RE: VERSUS (Off message) New"Arthritis"" charity - NRAS

NRAS
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RE: VERSUS (Off message) New"Arthritis"" charity

Received this letter today from Versus the new "Arthritis " charity....hope you can see it clearly.

No doubt it is a huge mail shot to people who have already been contributing to one of the charities that amalgamated to form Versus.

Unfortunately, I have just cancelled my monthly DD, as nowhere does it mention OA/RA in any meaningful way to explain the difference......from reading the booklet accompanying the letter nobody new to Arthritis would know RA & OA are two different diseases.

So we will still be told "My Granny has that "!

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Agree, from what I’ve seen of them they just talk about ‘arthritis’ as a generalised term for joint pain. No mention of auto immune disease.

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But they think they are so clever..they have developed a "Training Programme" called Core Skills "To better help GP's better understand musculoskeletal (MSK)- their brackets not mine - conditions & empower patients to defy "arthritis!"!

I won't bother saying anymore...but defying only takes 10 minute So it's bound to be " meaningful"

Do these people actually know anybody with RA/OA?

When you think of all the money they will no doubt glean from caring people .....words fail me.

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Frustrating isn’t it? And yet at same time purports to stop people dismissing it as just a’bit of arthritis’? Wasn’t impressed with their website or ads either: both left me feeling they didn’t have a clue themselves: like downtime says, no mention of autoimmune x

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Re their info on Sjögren’s - flippin’ dire - always has been! I’ve emailed, phoned helpline in past and they haven’t been remotely helpful. But this doesn’t mean they wouldn’t be helpful if and when my OA deteriorates or RD next flares.

My expectations of these umbrella charities are different to those of many others here. These days I save my ire for those who receive huge amounts of research funding for very unethical stuff. I don’t think VERSUS will use it’s funding unethically - just pragmatically I guess.

Best umbrella org for Sjögren’s by far is the US SSF.

As it happens even the BSSA website info is pretty hopeless from my perspective, let alone VERSUS, as I have a rare form.

So perhaps, given that the membership fees of BSSA and NRAS are a lot for someone like me to pay annually - it’s all about raising our expectations of these small patient led charities? Along with giving up any surplus energies to support and improve them where possible?

After all there are no other dedicated UK charities supporting those with OA as their main condition. They need VERSUS most I feel.

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Sorry twitchy I hit delete & meant to edit; thought it sounded like I was being funny (wasn’t! 😉).

Same here, wasn’t impressed with their summing up of RD either; not sure who the website is aimed at tbh & found its basic descriptions, well, pretty basic. Although they do have links to the old arthritis research booklets which were good.

I suppose it all depends on whether you want to view it as a type of ‘arthritis’ or systemic autoimmune disease in both cases; pretty obvious which camp I’m in. Sorry to hear you’ve got a rare version of a disease with an even poorer public profile, sure we both wish that would improve x

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🙄🤷🏼‍♀️😊🤗

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I lost your question about looking at the list of diseases on Versus..i looked, & Boy...... are they busy boys & girls? They seem to have fingers in every pie on the MSK Radar,

TBH if I were looking for information on symptoms that I had.....I would have died of boredom before I found it.

I can't put my finger on it, but it just doesn't seem user friendly, nor likely to

Encourage those with OA/RA/AI queries to persevere ..it's a mix if enthusiastic amateur,& ???can't put my finger on it.

But that's only my opinion , there are probably people who will enjoy it as bedtime reading,

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No I wasn’t v impressed AC: sounded a bit like amateur hour tbh, just flicked through a few. I deleted it by mistake, sorry but didn’t say anything useful 😊

know what you mean, something about it got my back up, you don’t realise how good NRAS site & couple of others are on info. Until you read that. Plus we’re all pretty knowledgeable about own conditions so it rankles: came across as a bit patronising in its simplicity & not sure who it’s aimed at? x

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I am truly not into conspiracy theories, but it all sounds too 'commercial' & like US Medicine.

I think some with say a pain in their elbow & no inkling about AI's would never join up the dots.

I often look on the US Mayo Clinic site, as it seems to me to have an understandable ways to double check what you think you know...if

you get my meaning,

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Just FYI I met a friend in the coffee shop at my GP surgery today & as I saw reception was empty I went in & asked if any of the GPS in the practice had done the Versus Core Skills course on line.

As it happened the Pratcice Manager was there so the receptionist asked her..."Shouldn't think so" was her reply.

I asked her if she knew about Versus & she didn't, & when I told her about it there wasn't a flicker of interest.

So much for 23,000 GPs & those 16million consultations we were informed of in the Versus websites.

It's sad really when there must be medical charities working really hard when this expensive launch seems to be lost before it has begun.

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If it’s as basic as the website, I’m not surprised. All seems to be throwing money away at something really ill thought out. Bizarre, have they got money to burn since the merge? x

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Pardon my cynicism, but maybe they have a commercial sponsor Interested?

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Total ignorance really.

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I used to receive the Arthritis Care magazine.

They have amalgamated with Arthritis Research.

They cover all types of arthritis in general. The NRAS site and magazine is specific for rheumatoid and JIA. I think I'll stick with NRAS.

The new name doesn't make it clear what it is all about.

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Agree it's really annoying and a fortnight ago I was at my GPs surgery and couldn't get my usual 1 so ended up with new one who I think was still training and hadn't even heard off RD so I just said hello then goodbye and made an appointment with my GP which I can't get until the 4th off December just as well it wasn't an emergency

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Total bloody ignorance, no wonder people don’t get it. 😖

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On the back of the letter from Versus was a DD form to make contributions.

I have written back, very politely, saying that until both diseases are described. for what they are, please don't ask me for money.

At least Cancer charities recognise all the different types,& publicise each separately.OK, maybe Breast Cancer gets the most attention, but it's factual.

I honestly don't understand why no effort is made with RA/OA.

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Neither do I. According to NRAS 1% of the population in UK has RA... we deserve to be treated without ignorance.

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I must admit that until it affected me personally, I had no idea there were different types of arthritis and having done a bit of research, I realise now that these ads are pretty useless in raising awareness of RA.

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It gets worse...on P5 of the Versus brochure it says "23,000 GPs in the UK have done the ON LINE course since the launch in 2013. That means an estimated 16 million consultations have now taken place by GPs who accessed Core Skills e-.learning"

Anyone had one of these consultations?

The more I read the more I despair it addresses the reader as if they are six years old .

I don't know about you but if I approached any GP in my practice and asked if he had done this course, I think I would just get a blank stare and I'd be sent off to the funny farm.

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Online course??? Sorry for the cynicism but maybe the brought it through Groupon. 🤣

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Well...I haven't done the maths.....but 23,000 GPs?16 million consultations? More like Amazon Black Friday!

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The trouble is that I like Arthritis Research, as they have done some sensible things. Their report on supplements and so on is good, factual and unbiaised. So I donate to them (and they have a legacy in my will). But I agree that this Versus stuff is rubbish!

What to do? Do I throw baby out with bathwater or not?

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Dunno.....as you say Versus appears at first launch to be rubbish! But seeing the amount of TV advertising, very expensive ribbish!

Like you I had a bequest in my will....have spoken to my solicitor ,& will sign removal next week.

It is just such a No Brainer that a Charity like this should explain what RA is, an auto imune disease, & very different from OA....in fact make a feature of that. The public are very sophisticated these days ...I know most of my friends when I was first diagnosed were amazed there were different types of arthritis....but word is spreading, if slowly, & I would have thought Versus should be pushing out as much information about the actual diseases, not waffling on about e-courses for GPs!

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I’d keep up payments but bear NRAS in mind for your RD. as I’ve replied at length below I think there are good reasons to support this campaign but it’s your choice of course.

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It strikes me that its back to the problem with the actual name Rheumatoid Arthritis. If it was renamed, anything anything except words linked to Rheumatism and Arthritis, it would be treated with greater interest and respect. Until that time I think Arthritis UK should stick with OA or at least be clearer about generalised inflammation(not just joints) in RA.

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Sjögren’s doesn’t have arthritis in its name and is just as debilitating, systemic and serious a disease as RD - and nearly as common. Yet who, apart from Venus Williams fans, has ever heard of it? PsA has arthritis in it - should it be changed too?

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No response to the comment you left I suppose Kathy? I've said before, there are at least 3 different ads that I've seen, if only they'd done one for RD, one for OA & perhaps another for PsA or JIA I'd have been happier that it might just reach & inform those who think there's only OA & know all about it that it's not the case. I'm pleased that there is even an ad but think it's been an opportunity missed & an expensive mistake before even reaching the picture board stage. I feel they could have asked their members to provide insight as to where & why there are failings in differing 'types' of arthritis being misunderstood by the people they're directing the ads at.

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I didn't email nmh, I actually write a note & attached it to the Uncompleted

DD form&posted it.

I doubt they will respond.....the brochure seems to be a celebration of a Dr Andrew Jackson & Versus, who "Thanks to you (presumably referring to the two charities we have donated to) have developed the training programme called "Core Skills" for GP's to "help them better understand musculoskeletal conditions & empower patients to defy (?) arthritis".

There is one article about a young girl diagnosed with JIA...but the article commences "As a kid there was hardly a sport I hadn't tried...." Which to me if I had no knowledge of any sort of arthritis would make me think,damaged joints.......& when it goes on to say she ended up after university on an activity weekend canoeing, abseiling & mountain biking" l kinda lost the will to live.

But maybe that is what they presume all JIA sufferers should aim to achieve?

A heartening story, but still nothing someone who thinks all RA is what granny has, could start to comprehend RA or the difference between it & OA!

I'm afraid after 20 years "Defy" isn't the word I would use to cope with my RD!

There is a Help Line No where you can get further information about Arthritis 0800 5200 520

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Really?! I'm not a betting person but I'd bet a pound to a pinch of hayseed nobody here's GP has even heard of the Core and Skills training programme. Given it's relatively recent it's odd none of the newer members have ever mentioned it.

The article isn't realistic, it's sugar coating a possible (more likely) chronic condition & any younger patient or their parents will believe this is how it will be for them or their child, & you wouldn't blame them. Porky pies when there should be the truth, the whole truth.

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The article says this "Core Skills" thingy.....was launched in 2013, when the 23,000 GP's were glued to their iPads learning to defy arthritis....to pass on to 16million patients! Oh Pleeeeeeeeze!

So 5 years on ......as you say.....why has not one person here mentioned it?

I might phone & ask if any of the GP's in my practice have learned to defy!

If it weren't such a wasted opportunity & squandering people's charity donations...including mine .....it would be pathetic.

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My GP certainly didn't. She boned up on RD off her own back the more I saw her about anything relating to it & OA, though she did know more about that as she treated other patients.

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Mine asked if I had RTX infusions every month,& on looking at my prescription on screen asked what I took Leflunomide for?

I have only seen a GP twice in 18 months, there are 8 in the practice so you never see the same face twice.

They must spend a fortune on Brass Plates as the names are always changing!

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They've actually respomded to me...Here's what they said:

Thank you for your feedback and I am sorry to hear that you do not like our new organisation.

We wanted to have a name not just for the organisation, but one that can bring together the millions of people who every day are trying to defy arthritis – from those living with it, to their families who support them to the researchers working for better treatments to our volunteers and supporters up and down the country who provide vital day to day support.

In order to make sure we chose the right name for our organisation, we asked a sample of our supporters and partners to complete a survey on the new name.

As you can imagine, to ask all of our dedicated supporters, such as yourself, for feedback on our new name, simply wasn’t possible. Therefore, we consulted as many people as possible to help provide feedback on the options.

We also understand that removing ‘research’ from our name has worried some of our supporters, but I would like to reassure you that this does not mean that we will stop funding vital research. Our merger last year with Arthritis Care has allowed us to incorporate support services for people living with arthritis and this has meant that we now want to focus on research and support.

However, Funding world class research remains core to our push to defy arthritis. Our intention is to maintain our support for future and current research leaders, fund exceptional research through our insight driven challenges, and to strengthen and grow partnerships with others to achieve our ambitions.

Thank you again for providing us with your feedback, I have passed your response onto the relevant team so that they are aware.

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Hi HH, thank you for posting this.......only favourable remark is " At least they replied"!

Hmmm! Well for starters I'm sure you didn't write saying you "don't like their organisation". It would surely have been preferable to send a less patronising,confrontational reply? They seem to have put more emphasis & effort in naming the venture, than actually thinking how to explain that OA is not an Auto Immune Disease, but RA is!

Versus means against doesn't it? Like Ali -V- Fraser, knocking seven bells out of each other? Hardly appropriate.

I want an organisation I give money to be FOR something, to help raise awareness, but primarily to explain to those who are fortunate enough not to have any AI disease - what the heck OA & RA & all it's associated diseases are all about....& how research can find drugs to make life more bearable. So far it still appears to be all about OA & achey joints continuing to perpetuate Granny's achey finger syndrome.

It's the sort of corporate waffle I would expect from some youngster with no idea about any sort of AI, who has just completed a " Meedja" course.....& is convinced he/she will be the next Journalist of the Year! NOT!

Ah well....can't win 'em all! Just have to wait & see where this venture goes....but there is so much scope to explain what AI diseases are & their affect on previously healthy people. I wonder if a pricey Ad Agency was used or if it's the result of Amateur Hour?

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I emailed versus arthritis last week saying I thought their website and advertising campaign to be misleading and perpetuating the widespread misunderstanding of RD. I received a very patronising email back saying arthritis is an umbrella term covering both OA and RA and the website offers information on both.

I replied saying that I have never heard anyone with RD say they have arthritis as an opening statement. I heard nothing since.

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I really doubt Versus will turn out to be anything more than enthusiastic young medics thinking up ways to deal with 'arthritis' in the abstract, Nothing nasty like reality, like you can't get dressed because you are in too much pain, so you can't work,& earn money, so you have to go through "assessment" by those very people who think Arthritis is what granny has.....& think you are too young to have that -& so it goes on.

Very disappointing when you look at how much money they must be spending on TV advertising alone.

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Their website offers very simplistic and incomplete info on RD, doesn’t even say it’s autoimmune. I too have emailed them; no doubt I’ll receive similar lol 😀

PS ... but at least we’ve tried eh? Felt a bit stupid after I fired one off then saw yours & felt better 😀👍

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good. if they get enough complaints maybe they will do something about it.

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I replied I was thinking of sending our opinions to Versus...but it has Disappeared!

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Oh no, thanks for posting AC and writing to them 🤞someone takes notice x

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I don't think they exactly excelled themselves on OA either. Exercise, watch your weight and excellent joint replacements? Rubbish advice if you have hand OA. Best option is fused joints to manage pain.

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I agree they have absolutely NO IDEA do they?

Looks like they read a 1950's book on Arthritis & went from the there.

Who are they....?

Wonder where these "excellent joint replacements " are available? Last I heard they were on the NHS hit list?

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I’m going to go against the flow here. I think that the advert does help. I’ve several friends and acquaintances that watched that and said to me they get it more now, particularly as it’s a young woman with a career. General public won’t give a stuff that there is OA and RA. Why would they? The important bit for me is that they understand why I sometimes cancel breakfast meetings at the last minute and realise that it’s not just an achy finger or similar.

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Although I understand what the others are saying, this advert I believe is very helpful for the public :

People have asked me questions since this aired. I also I’m frustrated about the OA/RD thing but at the end of the day we are all in pain. And we all need respect and patience.

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I'm replying without checking this again but I saw this when it aired & it struck me nobody discussed anything about being aware there were different types. I know Sophie & Pete commented she was young (did they think she was young to have OA?) & Jenny & Lee discussed she had it, not saying which "it" was. If this is typical of the majority of other viewers then I fear the point has been missed.

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Then there is this: facebook.com/10906893578041...

I think it’s up to each person how they feel about the campaign but I think it does some good.

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I agree the story of the young girl with JIA is very uplifting, but we must remember the NHS was probably in a much better place when she was diagnosed....which would have been about 20 years ago. ....?

I agree RA drugs have improved, but I do wonder with the chronic shortage of rheumatologists as a whole, let alone paediatric rheumatologists, if all the treatment she received would be remotely available in 2018?

I doubt the much vaunted 10 minute consult with a GP who has done the Core Skills course would really help a 7 year old with JIA to get suitable treatment anywhere outside towns with large modern hospitals.

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The point I'm trying to make is we who have AI diseases are so tired of explaing that "No it's not like granny has got."

After 20 years I have given up explaing it's my immune system causing the pain & swelling & nausea ......and if only just once it could be explained by something like Versus in a professional factual way ....it might stop all the 'pull yourself together' ' it can't hurt that much' or ....' if you stopped taking all those drugs you'd probably be better off' remarks we put up with from no doubt we'll meaning people who just DON'T UNDERSTAND !

Because no one has told them the facts.

Is that such a big ask?

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I'm not sure people care enough to want to know the facts if it doesn't effect them and why would they. They can only get so much across in a 60 second advert. I must admit, no one has ever told me to pull myself together. I have had the drugs argument and I've rather given up on that. I go to so many business networking meetings and there's always someone there, almost without fail, that tells me their product such as Forever Living, Juice Plus works. Or I can be cured with one session of kinesiology. I just nod now and say I'm sure you're right and move on.

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Believe me after 20 years you will wish everybody knew.I used to be little miss sunshine like you & smile & nod.......but now I just ignore.....I still meet people who know I have RA who tell me about what cured granny, & I don't care...I don't want sympathy, I would just Iike them to understand the difference & stop thinking everyone with an AI disease needs to "get a grip" & it's not all in your head.

The premise appears to be you can't have something like RA for twenty years because it "burns itself out"!

A few factual articles in the magazine Versus wil presumably publish would save a lot of people a lot of hassle. They might also alert some people they should see a doctor about their symptoms & save them a lot of distress.

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I do tell people - particularly my team and clients so that they understand if I'm not about and if they don't understand, it's just tough! I can't make them understand, so I don't bother. I can't be bothered with the aloe vera brigade as they always reply that it's proven to work but can't tell me anyone that it has worked for. They're just trying to make a living by flogging stuff which is why I just smile, nod and go and speak to someone more interesting. The kinesiologist floored me a bit though - she was adamant she would cure it in one session. I was intrigued and of course it was all a bit woo hoo and nothing whatsoever changed.

I totally agree that it would be good to alert other people to see a doc. I think I had it for a good couple of years before I went to the doctor when I could barely walk. I'd been having 'niggles' in my ankle/knee and right wrist, but wrote it off to reaching middle age. My ankle really should have been a red flag as I fell a number of times flat on my face without any warning. I now know better!

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I was lucky all those years ago as I had medical contacts & a German doctor friend suggested I saw a Rheumatology Professor she had been on a research project with.

So I marched back to the GP who had told me to"take an aspirin..you must expect aches & pains at your age" & asked nicely for a referral letter.

Within two weeks I was diagnosed......& the rest as they say is ( a very chequered) history. The professor referred me on to a rheumatologist who specialised in my type of RA ....& I remained with him for 10 years...& went from hobbling around to 7 good years on Mtx.

I am convinced my early diagnosis was really beneficial...... Early control obviously didn't get rid of it, but the drugs protected my joints & I have only needed minor CT surgery & foot neuromas which may or not be RA related.

Sadly these days waiting times are so lengthy on the NHS & the lack of rheumie consultants does not make it easy to get even a first appointment request from your GP, let alone a diagnosis.

TBH , I think GP's would benefit from more information being spread around....many have no idea about AI diseases,& they dither around when their patient needs urgent help....but then with no specialists around..............who will help them?

Hopefully more info from this new charity venture could help....if only they would stop just calling every ache & niggle "arthritis"!

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Take an aspirin, haha. Think that was a stock answer to all aches and pains.

There must be some GPs that do understand. One of the GPs at my surgery has Lupus as a special interest - they will generally have a couple of special interests. Perhaps RA isn't glamorous enough for most. My GP when I first saw her, almost immediately guessed what it was, did a blood test and called the registrar at the Norfolk and Norwich. She was fabulous.

I'm really lucky in Norfolk with the Rheumy department - Dr Gaffney is s**t hot and been a trailblazer for some years. He's not easy to work with, but as a patient he's a star. There are a number of specialist nurses at the hospital too - it's a huge department.

Like most health related issues, it's a post-code lottery unfortunately. Norwich is a fabulous place to live and it seems to attract staff to the area easily.

I'm allegedly working, but this thread is far more interesting :)

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Yes my day has consisted of emptying the wm, & playing with my new heated airer.....jeans dried in 4 hours......glad I chose it over a tumble dryer.

I was supposed to be decluttering cupboards today, but every time my iPad pings I take a break ....so not a lot has ended up in the charity bags.

My GP practice has 8 GPs, 4 of whom are young women who seem to be taking it in turns to go on maternity leave, so there are always at least two locums. Thankfully I usually only need to go to the surgery once a year for my prescription review.....& now that is done by a prescribing pharmacist I rarely see a GP, so I suppose I shouldn't be surprised, if when I I do go in they look at me blankly when I mention my RA treatment, because altho the diagnosis is there on their screen it means nothing to them..........in fact one locum a couple of years ago asked " Are you sure you have RA?" Frantically looking for a drug he recognised.....but on his drugs screen there were no RA drugs because I have infusions at the hospital ....& when I explained he said I looked too well to have had RA for many years. It may have been a compliment, but I'm living proof you aren't necessarily bent double with claw hands to be in pain ......& I would have hoped a GP would know that.

My rheumatologist here is very old school,I was referred to him by my London Rheumie when I found driving 21/2 hrs each way to see him was getting too tiring- they trained together in London, so I didn't have to go through much of an upheaval when I changed doctors....no 'new broom' syndrome....he read my notes & off we went.

Well it's pitch black here.....I'm sure ....all those years ago...when I came out of school at 4.30 & cycled home it wasn't this dark so early.

Or is my memory playing tricks on me?

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Completely agree. I binned mine. Their ignorance will lose them lots of money too.

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Like alot of you, I dislike my Disease being misinterpreted but why are folks so hung up about it? Has anyone been put at a disadvantage because of it? If we cared about what everyone else thinks, we would become very anxious. It's just not worth the energy and the general public won't really care anyway. I know and understand my illness and that's what matters. I know people with Osteoarthritis and it's a painful condition too BUT it IS very different from RA. I guess it's very similar to someone having COPD or pneumonia or emphysema. General public would say that person has lung problems. They will always likely say we have Arthritis. I have tried to educate some folks but most aren't interested. If an employer gets the wrong end of the stick then ask your GP to write a letter to inform the reality of this condition. I have minimal energy and won't waste it trying to convince people that Rheumatoid is worse/different than Osteoarthritis. If people downplay our condition then that's their ignorant problem. I was admittedly ignorant to the pain of Fibromyalgia. I thought initially it was just a name given to a patient who could not be diagnosed with anything but complained of pain. This forum has enough caring members to understand my condition and that satisfies me in my needs with this illness. To NRAS and the lovely people who keep this site shining I am very grateful. :) xxx

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I understand your reply Shalf and I wholeheartedly agree with you that I don’t have the energy to worry about what people think but if there is an organisation or charity that is representing ‘us’ then they do have a duty to represent correctly and differentiate between diseases etc. It’s very frustrating on a day to day basis when you feel that others think you either have a low pain threshold or a moaner and I try not to talk too much about the pain and discomfort as you can see people eyes glaze over. It is about educating others on not just RA/RD but many different illness and disease so that the signs can be recognised and we can all start questioning the medics, who at times, quite frankly have failed many people with wrong diagnosis or gone through the system making errors in care. Of course there are some wonderful people working in our NHS and I am grateful of that but in our times of Google and self diagnosis we all need to be educated. Things like Sepsis and even strokes are now recognised through advertising campaigns which is surely a good thing if it saves lives. Sarah xx

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Maybe HUGE banners and/or an advert on these huge screens now in most City centres might do the trick? Rheumatoid is NOT WEAR and TEAR! I agree with Norisa. It's the word 'Arthritis' that downplays our condition. That is very unfortunate. Some dude called AB GARROD in 1858 is to blame! If he was still around I'd wring his neck! Xx

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Think about it Shalf, if you struggled to work on Public transport every day with RA or any associated AI disease, but you had no obvious visible wonky swollen joints, you'd been up since 5am, trying to "get going" ,& by lunch time your back/arm/leg was on fire & you just couldn't stay at work....then it does make a difference,& I'm sure many are disadvantaged....even lose their job.

We don't live in our own little bubble, the reaction of work colleagues when you just have to have time off - but you look fine...is really stressful.....if they understood what RA is...surely that would take off a lot of pressure? Don't you think people become anxious & stressed, hence making any invisible Disease worse, having to cope with that?

We shouldn't have to make a special effort to explain ourselves.

If "someone" could make a serious effort to explain RA, & all its associated diseases, without frightening the general public to death, I really do think it would help people with all stages of RA.

I know from personal experience how people react with a completely different atttude when you have cancer....from which I was cured. But to this day they are still dismissive of my RA.

If only Versus as a new all singing all (trying to)!dancing charity could break new ground it might help a lot of people.

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I'll email them too. But I do think it's the word ' Arthritis' that's the problem. Words are powerful and seem to stick in people's heads. Maybe NRAS can do more?

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You explained my work life perfectly! Week 5 of being off sick and my boss said “well you look fine” - this is when he dropped my laptop off so I could continue to work!!!

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That is terrible sj......I can only hope you find a drug to suit you very soon. I would have been tempted to throw the laptop at him...but I know that would mean no job....but what a thoughtless Oik he is.

You jolly well get better, find another job & wave him byebye!

Thankfully I had just left full time work when I was diagnosed....there would have been have been no way I could have looked after anybody for the first few months. I couldn't even dress myself most days,

Take care.....I do hope your children are old enough to help you just a little bit....& that you do have some help in your house.

🌺🌺🌺

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Hmm. I see where you are coming from. However, re work, I felt your response was a tad 'casual'. The Gp my OH saw wouldn't have had any idea what to write to an employer. Clearly hadn't had the special online training!! (Nras leaflet for work is good but suggests you can often call in for bloods on the way to work. ??? If you are having them done at a Rheum Clinic the first year, it isn't open at 7am, not necessarily near where you work and an appt. is needed. Hospital appts re RA and assoc. stuff have averaged one a week in the last 10 months.)

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Right on Norisa...I think a start would be explaining to the admin/medics how real life works.

When I lived in SW London I could drive to my office on a Sunday in20 minutes. During the week it entailed 2 buses &2 tube trains each way. To " drop off" for anything was impossible!

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Some employers are understanding (polishing my halo here). Before I knew I had RA, I employed, and still do, a lady with Crohns, a carer, and another lady with polycystic ovaries. They are all amazing, rarely take any time off - in fact, probably less than others without any health issues.

I think it's the big corporate employers where it gets lost in translation somewhere and once one person starts finger-wagging, it ripples throughout the organisation as 'fact'. I hate office gossip and won't tolerate it at all. So much so, it's in our contract as a disciplinary to act as a deterrent.

I'm with you about Fibromyalgia - I didn't understand it at all until I learned from others on this forum. Perhaps having RA has made me a little more compassionate which is only a good thing.

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But it does seem the majority of treatment publicised by Versus is directed at OA.

I am certainly not inferring OA is any the less distressing than RA, but If you have a job & OA, there is hope that your joints can be fixed & you can get back to your job. i know people from 34 to 80+ who have had hip replacements who all regained most their life. Of course they all suffered great pain prior to surgery, but there is hope OA can be cured.....or at least made bearable. Although with the present nhs cuts in replacement surgery even that might not be the case now.

To me that is where the difference is. I've had RA for 20 years & I am one of the very lucky ones.....early diagnosis, good rheumatologists,& am now on RTX, & lead a good life (for an oldie) But from what I read on here I am the exception....& trying to work, look after family, & trying to get to see a rheumatologist more than once a year......particularly early on, with RA is so stressful, it makes the RA worse.

There must be a way of sympathetically explaining the difference ......to those both with chronic OA & RA surely that would help?

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Sorry to be a spanner in works here - but my first rheumatologist used to refer to RD as arthritis. When I quizzed him about this he explained that there are so many diseases that can come under this overall heading that we were far more likely to have an impact on the public if the umbrella term is used.

His point was that we are competing with Cancer, MS, Alzheimers, Cardiovascular Diseases, Diabetes, Parkinson’s, Strokes. Most people give because they personally know people affected by one or more of these.

Everyone will know someone affected by a type of arthritis whether it’s OA, RA, AS, PsA, Sjögren’s, Lupus, Vasculitis, Scleroderma etc etc. So if people here insist that their form is always distinguished for campaigning purposes - then where does this leave people with other more rare or different equally serious diseases which bring arthritis with them?

For instance having OA with haemophilia is very serious indeed. OA also needs to be viewed in context not just always referred to by people here as “my granny has that in their thumbs”. I know 4 people who have had to have high risk surgery for OA worsened by haemophilia. They need OA to be put on the map because their non clotting blood has seeped into their major joints causing and exacerbating severe OA. It’s not just autoimmune arthritis that is a serious problem needing a spotlight!

Otherwise Arthritis is going to continue to be low on the general public’s giving priorities and there will be less money for research overall. This isn’t in our interests is it?

It’s a known fact that people don’t really concentrate on any ad hard. And Cancer Research and Macmillan ads tend to lump cancer under one umbrella for purposes of fund raising so I guess this known to be a more expedient way of both raising awareness and generating research funding.

NRAS is here for those with autoimmune inflammatory arthritis eg RA, JiA, PsA etc, similarly BSSA exists for Sjögren’s, Lupus UK, Vasculitis UK and SRUK are small all charities promoting awareness for their respective disease groups.

Even rare diseases are grouped together now under one umbrella for purposes of awareness raising and it is explained that, under one heading, a GP will see someone with a rare disease each day, quite possibly without even knowing it.

Under one heading rare diseases are as common as diabetes.

So under the heading of autoimmune RD would be quite low as a priority - whereas it comes top on the list of MSDs (musculoskeletal disorders)

The one thing I do know is that most who get taken on by charities for campaigns such as this one usually have degrees in marketing and advertising. This includes modules on sociology and these people are therefore undoubtedly far cannier than I am about existing preconceptions and misconceptions and how to change or play on the public’s perceptions.

Many in this field are of the google analytica generation and have been well schooled in the ways and means of getting people to wake up and cough up. And ultimately this is what we ALL want people to do!

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Fair enough. If its about getting money for research rather than public awareness, there could maybe be a warning before the advert, ie 'look away now if ...' Then only the fit and able would watch it!

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Well I haven’t seen all the ads - but I’m guessing that they probably do help raise awareness about the fact that all forms of arthritis can potentially cause life changing and terribly debilitating symptoms. And I do think that’s the main thing, if not the only thing that matters. Raising funds is also incredibly important for those suffering from all forms of arthritis.

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We don't want to heal the world...just a simple explantation that RA & OA are different would, I'm sure, satisfy most of us ...whether we have either disease.

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We have to agree with many in regard to this campaign. It doesn't differentiate and is upsetting many around the country. We will continue to push messages which make it clear that RA is a serious systemic autoimmune condition which is different to OA.

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Thank you Ailsa. I'm sure Versus is full of good intentions, but until the difference is known - most members of the public will continue to wonder why there is so much fuss about granny's wonky finger joint!?

TBH Dr Andrew Jackson knows the difference...so why won't he clarify the situation to the public in general & let them decide for themselves if RA & OA need to be considered as they are ....horrid diseases.....but DIFFERENT?

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The point is the Charity know they are two different diseases, so why don't they explain which they are talking about?

After all it's not some terrible medical revelation needed to be kept from anybody!

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I think by adding that it is, as yet, incurable might help to prompt people that they are donating towards research to improve the situation might be useful?

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I guess using the word 'defy' for arthritis is trying to be like cancer being associated with fighting/ battling. I can'y say I like those words either.

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I had cancer & I was "determined" to beat it & I did, but defy? To me being defiant brings to mind stamping my foot saying " Shan't" & that is too stressful.

In January this year a relative was diagnosed with Grade 3 NHL.....& on telling me, with no prompting, her first words were "I am Determined " After a dreadful year of chemo & RT She had her last scan last week & itwas clear. Still a long way to go, but the first hurdle is over.

Of course if your cancer Is diagnosed too late all the determination in the world won't help.....but as you start the journey, being Determined can't hurt.

Of course RA can't be cured & is usually much more painful than cancers but being Determined to make the best effort surely might help...but I can't see how being Defiant could help.

But then I'm an old lady & might have missed something in the interpretation?

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To Defy: To challenge, prove something, resist openly, present insuperable obstacles to. Hmm

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Hmm too.......Those definitions really won't work with RA will they?

Challenge ? You can't challenge it, once diagnosed - you've got it.

Prove something ? It hurts more than you ever thought possible.

Resist openly? Cope, accept, treat, deal might eventually be better options

Present insuperable Obstacles? That is what RA does...be determined not to let it!

PollyAnna lives!

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To defy arthritis itself by improving awareness and treatments for all types, to defy misconceptions about who arthritis affects and how?

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Yes. I guess it depends on whether you see it as individual or collective. As an individual you can take your meds, manage diet, attend appts, exercise, look after mental health etc. but you haven't in my way of thinking defied it, rather managed it. Collectively, research could come up with meds without side effects or find a cure. My Dad died of cancer and my Mum was haunted by the idea that maybe he hadn't 'fought' hard enough. I would hate to imagine that people would think that those with serious RA hadn't defied enough.

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I agree. But the point is that this campaign is about defying collectively. And about defying misconceptions I believe.

Also, having come up against many preconceptions about Sjögren’s - including from people with RA as their main disease (in other way round and Sjögren’s is my main disease, with secondary RA) - and being presently left untreated despite very high systemic inflammation, very unwell indeed - I have no truck with this idea that Arthritis is just a disease affecting those with either OA or RD.

It’s a disease that’s as variable as the weather and all forms come in degrees of severity. OA may be the most common type and non systemic - but it usually affects all with systemic diseases so these kind of distinctions are probably counterproductive. And my disease barely gets a look in from any perspective.

AgedCrone - I don’t think my replies to your post are aimed at healing the world - just about supporting any campaign that sets out to educate the nation that Arthritis can and will affect us all one way or another and to a greater or lesser extent.

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I understand what you are saying. I know someone with a very rare auto immune disease. Unknown, not

researched, no support forums etc.

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Thanks - yes that’s where I’m coming from and yes I do get somewhat frustrated by posts that always seem to pit one form of arthritis against another.

In common with many in the general population I have mild OA plus a less common form of relapsing/ remitting RA. But these come as secondaries to a very systemic and very underestimated rheumatic disease that presents like MS and Parkinson’s.

So I support any high profile that seeks to raise awareness and funds for any of my symptoms at all - whether minor or major - it all helps a little. 😊

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That's right.........Bottom line we all have to deal with whatever is thrust upon us individually. Nobody can take your pain......they can sympathise & support, but the patient has to do the hard work. Carers also have the pain of watching a loved one suffer. I found that harder than coping myself.

The charity can use donations to fund research to find better drugs...and also explain why the drug you take for OA won't help my RA! Cos they are Different!

It's a pity your Mum felt that way. I bet everyone with cancer fights as hard as they can - in their own way- sometimes those who appear to blindly accept, are paddling like crazy below the waterline.

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Re my Dad it wasn't anything about what he did or didn't do but the constant media inference re fighting. I guess thats why I am so against that terminology. It works to get money, and works for some to think in those terms. Not all

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Where is its registered charity number or is it a company limited by degree ? i've seen glossy adds on tv but not impressed by blanket coverage with no charity status that can be checked on although i've not looked at company registration it does look a bit odd.

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I called their helpline.....an automaton voice told me three times someone would be with me shortly .....that someone never appeared.

Either everyone is throwing money at them or they're having a hard time explaining them selves.

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Well let’s just hope it’s the former then and not because people with RD keep phoning them to flag up RD. Goodness knows we need more research funding for the lesser known forms of inflammatory arthritis as well as for RD and OA.

See the usual folks on Goggle Box tonight all saying “ouch this is so awful - these poor people are all in agony? It’s so unfair - poor things!” responding to the VERSUS” campaign with appropriately appalled expressions and empathetic grimaces.

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I left the phone on recall...their RCN is given as 207711.

Look on versusarthritis.org........ lots of film clips etc

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Interestingly a doctor from my surgery rang me on Monday and asked if I'd go in one afternoon next week to talk to a group of 2nd year medical students and explain what RA is, what it's like living with it and how it first presents, so they can spot it more quickly.

I don't know what triggered this, but I'm glad they called because I see it as an opportunity to get our message across to tomorrow's GPs, so that new patients don't have to go through what some of us did before getting a final diagnosis.

It would also indicate that my surgery probably hasn't signed up for the Core Skills training programme that Versus offers (I wonder if they have to pay for it?).

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Wow. fantastic opportunity!

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Hello AgedCrone ,

I really dislike the tone and gimmicky story telling element of this advertising campaign. They seem to imply that knowledge makes us strong but then tell us virtually nothing about "arthritis" except that it is painful? Perhaps I am missing the point? But I don't get it?

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They also seem to live in some parallel universe where you just "pop in" to see a rheumatologist at your leisure !

I wonder if they have done any investigations throughout UK as to the average wait to get your first appointment with a Consultant Rheumatologist, or how often you get to see one once you are diagnosed?

That is what patients need to know.Then the general public need to be educated as to the real disruption any AI disease causes ......that OA & RA & all the associated diseases can be just as life threatening as cancers.

No you aren't the only one who doesn't get it...I think the whole of this community is somewhat bemused at their apparent naïveté!

Maybe they will cobble together an online "course" for all AI disease sufferers, so that we can log in& not bother our GP's , because they are on line learning about Core Skills.

Sorry to go off on a rant....but it just seems senseless doesn't it, or maybe we are just learning what really goes on in the realms of "Charriddee"?

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yep i've signed off too- dislike their dramatic uninformed tv ads soooo much. xx

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I think I said this before, but it sounds to me as if their is some commercial involvement?

I just heard on the radio that the British Diabetic Assn has signed up,with Britvic! Hello......I thought they produced sweet sugary drinks?

Are the BDA trying to add to their membership?

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yup - weve been here b4 ... when versus started up.. won't support them!!

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Precisely! It seems to be wealthy but not v well informed

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I really can’t see how spending huge amounts on ads is going to fund research. I think we need to be super aware of new organisations promising the earth - Brexit- US involvement in NHS. Be canny.

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The trouble is..this charity was formed by combining two well respected charities .... and doesn’t seem to be carrying on their good works....& won’t offer any explanations except banalities.

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This needs investigation. I’m glad other people are puzzled by this. There’s also a new diabetes organisation with quite a high advertising profile but little content except for a diet/ lifestyle which makes extravagant promises and hints like ‘we’re not yet available across the nhs’ which suggests respectability. Expect more if uk markets are opened up.

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I have emails from versus Arthritis recently and read their information. I thought the same didn’t mention RA so I deleted them and unsubscribed as felt not helpful at all

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It is such a shame this merger took place

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Who are the respected charities you mention? I’ve steered clear of them all since I discovered who is the patron of nras.

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Who is that?

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Teresa May is one of them 🙄

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Teresa May

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But patrons on the whole just add their name or open something to get publicity.

The people responsible for the aims of the charity are the ones who sanction these awful.videos !

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