Is Professor Hughes out to make money ?

[staceylou]

I mean we have to pay to see him and pay for information about APS. He clearly isn't like by other APS specialists and does not give out much information to other doctors. I believe he could be doing much more to help!

[panda60]

Prof Hughes no longer does NHS appointments as he is retired from the NHS and does private consultations only, in common with most consultants.

I have come across many arrogant doctors in my life but Prof Hughes is not one of them. Personally I have a lot to thank him for.

[bernieembleton]

I could not agree more. He is a lovely person, and thought of very highly.

[Hidden]

I'm sorry Staceylou but I would have to disagree. The Professor has helped many doctors to understand this condition all over the world and when I first saw himself he offered to invite my GP to attend one of his GP APS awareness days. He does a tremendous amount for his patients and saved countless lives in the process. London Bridge Hospital are a business with a duty to operate responsibly, therefore as a now private doctor I am sure there are a number of costs associated with running a clinic from that site. I am happy to pay for the Professor's expertise and knowledge because without it my life would be so different and I would find it difficult to function. He is a caring, respectful, knowledgeable and supportive individual who should be knighted!

[MaryF Administrator]

Hi, I am not quite sure about your angle regarding the professor. At an age when most would have resorted to pipe and slippers, having been retired from the NHS many years back, he has ever since, worked flat out at London Bridge, and when not there is flying all over world giving lectures or training GP's etc. I think you must have got your wires crossed. His fees are at the lower end of the scale rather than most in private practice. Mary F

[Wittycjt in reply to MaryF]

Do you know if he is lecturing anytime soon in the US and/or does he have an information page for US physicians?

[Tiggercat]

Living in New Zealand I had some questions about my husband's Catastrophic APS and directed them to KateH who passed the question on to Prof Hughes. He was good enough to reply personally, even though he did not have to. Not many specialists in private practice (if any) would do that to someone who is never likely to be a patient.

All kudos to him for that. As a world renowned specialist, he could have gone into private practice many years ago, but he stayed within reach of as many patients as he could for as long as he could.

[Hidden]

Hi,

Like others on here, I'm unsure why you feel negative towards Prof. Hughes. Have you been fortunate enough to ever see him? Also like most people on here, I have had dreadful experiences with "care" under the NHS, that almost cost me my life. As a result, I had to move all of my medical care to private doctors (I even have a private GP) and pay for all of my medications on private prescriptions (in excess of £15000 per year and yes, you did read that correctly!) I have not only APS but also SLE, CKD, Arthritis and Sjogren's among several other things. At age 26, this is likely to be my situation for many years to come. The irony being that I also pay Tax/NI towards a "service" that provides me with nothing and is in fact detrimental to my health!

The Professor was my last hope of ANY chance of survival and I was quite honestly thrilled to find he practised privately, as, had he still been NHS, I would have had next to no chance of seeing him, as I live in Liverpool. This would be the case for probably most of his current patients. The six month wait to see him was worth EVERY minute, EVERY inconvenience and EVERY penny spent in doing so. I know this is the case for a lot of people and am sure many will agree. Not only because he is an exceptional, knowledgeable doctor, but also an extremely personable and intuitive person. This is a combination that, in my experience most doctors with the NHS lack, as in the simplest of terms, they don't need to be! I have seen many doctors privately over the years and can honestly say that The Professor is not only without a doubt the very best but also the cheapest. Bearing in mind also that he based in the most expensive part of the country and that, as another poster has already mentioned, London Bridge Hospital is a business. Private doctors have to pay the hospitals they practise at for the facilities, the admin, insurance, the overheads etc and speaking as a businesswoman myself, I would hazard a guess that The Professor picks up no more and most likely less of a wage than he did within his NHS work. Having seen him on many occasions and having done my research on him not only as a doctor, but as man, I can honestly say that I genuinely believe he continues to practise not for financial reward at all, but for the love of his patients and the belief in what he does. This man has a wife, children and grandchildren and travels from his home in Kent to London Bridge to run his clinic. I can also say that he has tried many times on my behalf to battle with the NHS to provide the care/medications I require, without me having to pay for them privately, and had total understanding of my situation from the moment I became his patient. Additionally, I would also echo the comments of others on this board, in relation to the work The Professor does in educating, speaking and supporting other doctors and hospitals, clinics and centres worldwide.

I hope that if you haven't had the pleasure of a consultation with The Professor and your health requires that you need to, that you one day experience the good fortune of doing so.

Wishing you future health and happiness.

[panda60 in reply to Hidden]

Sorry you've had bad experiences with the NHS but I don"t think it's entirely fair to be so derogatory. I have an excellent service from my GP and use both private and NHS conultants. I have had both good and bad experiences with both, in fact the worst being in a private hospital! We are so lucky in this country as I found a few weeks ago when I developed an eye problem while on holiday and had top class service.

[Lure2]

I have him and his work to thank for my Life. Warfarin took away my neurological symtoms. I live in Sweden and here I have no one to talk to that has this illness.

I came across Hughes Syndrome Foundation in 2011 or perhaps earlier. I bought some books from the Foundation and there at page 55 I understood that I had to start warfarin like some of the doctors at my hospital suggested .I have bought 6 books and the Prof is the main character.

In Sweden today only around 5 doctors know APS well. The illness is not at the list of rare reumatic diseases.

This summer my Rheumatologist told me that Prof Graham Hughes had given lectures here at the Karolinska Sjukhuset in Stockholm. And she told me that he had talked about the symtoms I have.

For me If someone is near God; it is him!

Bless him

Kerstin

[Kernow]

The above comments say it all and I agree with them all. He certainly gave me a better life and is one of the nicest specialists I have come across. Either you had a really bad day when you wrote your comment, which I sympathise with and understand, or could you be thinking of someone else? In either case I hope you are reassured with all these glowing testimonials that Prof Hughes is one and a million and long may he consult!

[Manofmendip]

I totally agree with the replies that others have already given you, Staceylou.

I have my life to owe to Prof Hughes and I think your comments are unfortunate and ill informed.

Prof Hughes is a very caring, patient centred Dr who has devoted a considerable part of his life to helping those of us who are unfortunate to suffer from APS.

As others have said he has retired long ago from the NHS and sees patients privately, for which he has to charge a fee.

Dave

[SueLovett]

I hope that Prof. Hughes does get financially rewarded for dedicating his life to helping patients with this serious life threatening condition.

He has worked tirelessly on behalf of others and for that matter so has my own Consultant who works alongside him.

We live in a sad society where so called celebrities become millionaires over night for being foul mouthed, brash and ignorant but because they win some pathetic reality show they are rewarded way beyond any form of intelligence.

I don't begrudge one penny that goes to someone who cares so much for others.

xx

[Christin]

Dr. Hughes is the kindest and most caring doctor I have ever met. We owe him a lot.

[silemoran]

This Doctor is dedicated to giving his time and life to people suffering from A P S and is a truly lovely caring human being always has time to talk and listen . Sile .

[Hidden]

I'm intrigued by your comment that you have to "pay for information on APS". I presume you are not talking about the HSF charity in this statement?

If you are, I would politely point out that ALL the information on our incredibly well research and newly published (2013) website: hughes-syndrome.org is completely free, including a series of 25 factsheets you can download. You are also encouraged to sign up for free enews updates which are sent regularly to anyone, anywhere, with email.

This new website information covers more than anything previously published on APS in the UK, and we were able to compile it thanks to funding we applied for (and won) from the National Lottery. This meant we could deliver up-to-date and accurate information to all patients who could get online.

We also set up this online community, for free, to help APS patients learn and assist one another. All these projects took time and resources ...so please can you clarify exactly what you mean when you say people have to pay for information?

[stillwaiting]

He is a man in a million and I just wish there were more doctors like him.

I hope he never sees this post but then again it looks like everyone is backing him up anyway so I guess he'll know how respected he really is.

Lynn.

[Hidden in reply to stillwaiting]

Don't worry Lynn - he won't, he's far too busy being a clinician and lecturer to have time for blogs. He's working tomorrow holding a GP conference about Ten Topics in Rheumatology which includes APS - we just got the new GP leaflets printed and delivered in time, good job as there are over 350 GPs attending. All helps to spread the word and it's not bad for a 73 year old is it?

[bernieembleton in reply to Hidden]

Thats brilliant. He is an exceptional person. Not sure if any from my surgery are attending, as they have just recruited two new GP's, but the word should be spread to Bridlington, East Yorkshire.

[tim47]

Like others here I am rather shocked that you might ask such a question and I have been trying to figure out why. I can only conclude that for some reason your expectations about how the system works is unrealistic for some reason but I hope we can help. Prof Hughes worked for the NHS when he could have done all private practice. If you were to see him you would know how much he cares about the NHS and is disappointed at some of what is happening. He used to take time out (not sure if he still does) to spend a few weeks as a relief GP to keep in touch- I don't know many top consultants who keep grounded like that. I see him privately and out if my own pocket. He does not try and rack up the bill by me having tests done at the London Hospital but lets me get them done by my GP. He travels the world sharing his knowledge with anyone who will listen- but many do not want to.

As been said, he could be at home enjoying his family and hobbies and having nothing to do with medicine but he chooses not to. I don't think for one second that his interests are anything other than the well-being of patients.

II hope that you will soon see that he is largely responsible for the advances in diagnosis and treatment of those of us with Hughes.

S He has never been expected to read theses posts and dispense advice online, that isn't a practical option for any doctor.

[Jade]

I couldn't believe my eyes when I saw this thread. In fact I swore.

Of all the Drs in the NHS and private why on earth would you choose to write such a post about Professor Hughes.

There are some horrible Drs in the NHS and private but our lovely professor is not one of them. I have never ever met such a lovely kind caring compassionate man. And I don't begrudge him one single penny.

He is not after money at all. I am not insured so self funding, when he knew that he said he would do the least amount of blood tests possible to save me money and asked my GP to do some to save me money. He also referred my son to a colleague in the NHS for MRI and bloods to save him money as he is self funding too.

We are very lucky he has chosen to continue working in a private capacity instead of retiring, without him many of us would lost. I don't think I will ever find a doctor like him and dread the day he retires.

We do not pay for APS information, it is available on the NHS website, Professor Hughes gives out leaflets at London Bridge he gave me one in April. He will take phone calls, he will ring with blood results to save a return visit, he will reply to emails, write to our GPs with choices of further treatments.

As for other specialists, I believe jealousy comes into play because he is a Professor and has a condition named after him

in his lifetime, oh and a bust of him in the lupus unit. I don't understand these other specialists as their oath is do no harm and yet they want us to wait to have a possibly catastrophic event before treating us. That is wrong on every level.

If you feel like this about the nicest chap I've met in medical practice heaven help you when you have to see all the other specialists in this field your experience is unlikely to be good.

[Hidden]

Do I smell a troll? I can't imagine anyone thinking this way and would like you to actually to give specifics about your issues, experiences and thoughts on this.

To give you some perspective. I am from the USA. Met Prof Hughes at a conference in Texas he came to a few years ago. Since then he has graciously supplied me with great information and direct contact to get proper treatment here and elsewhere.

He is 74 years old. YES... and still travelling the world and speaking and educating everyone he can worldwide on APS/Hughes. Every time I have been in London I have had a meeting with him, he buys me lunch, gives me tours and passes on the latest information, etc including his wonderful books that he has published, journal articles, research, etc. I can't express my gratitude towards this man more.

Furthermore, he and Kate have been very instrumental in our small charity in the USA, offering boundless free support, information, ideas and more working very closely with us to get the word on APS out. We even worked together and shared a booth at the 2011 EULAR conference in London! I wouldn't have been able to do it without their wonderful support!

Has Prof Hughes ever asked for a cent? Not one penny!!

So thank you Kate and Prof Hughes for all you do. I know its a thankless job at times but sheesh... this is just insane!

[Hidden in reply to Hidden]

Thanks Kristina - I think you're right about smelling a troll - a bit of a random question I think!

FYI - do you remember the lovely Mette Toft from Denmark who helped us out on the stand at the EULAR conference? Well, she's won the Stene Prize EULAR award for her essay on living with long term conditions (including APS), and has kindly agreed to talk about it at our Patients' Day next year. I was so chuffed for her ... and us.

BTW - if the 'troll' is interested - no, the HSF charity is not funding ANY of the speakers who give their time and expertise at our Patients' Day ... including Prof Hughes, Hunt or Rahman ... thankfully, we manage through their goodwill

[Hidden]

PS basically in a nutshell Prof Hughes (and others) have dedicated their lives to APS and he is still at it even though he most likely has the means to live very comfortably without the headaches and stress of continuous research, travel, etc... He certainly doesn't need the money and I am certain he has dedicated and donated an awful lot to the cause as well.

[marycath]

Medical problems all my life, with 3 strokes since I was 37, and my research led me to Kate and Hazel in 2007 on their websites where I knew I had to get to London somehow to see Professor Hughes. It took till 2010 as some of you know, moving through dozens of Australian doctors and symptoms in my families until one here knew APS and gave me the referral to London Bridge. Professor Hughes gave positive diagnosis for APS, suggested I email him if needed, and even communicate with my Australian doctor , and told him I wanted to write about APS for Australia? Because one stroke in 2003 caused doctors here to give misdiagnosis dramatically altering my life, the Professor gave me the address of a Sydney doctor who might be able to help. Our websites and the Foundation give us all hope, especially if families are affected, just as my daughter suddenly needed a head operation 3 weeks ago (just like I had at 37) and I could tell the surgeon about my d/x of APS. She is recovering well.

[MaryF Administrator]

I think you have the wrong end of the stick, he carries on working having been retired at retirement age from the NHS as is the norm, I owe my good care in the NHS, quite frankly as it has been guided by his excellent care. He carries on as there is such a gap in decent care and service for our condition!, MaryF