I was fighting to stay in work – #100days100stories

Jacqueline picGuest post by Jacqueline, who turned to her entrepreneurial skills after being forced to leave her job due to a fluctuating condition. But she’s still fighting for the support she needs to fulfil her work ambitions. She shares her story as part of our 100 days, 100 stories campaign.

I have always been interested in reducing inequalities. It surfaces at times when I see something that just isn’t right and suddenly I find myself challenging what is happening and developing ways to improve it.

This impulse led me to my first experience of being an entrepreneur. Actually it was the second – my first was selling old toys at the end of the path when I was little.

I had seen how disabled children were being denied equal access to play and childcare. So I developed and managed an inclusive play and childcare scheme for Bolton. It was built on the principle of the social model of disability so that disabled children had the same access to play and childcare as other children.

A dream role

This all led to what was a dream role for me – working as access and inclusion manager for Bolton Council. It involved rolling the model I’d developed out across the borough and eventually around the country. It involved speaking at conferences, sitting on national advisory boards and developing national policy guidelines.

I was at the height of my career and enjoying every moment of bringing significant and long-term change to this area. But my world came tumbling down when I started to experience some frightening changes in my health, which was later diagnosed as Fibromyalgia.

Fibromyalgia is a fluctuating condition that affects around one in 20 people in the UK. There’s no cure and it affects everyone differently.

My mobility is affected which means it takes me a while to get going in the mornings. I find my mind is ready but my body isn’t. It’s as if someone has pulled my plug out – my energy levels just drop and I have to stop what I am doing.  I experience chronic pain and fatigue, IBS and disturbed sleep. I didn’t realise at first that not managing the symptoms results in cognitive dysfunction – the harder I pushed back against them, the worse it became.

Fighting to stay in work

I was also fighting to stay in work. My employers were refusing to meet the recommendations made through Access to Work, a scheme that provides funding for workplace adaptations, specialist equipment and transport. After an 18 month battle that ended in a tribunal, the process was taking its toll on my health and I felt there was no option but to resign.

I suddenly found myself moving from a secure job and a good salary to incapacity benefit.

During this time I set up a local support group for people who were in similar circumstances. I also tried to get back into mainstream employment. But the interviews were a disaster. It seemed understood that you might need reasonable adjustments once you had the job, but not in the process itself.

Like me, other members of the support group were having problems staying in work and finding other positions when they lost their jobs. I turned my efforts to developing a workforce retention programme to support our members to stay in work. I had quite a lot of success particularly with Sainsbury’s and the NHS.

Access to Work for entrepreneurs

I decided the only way forward for me was to become self-employed. I found gaining support through Access to Work involved substantially more assessments and questioning about my condition. The scheme didn’t seem to understand entrepreneurship, or chronic and fluctuating conditions.

However, I was eventually awarded the support I needed and was able to enjoy a successful working life once more. I developed an inclusive entrepreneur programme aimed at introducing people who face barriers to mainstream employment, to the possibilities of starting their own businesses. I also launched a social enterprise called the Inclusive Entrepreneur Foundation.

Unfortunately my health deteriorated due to complications following a routine operation. After further battling, I was able to get the support I needed to continue working through Access to Work. But the recent restructure of the scheme has now led to the total loss of my award.

The fight continues

I’ve appealed the decision and have been an active campaigner in highlighting the impact changes to the scheme are having on disabled people. If I’m not successful in the appeal, I will be forced to close my business and return to what I believe is now termed Employment and Support Allowance.

For too many disabled people there are barriers to entering, staying in, and progressing in work. Scope’s new report out today shows the economic impact of enabling one million more disabled people to enter work by 2030. 

Find out more about our 100 days, 100 stories campaign and read the rest of the stories so far.

2 thoughts on “I was fighting to stay in work – #100days100stories”

  1. Reblogged this on Chaos, Cats and Chronic Pain and commented:
    What an amazing lady! But what a sad yet all too real snapshot of some of the barriers facing disabled people in the UK today.
    I am not sure of that figure of 1 in 20 – that’s 5% – it seems very high. But Scope is a well established charity – they should know.
    Having said that though, the flipside is that in the UK we don’t have the struggle our friends in the USA have of affording medical care, or of having difficulty obtaining adequate pain relief.
    I have no suggestions to offer. Everything is relative.
    But I thought this was an interesting article worth sharing.

  2. Today it is difficult to support our families with benefits,the government are making things so difficult for the disabled and long term unemployed a like.
    Once we do find work it is very difficult to get by with all the added stress of bills and medical treatment for people to cope.

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