Chronic Illness Inclusion Project

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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.

Right now, posting up a selfie and dictating this into my smart phone is all I can do to refuse invisibility.

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 the reports I’ve written (some published and some not) and the policy influencing circles I've dipped into I came to one stark conclusion. I’ve covered ESA, WCA, PIP – those acronyms that haunt our lives - as well as social care and employment support. And I realised that when it comes to the landscape of disability policy, chronic illness is not even on the map.

Like most people, politicians and policy makers have a crude understandings of life outside their experience. To many, “illness” is something you either recover or die from; while “disability” is about missing or defective limbs or senses. The notion of chronic illness doesn’t even figure.

Some groups of disabled people have made strides in overcoming this. There are growing self-advocacy movements for mental health service users, people with learning disabilities, neurodiversity, and even dementia. They also have well established professional charities who send bright, ambitious and politically savvy young people to lobby government on their behalf.

And what do we chronically ill folk have? We have our contested diagnoses, our stigmatised identities, we have our coping strategies and our online support groups. We have small charities focused on research and treatment for our specific conditions. But we have no one sitting around that table with those who design the policies to represent our needs, our interests and our rights. We do not exist as a group broader than our diagnoses.

I believe we "spoonies" are a constituency with common interests. You may love or hate the term but you probably know what it means and whether or not you are one. What I'm trying to do is get us organised so we have a collective voice.  I want us to have a seat at the table. 

That is going to be hard to achieve.. How do we overcome barriers like not being able to leave our homes to get seen and heard and persuade people? That is the burning question we will be addressing. 


But if you’re still reading this you can help take the first step right now. So please, do me a favour and sign up to this mailing list.

This is an official, lottery funded project, where numbers count. We won’t tear the walls down in a day, but by subscribing to this project you are standing up to be counted. It is a first step to saying that we are here, we are many, and our lives matter.

Thank you.

#MillionsMissing protest London 12.05.17

This is the draft of an address to be given in front of Dept 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 neglect of our disease; we’ve had a deliberate cover up. 

I want to tell you about it because you won’t read it in the press, and your doctor probably doesn’t even know about it.

Here in the UK we’ve endured a whitewash of our disease that has propelled the careers of a powerful group of clinicians and researchers, while we patients have seen no benefit, and many of us have even been harmed by their programme.

I became bedridden as a result of their so-called treatment.

The scandal of ME in the UK goes by the name of PACE.

PACE was a research trial of treatments for ME aimed at modifying patients’ thoughts and behaviour. It was based on the notion that ME is not an organic disease but a psychosomatic disorder, a view rejected by The US Institute of Medicine and the WHO. 

Among the international scientific community PACE has become a byword for dishonest and unethical research practices, for the vested interests of an elite taking priority over patients’ health.

PACE researchers manipulated their methodology so you could be more disabled at the end of the trial than you were at the beginning and yet be classed as recovered.

PACE researchers illegally withheld their data from fellow scientists to avoid scrutiny of their methods.

PACE researchers ignored the overwhelming evidence showing that their graded exercise therapy made many people’s illness even worse than it already was.

PACE researchers then said that those patients who dared question their results were a deranged or extremist mob just out to make trouble.

PACE research showed no improvement in ME on any objective measures from their treatment of cognitive behaviour therapy and graded exercise, in trial that costs £6 million of taxpayers’ money.

And why aren’t these researchers being held to account? Follow the networks of power and influence in UK medicine and you will see that PACE researchers and their great patron occupy the highest of ranks in the medical establishment. Their reputations appear to be untouchable. We the patients are allowed no say in

Meanwhile PACE and its discredited hypothesis continues to drive NHS policy on ME, and in turns impacts how people with ME are treated by welfare and social care systems. Patients are still routinely told to get out and exercise. People’s health continues to be put in danger.

Right now children are being subjected to trials of graded exercise therapy by colleagues of the PACE team at the University of Bristol.

The Dept of Health can no longer stay silent. The Dept of Health must not be complicit in the scandal of PACE. 

We demand an end to trials of graded exercise therapy on children.

We demand that NICE reviews its guidelines on ME to remove the harmful influence of psychiatrists associated with PACE.

And we demand that Dept of Health take the lead in promoting the new research agenda emerging from outside the UK which gives us hope and consign the PACE agenda to history.

The millions missing here today are crying out for our government to invest in research into the causes and treatments for ME. We need science that is honest and ethical and puts patients first.

The fight against the rotten WCA and ESA system must go on

So the Conservatives have found their Compassion. Last week, Secretary of State for Work and Pensions, Damian Green announced that retesting people with lifelong conditions and progressive diseases like Parkinson’s every six months to see if they’ve recovered is pointless. Under new Employment and Support Allowance (ESA) rules, reassessments for those with certain incurable conditions will be stopped.

So does this mean the legendary cruelty of the Work Capability Assessment, the test to decide who’s fit for work, will become a thing of the past? 

Image courtesy of @RednorthUK

With this latest policy nod to fairness and compassion, the Tories appear to want us to move along please, to bury all mention of the WCA and avert our eyes from the massive policy failure of the broader Employment Support Allowance (ESA) in getting more disabled people into work. ESA will become merged into Universal Credit and lost in its devilish complexity. And a shiny new Work and Health Programme is awaited for people judged unfit for work. Very little is known about it. The Green Paper which will announce the policy has been delayed for months. 

What seems certain is that the brutal and nonsensical criteria of the WCA will remain in place, as will the punitive rules and regulations governing the receipt of sickness benefit. Despite new names, there seems to be no plan to dismantle the architecture of ESA, with its questionable legality and its callous assault on disabled people’s rights.  

Work Capability Assessment

The awaited Green Paper on work and health will not overhaul the Work Capability Assessment or challenge the ugly parody of a “biopsychosocial”(BPS) model on which it is based. The BPS model of disability used in the WCA does not address the structural barriers in the labour market that lock disabled people out of employment. Nor is it grounded in medical science but on the ideological premise that most people claiming sickness benefits are malingering. Its veneer of scientific credibility, long exposed by campaigners like Mo Stewart, has now been busted by academics as the antics of a discredited US insurance company to avoid paying out on disability claims.

The WCA notoriously assesses spurious tasks like picking up a pound coin or putting a handkerchief in a top pocket as a proxy for fitness for work

The WCA is based on neither a social model, nor a medical model, but a Medieval model of disability which blames victims for their misfortune.

Conditionality

The Green Paper is unlikely to alter the harshness of the conditions that some disabled people have to meet in order to receive benefits. These are often akin to mountaineering without a safefThis is called conditionality. Research in 2014 showed that three in five people in the ESA Work Related Activity Group (WRAG) were forced to do work preparation activities in return for benefits that were incompatible with their health condition or impairment, and yet no adjustments were made by their job coach to enable them to comply. This constitutes potential discrimination by government officials and their private contractors against the very citizens they’re supposed to be “supporting”. 

Sanctions

The Green Paper is unlikely to change the fact that disabled people can be stripped of two thirds of their income under ESA by a “secret penal system” which judges them guilty until they prove themselves innocent.  This is the benefit sanctions regime, a punishment system for those who fall of the cliff-edge of conditionality. More than 4 in 5 survey respondents were terrified of being sanctioned because their health or impairment prevented them from doing compulsory tasks, which probably explains why their health, their confidence and their aspirations all plummeted as a result of being in the WRAG. 25% of ESA sanctions were successfully challenged and overturned last year. But how many more were prevented from challenging a sanction by lack of legal advice and how many experienced destitution while they waited for a sanction to be overturned?

Destitution

Perhaps worst of all, the Green Paper won’t reverse the shocking £30 pounds a week cut to the livelihood of disabled people judged unfit for work but placed in the WRAG. From next April disabled people faced with long term unemployment due to the severity of their health condition or impairment will be forced to live on around £73 a week and probably have to choose between eating or heating. This is the same low rate of benefit as JSA, designed to tide non-disabled people over for short periods of unemployment until their next job. This policy legacy of George Osborne aims to motivate ill and disabled people to recover. It is a strident breach of disabled people’s right to an adequate standard of living under the UN’s Convention on Economic, Social and Cultural Rights and a breach of government’s duty to ensure the improvement, not regression of the living conditions of its disadvantaged citizens.

In total ESA and the WCA have been responsible for turning back the clock on the disability rights agenda. ESA is a policy that casts disabled people as non-citizens with no right to equality, dignity or freedom, who must be coerced and corrected for their own good.

So we will not accept crumbs of compassion and move along. We must all keep up the fight against a benefit system for ill and disabled people that is abusive and rotten to the core.