Appeal for APS specialists in the UK (sorry - rest of the world will follow at a later date!)

[YvonneW]

Hi. My name is Yvonne Wren and I've recently been employed in the post of admin support worker for the Hughes Syndrome Foundation.

I'm trying to compile a list of specialists from all over the UK to put into a directory on the new Hughes Syndrome Foundation website that will be launched before the end of the year.

We have a tentative list at the moment, but have not yet sought permission from the relevant specialists to release their names.

I would be grateful if anyone could let me know of a specialist related to Hughes Syndrome who they may have seen or know of and who we could approach to seek permission to add them to the directory. Please could you let us know which department they belong to eg. haematology, rheumatology, neurology, cardiology, obstetrics or anything else.

Thank you and i look forward to hearing from you..

[kateb81]

I used to see a Dr Myers (Bethan I think) but I am not 100% sure where she is anymore... She used to work at Queens Medical Centre Nottingham but during my pregnancy (where she was my Haematologist) she left and I believe she went to Lincoln but I cant be sure. Sorry its a bit of a uesless one isn't it xxx Kate xxx

[kateb81 in reply to kateb81]

Yes she is at the United Lincolnshire Hospitals NHS trust xxx

[YvonneW in reply to kateb81]

Thanks Kate. It's not useless at all - i'll do a bit of research to track her down!

[traceylou in reply to YvonneW]

My consultant heamo is Dr. Bethan Myers who is my primary care consultant she is based at the Leicester Royal Infirmary, I also see Dr Pavord at the same clinic who both specialise in APS, where I was referred to London for their opinions but I still remain with them also. I am aware that Dr. Myers does also commute between other hospitals over the uk including Nottingham, she can be contacted through the Heamo department at the LRI IN in Leicester..hope this info helps, they helped me

[YvonneW in reply to traceylou]

Thanks Tracey. They have both been added to the database now. Really helpful contacts. Thank you.

[Hidden]

Thanks Yvonne - this is a really important directory to build and will help patients around the UK, it's very much needed in the charity and will be great to include in the new website. I'm sure our HU community will be a great help

[MaryF Administrator]

Hi, I have sent by private message, 4 which I know of, however one of them you will have to track down via KateH or Professor Hughes! As I have lost the email with his name! Mary F x

[YvonneW in reply to MaryF]

Thanks Mary, I'll chase these up! YvonneW.

[Squeezer]

Hello there,

Dr Sue Pavord, Haematologist, who works at Leicester Royal and also sees private patients one day a week at the Spire Hospital in Leicester.

Good luck with the list- I think it will be a great asset to people struggling to find local, informed medical care in the UK.

H xx.

[YvonneW in reply to Squeezer]

Thank you H, We have already heard about Dr Pavord, so it's really helpful to have another recommendation and her contact details confirmed to show we're on the right track.

[Helene]

I see Professor Beverly Hunt at the Lupus clinic at St Thomas Hospital in London. She has her own Wikipedia page: en.wikipedia.org/wiki/Bever... and Linked-In page: uk.linkedin.com/pub/beverle...

She also works at Guy’s and Kings College Hospital in London.

Great initiative!

Take care, Helene

[YvonneW]

Hi Helene, Thank you for this information. I'm very happy to say that Prof Hunt is my specialist too, so she's already been ear-marked for the website!! Take care, YvonneW

[AnnieWilliams]

I see Professor McHugh at The Royal National Hospital for Rheumatic Diseases in Bath. Best wishes with the list. Annie

[YvonneW]

Thanks Annie. We have Prof McHugh on the list of specialists to approach already, so it is really helpful when we get more than one person confirming a name. Take care and thanks for responding. YvonneW

[AlisonT2]

I also attend the clinic of Prof Hunt but I live in Medway in Kent and I worry that if I am taken ill I will be admitted to the local hospital where they plead ignorance to APS so keep up the good work

[YvonneW]

Thanks Alison. We are trying to cover as much of the UK as possible. It can be a worry if you can't find someone in hospital with APS knowledge. Take care.

[YvonneW]

I know what you mean. The exact same thing happened to me before I was fully diagnosed. As the APS experts say - we are the ones to do the educating if necessary. Unfortunately, we don't always feel well enough to fight our corner. I nearly kissed a doctor in a hospital when I was on holiday and unwell when he told me he knew all about APS!! That's why it's so important to build up a database of UK specialists so there's never one far away!

[AlisonT2]

Hi just a quick update things are changing at the Medway Hospital I was admitted on Monday night after suffering neck shoulder and upper chest pain (not cardiac) following an operation at St Thomas' I was seen in A&E by a travelled doctor who knew all about APS and was sent to the AMU where I was seen by a respiratory and cardiac doctor who also knew about APS so thank you Medway for restoring a little faith in you

[YvonneW]

Hope you are feeling better Alison. I don't suppose you have the names of the doctors you saw, do you? I can research them and add them to the database for Medway if they're knowledgeable re:APS. Take care. YvonneW

[AlisonT2]

The guy I saw in A&E I cant remember his name he was a foreign gentleman and the other doc is Dr O'Brien who I think has technically retired but works p/t.

Yes am feeling ok thank you although I think I am now officially a member of the APS club as I have a pulmonary embolism (first one)

[YvonneW]

Thanks Alison. Wow - I'm sorry to hear of your recent medical add-on! Take care.

[ClareSteggles]

My DX was made at Newcastle Royal victoria infirmary by the neuro team so i don't know if there is anyone up there who knows about APS but i was reffered to St Thomas as the RVI is not my local hospital only a regional neuro centre. Hope this helps.

I will send the name of the neruo via private message

[YvonneW]

Thanks for responding Clare. I can check the neurologist out for his specialities and see if he/she is appropriate for the database.

[emmaj]

I have seen Dr Will Lester at Birmingham Queen Elizabeth Hospital in Heamotology. I have seen Dr Caroline Gordons team at the Lupus excellence ctr and he works closeley with that team. Unfortunately on my last visit I was seen by Will Lesters colleague who sid I didnt need to see him again - yet Will Lester wanted to keep the book open to see how it progressed with me, and The Lupus excellence ctr closed my file as I had been referred on to him and so I was left under my Neurologist who has finally suggested a referral to London - so in my eyes theres still a way to go with us Hughes as to who we should be under for follow up - were still in limbo really. He is fabulous and was the one who was prepared to stick his neck out along with my neurologist Dr Piers Newman and get me a diagnosis based on clinical evidence and not just rely on blood tests. I must also say that Dr Lester got me through two sucessful pregnancies and I really could never thank him enough. He is brilliant and if anyone was to be under him for care they would be in great hands x

[YvonneW]

Hi Emma, Thank you for this useful information. I have seen Will Lester presenting a few times at the Anticoagulation in Practice conference in Birmingham and he certainly seems to know his stuff! However, there is nothing better than word of mouth clinical recommendation so I'm sure Dr Lester will now find his way onto our database! Good luck with your future management. YvonneW

[Bury]

Andrew Bowden, Fairfield Hospital , Bury