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Living with M.E.

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SEE M.E. project

Our SEE M.E. project

Support, Empower and Employ people with M.E. (SEE M.E.) was an innovative pilot project that transformed employment outcomes for people with M.E. in the South West. By responding directly to the needs of people with M.E., and those that support them, SEE M.E. provided crucial tailored and expert support, empowering people with M.E. to stay in work, return to work or leave work well.

The project employed specialist employment support staff with experience of M.E, embedding them within the specialist Bristol NHS M.E. clinic, where more they worked with more than 120 people with M.E. over 12 months between 2015 and 2016.


January 2019 update

We understand that some concerns are being raised about the aims of the SEE M.E. project and the content of the SEE M.E. toolkit (see below). We would like to address these here.

The SEE M.E. project was a pilot employment support service, which aimed to support people with M.E. to achieve their employment goals.

SEE M.E. clients could self-refer, or be referred by a clinician or other organisation. Participation was entirely voluntary. Every client referred took part in an assessment to determine primarily whether or not they were well enough to engage with the service; whether their goals were employment related; and whether the service could address their needs – the alternative being to signpost or refer them to alternative sources of support.

The SEE M.E. project was not a clinical trial - we did not set out to test treatment approaches. It was delivered by an experienced Project Coordinator and Employment Advisor, who offered specialist employment support, not clinical advice. Both had an excellent understanding of M.E., born of personal experience, particularly in relation to the employment support needs of people with M.E., enabling them to carry out in-depth case work where required.

The SEE M.E. toolkit is not a clinical toolkit, and should absolutely not be used to develop a treatment or symptom management plan for anyone with M.E. Neither is it intended to replace appropriate medical care. Its purpose is to support professionals to better understand the fluctuating nature of M.E., and to always led by their client with M.E. when discussing their employment goals, which might be staying in work, changing the way they work, reducing their work or, where they were too ill to stay in work, leaving entirely. with support to access the financial and other support available to them.

The SEE M.E. toolkit has been shared with DWP work coaches, many of whom are supporting people with long-term conditions, with a clear message that it should not be used to make assumptions about what an individual with M.E. is or is not able to do. It has NOT been shared with welfare benefits assessors, and we would never support it being used in this context.

We appreciate the constructive feedback we have received about how we can make this much clearer, and are reviewing the toolkit as a priority in our current ongoing content review. The updated version will be shared here as soon as we are able to do so.


Remarkable results

Independent evaluation of the project found that 72% of SEE M.E. clients achieved their employment goal, including:

  • successfully returning to their job after lengthy sickness absence
  • starting a new job
  • achieving their best possible exit from unsustainable employment
  • achieving more sustainable existing employment
  • starting volunteering or a training course.

The project also demonstrated significant value for employers and clinicians.

  • 60% of clinicians said SEE M.E. freed up clinical time previously spent supporting patients with their employment needs. This time saving of saving of two hours per week equates to £24,000 per annum.
  • 83% employers or union representatives said SEE M.E. made a positive difference to their anticipated case outcome.

Watch SEE M.E. service user Heather, SEE M.E. advisors Paul and Amanda, and specialist clinician Hazel talk about the difference the project made in our short film.


Essential resources: free to download

Should you be unable to view or download any of these resources, please contact us to request a copy.

Using the knowledge and experience gained through SEE M.E., we have:

  • updated our M.E. and work booklet for people with M.E., focusing on employment rights, support available including Access to Work, what you can do if you do lose your job and welfare benefits plus other work-related finances
  • revised our An employer's guide to M.E. booklet, with advice on employers’ legal responsibilities, reasonable adjustments, managing sickness absence and sick pay, and recruiting and supporting people with M.E.
  • produced a new SEE M.E. toolkit for professionals. This supports specialist M.E. clinicians, employment advisers, work coaches and careers guidance practitioners to understand M.E. from their client’s unique point of view and personal experience, and work collaboratively with other support professionals. January 2019 update: This resource is currently under review, to ensure the information and advice it gives remains up-to-date, accurate and appropriate. We aim to make the 2019 edition available as soon as possible. Thank you for your patience.

We are now undertaking a programme of work to engage with professional bodies and roll out the toolkit, including offering specialist training for employers to improve how they support their employees with M.E.


How was SEE M.E. set up?

People who have M.E. tell us that they, their employer and the people supporting them need more information about how to effectively manage M.E. at work.

We developed SEE M.E. in response to this, delivering it in partnership with the specialist M.E. clinic at North Bristol NHS Foundation Trust, Action on Disability and Work UK, Jobcentre Plus, Remploy and Pluss (an award-winning social enterprise). The project was funded by SEE M.E. was funded by the National Lottery through the Big Lottery Fund, the Henry Smith Charity, Lloyds Bank Foundation, Rayne Foundation, Denman Charitable Trust and Dame Violet Wills Trust.

SEE M.E. aimed to support people with M.E. living in Bristol, North Somerset, Gloucestershire and South Gloucester to stay in work, return to work or leave work well. By developing and demonstrating good practices in integrated health and employment support for people with M.E., the project raised aspirations and helped individuals to achieve their goals in relation to employment.

Benefits for clients have included increased knowledge about rights, entitlements, welfare benefits and available services, as well as increased confidence to achieve their desired employment goal. In addition, most individuals have reported an improvement in their sense of well-being as a result of the impact SEE M.E. support has had on their employment situation.