Tag Archives: Fibromyalgia

I still don’t have the support I need to live a full life

Josie, from Bristol, was a nurse until 2008, when she developed a number of impairments which affect her health and mobility.

She has most recently been diagnosed with mast cell activation, a condition which affects immunity and increases the chances of anaphylaxis attacks.

In 2008, I was well and working as a nurse. Then I got ill, and just didn’t get better. I was eventually diagnosed with fibromyalgia, a neurological condition which causes pain all over the body.

I then suddenly developed idiopathic anaphylaxis – life-threatening allergic reactions caused by a range of things, from heat to pollen and perfume. It means I need to have a support worker with me when I go somewhere new in case I have a reaction.

My other health problems mean my mobility is limited, and I’m often ill in bed for several days at a time.

I recently got an electric wheelchair, which has been amazing and has given me some of my freedom back. I have two children who live with their dad, whom I see regularly. But I still do not have the support I need to live a full life.

Some days I barely get to speak to anyone

At the moment, I get three short visits a day from a care worker to cook my meals, help me shower, and keep the house clean. I get two hours every two weeks “social” time which at best on a good day gets me over the park and back .

It’s not long enough to join in any activities but I value this time hugely as it’s uninterrupted time with actual real conversation, not just “what do you need to eat?” or similar.

My basic needs are met – I’m clean and I’m fed. But I haven’t got enough support to actually get me out of the house. It means that some days I barely get to speak to anyone, let alone have a social life.

If I get an infection and have to ask my carer to pick up a prescription, I don’t get to have a shower that day. There just isn’t enough time.

Josie, a disabled woman, and her daughter

What the right support would enable me to do

A little more support – for example, a support worker to go with me to new places – would give me so much more opportunity to take part in life, but at the moment that feels like an impossible utopia!

People like me, who were professionals and could make a contribution with the right support, are being cut out of the workforce.

Working in an office or a hospital isn’t really possible for me, but I still have skills and experience that I would like to use, if I had the means of doing so.

Everyday equality by 2022

In the end, it is a question of equality. In a fair world, I would have the support I need to live my life, and the opportunity to fulfil my capabilities.

I’d be able to go out and have a social life. I’d have support to do some work, maybe based at home where I would be able to control my surroundings. Instead I don’t feel like I’m living, just existing.

Tell us what living independently means to you  

Scope is calling on the next government to improve social care for disabled people, so they can live the life they choose.

You can read more about Scope’s priorities for the next government and how you can register to vote in this election.

What does living independently mean to you? What would getting the right support from social care enable you to do? Email the stories team and tell us your experience – stories@scope.org.uk

You can also join the conversation on social media by using the hashtag #EverydayEquality.

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.