Upcoming Online Focus Groups - Where should Lupus UK focus their attention as the national charity supporting people with lupus?

[nakita_cambow]

Lupus UK is 35 years old in 2025, and we are taking this opportunity to develop our aims and priorities for the coming years.

We want to understand the needs and wants of the whole lupus community, to help us understand where we should be focusing our attention and how.

Your voice matters, and we are listening.

Throughout March and April, we will be running 6 online focus groups where there will be an in-depth discussion about what’s important to you. If you are interested in attending, we would love to hear from you!

For more information and details on how to sign up, please visit: lupusuk.org.uk/2025/03/04/s...

You can complete our "Living with lupus" survey here: surveymonkey.com/r/lupusuk-...

Thank you for sharing your views! 💜

[StriatedCaracara]

I have assumed that people with 'lupus-like or lupus spectrum UCTD' are able to join.

Thanks🙂

[nakita_cambow Moderator in reply to StriatedCaracara]

Hi there, yes you are welcome to sign up! Thank you!

[Treetop33]

The survey is very weird and kinda hard to answer. For example, ' What gets in the way of you living the kind of life you want with lupus?' is difficult to answer in the UK where everything is so hard, you get no support at all and you are on your own (even more so with the latest PIP announcement). It's obvious why our lives are difficult. There's even been research about it (see Astriid on the work stuff). With the greatest respect, could you stop asking us about it and get on with defending our interests a little more forcefully?

[WinterSwimmer]

I filled in the survey - and while agreeing heartily with Treetop (above) and hopefully getting that across in my responses - I put awareness-raising as the all-important activity for Lupus UK, but perhaps did not say WHO needs to be aware, apart from the general public. Awareness is clearly necessary not just for politicians of all parties, civil servants and DWP assessors - but also, I am afraid, for GPs and sometimes specialists. I now have to deal with a surgery full of locus, where I have no named GP to oversee the care. None of them seems to have the slightest idea about lupus. Since last October I have received bad advice/instructions on at least four occasions. One of these was actively dangerous - but luckily I knew enough to refuse the intervention and walk away, which didn't make me popular but probably saved me an extended period of illness and grief.

I don't think I can join an online focus group at the moment, but did just want to say this. Thanks.