply to DorsetLady]

must be the viking determinatuion wat done it

[PMRpro Ambassador]

Yours has a different title and links - different titles catch different audiences! Leave it up ...

[Bcol in reply to PMRpro]

👍👍

[LindyMc]

So true! Let's hope some them learn.

[Freshairfiend]

many thanks. I 8m new to forum, recently diagnosed, so this is great for me.

[Grammy80]

I did get that email, but thank you. I especially thought the article from the Guardian sounded like the familiar cry of many~!💞