A Hostile Environment - my personal story

In 2014 I had my benefits, my main source of income, stopped for almost 3 months. I was a single parent and I was receiving disability benefits because I was assessed as unfit for work due to chronic illness. What happened to me is known as a sanction. I want to tell you about the impact it had on me, not just because it was one of the most stressful and distressing times of my life, (worse than divorce), but because my case is shockingly commonplace and could be on the increase with the introduction of Universal Credit.

The reason I was sanctioned is that I couldn’t physically do the activities I was being forced to do. My chronic illness causes severe exhaustion and very poor stamina. But throughout 2013 and 2014 I kept receiving letters compelling me to attend employability workshops for 18 hours a week, which involved an hour’s journey, including a ¾ mile walk, each way, three days a week. Each letter threatened that my benefits could be cut if I didn’t comply.

I’m not a natura…

Reclaiming Chronic Illness - a discussion paper

An Introduction to the Chronic Illness Inclusion ProjectForeword by Dr Simon Duffy, Director, Centre for Welfare Reform  "I must admit that I had no understanding of the reality, severity and widespread nature of chronic illness until very recently. It was only as we began our own efforts to combat the UK austerity programme, which began in 2010, that we discovered that many of those people we were fighting beside were people with a chronic illness. And, it was only by listening to their experiences that I understood that there were layers of injustice that I had never truly appreciated."
A key aim of the CIIP is to translate our experience of chronic illness into the social model of disability, beginning with the distinction between impairment and disability. In this paper, I argue that, ‘chronic illness’ is a self-ascribed identity which implies both a distinctive form of impairment (in our case, bodily malfunction) and a shared experience of disability or dis…

Stop Changes to Access to Work

On Tuesday 24th October, campaigners, service users and MPs gathered at Portcullis House to launch ‘Barriers to Work’ – a report authored by Catherine Hale and commissioned by Inclusion London, based on a survey carried out by the StopChanges2AtW campaign.

‘Barriers to Work’ looks at what happened with Access to Work and how can the scheme be once again fit for purpose.

The meeting was chaired by Debbie Abrahams MP, Shadow Secretary of State for Work and Pensions and Sean McGovern, co-Chair of the TUC Disabled Workers’ Committee. Ellen Clifford from the StopChanges2AtW campaign introduced the recommendations for improving Deaf and Disabled people’s experience of Access to Work.

#MillionsMissing protest London 12.05.17

My address to crowd outside Department of Health, Whitehall
Our small gathering here today is just the tip of the iceberg.

We are standing in for the Millions Missing worldwide: the millions of people affected by the multi-systemic disease ME aka chronic fatigue syndrome who are too ill to be here today.

There are 250K people in the UK with ME and many can’t be here because they've been trapped in bed for years by this most crippling of illnesses, and they’ve been abandoned by our healthcare system and forgotten by the world.

The shoes you see here belong to some of those who can’t be here in person but who want you to hear their voice and witness the injustice they face. And they want the Dept of Health to listen and to act on this injustice.

The neglect of people with ME by governments and their health authorities is a global scandal. And there are protests like this one happening across the world today.

But here in the UK we’ve endured something perhaps even more cruel than n…

Be a part of the Chronic Illness Inclusion Project

Posting up a selfie from my sick bed and dictating into my smartphone is my political action to refuse invisibility with chronic illness.

It’s time to get out of my comfort zone and get personal, because I really need a favour from you.

I normally leave myself out of my activism. I prefer the impersonal world of policy research. It’s not that I think this is a better way to achieve change necessarily; it's just that I’m a natural introvert and a bit of a geek.

But today is a severe ME day for me. The sleep thief came in the night, parked its truck on my chest, set energy-sucking leeches onto my limbs and poured sand through my eyesockets into my brain. So the researcher brain is on strike.

My new project with the Centre for Welfare Reform is all about refusing the invisibility that comes with chronic illness. It's about building a bridge between the chronic illness community that exists online and the real-world people who make the decisions about our lives.

Through all t…

StopGET - petition against unethical research trials of Graded Exercise Therapy on children with M.E.

Sign this petition to prevent risk to children's health from an unethical research trial
Imagine you get a mysterious and highly debilitating illness. It takes away much of what you love in your life. Your doctor says there may be a treatment that can help. It’s not a drug but a behavioural reprogramming therapy developed by psychiatrists. It’s safe, she says. And proven to be effective in a study published in The Lancet.

Sounds odd, but you go ahead with the therapy with an open mind. It consists of getting you to gradually increase your activity levels and exercise. Not only does it not improve symptoms but the behavioural regime prescribed actually makes your illness worse. Your therapist is unsympathetic and says you are showing a negative attitude and that your entrenched belief system is what is keeping you ill. When you become so ill you can’t physically get to the clinic any more, your therapist berates you for not complying with the treatment, and strikes you off their cl…