Sticky Blood-Hughes Syndrome Support

Lupus Unit at St Thomas' Hospital

After much speculation, it appears that the Lupus Unit is finally moving to its new home at Guy's Hospital in London. You can read and comment about it from the St Thomas Lupus Trust Facebook page:

facebook.com/StThomasLupusT...

Please don't ask me any other questions about the topic as I only know as much as you do!

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Thank you for putting this on! MaryF

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Well, I thought it only fair that people should be aware :)

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It is my understanding that the new unit will be much smaller. Last February they seemed to be discharging patients who were not in active flare at the time, and many of the consultants have gone too.

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As far as I understand it, they have only been discharging patients that are very stable and can be treated just as easily by their local health service. There is quite a waiting list for the unit and if they keep seeing repeat patients, then when will they have anytime/opportunity for the new ones ???

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Many have been discharged who's own GP's do not consider them stable, unfortunately. MaryF

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I guess that there will always be a bit of disagreement between health professionals when it comes down to treating people who have rare illness and the kind of treatment they think that the patient needs.

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I expect you have seen the pinned petition on our forum, which is not the last of it! MaryF

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I cannot say that I have seen it. Could you send me the link please ?

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healthunlocked.com/hughes-s...'s%20Hospital%20London%2C%20on%20behalf%20of%20all%20Hughes%20Syndrome%20(APS)%20Patients%20%0A

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It is great that they are finally getting somewhere decent as their base. However, if you come by train into London Bridge then you are in for a nightmare journey as they are closing london Bridge (Main Line) for THREE YEARS !!!

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Im not sure if this is true, just scaremongering or the rumour machine in free flow again because this has been going on for so long.

I have just received my appointment letter for ST THOMAS HOSPITAL, LUPUS UNIT, GASSIOT HOUSE, !!!!!

In other words in the same old place and it is just before Christmas. Im not sure they would still be sending out appointments if they knew they would not be there.....now would they?

Perhaps this Facebook page needs to get their source correct before they go publishing things!

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Maybe you should contact the Lupus Unit and find out from them? This is the official notice from the St Thomas Lupus Trust - again, you could try asking them directly as this is also posted on their main website: lupus.org.uk/.

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I did and they are repeating thats what the plans are - well they have to dont they it would be embarressing now not to. However being on the design group of my local hospitals new anticoag group, we have been designing a clinic for the past 2 years. They keep saying that that is happening in the next few months too! The NHS is such a dinosaur that it grinds away very very slowly. When something is said to have got the go ahead it does not nesassarily mean that is now or that it wont change! If it is still there by the time the election comes next year, whats the betting that everything stalls again. I believe things when they actually happen.

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Maybe there is still some room for fine tuning?????

Those cloaks are everywhere. Its not real until you can touch it, maybe?

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I must admit the old lupus centre is massive with so many consultation rooms with fewer patients (in my impression anyway...) Shame that the old tradition will cease though. :-(

hope the access would be equally easy in a new place. failing that, we can choose to go to london bridge...

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