Your voice matters, and we are listening.
We want to understand the needs and wants of the whole lupus community, to help us understand where we should be focussing our attention and how.
Between March and May, we will be doing as much reaching out and listening as we can. May is not the end of the conversation, and we plan to continue this listening and conversation far beyond this work, but it is a focused time to help develop our aims.
Alongside lots of informal conversations with members of our community, we have set up two main ways you can tell us what you need in your life with lupus and what you want from Lupus UK:
- Surveys
- Focus groups
The surveys are designed to help us understand what is important to people living with lupus, or supporting those with lupus (either personally or professionally), and what you think we should be focusing on to support the needs of the lupus community better.
The surveys are completely anonymous, and all questions are optional.
As well as completing the survey, we would love if you could share it with anyone who may be interested. If you need any support to share it, such as some social media images you can use or some ideas for what to put in an email, you can contact us at [email protected] and tell us what you need.
This survey is for people living with lupus, their parents, carers, or friends: https://www.surveymonkey.com/r/BGPJSFY
This survey for people who support people with lupus in a professional capacity, like doctors, nurses, and researchers: https://www.surveymonkey.com/r/BNTPZSB
Both surveys ask the same general questions about what people living with lupus need and what you think Lupus UK should be doing. The community survey has more questions about your life with lupus, and the professionals survey has questions about their needs as researchers/healthcare professionals.
What if I am a healthcare professional or researcher and also living with lupus?
We would love to hear from you! Please do feel free to complete both surveys, or just complete one and include all of your experiences.
What if I struggle with online surveys, or know someone with lupus who isn’t online?
You can contact us on [email protected] or 01708 731251 and we can send you a paper copy in the post.
What are the focus groups for?
The focus groups will be held online on Zoom in small groups of 6-8 people. These will a discussion of the same topics as in the survey, but will allow us all to have a more in-depth discussion about what’s important to you and what you think.
Who is running the groups?
All the focus groups will be run by staff from Lupus UK, except for the group on Thursday 3rd April which will be run by an external facilitator. This is to help people who would feel more comfortable being open without a member of Lupus UK staff present.
Will the groups be anonymous like the surveys?
The groups themselves cannot be anonymous, because of the nature of a group discussion. However, all notes taken about the group discussion will be anonymised and your name will not be linked to any comments. Some facilitators may record the meeting to help them take notes afterwards, but this recording will be permanently deleted after they have taken notes and you will be told in advance if the meeting will be recorded for this reason.
Can I attend any group?
Two of the groups are open to all, and four of the groups are for specific nations of the UK. You do not have to attend a group based on where you live, but at those groups we may talk about issues specific to those nations, for example how healthcare systems work differently in different areas.
