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1 Sept 2016

Fibromyalgia Awareness - The Fight Continues

A few weeks ago I was given the opportunity to continue my fight for better awareness of fibromyalgia.  The motion in proposed for Unite 's policy conference made the final agenda.

I was proud to be able to bring this motion to Unite the Union's 2016 policy conference. It was carried unanimously. My work for people with fibromyalgia didn't end when I stopped being Mayor. I'm fighting for everyday people all the time. My speech was as follows:

Brothers and sisters. This is the second time I've spoken at a conference. The last time was 10 years ago and I was at Amicus finance sector conference opposing the offshoring of our jobs. A lot has changed in those 10 years. I've had two boys, been elected as a Labour councillor in Reading and in 2014 became the Deputy Mayor of Reading.

It was during my time as Deputy mayor that I visited my local fibromyalgia support group to celebrate their 1st anniversary.  I heard about the debilitating pain, tiredness, muscle stiffness, irritable bowel syndrome and other symptoms associated with the condition.  I was horrified to hear of the struggles faced by the people in the room. Drs who didn't believe the condition existed, employers who did not understand it, people who lost their jobs or felt they had to resign leaving them to rely on benefits and the government's increasingly harsh disability payments system.  The condition doesn't necessarily worsen. It doesn't stay the same. It comes and goes. You can have a few good weeks but then find you're unable to walk.  One day you can be OK the next unable to get out of bed. At work you could have a long run of good accuracy but a ‘fibro fog’ could mean you get things wrong or take longer than usual to get your job done. I remember hoping it was something I never had to experience.

Just a week later the pain began. It started in my neck. I dismissed it as a dodgy pillow. It moved to my knees. I put it down to 22 years dancing catching up on me. Then it moved to my shoulder,  elbows and hands. I couldn't do basic tasks without being in a lot of pain. I was tired but I had two children. It's normal isn't it? One Dr told me to come back when my knees were so sore I couldn't walk properly, another put it down to low vitamin D but thankfully the third took me seriously and referred me to rheumatology.  It was at my appointment in February 2015 that I saw one of the Drs who attended the support group the previous October and it was at that appointment I was diagnosed with fibromyalgia.  The pain, tiredness,  disturbed sleep, low mood and anxiety all made sense but it was a shock.

I became mayor in 2015 I raised money for Fibromyalgia UK and the local support group I'd become a member of as well as the local special care baby unit.  My year as mayor ended in May but my fight for people with fibromyalgia didn't stop there.

I bring this motion to conference so we can help and support our friends, family and members with fibromyalgia.  If you look around the room you'll see colleagues with the condition. They may know they have it or they may be struggling daily with a group of symptoms they can't make sense of. It will help us protect our members from discrimination,  job loss, uncertainty and the stress caused by sickness policy and make sure they can work safely.

Conference I move.


Conference resolves that Unite will create an information pack to raise awareness of fibromyalgia.

Fibromyalgia is a long-term condition that causes a wide range of symptoms including:

Muscle stiffness
Difficulty sleeping
Problems with mental process
Headaches and migraine
Irritable Bowel Syndrome

Estimates suggest as many as 1 in 20 people in the UK  could have this condition,  that's approximately 71,000 Unite members, with 7 times more women being affected than men.

Conference resolves to:

Create an information pack on fibromyalgia,  it's symptoms and how these may affect members in the workplace.
Make this available to all members.
Send this information to all workplace, equalities and health & safety reps.
Encourage reps to make employers aware of the condition so affected members are properly supported in the workplace.

South East/Women’s Committee

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