I was diagnosed with Lupus in 2019. It has been a constant and ongoing battle to get my lupus under control. I am considering whether to receive care from The London Lupus & Rheumatology Centre (private health care)
My lupus continues to be active although, I am exercising regular (as much as possible), taking my medication and now dealing with Bilateral Avascular Necrosis. I had a right hip injection in December 2020. I did have a little more mobility in the first few weeks. Recently, my mobility has decreased. I am currently doing physiotherapy which has been struggle.
I am not sure what else I can do. So maybe seeking help from The London Lupus & Rheumatology Centre. The prices are insane. A new patient consultation is £240 and follow-up consultation is £215. Other tests could be £700 and upwards. Or should I continue with the NHS care or get another opinion?
If anyone has any personal experiences with them, I would love to hear about it: the good, bad and the ugly. I am not sure what else I need to be doing.
Stay safe everyone!!!
Written by
SLE-Warrior
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Hi,I’m sorry to hear you are struggling. I was diagnosed with Lupus in 2016 and as a nurse wanted to ensure I had as much information and knowledge about the condition as possible and indeed wanted to make sure I was getting the correct care. My local hospital has been fantastic but I asked my GP to refer me to the Louise Coote Lupus unit at Guys and St Thomas’ hospital. It’s the leading Lupus unit in Europe. You are entitled to ask to be referred under the ‘choose and book’ method (this means you are entitled to choose to get advice from any hospital of your choice through the NHS at no cost. I would recommend you try it and see that they say. When I went they confirmed to me that my care and treatment I was receiving was indeed correct. Good luck and I hope you start feeling a bit better very soon 😊
Is this at London Bridge . I have just sent a message to someone on the site. You check Consultants see if they are with NHS as well. Phone Private secretary say you are self funding, yes you may pay up to £200 but then ask if you can go on their NHS list usually they put you up their list
Yeah, it is. I actually emailed to get a better understanding what they do. It is a private healthcare clinic which specializes in rheumatology conditions. The prices are extremely ridiculous, and it is definitely out of my price range. I am currently not working, so it is out of the question. Sometimes, I think I could be doing more in order to get to the remission stage.
Hi SLEwarrior. I went to the London Lupus centre in 2019 in desperation when struggling to get a diagnosis. It was the best £220 I have ever spent. The appointment was almost an hour long and the very kind consultant actually listened and read through all my letters and documents and did a thorough exam. I brought all my own blood test results and letters from previous consultations so didn't have to pay for many other tests on the day, and was given the option of whether I wanted to do those tests or not. I didn't have to go for the follow up appointment as I live a long way from London and he didn't want me to have that extra expense. He provided a suggested treatment plan for me to bring home to my GP. So for me it was worth it and got me on the road to treatment at a local rheumatology centre. As a one off it was worth its weight in gold. However as a longer term treatment option it would be very expensive. I think others have been able to attend there and be moved to the consultants NHS practice if living in the right area. Wishing you luck. S
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Lupus center London Bridge
Journey to the London Lupus Clinic
The difference between my local rheumy and the centre of excellence
