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Highlighting the need for greater understanding of M.E.

February 17, 2017

Action for M.E. has submitted its response to the Government’s consultation on work and disability, Improving lives: Work, Health and Disability Green Paper, representing the views of people with M.E.

The Government’s paper outlined measures to improve employment for people with disabilities or long term health conditions. These included reforms to Employment and Support Allowance, as well as measures to increase the capacity of employers and clinicians to support people with health and employment needs.

Our response is based on:

  • Our Work, Health and Disability survey that was open throughout December and January. We received more than 600 responses from people sharing their experience of M.E. and employment
  • The outcomes of our SEE M.E. employment project, including feedback we’ve received on resources that came out of the project

Based on your survey responses, one of the points we highlighted in our response was the need to improve the knowledge of less widely-understood conditions such as M.E., amongst both employers and Jobcentre Plus staff. While a majority of our survey respondents stated the need for better knowledge, the experience of one person demonstrated how useful employment support can be when given correctly:

“Having someone who understood M.E. and could think of things I didn’t know about was really helpful, such as earphones to help with noise sensitivity, specialised chair to help with fatigue etc.”

The SEE M.E. project had employment advisors who mediated between employer, employee and clinician to achieve an appropriate outcome. Our survey showed the popularity of similar high-intervention support. When asked what was most helpful for people with M.E. who wanted to sustain or enter employment, 86% of respondents recommended a change in working pattern, 76% liaison between health professionals and employers, and 75% reasonable adjustments. In our response, we stated that practical measures, achieved through communication between clinicians and employers, were the most effective way to support people with M.E. in employment.

We also stated that there needs to be a clear recognition that some people are not able to work, such as the 25% of people with M.E. who are severely affected, and that the Government’s proposals to increase employment should exempt this group.

Thank you to everyone who took part in this survey and contributed to our response. By responding to government consultations, such as this green paper, we can amplify the voices of people with M.E. on the decisions that matter to them.