London Lupus Centre

Has anyone ever paid for private treatment at the London Lupus Centre? I am really considering going private because I am sick of getting prescribed an abundance of different STRONG meds that I dont think I need and I dont think they help my condition. I would be interested to know anyone's experience of private treatment v. NHS?

Thanks

G

10 Replies

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  • I do agree with what you are saying. Unfortunately I cannot afford to go privately otherwise I would. I have read the London Lupus Centre book. I have given up with my current NHS rheumy as I found him rude and dismissive. He ended up making me cry as he said he wasn't sympathetic and didn't I want to get better. He was very arrogant in the way in which he spoke to me. This was all down to my reservation about adding methotrexate to my list of drugs.I wanted to wait to see how I was without adding another drug. I have now been referred to another NHS hospital that has a dedicated lupus clinic-waiting for the appointment. I have in the past gone privately for other problems and have found it much better. If you can afford to go I would say it is worth a try. If you do let us know how you get on.

  • Hi,

    I've booked for the london lupus centre but as I want to see prof hughes there's quite a long wait for an appt. I contacted them in february but my appt isn't until august! Hopefully it will be worth the wait. You have to have 2 appts. The cost they have given me is £300 for each of the consultations and £350 for the blood tests. Money well spent I guess if your concerned or need reassurance. Good luck on whatever you decide x x

  • hello

    i agree with heathrx i too phoned to see how much it would cost for a private consultation at the lupus centre and was told that it would cost me £300 for every visit to see the consultation which i decided that that was such a hugh amount of money because i know that with lupus you need regular tests and treatments which are all extra so came to the conclusion that it was just too far expensive for me.

  • ESP gertie!...I was going to ask the same Q about private v nhs too. I've been waiting to see a rhuemy for ages and live in northern isles, so asked my gp about speeding things up as i've only been seen by a general consultant thus far who diagnosed polymyalgia and put me on 40mg steroids June last year. She suggested bmihealthcare.co.uk/consult... . Dr Youssef is in Aberdeen (both private and nhs) and have been told it is £150-250 a private session, which can be booked in a week. I'm hoping that he will pull together all of the info gathered to date and make sense of it, as it's the co-ordination of info from specialist such as gynie, eye and dermatologist that needs to be considered as well as full history of health. My intention is to revert to nhs again once i get his opinion on the matter. Has anyone had dealings with Dr Youssef? ;-)

  • Hi, I used to live in Caithness and travelled to Inverness to see a Rheumatologist but he wasn't very sympathetic and I didn't get on with him at all. Since moving to North West England I elected to be referred to Wrightington Hospital in Wigan, my consultant is brilliant and we discuss medication and treatment together, on my last visit he wanted to add something to my meds but I wasn't too sure so we discussed it and agreed to leave it for now with a view to visiting it again if necessary. You can elect to go to any hospital you want - providing you can get there of course! My husband saw a osteo consultant at Wrightington when we were in Caithness and we thought it was worth the drive down twice a year to get a good standard of treatment. I have been seeing a respiratory consultant, with breathing complications, in my local hospital but what a useless man - I saw my GP last week and have asked to be referred to a different hospital, one I've chosen myself from reading reviews on the internet and I'll have a drive down the M6 for my appointments again but what the heck if I can get better treatment. Good luck in getting to see your chosen consultant. x

  • I was at the London Lupus Centre and paid for by my medical insurance. However, after a while they refused to cover me, so I now see the same Doctor but at St. Thomas' hospital. He said that I was better off transferring to St. Thomas' as they have a lot more resources at their command. I do not see the Doctor as often, but when I have had a problem of any kind it has been dealt with very quickly.

    I must admit I did prefer the Lupus Centre, for it's better surroundings and efficient staff, but would also recommend St. Thomas'.

  • Hi there, I decided to go to the London Lupus Centre, i had to have blood tests (i found out that if your gp agrees then he can organise those on NHS then send results through to the london clinic) my GP refused so had to pay for all tests which overall came to just under £1000....the advice i received was that the treatment i was receiving was adequate, so no further action required.

    It was an expensive way to seek advice and find that i would still not be able to

    be taken on as a patient even though i see nobody other than my gp.

    So good start but disappointing finish.

    Good luck if you do decide to try, as i am sure everyone is different and you never know x

  • Hi Gertie, I was in a similar situation to you and getting nowhere with my local rheumy so decided to pay to see Dr Gordon at London Lupus Centre. I was charged £200 for consultation and an extra £50 ish because he gave me a steroid injection immediately because I was in a lot of pain. I took copies of all the blood tests I had already had done at my GP so did not have to pay for these at the Centre. I did not have medical insurance and paid for the consultation and injection myself but Dr Gordon wrote to my GP and asked them to refer me to his NHS clinic at Kings College which I now attend every 3-4 months. I could not really afford to pay privately but I was desperate to be seen and get some treatment and I now feel that this was the best £200 I have ever spent!

  • I had gone round in circles for 10 yrs or so with nhs with no diagnosis then we paid for private insurance and i saw the right rhemy with research and got a diagnosis, mixed connective tissue disease lupus like. I go every 6 months to London Lupus center at london bridge and they are always on time if i have any questions they ring me back and they recently helped with a letter for surport when i went to tribunal for ESA. I know at some point my insurance will turn round andnot pay because its cronic (long term) bloody cheek when they take more money from me a year than it costs them but thats how it goes and at that point i will go back to paying ourself or go nhs. If you can afford it they do a urine test each visit and give you test results when you see the doctor and they have been brillant with me i would go private everytime if i can because i dont think there is enough nhs to go round and i am lucky so i think its fair i have had health probs since i was a kid so i think i have had my share of the nhs. Good luck

  • if you go to this clinic and they think you have a bad enough case of lupus will they then cover the cost or will you still have to pay for further treatment , my sister is suffering so bad at the moment and we are thinking of sending her private , over the last 2 days she is complaining of electric shocks rippling through her body and has lost taste senses in her mouth

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