Anyone any idea of the waiting times to see a Rheumatologist in Scotland (Lothian area)?

[Chancery]

Hi, I have been put on the waiting list to see a rheumatologist, for suspected psoriatic arthritis, but it's been almost two months and still no word of an appointment time. Anyone any idea how long they are currently waiting here in Scotland? I'm in Edinburgh. I'm tired of being sore and breathless, and frankly worried that it's 'disabling' me as we speak. I'm also getting patches of rash (I think I have inverse psoriasis; I've never had psoriasis) springing up everywhere. I've got a new spot on/in my navel. Any info most gratefully received....

[AuroraB]

You can see the Lothian waiting times here

apps.nhslothian.scot/refhel...

From that it looks like around 25 weeks is the current wait for rheumatology out patients.

Am sure that's not what you want to hear.

[Chancery in reply to AuroraB]

Many thanks for that, Aurora. On the letter they sent they gave a website address for the waiting times and it's a dead link - how NHS is that? Despite several attempts to find something concrete myself I could only find bureaucratic waffle and no specifics, so I very much appreciate that. Thanks again.

[Hidden in reply to Chancery]

Waiting times are getting longer and longer in Scotland due to the severe shortage of rheumatologists nationally. So they avoid committing to a set waiting time frame now and it’s just the luck of the draw. I think RA first referrals waiting times are a bit stricter due to NRAS campaigning and the idea that most damage is done earlier on in the disease. I’m not sure if this applies to PsA too though? I’ve been under rheumatology in several areas of Scotland (not Lothian though) now for 8 years.

Having initially been diagnosed with RA I was rediagnosed in 2016 with Sjögren’s and the connective tissue disease doctor has tried to discharge me back to a completely flagging primary care service. I’m now being referred for an internal second opinion by dermatology - who suspect I may have PsA and limited scleroderma overlapping my confirmed Sjögren’s. I see my NHS Tayside rheumatologist for only the 3rd time in 3 and half years on Tuesday and, like you, I suspect inverse psoriasis and have new little itchy patches arriving along with newly pitted nails and RA type hands.

Meanwhile you could phone rheumatology in your local hospital - Western General? And ask for their new referral waiting times or if they have a cancellation list perhaps? In my experience phoning for info and to find out when they received your GP referral is best.

[Chancery in reply to Hidden]

Thanks, Twitchy. Since writing the original post, I stumbled across Dermatomyositis, simply by putting my 3 worst symptoms (fatigue, muscle pain, rashes) into Google and it popped up as the third entry (along with a load of Lupus entries). I'd never heard of it before but the rash pattern really fits my rashes and, for me, the rashes are the distinctive bit. After all, who doesn't moan about joint and muscle pain? But it is a super rare condition and I'm not sure just how much muscle weakness I have. I have some, because I struggle climbing hills, bus stairs, stairs in general, but my arms feel fine, although my hands have started to hurt and I can't get lids off to save my life. But, you know, a six month wait, what will I have to show him/her? The condition can go into remission, like most autoimmune (type) conditions so when my appt finally rolls round will I be all healthy? (I wish!) Or at least will I look sufficiently okay that he will just pack me off, disbelieved yet again?

One of the very worst things about being older (61) and female is disbelieving you is the default position. You've really got to offer something concrete or it's all neuroses and hysteria. My rashes are the closest thing to concrete I've had in years, but of course, they are never perfect template diagnoses. Our bodies don't read the textbooks about how they should look with a condtion!

I really struggle just to do the ordinary stuff (due to breathlessness and back pain) and I shouldn't feel this bad at 61, especially as I spent my entire life quite active, walking everywhere, every day. Walking now is always a chore, never a pleasure, but try conveying all this in fifteen minutes with an already sceptical rheumatologist.

Okay, moan over. I just wish the NHS, or maybe doctors in general, took feeling really 'wrong' in yourself much more seriously. And six months to see someone with the first clue what the condition even IS? Oh please....

[Chancery in reply to Hidden]

Sorry, meant to say I've had Sjogren's and Lupus on my list many times too (I've been struggling with these issues since my 50s, possibly my 40s) but I don't have the Malar Rash (mine goes round my eyes, not across my nose; that's why I was so excited - how tragic - by the Myositis rash which looks like mine) and they don't quite fit. The Myositis has been the best fit of anything I've seen in years, but who knows? Might just be yet another dead end....

[Hidden in reply to Chancery]

That does seem a long time away if you’re sure. Have you phoned?

Re Dermomyosites I wonder if your GP could help things along for you by testing your ENA panel to include Myositis antibodies perhaps? As well as positive ANA I had one equivocal specific antibody for limited systemic Scleroderma. Not sure why but so far it’s being ignored. If anything shows positive then you would be better paced to be seen sooner maybe?

[Chancery in reply to Hidden]

Yes, that's what I was wondering, if I could move things along a bit, but I don't know what GPs can and can't test. I suppose I could go along with the tests they use for Myositis conditions and ask if they can do any of them now. My ANA was tested very recently but it was negative. Unfortunately a negative ANA test doesn't prove you HAVEN'T got it. It was ever thus...

[Hidden in reply to Chancery]

I know that this sounds tough but you really have to be a proactive and demanding patient with GPs about checking your more specific ENA antibodies because these are probably expensive and they won’t want to run them.

I hate having to fight my corner as I definitely suffer from imposter syndrome and feel so awkward - but I’ve learned the hard way that it’s the only way!!

My first GP practice were asked to run the ENA panel by my rheumatologist so I am fairly sure they can if pushed to. But I also suggest you phone rheumatology and ask about the time wait - particularly if you say that the link they gave has died.

Otherwise, if you can afford to, perhaps you could get these done privately?

[Chancery in reply to Hidden]

Can you tell me what the ENA tests are? I've never heard of those.

[dtalbert in reply to Chancery]

I believe ENA test are to test the blood.

[dtalbert]

It seems like the wait time is long anywhere that you are. I am in the US and have waited as long as 3 months. It's worth the wait if the doctor is good. I have had PsA for over 35 years and psoriasis for 55 years. I hope you get the appointment soon and some relief.

[Nuttyshirlz]

Hiya hun I’m in Scotland but I am in uk and I waited about 4 months for mine. Think it’s just a waiting game. I was told just to keep talking regular over counter painkillers off my Gp. Hopefully you won’t have much longer to wait.

[Chancery in reply to Nuttyshirlz]

Hope I'm lucky enough to get 4 months, but I doubt it! Did you mean to write you're NOT in Scotland? It's quite startling how different the countries' NHS can be.