[greenhaggis]

Can anyone reccomend a Lupus specialist for this area!

Have attended Dr x at Frimley Park not impressed to say the least.
My Immunologist (Frimley Park) took over my case and has just dx sle.:lol:

It would be nice to attend someone that deals with Lupus patients on a daily/weekly or even monthly basis not just on those rare occassions!

Looking forward to some help.

Lelsey

 

[karen.w.]

hi leslie

I am in a different part of the UK but am I right to assume you are close to london?sorry if I am wrong,I'm hopeless I don't know anywhere :lol:

however if you are then st thomas' would be the hospital I would choose..It is known to be the best in the country & many members speak very highly of it..

regarding regular appointments though I think their appointments are quite far apart due to the popularity...my own appointments at my hospital aren't very regular though either,every 3 months unless I am having a bad flare up.

good luck leslie,I hope someone else will come along with some advice...and if you are nowhere near St Thomas' please ignore my post :lol:

take care..karen x

 

[Clare.T]

Hello Lesley

There's a major lupus centre at Southampton headed by one of Dr Hughes medical team who also works at the private facility, the London Bridge Lupus Centre.
I am in Sutton Surrey and go to St Thomas'. I am pleased with the first rate treatment there but I am a low maintenance long time patient and have a year between appointments. I think the frequency they see people is based on need.
There's also the whole palaver of getting up to London and Southampton might just be easier logistically even if it is further away from you.
Driving into London is virtually out of the question and although in theory it only takes me at most an hour door to door, I allow at least 1.5 hrs depending on the traintimes

Bye for now
Clare

 

[greenhaggis]

Hi, thanks and yes you are correct St Thom's be okay to travel to.

When under the bad Rhuemi that I had no faith in I requested to go there and GP told me that he was no longer allowed to do a 2nd referral (they did not exist anymore) under PCT guidelines.

I saw another GP and under her advisement wrote a letter of complaint to PCT re. my lack of treatment by Rheumi, they disallowed due to cost St.Thom's and told me that they would alllow me to see an Immunologist at same hospital as the Rhuemi. This was said to be due to me living local to Frimley Park Hospital to which funding is already in place for the locals!!! What aload of rubbish I say!

I will ask my GP and Rheumi again if I can be referred to a specialist unit as I have now been diagnosed - perhaps it will work! Previoulsy I had no diagnoses!

If not I still need some help! THANKS AGAIN!

Lesley

 

[greenhaggis]

Claire,

How did you manage to get a referral, was it via a GP or Consultant!:hehe:

St. Thom's would be okay for travelling by train from where I live (30mins fast train, 45-55 mins slow train) to Waterloo Station (train).

Lesley

 

[Clare.T]

Hello again Lesley

I was wondering how you came to see an immunologist. It is not normal to get diagnosis over the phone by the way. Have you got copies of test results yet. They should be sent to the GP and you have the right to ask for a copy. That way you can gain a better understanding of your own lupus and very important check that all the correct tests were done.
It can be very difficult to get even a first referral out of area but it has been done. Most immunologists don't know enough to treat lupus even if they are competent to diagnose it and I am slightly surprised he even prescribed. Maybe he does know enough to treat you further as necessary, why not try to find out what he thinks you should do in future?
I had no problem getting a first referral from my GP. I had already been diagnosed many years and knew about St Thomas when I came back from abroad to live in this area. So I just asked or rather stated that's where I wanted to go. It is on the list of hospitals to which people in this area can be referred. I can't think what that site is called , firstchoice or something but I'll look it up.
The GP's support counts for a lot and you can also write to your MP. Whatever the HT says, there are major political trends towards choice as you are surely aware.

Good luck
Clare

 

[Clare.T]

This site might be useful. I was thinking of Choose and Book. There's a lot about patient haha choice.

http://www.patient.co.uk/showdoc/1286/

Clare

 

[greenhaggis]

Claire,
Thanks for site info will take a peek at it tomorrow!
I saw my GP after a week of being diagnosed (on Pred for a week), asI had only been prescribed with 28 days of the anti-marlarial. GP had received no contact from Immunoligist at that stage. The GP wrote to my Immunologist to ask for confirmation of meds etc.. I got a copy of his letter which just confirmed diagnses and whether bloods were high or low no levels (the letter was unsigned and noted as dictated!!!). I hope by now my GP will have all my results in detail sent from the blood labs. I do hope a plan of action has been given to her as to GP involvement and future treatment - but that is probably too much to ask for - heres hoping!
I will try to see my GP next week if she is working. Not sure about the competancy of my Immunologist re. Lupus experience, but I will ask him how many Lupus patients he has treated and for a referral if I don't like the answer!
Thanks again!
Lesley

 

[Lily]

Hi Lesley,

I think your last sentence sums it up well:

Not sure about the competancy of my Immunologist re. Lupus experience, but I will ask him how many Lupus patients he has treated and for a referral if I don't like the answer!

I know things may be different over there (I'm in Australia) but in my case I see an Immunologist who deals with a lot of Lupus and Sjogrens cases. There are a few over here who do and if you can get a hold of one they are often very expert in their knowledge and care (moreso than many Rheumies).

Good luck,

love
Lily