Has anyone else heard that lupus is becoming a specified illness, & know what this means?

[roobarb]

My rheumy told me this on Monday, & it sounds like it will give us greater choice as to who we can be referred to for treatment.

I couldn't find a lot of info when I Googled it, & would be interested to learn more.

[Paul_Howard Partner LUPUS UK]

Hi. I've just had a chat with Chris (Director of LUPUS UK) to find out a little bit more about this.

Basically, lupus is on the cusp of being classified as a rare disease. What this will mean is that each area will hopefully have a specified specialist centre that will see people with lupus. Hopefully this will benefit patients by pooling knowledge and experience.

It is unclear how exactly it will work nationwide at the moment, so please don't quote us on this, as these things can change a bit. What it could mean, is that some people may be referred to a different hospital in their area if they are not at the specialist centre. As things become more clear, we will provide better information on how it could affect people.

[misty14 in reply to Paul_Howard]

Interesting! looking forward to learning more about it.

[roobarb in reply to Paul_Howard]

Thanks Paul

That is great news. Do you or Chris have any idea about a time scale for this coming about?

Presumably these centres will be the best places to go for those seeking a diagnosis too.

[Paul_Howard Partner LUPUS UK in reply to roobarb]

Not really I'm afraid. I think it originally started last April? Some areas may expect to see changes as early as next year.

I would reckon they would be the best place to go for a diagnosis....providing the GP refers you there. I'm not really sure how it would work.

[Purpletop]

That's great news! The more access to knowledge and expertise we can have, the better!

[Tigerlily4]

Excellent!

[Wendy39]

This sounds like good news.

[KathinAyrshire]

This will be brilliant if it goes ahead! Here's hoping

[mstr]

This is so good to hear.... thanks for the update

[thekid71]

Sounds like sweet music to my ears! God willing

[jeevan05]

Brillant..

[Carcrashgal]

Huzzah! That can only be good news - even if it means when you say 'lupus' to a new medic they won't look at you in bemusement. (Or quote Dr Geoffrey House: 'It's never lupus'!)

[amj1978 in reply to Carcrashgal]

lmao..i know that 1 from past ex..so i agree..gota b a good thing..

[seekingfreedom]

Possibly 'great news'. What happens if you were at a specialised care centre as I was and were unhappy with your care. I transferred to a much smaller set up, and get much better treatment there, would much rather stay there than become just another number again. Appreciate I had a bad experience, but just throwing another slant in. Guess it will take ages to transpire in proactive and hopefully as healthcare users we may be given some say in who we want to look after us.

[roobarb in reply to seekingfreedom]

That's a good point sf. I don't think we will be obliged to go the specialist centres. My rheumy pointed out that potentially not everyone will be well enough to travel to them, but local rheumies will have the opportunity to consult with the specialists on our behalf. Which is what she did for me earlier in the year when I was in a big flare.

[tintin49]

good news hope that dwp see lupus in a new light to

[Mainshah]

That's awsum, grate stuff

[Wendy39]

Do you know if this will happen in Wales as well as England? (Only sometimes the welsh NHS does things differently).

[Wrenmuzz]

Also Scotland if anyone knows please, especially if things change next year!