Dr Sara Booth, Professor Elisabeth Walker and Dr Elizabeth Price would like to thank everyone who took part in their research survey about employment and lupus in 2017. There were some really powerful themes emerging from the research which have not previously been written about clearly in the medical/ scientific literature. They were overwhelmed by the number and the quality of the answers they received – thank you.
They would now like to share their ideas for the next phase of the research to hear your comments and ideas. It would be ideal if you could share your feedback in order to help stimulate some debate.
Background – the theory for why this research is necessary.
We know that;
1.Lupus makes it difficult for many people to work regularly in a job for the usual hours, day in and day out for years.
2.Regular work at regular times for pre-specified periods with no flexibility is often difficult for people with moderate to severe lupus.
3.Self-employment is difficult because of the unpredictable nature of SLE and the need, for example, to be available for clients when they need you.
We also know that there are a relatively high proportion of people who retire on medical grounds with lupus, if not in their twenties and thirties, certainly in their forties and fifties.
There are a few next important research questions which are open to discussion on the LUPUS UK Community forum in the following posts;
Managers in large companies – HERE
Benefits system – HERE
People living with moderate to severe lupus (in work and not) – HERE