Tommy's or UCH?

[Coppernob]

I'm probably going to ask my GP to change my rheumy referral from a 'lone' rheumy at Mile End Hospital to a specialist lupus unit. One that can also deal with APS and Sjogrens. And where any further referrals to various consultants (chest, eyes, bladder, kidneys, nerves, etc.) will be to people who presumably have a better-than-average exposure to autoimmune conditions and their ramifications. Also access to a specialist nurse for quick queries.

I was thinking of asking to be referred to St Thomas' and, specifically, to Prof David D'Cruz (who's had glowing reports on here) or, 2nd choice, to Professor Khamashta, who I have seen privately in the past and who I know is clinically good.

But I've also seen a few posts on here recently about very slow or otherwise poor service from Tommys. And was wondering about asking for referral to UCH instead, which has recently become a lupus centre of excellence under Prof Isenberg.

Can I have opinions please?

[Thaddeus]

If Tommy's has a problem it it that it is victim of its own popularity.

I feel that I could not be in better hands there.

But my august appointment has been put back to December, which on the one hand is a pain, but then again I am in good shape at the moment. If that changes I know that the door is always open and a call witl get me in toot sweet.

[tintin49]

i live in london and under the royal free but did ask for a second opinion as my gp was very unhelpfull,unproffessional even and because its a group practice the other gp's were behaving badly towards me to.

i went to st thomas's and had dr rhodes who is obviously very good a specialist and told me stuff that my rheumy did not notice or mention about my experience with lupus.

in summary i believe its about delivery. how your dr chooses to treat you and how he/she decides what to give you.

there is no cure for lupus so its a bit like a stab in the dark if the treaments work or not and how much meds you are prepared to take hoping that it will work. i was on hydroxy which has ruined my life the after effects were and still are months after stopping it.

i am so wary of the drugs and after effects but i feel like hell all the time.

for me its about who you can talk to and trust, who you gel with. in my experience there is not a lot of difference in the meds just how your rheumy will tackle what to give you!

[Thaddeus in reply to tintin49]

An interesting response Tintin.

I always take the view that doctors play the numbers and go with the balance of probability. The problem with lupus is that it is so amorphous and personal to each sufferer. That and the general inertia which permeates the medical world when it comes to new illnesses and ways of thinking

.

It certainly pays to do your homework and we do have to play the system to get the best from it. I do of course realize that we are not always best placed to do this.

Hydroxy gave me back my life,

But just as each of us has our own version of Lupus, so each of us has detail differences in our chemistry which means that one size of med does not fit all.

I hope you find a doctor who is a good fit for you.

[tintin49]

thanks thaddeus

[Tophat]

I live at a distance from London and had no local Consultant. I found Dr. DÇruz excellent but the Helpline run by the Nurses often did not return calls or returned them two months later and it is not as if I bothered them often.. Also the wait between appointments could be 16 months or more meaning I often had to supplement with Private appointments. When I needed an Emergency Admission it was fine but for the less dramatic but still worrying stuff I (and my Daughter who also went there) found them less good. Victim of their own success is probably absolutely the case.

Hope this helps. Probably still the best place for getting a diagnosis.

[Coppernob]

Thanks Tophat, and others. I think I'd been getting the general impression that Tommy's is good clinically but poor administratively. I have a working plan! Am going to see my current rheumy in 3 weeks at Mile End, then make a decision about whether to stick with her or not. If I'm still not entirely happy, I'm going to pay myself to see Prof Khamashta on one occasion at the London Lupus Centre and pick his brains, both medically and administratively, if you see what I mean, then choose where to go for my regular NHS care.

Maybe it's even possible to pay for occasional private consultations but get any tests done and drugs supplied by the NHS. I know my GP has in the past prescribed drugs on the NHS on Prof Khamashta's recommendation. So maybe I could get any tests done that way too.

I must also check on the small BUPA outpatient coverage I have to see if it covers me for ongoing consultations/treatment as opposed to just diagnosis.

Hope some of this helps someone else. Thanks everyone. If I encounter any generally useful info along the way, I'll pass it on.

[skylark15]

Hi, Coppernob.

I am at the same point now as you were 4 years ago, wondering which of the specialist units to go to. I have read the replies you received. What did you decide to do in the end? And have you received the continuity of proper care that you were looking for?