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Living with Psoriatic Arthritis (PsA)

UK based specialists?


#1

Hi I’m recently diagnosed with PsA and have been suffering for around 6 months now. I know that it’s a long road ahead but haven’t been overly impressed with the treatment I’ve received up until now and wondered if any fellow Brits knew of any specialists who have helped them in the past? I’m based in The South East but would travel anywhere if the recommendation was good enough!

Thanks in advance


#2

Ali S, there are plenty of Brits here who definitely have opinions! You should also look at a video that used to be on this site, but you will have to find on YouTube. Dr Arvind Kaul, speaking on PsA. If you are a private patient, you might consider tracking him or one of his colleagues down.


#3

Hi Ali Surrey, welcome! And yeah, I know where you're coming from. I'm thinking ahead to needing to change my rheumatogist/get a second opinion in the new year and my research has led me towards the Royal National Hospital for Rheumatic Diseases in Bath and specifically Dr Ellie Korendowych who has a specific interest in PsA ... have a look at their website and see what you think http://www.rnhrd.nhs.uk/our-services/rheumatology/expert-team. There is also a team in Leeds who are heavily involved in PsA research. Another good info source in the UK is PAPAA http://www.papaa.org.


#4

Thanks for the insight Jules I'll check that out. I'm really swaying towards getting another opinion from someone who isn't just a generic RA consultant. Really appreciate it, I'll let you know if I find anyone else :)


#5

It seems there are Seenie! This place looks like just what I needed, good to know we're not alone. I will watch the vid, thankyou...

Seenie said:

Ali S, there are plenty of Brits here who definitely have opinions! You should also look at a video that used to be on this site, but you will have to find on YouTube. Dr Arvind Kaul, speaking on PsA. If you are a private patient, you might consider tracking him or one of his colleagues down.

#6

AliS, I've heard about another lady rheumatologist at the Hillingdon Hospital in west London who is also very good with PsA patients. I'll have to contact a friend who is a fellow sufferer and ask her to remind me of the name. Let's see if we can't get a list of good UK docs going here!


#7

Thanks Jules good plan! I’ve heard this week from a friend who speaks very highly of a consultant in London who helped a friend of his to get onto Biologics and he now has his AS completely under control. Although a different arthrothopy it may lead to new developments we can pursue, I will post in this thread with any updates.


#8

Aha! Jules posted this article. It’s interesting …
http://publications.nice.org.uk/etanercept-infliximab-and-adalimumab-for-the-treatment-of-psoriatic-arthritis-ta199
And it contains a list of the who’s-who in PsA treatment in the UK, with their locations.


#9

Doctor who I have heard is very good at Hillingdon Hospital in West London is Sarah Woodham.


#10

Hi everyone.

I would also appreciate recommendations on PsA Rhemotologists in the UK.

My short list at the moment is Dr Eleanor Korendowych (RNH Bath) and Dr Toby Garrood (London Bridge Hospital).

I cannot seem to find any information on Dr Sarah Woodham.

I have had PsA for over 10 years and feel like I need a second opinion.


#11

Thank you Sybil. I am based in Surrey


#12

Hi Justin, I'm thinking about second opinion now as well and Dr Eleanor Korendowych is my first choice.


#13

Hi- this is a late response but I’m a patient of Arvind Kaul and he is a very understanding and experienced consultant … He is based at St George’s Tooting on the NHS and at the London lupus and rheumatology centre at the London Bridge privately. I am so grateful to him for his excellent care and willingness to try new treatments. The head of the Lupus centre Graham Hughes is also excellent.
Best wishes
Rachael


#14

Rachel … Arvind Kaul! I’m in awe! He really does sound like a very kind human, from the address he gave which I saw on YouTube. It used to be on the main page of this site, but had to be removed for technical reasons.
Gyrocapt, have a look at the lecture: http://m.youtube.com/watch?v=ZF7uYMwyh5E
It’s very long, so pour yourself a drink and get comfy!
I’d certainly feel very confident about having him as my rheumatologist!


#15

Over the last year or so, we’ve had many members join us from the UK. Do we have any new recommendations for good PsA specialists in the UK?
And to everyone already on this thread, how are you doing these days? How about checking in?


#16

Hello all. I’m new to this group. And would really appreciate some help. I’m at my wits end. I have a very severe case of PsA and AS and need help. Was on methro and humeria but, the methro was making me very sick. Swapped in December to sekunamib (excuse spelling) but it is having no effect so my pains which are everywhere in hands, wrists, elbows, knees, feet and other main joints and severe but very severe in my spine, particularly top. Which professional is the best and can help me, who should I go to? Really appreciate any responses please. Regards Liam.


#17

Hi Liam. Like most people I have limited, but nonetheless telling experience of different rheumatologists. They vary for sure!
I am so sorry to hear that you are suffering like this. The brevity of your post says it all. So I’ll be brief too, and recommend that you try the Bath Royal National Hospital for Rheumatic Diseases. You can get a private appointment for under £200 and, with the approval of your CCG, can be referred there under the NHS. If you were to go there, there shouldn’t be a problem with funding for biologics as the centres of excellence seem to work well with CCGs around the country to ensure continuity of prescriptions.
I see Dr Ellie Korendowych, as do some other members of this community. It is a (possibly the) centre of excellence for psoriatic arthritis in the UK. I believe there are other very good rheumatologists there too. Their reception staff are generally very helpful, if you wish to enquire.
You could see it as quite a hike, but I travel there from East Kent. Not such a distance really from where you are.
You take care, I so hope you can get on top of this.


#18

Hi Liam,

I go to Bath too and see Dr Ellie. I live in Kent but about an hour nearer to Bath than Sybil. Considering you’re in East Sussex, you’re even nearer. Think of it that way. I can honestly say everyone I’ve dealt with in Bath is exceptionally nice and easy to talk to from the guy who answers the reception phone upwards. I’ve had to access their nurse helpline several times and that was an eye opener for me as they were so efficient and thorough. I go for one appointment and 3 days later I’ve got the letter for the next one. It’s an incredibly well organised machine there.

But Dr Ellie and her team are exceptionally well regarded in the global world of PsA. She’s rated by her peers, they win the largest grants for research in the UK and publish the most papers in medical journals. It was finding all that out that told me that was where I should be treated. The bonus is that she’s actually rather nice too. At the time I couldn’t have cared less if she was awful to deal with, I just wanted to be treated by someone who had made it her career to be a PsA specialist. She’s both easy to deal with and at the top of her game.

She’s also really good at getting your GP to do all the other stuff that might be needed, such as MRI’s and whatever else. Her secretary is accessible by email and she usually has a response from Dr Ellie in about 48 hours for stuff the nurse helpline can’t deal with.

All this just eases all the stuff we have to deal with and lessens the awfullness at times. It’s reassuring, professional and just so comptetant. That so helps.

And frankly Bath is rather a lovely place to visit anyway, even if it a hike to get there. I stay overnight for my appointments now and am getting to know Bath and that can be fun too.

However just knowing I’m being cared for by such a PsA specialist simply makes me feel safe. That’s worth its weight in gold in my view.

I so hope too that you can get on top of this.


#19

And for anyone on the Welsh border, I can recommend Dr David Rees based in Hereford County Hospital, but does a clinic in Ludlow, Shropshire too.

I know opinions of rheumatologists can vary as much as the rheumatologists themselves. Personalities can be a factor. However my impression of Dr Rees was that (probably) all his patients think he’s awesome. I know for a fact that you can sit in his office and gibber like an idiot for 20 minutes and still go away with exactly the treatment you need.