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The needs of the lupus community

Lupus UK are developing our strategy and aims for the next 5 years, and we want to hear from the whole lupus community to help us understand what is needed.

You can read more about what we're doing on our website here: Information about Life With Lupus survey

This survey will ask you about what you the most important issues are for people with lupus, and what you think Lupus UK should be doing to support patients, carers, researchers, and healthcare professionals.

All questions are optional and the survey is anonymous, so we will not be able to link your answers to you.

This survey is for healthcare professionals and researchers working with people with lupus. If you are someone with lupus, or care for someone with lupus, you can find our community survey here: Living with Lupus: What you need, what you want. If you are a professional working with people with lupus and have lupus yourself or care for someone with lupus, you are very welcome to complete both surveys.
The needs of people living with lupus
1.What do you think are the biggest issues getting in the way of people with lupus living the kind of life they want?
We are interested in anything about people’s lives with lupus, such as diagnosis, care and access to care, treatment, understanding, work, life, relationships, etc.
2.Of the issues you discussed in answer to Question 1, which are the most important?
3.Where do your patients get their support and information?
4.What's good about this support?
5.What other kinds of support and information are needed?
Supporting the professional & research community
6.What can Lupus UK do to support healthcare professionals and researchers?
7.What changes do you see happening to care and treatment in the next 5-10 years? What opportunities and challenges do these bring?
8.How can Lupus UK support better care and treatment in this environment, now and in the future?
Lupus UK
9.What do you know about Lupus UK?
10.What does Lupus UK do well?
11.What could Lupus UK do better?
12.What can Lupus UK do to make the most difference to people living with lupus?
13.Are there any particular groups or populations with lupus who you think have the greatest need or could benefit most from Lupus UK?
About You
14.What is your profession?
15.What age groups do you work with? (select as many as apply)
Thank you for completing this survey. Every answer and response will help us consider what Lupus UK needs to focus on to support the lupus community, including people with lupus and those that support them personally or professionally.

If you would like to discuss any of these topics in more depth, you can contact us via email at HeadOffice@LupusUK.org.uk

Please click "done" to submit your response.