Prof Graham Huges

[JJKANE]

Hi I have had an email from prof Graham Huges of the London lupus centre saying he would like to see me ... Does anyone know how much it costs to see him or does he see patients on NHS ?

[MaryF]

Hi there, he retired from the NHS many years ago, and now works at London Bridge, he is very very good. The tests cost a bit and if you ring his secretary they will go through tests with you and costs. I see him twice a year, and no longer pay for tests, I take my local tests with me. It is around £200 for the appointment, the tests are in addition to that, but some take their most recent tests with them, however I did one set there for myself and my daughter. Mary F x

[JJKANE]

Thank you so much for this . Great help !

Keep well

JJ

[lennox]

He was the one who told me I had lupus at st toms hospital london 13 years ago , I don't mean to sound rude but what are you paying for? Is it a dignoses ? I think its a disgrace to have to pay to be told u have lupus, can u not just ask ur gp to ref you to guys and st Thomas London for free

[uzi41]

Would you go you him if you found that the meds you were taking were not working.

[SarahHeney]

Hes the best. What has prompted this request?

[JJKANE]

I live in Somerset , prof Hughes as replied to my letter as I have been ill for many years and even from my email he said it was lupus , but it's a cost issue as being ill for so long be end lack of money . My GP is great and is trying to raise funding on MHS for me ... Is there a way I can see prof Huges through NHS as I was told he had retired ?

[LynnyJ]

Can you get a referral to the Louise Coote Lupus Unit @ St Thomas' Hospital in London? There are several fabulous consultants there, many of whom I've seen over the 14 years since my diagnosis and all have been incredible. I think there is also a way you can claim travel costs, though having never done this, not quite sure of the criteria/process for doing so. Maybe see if your GP can refer you there rather than have to pay costly private fees. Good luck x

[JJKANE in reply to LynnyJ]

Thank you so much ;0) sounds hopeful !

[Lesley-chard]

Hi I wasn't happy at my hospital and I asked my GP to refer me to st Thomas. It was the best move I've ever made they've been brilliant you'll be really well looked after there

Lesley

[Danielle2419]

I agree what most is saying St Thomas' lupus unit are brilliant and you will get the best treatment for whats right for you they look after there patients so well apart from being quite a busy place some times its the perfect place to go as that's where I got my diagnosis

[bam1993]

Either I was just very unlucky....or perhaps I did not get the right Doc at St.Thomas'? but I had been ill for years, was told it was Fibro-just kept getting worse and worse, every time I had an cold/upset tummy or any sort of bug, I would flare up and not be able to get out of bed-got my G.P to refer me to St.Thomas' to get advice on Fibro-was then seen at the Lupus clinic and although I was seen about 4 times in all-I was discharged from around 2009-2011-the Dr actually sent a letter to my G.P saying 'this lady seems to be getting worse' but he thought it was just 'Fibro'. and that he was discharging me!.....in the end I was in a continual flare-nearly lost my job!!! Finally got refered to my local hospital Chace Farm - Dr.Persey-and was finally diagnosed in Feb this year, I have double stranded DNA? and had pneumonia in 2006 surely a sign that it was Lupus? At last I am now getting a bit of a life back-now on meds and hopefully on the mend. So I have to speak as I find and I personally was not very impressed with the Doc that I saw at St.Thomas'

[bluebell99]

Hi

When I went to my first proper appointment after diagnosis the very nice rheumy said he didn't know much about lupus and we could learn together!

I went back to my gp and he sent a referral to St Thomas, where I was given a thorough examination and confirmation of my diagnosis. As the distance and inconvenience, as well as cost of transport was quite a bit, my local rheumy was happy to see me on a regular basis and agreed to work with St Thomas so I could cut the visits to once a year.

I have since moved house and live near to a large general hospital where there is a lupus unit and indeed one of the Consultants trained at St Thomas under Dr Hughes so I have now cut loose from them and all my appointments are now local.

Once you have seen Dr Hughes you should be able to be treated on the NHS either at St Thomas or your local hospital. You may need to check the local rheumy is proficient in treating lupus first!

[JJKANE]

Thank you for this information ....much appreciated

Stay well

JJ