Hi folks!
has anyone here ever seen Prof.G.Hughes ? After years of crap service from NHS i decided i wanted to see him... Then my was able to when I got given some money, so made an appointment!
I think it will be very important visit. He seems nice..
Was fed up with docs being rude on nhs. Who else has had crap service on nhs?
xFF
I think I blogged about this recently.It seem's Lupus is not recognised as a desease.I am a pensioner but,there may come the day when I will be INTEROGATED.They seem to give Lupus sufferers a very hard time.I have found most GP's don't themselves know a lot about Lupus and the reumatologist are so over-run with patient's, it is hard to feel that you are getting appropriate treatment.Good luck.
Thanks! Yes, the nhs is bonkers busy!!! But with a lack of cohesion in treating people. Never see the same consultant, bits missing from files, rude doctors with attitude problem.....waste of time....etc..
So Prof Hughes is worth every penny, and i hope this helps me advance my life.
hi could you tell me how much you paid to see dr hughes i am desperate to find out if i have lupus have fibro . did send a letter and photos of what was going on but havent heard a word yet was thinking about borrowing the money from my mum to go see him private nhs and gp have given up on me thanks
I've not seen him myself but I have googled him, he knows what he's talking about. Let us know how you get on
best wishes Trace
Hi everyone,
I would be interested to know how you get on. I used to be seen at the Lupus unit at St Thomas' just after he left annoyingly! but asked to be referred more locally as the journey to and from was really hard for me. However, I am now wishing I hadn't moved in a way as my new rheumatologist is not very nice at all.
Went for an appointment last month with a list of things I wanted to talk about (not easy for me as I really lack confidence) and he couldn't have been much less dismissive. Left the appointment really depressed and fed up.
I am in the position of having an annoying diagnosis in that I am diagnosed as Undifferentiated Connective Tissue Disease (query Lupus!) and am being pharmaceutically treated as though I have Lupus - Hydroxy and prednisolone. I also have fibromyalgia and am being treated for an irregular heartbeat. It feels like when I see him that I am not an interesting enough case for him to pay me any attention or maybe that is just my take on it.
Anyway, sorry I have blathered on rather! I hope you have a really useful appointment with Prof Hughes, he has a really good reputation.
Best Wishes
I have seen Prof Hughes and he diagnosed me 7 years ago and I love him for it... at St Thomas's... I had tests etc, and it was the best day to be told I had this, but not if you know what I mean!!. I carried on going there for several years but the traveling got to much so I go to Brighton now as thats where I live and its easier and "Prof Davis is now my god !!"....
Make sure you have a list of all ailments, even if small ones, (these are relevent) including illness/operations/births etc.. and dates (years) and anything else you can think of. Have questions you may want to ask as well. Make the most of your appointment, because when your there you will forget?? Believe me!! Take a pad and pen and write anything down you don't understand so you can look it up or he will explain and you will forget!! lol !! Hope this helps. She xx
Prof is one of the most informed in Lupus and i have heard speak at our Lupus National Conference and he has written a few books.
Go prepared make the most of your appointment.
let us know how you got on.
There is not a lot of understanding in the Lupus world,read what you can ask Lupus U/K for a fact sheets, Join if you can as the more you learn the better you can manage your Lupus,and this site is great as you have like minded people
Happy Christmas
Janx
I do have to defend the NHS; my rheumatologist is great, extremely thorough and never talks down to me. My GPs are very helpful and kind, although not necessarily knowledgeable and my little local hospital is accessible, modern, friendly and easy to park.
I do think anyone with lupus would jump at the chance to have an appointment with Prof Hughes!
Happy Christmas! x
a friend saw him a couple of years ago and he was very helpful.
im very happy with my nhs service and my GP is brillaint!!!
I saw him over 2yrs ago, he was great I had a list as long as my arm of complaints and he listened to me and just said you have got lupus turns out its with connective tissue disease because I have Marfan Sydrome aswell. I had been searching for 10yrs plus for an answer that I was either slowly going mad or I was imagining things.
I now go and see Dr D'Crus at London Bridge hospital every 6months, they are lovely it is private which is luckly my husband gets it with his work but I am waiting for the insurance company to say they wont pay anymore as its chronic long term. Life is never simple.
So if Prof Hughes cant help he might know who you should see because they all go to the same conferences together so have your list and maybe put that as last question so you dont forget to ask. Good luck hope it all works out.
Hello!
The appointment went wonderfully!!
Prof.Hughes is ace! What a nice person too!
He told me I also have Sjorgrens!
It's such a nice Hosptial too!!
I see him again in January!
I know not everyone is horrible in the NHS, just that I gave it a chance for 20 years, and nothing but dismissive nonsense!
Wow....I am trying to choose my words carefully here so as not to place my foot in my mouth! I am new here, and an American. I don't fully understand your healthcare system, but I guess my question is this: if you have been diagnosed with Lupus, why don't you get to go to a rheumatologist? If you have to see a GP, why don't you see the same one each time? How it works here is this: I have private insurance through our business which costs about (US) $500.00/ mo. On top of that, beginning each January 1, we have a $5,000.00 deductible per year. I was just diagnosed in July after a CBC brought up a very low platelet count to my dermatolgist's attention (in May). It was a very quick diagnosis and I am lucky to have gotten great docs. I first found a GP who sent me to a hematologist who sent me to a rheumatologist who I now see monthly. (in addition to a pain ,management doc who treats my spine injury). In addition to my dermatologist who treats my squamous cell carcinoma. THIS IS NO LONGER FUNNY!!! I must've been a very, very bad girl in a past life to have this crapstorm come down on me!! (I can't imagine it was worth it) oops....the fog again....doctors, insurance..How does it work? I don't need a referral or anything like that, I just go. But, boy, do I pay!!!
Btw, the lupusuk.org website is FAR superior to the US lupus websites.
Merry Christmas, y'all!
Hi Julie!
In the UK:
The tax/"national insurance" is deducted from people's pay- wages by the government. ALl this tax is supposed to go back into funding the NHS "National Health Service", whom anyone is (supposedly) meant to be able to use for free, wether they are working, ill, or homeless, etc...
It has its good points and bad pionts...
If you break your leg or something, you can get sorted out for free, even if you are unemployed, in reasonable conditions.
The problem lies with long term hard to diagnose conditions, and major operations, like waiting lists for transplants. Also staff quality, nurses overworked. Higene etc...
OR: you can get Private health insurance here too, but its slightly different than the USA, with many different packages.
Some people get on OK with the NHS.
I gave it many chances before having to just give up with it as I was getting nowhere, with rude consultants in rhuemetology depts, impolite staff, lost tests, etc....
In the UK, one has to be reffered by a GP doctor to hospital specialists. And it may take several tries to find a decent GP who treats you ok.
I went private to The London Bridge Hospital Prof G.Hughes and paid myself. I wish I had got private insurance years ago, as it would have paid his fees full, and tests...
But I got the opportunity as my uncle passed away, left some money, and i decided no1 i had to use it to see Prof.Hughes to advance my life.
Glad I did!
x 
Thank you so much for your excellent explanation! Believe me, we have plenty of crap docs over here, too! I have seen lots of them and until recently "hated doctors". I have had to change my tune, however, since May when it became clear that something was wrong and my dermatologist got the ball rolling that ended up with this stinkin lupus diagnosis. But, I ended up with a fantastic hematologist and rheumatologist (both women-does that have anything to do with it you think?) I still don't have a GP but who needs that when you see a pain mgmt and rheumy each once a month? A cosmic joke played on me, one who "hates doctors"!!
And after my experience at London Bridge Hospital, I decided, if i ever had babies, I would go private, and never give birth on an nhs ward, i was so impressed with the high standard!
Hi
The NHS is a bit of a lottery and the staff are a bit of a mixed bag. In the past 8 years I have had 3 consultants, one was awful and two were OK. I am with an OK one at the moment. I do not expect the NHS to be at my beck and call but for 15 minutes every 6 months at least I can have my say- keep a diary and take a summary with you. I am very very fortunate to have a GP who specialises in rhummy and finds auto immume disorders " fascinating" so any flares etc I can ring my GP surgery for advice.
Take care out there!
Davina
I saw Prof Hughes on the 22nd Dec and he was brilliant he listened! he told me I have Hughes and Seronegative Arthropathy. On the 28th I had to go in for a minor bladder procedure, What a nightmare!!!. The Pre op care was second to none, however the aftercare once I was on the ward was diabolical. I am home now and have just made another appointment to see David D'Cruz who was recommended to me by Prof Hughes for treatment and then the Prof himself in May to make sure I have been treated correctly. The man is a star
I've not seen Prof Hughes himself in years now but I get looked after by his team and Dr D'Cruz. They are a great clinic and I'm sure you will get much better treatment from them.
I have just realised that I am posting on a pretty old post. How did it go?
It was fantastic! He was so helpful and great!
Hi
Im assuming that this is the chap at Brighton Royal Sussex Hospital? As no-one has ever looked after my Lupus since i was diagnosed on March 2000 i asked my renal consultant for a referral to someone and Prof Hughes was who i saw. He was a lovely man but i felt very unhappy to receive a letter back to say i had unremarkable Lupus. I don't feel that losing my kidneys to Lupus and having a transplant or being at risk of losing my eyes to Scleritis is what i'd term as unremarkable. I'm still not being looked after by a Lupus specialist and have blood tests when i remember to ask for a check on the Lupus side of things. Hope it all works out better for you and good luck.
H Manda,
Prof Hughes left the NHS in 2006 and is now only private.
What you need to do is get your GP to refere to you St Tomas hospital London - Dr D'cruz Rheumatolog/ the Louise Coote. Clinic.
Many people have to travel to this hosital one has to be very very outspoken to get themselves the care they need in the NHS system.
Thanks Faeryfey
I need more understanding how how this Lupus thing works as i'm always 'negative' and 'in normal range' so why do i get Lupus symptoms even though i'm on 2 lots of immune suppressants, one for my kidney transplant and one for the eye thing??? Know how the NHS works as i have the pleasure of working for them lol and being of a fiesty nature i do get things done regarding my health! I'm going through a complete meltdown/wipeout stage at the moment having had an enormous amount of bad luck, illness and stress. Can't wait to be feeling better as this sucks big style. Hope you're feeling well at the moment Faeryfey? I will speak to my renal consultant about the referral you suggest as this is usually my way of obtaining referrals and not through my GP. Hopefully i can secure an appointment outside of my working hours as i've been off sick enough recently.
MandaM
What a great Doctor & lovely man Prof Graham Hughes is. I used to see him in the early eighties at Hammersmith hospital. He sorted me out a few years after I was diagnosed with Lupus here in South Wales. I've since gone on to have kidney failure & transplant sixteen years ago. Still having loads of problems along the way. I can only say that all my Consultants I see at University of Wales Hospital Cardiff are second to none.
Dear tremarel, 16 years post transplant and with Lupus too! I'm almost 6 years post transplant so you've given me hope. I'm on Tacrolimus, Mycophenalate and 5mg of Prednisolone and am hoping that this will keep the Lupus away from 'munching' at my wonderful gift from a friend. Apart from a recent raging infection in my transplant (my fault for not drinking enough apparently!) my transplant is working as for a normal persons with brilliant blood results each test. The thing is i'm sure that i felt better before as i now seem to be so tired and feel odd at times. Are you having any Lupus symptoms since being on transplant meds? My renal team are fantastic but i'm not looked after for Lupus by anyone, i just ask for Lupus bloods to be done occasionally at transplant clinic which are always 'Normal' whatever that's supposed to mean?
Arh that's great, so hope you have many years with your wonderful gift too!
Not sure if all the things i've had are lupus related or side effects of all the drugs I've had to take from a young age.
I was diagnosed with few other conditions along the way. Firstly is was Neuromyotonia which causes hyperactivity of the nerves which then fire at the muscles & they go into spasm. Apparently unknown to me they do say if you've got one auto immune disease it's quite likely to aquire another 
Fibromyalgia is quite common with lupus patients too ! I've had this a number of years & is so painful. Every part of my body hurts. Some days it's worse than others. The other problem I have is immune ddefficiency. I was getting lot's of infections & was permenantely on antibiotics & after having tests they found I wasn't making the antibodies to fight anything so I now do infusions every week of tens of thousands of other peoples antibodies & since then everything seemed to calm down well I do still get infections but not as often. At the moment I am in pain with my hips.After having scans they said I have buirsitis which is imflamation of the hip joints so I am finding it difficult walking.
As you said you don't feel on top form after a transplant but it is better than dialising isn't it. It's not a cure after all it's still just a treatment !
A lot of the transplant drugs can cause problems that's why you need to be checked regular.
I so hope you stay well & your kidney transplant serves you well
All the best
Hi folks!
ive put an update new blog about the results of seeing Prof Hughes!
lupusuk.healthunlocked.com/...
Hi all has anyone had clinical diagnosis on symptoms alone .My bloods seem ok but been told my symptoms are Lupus just been put on hydroxychloroquine ,????confused .com
I have seen dr hughes hes very knowledgeable I waited nearly a year for appointment hes very busy,he diagnosed me with hughes syndrome(sticky blood) its about two hundred to see him but worth it he really listens to you,but its the blood tests he has to do that is expensive it costs £600 for the tests I had! So if I was you I would go get loads of blood tests done privately elsewhere as its cheaper and take them with you.The blood expense is not Dr Hughes fault but they are necessary
Went to Manchester to see the Prof on Wednesday... 
can anyone help, im back on the steroids again as not been right for months just dontl like them. is anyone on them
No blood tests from now on apparently, says my GP practice
Am I ever going to get a full picture 🤦🏼♀️
18 weeks pregnant and so down are things just going to get worse?
