Invitation to participate in Welsh Lupus Review survey

A national survey is being carried out in Wales to hear from people with lupus about their experiences of care in NHS Wales and how it could be improved.

You are invited to provide feedback on the care you have received for your lupus. Anyone with lupus in Wales is welcome to take part. Your experience of care is really important, and by taking part, you can help us to better understand what works well and what can be improved.

We would appreciate it if you could complete a short online survey, which asks questions about your lupus and the support you receive to manage your condition. You can access the survey online by clicking the link below. There will also be an opportunity for you to provide more detailed feedback in an interview with an NHS researcher. The survey will close at midnight on Monday 15th April.

We would really appreciate your help in this important work; however, it is up to you whether or not you take part, and your care will not be affected either way. If you do decide to take part, your responses will be completely anonymous unless you decide to give us your contact details to take part in an interview. All findings will be made publicly available in a report, but nobody will be able to identify you or your responses.

This project has been funded by Welsh Government and is supported by clinical leads in Wales. LUPUS UK have been involved in the development of this survey and are supportive of the project. The project is being carried out by CEDAR, an independent NHS Research Group. 

More detailed information on the survey can be found when you access the online survey. If you require any help completing this survey, or require the survey in an alternative format (such as a paper copy, or to complete the survey over the phone), please get in touch with Harley Anderson at CEDAR via email or telephone: 
Email: harley.anderson@wales.nhs.uk 
Telephone: 029 21844771

Please note that this survey is for people with lupus in Wales only. You may have already been invited to do the survey through a letter, text message or email from your NHS healthcare provider. Please do not complete the survey again if you have already done so.

Click the link below to access the survey:

https://forms.office.com/e/Us0KYB1tbK