The Fatigue Network

I’m really lucky that I work for a company that prides itself on its diverse workforce and actively works to support disabled employees. We have a number of employee led networks who work to raise awareness and support for a variety of different conditions, including mental health, Inflammatory Bowel Disease, Cancer and many others.

Back in February 2016 I was part of a small group of employees who wanted to do something to help people like us, with conditions where chronic fatigue was a major symptom. We launched The Fatigue Network in March of that year and were overwhelmed with the response. Very quickly we had 40 members from across the country with a variety of conditions including Chronic Fatigue Syndrome/ME, MS, heart disease, brain injuries and a whole lot of conditions I’d never heard of.

We set out with 3 main aims - to build a supportive community where members felt they had someone to talk to and share problems with, to raise awareness of the issues employees with fatigue face, and to develop a 12 month action plan to tackle some of the issues.

We surveyed our members to find out what their biggest concerns were. In all honesty I don’t think the results really surprised us – they focussed on reasonable adjustments and the confusions around what was and wasn’t considered “reasonable”, the varying support available from line managers (usually dependant on their knowledge and understanding) and the provision of places to go and take breaks in peace, rather than busy canteens. All these issues featured in our action plan for the first year, and have carried forward into the 2017 plan too – none are things we can solve overnight, but the fact we’re in an organisation willing to listen and take action puts us in a fantastic position.

I took on the network leadership role in the summer of 2016 when a couple of our group had to step back due to their own declining health. I lead a steering group made up of myself and four others and together we make the decisions on the projects we take on, as well as managing the day to day running of the network. I’m so grateful to this group for everything they’ve taught me in that time, about other conditions, the ways they manage those conditions and the fact we’ve become great friends, supporting each other in our day jobs, outside of work and with network issues.

We hold monthly webinars for network members, where we update them on the things we’re working on, have a session on a particular issue (e.g. pacing techniques) and have an open discussion forum.

We also have an internal social media network called yammer, where we have a private members only group which we use to talk about issues and ask for advice from one another on all sorts of things related to health. The latest discussion focussed on life insurance for home buyers and finding the right policy that doesn’t break the bank when you have a chronic health condition!

As the network leader I sit on the disability federation, made up of all the disability network leads and the staff in the Equality, Diversity and Inclusion Team who are able to take some of our big, cross cutting issues forwards. They report in to the board of directors, so it’s our way to raise the big stuff.

Reasonable workplace adjustments have been something on all the networks radars over the last year or so, and this year we’ve been able to work together to bring about major organisational change. Launching in September we have created a new policy and guidance document, which very clearly explains the parameters of the word “reasonable” as required by law. In our case there’s actually very little which would be considered unreasonable – our organisation employees over 9000 people, so has a pretty large budget!

We’ve created a new internal intranet site which has all the guidance and information an employee or manager could need, including information on where to go for support, clear guidelines on budget and what to do when an agreement can’t be reached. We’ve developed a simple process for occasions when a manager is unwilling to help, where the issues can be raised with our diversity champion at director level, and he will then make the final decision on what can or can’t be done.

We’ve used my experience of workplace adjustments as a case study to demonstrate the benefits of getting them right – without the adjustments I have I wouldn’t be able to do the job I do or work the hours I do. I’m able to work flexibly, reduced hours and almost entirely from home. This enables me to take the breaks I need, control the environment I work in, and some days just work from the sofa in my PJs!

We’ve also encouraged the use of an employee passport. This document was created by one of the executive manager training groups as a pilot, but it was so successful for those of us that have used one its now being encouraged across the organisation. It’s a place to record lots of information about our condition, how it impacts us, how it impacts our work and the adjustments we have agreed with our manager. I’ve changed line managers 3 times since mine was written, and its enabled me to transition from one to another without having to go through the process of requesting adjustments again. They really have been game changes for a lot of us.

We’ve set up buddy groups now too, joining up network members based in the same part of the country or with the same condition. It’s amazing to see the way everyone supports one another, and fills me with pride to see the friendships that have grown from it.

The other thing I do as the network lead is act as a coach and mentor. I’ve worked one to one with employees and managers to help them work out how they can manage their fatigue and work, and it is without a doubt the very best part of my job. I love being able to work with individuals, whether newly diagnosed or new to the organisation to help them work out what the options are, help them get the support they need and make a real difference to their lives. I’m not a counsellor or HR expert, but my own experiences and the knowledge I have from the different people I’ve worked with mean I can help people at least consider what might work best for them, and see that it might just be possible for them to carry on working.

Our network may only have been in place for 18 months, but we’ve achieved a lot in that time and now have over 100 members, who between them have 25 different health problems. We do this as volunteers, fitting the work in around our day jobs, home lives and our own fatigue. But I wouldn’t have it any other way. I love our network and everything about it, I’m so proud of what we’ve achieved and am excited to see what the next year will bring!

Carrie Pawley