Stripy Lightbulb CIC has been working hard on a campaign to make the Department of Work and Pensions in the UK aware of the difficulties ‘mild’ (possibly also low-end moderate) M.E/C.F.S patients face in terms of gaining or remaining in employment, and what the alternative means in terms of benefits.
One element of this campaign is a patient survey entitled: ‘Mild’ M.E/C.F.S, Employment and Benefits.
The participation criteria are:
– Must live in the UK
– Must have been diagnosed by a medical professional with M.E, M.E/C.F.S, or C.F.S.
– Must be CURRENTLY physically able to be employed for 16 hours or more per week whether currently in employment or not (self-employed not eligible for this survey as self-employed are able to set own working patterns and reasonable adjustments)
Unfortunately, after closing the survey and evaluating the data, we realised that some participants do not meet the criteria specified and so our data is not fit for purpose.
We are restarting the survey today but have added information to the ‘Home’ page of the survey to clear up any confusion-
We are hoping to bring about social change for M.E/C.F.S patients as a result of our DWP campaign. We want to highlight the options available for ‘mildly’ (possibly low-end moderate) affected M.E/C.F.S patients in terms of employment and benefits.This is a survey specifically for M.E/C.F.S patients in the UK who are still in employment (not self-employed where you can set your own working hours and practices), whether currently in employment or not.This survey is not designed for patients who were previously in employment but left due to ill health, or for patients hoping to return to work one day. This survey aims to capture current circumstances and options available for patients physically able to be in employment.If you have been diagnosed as having M.E, M.E/C.F.S, or C.F.S by a medical professional and are physically able to work either 16 hours or more, possibly with flexible working, we would be delighted if you could participate in this survey.The survey contains 9 anonymous questions, you will not have to answer each question (some questions say to skip to question x.y.z depending on your answer). Please read each question carefully.Thank you for taking part and helping us to bring about social change.
We fully understand that only around 25% of M.E/C.F.S patients are physically able to be in employment due to having ‘mild’ M.E/C.F.S, this survey looks at whether current DWP policies and practices fit with the patient lived experience.
Survey link – https://www.surveymonkey.co.uk/r/8YGNBWM
Thank you in advance.
