seeking local contacts

[lucas3lady]

Hi , ive been recently diagnosed with Lupus and wonder if there is a support group or a contact in or near Gloucestershire where I live?

[Flows]

Morning lucas3lady sorry hear about your diagnosis. I can't answer your question but this site is fantastic for getting advice from people who have lupus and getting questions answered by people who understand what Yr going through. Definitely has made me feel less alone or worried. I hope this site helps a little. Good luck and take care

[dg70]

Lupus uk have a list of groups. I'm in Swindon area and there wasn't one near so I joined Cardiff a few years ago. They have online meetings every month with medical professionals giving talks and answering questions often, there is also a very supportive whatsapp too. An oxford group started recently and they have online meetings too. I have learned so much from others and the support and advice has been so good. I would recommend joining as since my diagnosis I would have really struggled without them. Good luck.

[lucas3lady in reply to dg70]

Thank you DG 70. How would i find the Swindon and Oxford groups please?

[Pickzie in reply to dg70]

Wow - I’m in Swansea with no group but didn’t know there’s a Cardiff group. Could you send details please?

[lucas3lady in reply to Pickzie]

DG 70 posted the following info on here re Cardiff- dont know if you saw it:

Cardiff is 7pm once a month on a Tuesday contact [e-mail].

Thats all i know, Pickzie. Good luck, please post me if you get any joy.

[dg70 in reply to Pickzie]

I have been with Cardiff for a couple of years and Dalila who runs the group does an excellent job. It's only an hour meeting on Tuesday once a month (This month is the author of The Wolf and Me), a writer with Lupus on Tuesday at 7pm but I can't make it (You can get sent a link for it). They also meet up occasionally in Wales (I think they are meeting up in Swansea this Saturday coming in the afternoon) and for you it would help as the Welsh NHS is different to ours and so you can keep up to date with that specifically. They are a lovely bunch and so helpful and there is a whatsapp group too for everyday questions and support.

[RosieA]

BIRD (Bath Institute for Rhuematic Disease) with Bath RUH is seeking to see if there is interest in a local support group for Lupus but you need to express your interest in its development, (which I have). Depending on where in Glous you live this might be of interest.

[lucas3lady in reply to RosieA]

Thank you Rosie A, i could well be interested. I live in Stroud. How would i express my interest?

[RosieA in reply to lucas3lady]

birdbath.org.uk - there is a section about getting involved. x

[RosieA in reply to lucas3lady]

I've just heard back from BIRD - they have passed my interest to the RUH Lupus team/specialist nurse, so I suggest that you contact the RUH directly. The nurse on the BIRD webinar I saw who was discussing developing the Lupus support group was Jaliah Norcott -Associate Clinical Nurse Specialist. Hope this helps.

[lucas3lady in reply to RosieA]

Thank you very much Rosie A. I have this afternoon tried to register my interest with BIRD.

[RosieA in reply to lucas3lady]

Jaliah from the RUH has just been in contact with me re starting this group. There is another lady who has expressed interest. I'm going to start a new post to see if we can get others to register their interest. If you're happy to PM me I could let you know where we're at with getting this off the ground. x

[lucas3lady in reply to RosieA]

Hi RosieA thanks for this info. I dont know how to PM you but here is my email address, hope that will do. [e-mail]

[dg70]

There is no Swindon Lupus uk group but the contact for the Oxford group is [e-mail]. They meet at 2pm once a month. Cardiff is 7pm once a month on a Tuesday contact [e-mail]. Cardiff also has a whatsapp group which has some very supportive and well informed fellow Lupies to ask questions of. I am in both and I'm sure that's fine 😄. The medical speakers and more that we have had with the Cardiff group have been excellent. (I hope its ok to put the contact emails) I couldn't find the email contacts easily on Lupus UK so I copied the two I know for you.

If you join Lupus UK you get a magazine every so often which has the latest group info, contact details and details of what the groups are doing at the back. It's worth joining Lupus UK as they are so helpful.

Like Rosie I also go the Bath hospital as it is a Lupus centre of excellence and about the best around for treatment. If you log on to www,birdbath.org.uk there are lots of podcasts to listen to re Lupus and other related conditions. It helps make sense of things and Lupus UK has so much info for when you are first diagnosed and beyond.

[lucas3lady in reply to dg70]

Thank you DG70 thats very helpful.

[dg70]

No problems, you need a support group especially after diagnosis it helps you navigate this new path in life. It's been invaluable to me. This site gives you a lot of support too. I guess I'm not too far away from you I'm nearly on the border of Gloucestershire about 20 mins from Cirencester on the north edge of Swindon. Unfortunately Oxford or Cardiff before that were my nearest groups which is not that easy for any group face to face meet up. Zoom is pretty good though.

[RosieA in reply to dg70]

There is a specialist Lupus Nurse at the RUH who was talking about the development of a local group. Perhaps we should go through her to express our interest in a local group. It does seem daft that a Centre of Excellence doesn't have a Lupus patient support group.

[Poshcards]

Hi, there used to be a group at The Mineral hospital in Bath, the RNHRD x

[lucas3lady]

thank you Poshcards.