Private specialist recommendation?

[Puckster01]

I’m not sure if this is allowed? I’m looking for a private Lupus specialist in the Gloucestershire / Wales area. Is there anyone that can be recommended? Despite positive ANA & ANCA my gp says she won’t refer me because other tests were ok and I saw one a few years ago that diagnosed fibromyalgia. Most frustrating.

[Lupusgemini]

Dr Julian Nash specializes in Lupus and runs clinics from Spire Cardiff.

[eescvc]

If you are able to get to Bath, Dr Ellie Korendowych works at a few private providers. I see her via the NHS and she is incredibly attentive, and compassionate.

[Puckster01 in reply to eescvc]

Thankyou!

[Poshcards in reply to eescvc]

Hi, she is my consultant too, she is brilliant, more like a dear friend x

[Tiggywoos]

I saw dr nash a few years ago and he was brilliant.. but I’m only telling you this because of my experience…he explained I needed to be monitored locally and he couldn’t do that as I am in Somerset and he is in wales. He wrote to my local hospital and they ignored him and I got seen 2 years later . I recently saw another private rheummy due to ongoing issues .. only down the road but different county.. he said same thing . In a nut shell I think private will diagnose but it’s tricky with prescribing medication. I hope that helps x

[Puckster01 in reply to Tiggywoos]

Sounds like it’s him I need to see, I’m currently with nhs wales so fingers crossed he might be able to suggest my doctor refer me to him. Thankyou!

[Tiggywoos in reply to Puckster01]

Ooh that would be perfect . He’s very straight to the point but the nurse said he leaves no stone un turned and looks outside the box . Good luck 🤞

[Puckster01 in reply to Tiggywoos]

That’s what I need! A medical sleuth! 🤣

[Tiggywoos]

I need a wizard 🧙 🤦‍♀️! Saw one in Glastonbury but lost my nerve to go and talk to him 😂. We have to laugh don’t we x

[Puckster01 in reply to Tiggywoos]

Ha ha! 🤣

[StriatedCaracara]

Think also your GP needs educating. Possibly though they have no confidence in the referral system.

(Blood tests don't tell the whole story. There are so many markers they have not found. Current tests only consider a few, and they go up and down.)

I had to go private for diagnosis but my GP knew I needed treatment - local NHS failed me.

Hope things turn around quickly.

[Puckster01 in reply to StriatedCaracara]

Yes, you’re absolutely right and I think that’s the case with my gp, no confidence in the referral system.

[Dawnydawns]

HelloI saw Dr Nash last April and he was lovely..he diagnosed me with UCTD ...started me on meds, but GP not happy as no plan for her, so she doesn't know what to do regards follow up test or medication..I've been waiting to see NHS rheumatology for a year...so I can have some continuity of care ( I can't afford to cont with private..I only did a one off so I could start treatment as I didn't want to get worse whilst waiting g for NHS)...good luck xx

[Puckster01 in reply to Dawnydawns]

Well it’s a positive to get a diagnosis. Is your doctor not continuing with meds then? Did the meds help you? I’d only be able to afford a one off too. I’m hoping that I’ll be able to take my test results to show him and see what his thoughts are. Did he order more tests for you privately?

[Dawnydawns in reply to Puckster01]

Yes Def good to get a diagnosis...I've just stayed on the same meds ..not changed since I saw Dr Nash...no other tests since..and they have helped..he ran a urine test whilst I was there..had to pay for his prescriptions..even though we get them for free in Wales..so GP prescribing..but she doesn't k ow anything about Lupus or UCTD...just hoping for NHS appointment soon 😊

[Puckster01 in reply to Dawnydawns]

I’m currently with gp in monmouth so I’m still within the Welsh nhs so was hoping that seeing him would make it easier but from what you say it doesn’t sound quite as easy as that. I think it’s tricky wherever you live! Glad the meds have helped!

[Dawnydawns]

It's worth doing it ..just to get some answers and get on treatment..but make sure your GP will also refer you to NHS so you can get on the system...I was on urgent list to see NHS rheumatology last Feb and told then waiting list was 6 months, when I rang in November to see where I was on the list they told me another 6-8 months waiting so was debating going back to Dr Nash...but I have just an appointment for Friday...hooray..so hopefully we will see what they have to say..I think it has been worth it to be able to start treatment and get some answers

[Tiggywoos in reply to Dawnydawns]

So pleased you’ve got an appointment and I hope it goes well x

[Puckster01 in reply to Dawnydawns]

That’s great that you’ve got an appointment!

I was diagnosed by rheumatology with fibromyalgia about 6 years ago, had a weak positive Anca then but they decided it wasn’t worth looking into. Having chatted on a fibes group there seems to be a new directive in the nhs that gps won’t refer anyone with fibes back to rheumatology. So the only avenue is private to get diagnosed if you suspect it’s something else.