Innovative project helps people with Chronic Fatigue Syndrome/ME return to work

Tuesday, 8 November 2016

An innovative project integrating employment support within North Bristol NHS Trust's Chronic Fatigue Syndrome/ME Service has seen 72% of participants achieve their work goals.

Working in partnership with national charity Action for M.E. the service - which is one of 14 specialist centres in the UK - employment advice, information and coaching were embedded within the clinic.

Some members of the Bristol Chronic Fatigue Syndrome/ ME Service, which has worked on an innovative project with Action for M.E.


Imagine having months off from work because you are so ill, so pole-axed by fatigue and pain, that you are no longer able to tell the time when you look at the face of a clock. Imagine you can no longer read even the shortest paragraph because your power of concentration is reduced to zero.

This is the experience of Heather, who has the complex neurological condition Myalgic Encephalomyelitis (ME). Following a two-year struggle to retain her job, Heather’s application for ill-health retirement was denied by her pension provider. It was at this point that her clinician at the North Bristol NHS Trust M.E. clinic suggested referring Heather to Support, Empower and Employ people with M.E (SEE M.E.), a new innovative pilot project led by UK charity Action for M.E.

Thanks to SEE M.E., Heather was able to access the direct support she needed and return to the academic job she loved.

Marking the end of the project, Heather joined Sonya Chowdhury, Chief Executive, Action for M.E. and Dr Hazel O’Dowd, Lead Clinician, Bristol M.E. service at a celebration event on Monday (November 7) at Southmead Hospital.

Sonya Chowdhury, Chief Executive, Action for M.E., says: “We hear so frequently from people with M.E. like Heather who want to stay in or return to work, but who have no access to tailored advice and practical support from someone that understands not only the complexities of M.E. but also the help that’s available, such as Access to Work. Others, who are sadly too ill to work, need support to leave work well. SEE M.E. was set up in direct response to this need, and as a result its innovative approach has transformed the lives of people with M.E.”

Offering advice, information and coaching on a one-to-one basis and in groups, SEE M.E. employed advisors with experience of M.E. and employment support. They were embedded within the specialist Bristol NHS M.E. clinic, where they supported more than 120 people with M.E., including Heather, over 12 months.

Results were remarkable. Not only did 72% of SEE M.E. clients with M.E. achieve their employment goal, but 83% of employers or union representatives said SEE M.E. made a positive difference, while 60% of clinicians said SEE M.E. freed up clinical time equating to £24,000 per annum.

One commented: “The project helped keep me up to date with employment issues and provided support with complex issues so that my clinical time has been used as well as possible.”

SEE M.E. certainly made all the difference for Heather. As a part of her return-to-work planning process, Heather’s SEE M.E. adviser supported Heather to identify the challenges in her role that arose as a result of ME, and to apply to Access for Work, as well as liaising with Heather and her employer to make reasonable adjustments. The result is that Heather, who still has ME and must manage her symptoms carefully, successfully used Access to Work to part-fund some now invaluable assistive software, and six coaching sessions, and she has returned to her job.

Heather says, “I felt like I had been on another planet whilst I was off sick and had returned to a familiar work environment where I am now different. The coaching has helped me to attend to what is going on, how my body is feeling and to what I need. This has enabled me to understand that I have a ‘new normal’ and to recognise and embrace this so that I can choose how to respond to the requirements of my work and not just react in old ways.”

Dr Hazel O’Dowd, Lead Clinician, Bristol Chronic Fatigue Syndrome/ME service says, “As clinicians we fully recognise the importance of vocational rehabilitation and the significant impact it can have on a return to health. Integrating specialist advisors in the NHS team meant that access was improved, duplication was reduced and the emotional and practical barriers to getting help with returning to work were minimised.
"In our experience employers and employment advice services often do not have specific ME expertise.  Combining this expertise with supported employment advice was much more effective and made returning to work part of the whole recovery package. You cannot underestimate how important work and returning to work is to people who are trying to manage life with an illness like this and we are pleased to see that this pilot has proved so successful.”