Hi all, for those who have taken the private route, can you tell me firstly is payment required on making the appointment over the telephone or is it made upon seeing the Dr? I'm just trying to determine if I could just ring now and make an appointment then pay when I see the Dr, as finances are tight at present so this would give me time to have the required funds. Also does anyone have a rough idea of fees and such for appointment and bloods etc?
Thank you everyone x
Hi hon,
Last time I went private I paid on the day.
I think it depends on who you're seeing but I paid £150 to see a specialist about 5 years ago. I think it's still similar amount. Bloods I'm not sure of, I took copies of tests that gp provided,
Sure others will be able to help too.
Take care gentle hugs love Sheena xxxx 
You may need a referral letter from your doctor - some consultants are self- referral and others are not. Fees vary and are sometimes more for an initial consultation because you are there for longer. Some consultants will put you onto their NHS waiting lists if they know you are self- paying. Best thing is to call the hospital you decide on to ask. Blood tests are unfortunately a different matter. If you need a lot done then they will be horrendously expensive. Hopefully your GP will organise them on the NHS.
Thank you both, I'm off to GP tomorrow so we will see from there, don't understand why the rheumatologist hasn't twigged on my igm igg results....I do worry that the rheumatologist will see it as me going over her heads by asking for referral to St Thomas' but I'm sure there's something not right x
Hi, I agree with the £200 mentioned above, I did one set of tests which came in around £350, now I take NHS test results along. MaryF x
Thank you, sitting waiting in GP surgery right now...fingers crossed.
Hi jp83
I paid £200 to see Prof Hughes at the London Lupus Centre last year, I think they sent me an invoice after the consultation.
I get him to write to my GP with the bloods that he suggests are needed and then have those done on the NHS, otherwise the bloods can be very expensive sometimes.
Best wishes.
Dave
Thank you......just been to see GP, lovely guy and wants to write to Rheumatologist to see if they can look any deeper. Will see how that goes, think I'm going to ring for a private appointment anyway and get the ball rolling....thought rheumatologists specialised in APS??!! Any idea of waiting times for Dr Hughes/khamashta?...
I think its absolutely disgraceful that we should have to pay privately to get treatment or a diagnosis for Lupus. I have been treated for SLE and my subsequent renal problems at Hammersmith Hospital in London for 20yrs+ on the NHS and have had THE best treatment I could wish for. They have been there for me every step of the way - not because I have a big bank balance, but because they genuinely care, despite recent cuts in funding.
I'm glad you have had a great level of care Kate. I have to say I have been let down by the nhs a couple of times with other things but my current gp is lovely. However I do feel they are often tied or dictated by red tape and Ticky boxes....and if you don't tick the lot you are likely to have to do your own research and ultimately fork out. I do wonder though..hypothetically ..if I get a negative result off the nhs rheumatologist and then subsequently a positive from Dr Hughes privately....would I have grounds for claiming those costs back from somewhere due to nhs missing it initially ..?...
I've been quoted £220 for my first appointment with Dr Khamashta incase that helps anyone xx
Hi hon,
That's great news, see if you can get copies of any recent blood tests to take with you, plus a list of symptoms, old and new! I hear Dr Kamashta is very thorough and listens, so I'm sure it'le be well worth the cost.
He was a speaker at the Hughes Patients Forum 2012 in London, he's very knowledgeable and seemed like a really nice guy.
Wishing you luck n better days hon.
Take care gentle hugs love Sheena xxxx
I feel like a slight fraud Sheena if I'm honest hin, I'm not ill, I go about my everyday life very well compared to a lot of people on here, I don't feel particularly unwell.....I just think that having a clot in your eye isn't normal, have been told it's very rare....I have only suffered one early miscarriage, which I accepted, these things happen I guess, but it did take from October to April of the following year for the pregnancy to be completely 'dispersed' for want of a better word which caused me massive stress. I do have hypothyroidism and mild raynauds, my mother has graves, and my short term memory is really non existent. I have blamed my thyroid for memory and brain fog in the past though. But I have to be honest I wouldn't say I was unwell.....so I'm lucky. They may say there is absolutely nothing wrong with me....I sense there is though xx
Hi hon,
Firstly you're not a fraud, there's clearly something going on, so a very wise move to go get checked out, a few others here I know of have thyroid problems, other autoimmune conditions and raynauds. So many of these conditions have symptoms in common, it's hard to know which of the beasties is responsible, many docs don't know, 
but we are all trying to raise awareness, so hopefully in the future the road to diagnosis and correct treatment won't be so hard to travel.
You've come to the right place for support and we will try to answer any questions if we can.
Take care gentle hugs love Sheena xxxx
Thank you Sheena, I do hope I'm not just a raving loony haha. I expect a lit of people feel like this when it's the unknown...it drives you crazy....thankyou all for your kind words and support xx
Hi, Best way forward; ring the Drs' secretary (the private sec if you know it or ring his NHS one who should be able to help). Phone them and ask them how much it will be. If he works out of a private hospital or clinic- phone them and explain you want to find out the fees. They will be able to connect you to the appropriate department.
I took my daughter to one in London (always a little more expensive) and it cost £350 two years ago. But it is cheaper outside London.
Good luck! I am sorry that you have had to make the decision to take the private route like so many of us! Says a lot about the NHS and their appointment system.
Kind regards
Jane
end of my tether
Severe Pain caused by the damage and clots I had because of APS
Aps and pregnancy. Please help!
