I am going to start off by saying please do not get the wrong impression about what I'm going to say. That may sound cryptic but all will hopefully become clearer with what I am about to say.
I have been reading and replying to the posts on this forum for a while now and one thing strikes me. When someone has a problem or asks where to be referred to the answer that always comes back is St Thomas' or London Bridge. Time after time people have posted and they may be in the UK or not but the reply has been - get referred to St Thomas'. Now don't get me wrong these are excellent clinics with some of the top people in APS but, and it is a big but, that when ever anyone in the world posts a cry for help it always comes back get referred to St Thomas'. Please do not get me wrong, I'm not degrading the standard of care at all as that is excellent but I am questioning why there seem to be only one place in the whole world that is worth being referred to. Surely we should be encouraging and supporting new and enthusiastic doctors and clinics as well across the UK.
What I am trying to say, all be it somewhat ineptly, is we need more clinics and centres like Tommies. It is just not possible for the hardworking doctors at Tommies to pick up and properly follow and treat all their patient these days and that is the existing ones not any including new patients. So, rather than referring everyone to Tommies I think we should try and support new APS clinics elsewhere in the UK. As I have said this isn't a criticism of the service they provide at Tommies at all but overloading a department isn't going to help anyone and this needs to be a national educational issue.
I fully appreciate the need for expert option but I think we need to look further afield and help to develop centres across the UK so that the focus can be taken off London a bit and regional centres of excellence can be set up. Again, please don't get me wrong as I think St T's are doing a fantastic job and it is my own personal thoughts but I think we should be pushing for regional centres so that we don't only have the option of directing people to London.
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Why stop at the U.K. - This is a world wide problem we deal with.this is a point well taken BUT if we go that route lets keep going __ thats my thoughts-- jet
I have found some great Docs in Madison, Wisconsin, USA! I have always felt like this is a UK support group and hoped one day to visit St. Thomas for the best Doctors and care. I will never be able to get to the UK, but I feel I have the answers I need in hopes to live a long healthy life.
Yes I fully understand what you are saying, we are currently on a drive to try and educate the UK and beyond. However the cogs seem to turn slowly, on a personal level, I have tried locally and also to download and pass on relevant information and papers. However the medical profession does at times seem slow to wish to be educated, and even questions and dismisses such information, more needs to be done and fast, thanks for the post. MaryF x
I think we should all try local doctors first and if they don't know about APS we educate them and then ask for a referral to London. By just going straight to St Thomas' or London Bridge we are not really helping to promote awareness as much as we could. We are also running the risk of other doctors thinking that APS is some made up St Thomas' disease which is something I have already come across with 2 A&E doctors in the southeast. They think that it is a condition that is made up to give the doctors at St Thomas' a career boost (that is what one A&E doctor told me when I explained I had APS and was under the care of St T's!).
Yes I understand your point. However I lived in London for years and had normal care. However here where I live until recently, I was accused of making up illness about myself and my children, and it was only escaping to London privately and then with NHS referrals that made things ok. Hopefully this dire state of affairs will change shortly. On a local level thanks to my continuous drive all medics involved in my care have read many papers, are linked together for discussion for my children, (daughter left with APS and Lupus for a long time), despite up to 12 funny turns a day... This is all improving but only down to my own persistent efforts. X
I too understand your point, like Mary my local experience myself has been appalling!! That includes 2 hospitals and 2 gp practices. Since moving to this area, gp's practice is better well the nurses are great and interested in learning anyway.
I as others im sure, recommend St Thomas's because having tried others and had no joy in getting them to listen or do anything and having been treated like dirt, got to Tommies and they listened!!!!
If anyone knows of other units around the world that do have an interest in Aps and other autoimmune conditions please let us know, would be great to give alternatives.
As awareness does grows of Aps etc we're going to need other centres of excellence!!!
I recently have been made aware of a specialist closer to home through this site. I am hoping my gp will refer me as I could do with more local follow up!
Will let you know how I get on! Her name Dr Sue Pavord in Leicester, have googled her and looks promising!!!
I couldn't agree more! Yes, they are good clinics as is St Mary's Recurrent Pregnancy Unit and University College Hospital but we do need to start having regional experts. This is one of the most common questions I am asked at the charity.
Our condition will never be listed on Dr Fosters so we have to rely on patient-generated information to build up a directory. At the moment, I have a very small database of APS specialists compiled from people letting me know who they think is good in their area. On the new website we will have a feedback form so I am hoping this database is going to grow quickly! I am too busy to make the other one available on the current website - i will never finish the new one if I keep having to back track so am hoping to launch it this autumn.
By pushing everyone to London, we are not helping raise awareness or educating other doctors in the UK and there are some excellent specialists out there. Thanks to this forum and other patients being in touch, I know of two very good specialists in Wales we can now recommend
This is definitely an area the charity is keen to expand and I am hoping that by next year we will have a comprehensive collection.
I have to say I agree on one level but not totally. A database of knowledgable APS dr's would be good but and it is a big but. The thing with Tommys springs from the fact initially that is where we got to see Prof Hughes, the man himself what better an expert but him?
I like many many others have been down the try other hospital route. I saw many docs at many hospitals and drew a blank. My son is now going down my route try all the local first which all drew a blank too and he is now going to London Bridge.
My other worry is other docs want to undo what Prof Hughes has started. How many on here have local docs and nurses always wanting to put INR levels down.
I saw a rheumi where I live after seeing Prof Hughes as he said I needed local support, he obviously hated all Prof Hughes stood for and wanted to stop his regime. I recently saw a local haemo who said his protocol was too high and would not have me above 2 when he set INR at 3.5 - 4.0.
From my experience no other docs will do what Prof Hughes will do. And for me armed with a letter from him my GP's agreed the regime and self testing and have supported me like that since 2004.
I get your point with what you are saying, but you will be amazed at the amount of medics there are, who have no idea of APS. I had one last week. Awareness we need around the country. I was referred to St Thomas's after doing my own research and getting nowhere, with the docs where i live. Which is East Yorkshire in England a few 100 mile awy from London. I travel there as i get the best care there. I am still pulling my hair out with the docs where i live. Its a constant struggle to get the message over to them. EDUCATION is the key word. You are right that it will be the England based forum who comment on St Thomas's, but i have to add, that St Thomas's do have many patients from overseas treated there. Prof Hughes was a consultant there before retired and continued with his private practice. Unsure if you know that he discovered APS.
To clarify - Prof Hughes and his team in the Hammersmith were the first group to DESCRIBE APS - it had been discovered before but no-one had put the pieces of the puzzle together. They got important articles published in 1983 - it was really through their work of studying unusual lupus patients - Nigel Harris played a bit part in this too.
Unfortunately, there is a lot of professional jealousy because people have said only Prof Hughes discovered it, which isn't true. The Hughes Foundation aims to rectify this and we are hoping to pull everyone together so we can all focus on serious international collaboration.
I am in Botswana & have seen an excellent rheumatologist in Johannesburg who follows the work of Prof Hughes et al v closely, attends all conferences etc and is willing to consider seronegative APS. Her name is Dr Du Plooy and she can found at the Wits University Faculty Practices where they have a group of excellent specialists who are all engaged in research as well as seeing patients. The APS Foundation of South Africa apssafoundation.co.za is also an excellent resource.
Hope this is the right place to put this info - Dr du Plooy saved my sanity and quite possibly my future health. As she put it - what if the next attack is a stroke? You shouldn't have to wait to have a stroke before getting treatment.
We do need doctors to be educated all over uk and the world but at the end of the day if you are suffering and you can afford or can access StTommies then go for it!! It is frustrating enough having this condition and some of us will be more articulate, more assertive but many dont want to challenge a doctor or GP but to the expense of their own health... units all over and excellent doctors but even thos with a great reputation eg a consultant it doesnot follow that their registrars are of the same thinking or belief so being under a consultant where one person has had excellent care sadly does not mean all will because one thing i have noticed is lack of contiuity in care... so often you make progress only to be seeing another registrar whos does not always have all the facts and it falls down...
going to london bridge was the best thing i have done after years of struggling and trying to educate my Gp's but the facts are unless NICE or other recognised bodies are fully informed then GP's, rheumy and neurologist and haematologist will stick to what THEY believe and are happy to follow eg INR's because they are concerned off the bleeding aspect when we are more concerned with the clotting factors!!!
I say go where the experts are through them and the collaborative research then the wider picture will get known but should not be at the expense of our health until they do..
my thoughts kathy xx hope you are all having a good day and a lovely debate for a wet monday xx
I travel to New Jersey to see Dr. Andrea Gaito/Rheumatologist....however, in researching APS....I find that in the US "teaching hospitals"...usually have Rheumatologists that specialize in APS or other Autoimmune Disorders...and one can make an appointment to see them in the clinic....or "private" practice usually next door to the Medical Center itself...
I live 2 hours north of New York City and if I were to go to my "local" Rheumatologists I would find they do not understand APS.....
I was at St Thomas' yesterday so didn't have a chance to get online. Posting on this has sure generated some discussion. Thanks for all of your replies and for your thoughtful and insightful comments. I definitely think a register of doctors with specialist knowledge and interest in APS would be a fantastic resource.
ll very interesting! I live in France and was diahnosed in France for APs Sjogren's and fibro! Very different here! My GP knew all about it and sent me to CHU in Limoges who have a rare diseases department! they are highly recommended for Lupus...where they ran loads of tests and confirmed APS then my rheumy put me in the same hospital a year later for further tests and found the SJogrens. My doctor does everything for me....sends me for blood tests etc and have been to dermotologist, cardiologist....you name it I have been! I am so very lucky! Have thought about returning to the UK but unfortunately all your stories put me off!!!!! I am sure I would not get the same treatment as I receive here! which has been and continues to be first class! I had a knee replacement op in November and all went well and everyone knew I had APS....yes I now have cronic regional pain syndrome but not due to anyones fault!
I live in Galveston, Texas and love my Dr. who is a professor at Univeristy of Texas Medical Branch. I would love to know if there are any more people in Texas with APS. My Dr can not give me that info due to Dr. patient confidentiallity.
Just for the record, My daughter was (and still is) the Guinea Pig for Dr Godfrey here in Victoria.
He has brought his medical students in to see her and to have them examine her for signs of APS and to give their thoughts on her condition because, as he himself said, a new pair of eyes might see something he did not.
it is very encouraging to know that he is teaching others about this syndrome, and that he is involving others who know about her condition, in her care.
In my opinion, I think we hit the jackpot with him and his team.
I could not have wished for more, and have been given so much better than we expected.
I saw Prof Hughes once at St thomas' about 20 years ago (routine appointment in rheumo clinic -before Lupus unit)...and I didn't like him very much - found him arrogant and dismissive - I don't think he liked me ...I think he was 'showing off' and (by accident) I embarrassed him...
He had another Dr with him (from Israel or something) - he asked me where I came from - I thought he was wondering about genetics (he had my notes in front of him with my address on) so said 'originally North of England'...he asked me how long it took me to get there - to which I said 20 mins (lived in Brixton/Clapham - St Thomas' was my local hospital)... after that he was decidely frosty...rest of appointment was uncomfortable and a bit of a waste of time - felt he cared more about his ego and impressing the visiting doctor than how I was getting on....
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xx
so fed up
Neurologists and other health care professionals
Rheumatologist for APS
Is it possible to have APS or Lupus with negative blood tests?
Just seen Professor Cruz with a result I think ?
