Where Next?

[LLH76]

I had my Rheumatology appointment at The Royal Free Hospital today, I’m not going to name and shame or go in to detail but I think I need to be referred somewhere else, St George’s or St Thomas’s? Who would you recommend, I wish I had the money to go private, but I don’t, so these two seem to be the best options, not formally diagnosed but two years down the line I’m still looking for answers, on hydroxychloroquine need a Rheumatology dept that is more Lupus sensitive?

[Lisalou19]

Hello LLH76,

Sorry to read about your experience. I can relate to you so much on this, honestly the tests I’ve had done are ridiculous and totally unnecessary in my eyes. Regardless I have so many things now ticked off my box, that it can’t be!!!

I recently waited 7 months for a nhs appointment, I was so positive and from

It I got a referral for photosensitive testing 🙄. Again I will go, just as I have everything else including mental health assessment.

I did post on here for recommendations to see a specialist. Last week I ended up in the office of Professor DCruz at the London Bridge hospital . It cost £230. He did more in 40 minutes than any other doctor. His a specialist in lupus and vasculitis.

His now writing to my doctor to ask for them to refer me to him under the nhs. He suspects Lupus after checking the appearance of my skin on my legs, and conducting a eye test which showed I had extremely dry eyes.

I would definitely recommend this route. X

[LLH76 in reply to Lisalou19]

Hi Lisalou19

Thanks for that, Dr Cruz is well know in the Lupus world, I think he’s at St Thomas’s and Dr Kaul is at St George’s.

I may have to go down the private route initially like you have, just feeling so fed up, waited 9 months for that appointment yesterday and an extra 2 hours just to see my consultant personally rather than one of his team.

[Lisalou19 in reply to LLH76]

Honestly my story is the same

You wait so long with a positive mind set, just to sit In front of someone who scratches their head.

I think you generally need to be seen by someone who specialises in these types of diseases . He does run a clinic at guys on the nhs. He honestly was really passionate and listened to every I had to say. I took photos, a diary , timeline of symptoms and copy of blood tests from my doctors. He paid an interest into all of it x

[Melba1]

Oh so sorry you had a bad appointment, very upsetting and frustrating when you need answers. I have been under royal free for years and only had one bad experience . Other than that they’ve been amazing so you might just have got one who doesn’t get lupus? Where do you live? You can ask for a referral somewhere else but on the NHS it takes time to start a new one to a new hospital and you need answers more quickly I expect.

The other way to get a quicker appointment with a more experienced consultant at Royal Free is to write politely but firmly saying you weren’t happy with the appointment, don’t feel your questions were answered, list your symptoms and ask to discuss with someone else? I did that with a neurologist last year, wrote to say I disagreed with his diagnosis and why I thought he was wrong. I thought he’d be upset or cross but he wrote back saying it is a tricky disease, he’d spoken to his colleague who specialised in the neuro form of lupus and booked me an appointment with them. Ok they weren’t great either 🙄😂 but I have a great rheumy at Royal Free and that’s what you need too.

I’ll message you xx

[LLH76 in reply to Melba1]

Hi Melba1

Unfortunately it was the main consultant I saw yesterday, I saw one of his team on my last appointment and left in tears so after waiting 9 months (they postponed my 6 month check up) I insisted on seeing him.

He says he needs to go away and think about my case, my gut feeling is they are not as sensitive to all other Lupus criteria if it’s not a straight forward positive bloods case, hence I think I need to go elsewhere.