Hello all
After speaking to NRAS helpline the other day I decided it would be wise to shop around for the most relevant private consultant and have just changed from the first one I booked. However, I was told that I didn't need to be referred by my GP - is that right? I thought it was a legal requirement?
Most private consultants let you refer yourself - especially if you are self funding.
To add to this, it’s helpful if you email them any letters and test results you have - ahead of your appointment.
From what I know of your journey, it sounds like you need a rheumatologist who specialises in complex cases and enjoys getting to the bottom of medical puzzles!
Hope you can find the right one. But honestly, I would say any second opinion is welcome right now 😂 Keep us posted! x
Hi L - yes you're right. As I have a lot of neck and sacroiliac involvement I thought I would look for someone with experience of that and was convinced I wouldn't find anyone but I did. The consultant I have just cancelled specialises in gout.Because of Raynaud's I have often wondered, as did my GP initially that scleroderma is a possibility but even if that is the case, apart from the Raynaud's and GERD/silent reflux thing I am not impacted by that and so I haven't pursued the offer of further investigations.
Also, I had never really looked in any detail into PsA and Ankylosing Spondylitis. I've had a rough idea but beyond spine involvement had no idea that quite a lot of my symptoms tick AS boxes including the way pain in joints has presented itself. I've also always had problems with my back and it started in childhood and was really bad for a few years when I was a teenager. first it was the coccyx and sitting was difficult (accused of being fidgety) then as a teen I started to get the tight and aching ribcage at night which, and I can't really understand why, I just ignored. I put it down to 'sleeping funny'.
I'm hopeless at writing things down and I think I've mentioned before that pain is sooo bad when it's bad that when it passes, a bit like childbirth, one forgets very quickly. But I seem to remember that fairly recently I had a problem with not being able to sit because of the whole of my sacroliliac area being extremely painful. I think it might have been that that got me my second rheumatology appointment.
I'm very worried about my spine. Not much else, shoulder is bad and elbows but I'm not firghtened by it, if you know what I mean? It's the spine that really scares me.
Ah, glad you found someone. Any involvement of the spine is worrying - totally get that. If you would like any help writing your "story" into a quick A4 summary, drop me a line. I'm a journalist by trade so am used to filtering all sorts of info 
Fingers crossed that this new consultant will be a game changer for you x
You can refer yourself to a private consultant, but if your GP refers you they will provide a cover note and summary of any investigations undertaken so far, which you may or may not want. Good luck.
It’s only a requirement if you are using private insurance and they insist on it. Otherwise you can self refer. I always ask the go for a print off for any blood tests I’ve had done and take that with me .good luck ! X
Yes that is correct ..... you can make a self referral to a Private Consultant.... most will ask how you are paying, so it might help if your GP did write an explanatory letter together with any test results. Going in cold with just you giving your history could become very expensive...blood tests alone can be in the hundreds.Do ask the Consultant’s Secretary to give you an estimate of charges...unfortunately it doesn’t stop at the £2/300 initial consultancy fee.
But it is well worth the expense to get sorted .
Yes I self referred
No you can self refer to a consultant and they will advise the GP of the consultation just like an NHS one. In fact if you see one they may even see you on the NHS just be aware though that prescriptions are not on the NHS system so may cost more or as in the case of some medications less. I took my cheque book to pay for one to discover it cost £7.00 privately. and you can get more than a months meds too which does help.
Good luck Brychni. I hope you get some joy with him/her.🤞xx
brilliant news, I've been thinking about you and was going to search to see if I'd missed any updates, do you have a date yet? let us all know how you get on x
Hi G - yes going to Cardiff on 7th April. x a day out! Woo hoo 😏🤣
How to get a referral?
Immunologist referral
Rheumatology referral 
Finally got referral to rheumatologist 
Referral appointment
