Category Archives: ESA

Government scrounger rhetoric isolates you, crushes your soul and worst of all, stamps on your hopes and dreams

I can’t speak for anyone else. But this is how, why, I often feel suicidal these days. Not actively but contemplatively.

There’s a difference between a major, catastrophic event triggering it and a slow pervading realisation that it might be your only genuine control in an unbearable situation. To alleviate suffering. The kindest thing you can do for yourself. That knowledge is often the only way you can face tomorrow.

I’m actually NOT depressed. But I am trapped in a mentally and physically exhausting environment. That’s damaging my health. That’s all but destroyed my quality of life. That promises only to get worse. And I personally do not have the financial or energy resources to fix it myself. Being single, isolated, without a supportive support worker or advocate, I am finding it so hard to get anywhere.

The government likes to portray people who are unable to hold down regular, meaningful employment, due to fluctuating health, as fraudsters, fakers, cheats and scroungers. Despite the law saying we qualify for ESA. [Employment and Support Allowance that replaces Incapacity Benefit]

Even if we don’t get enough immediate points to be found unfit for work, under DWP regs 29/35 we qualify if anyone would be at risk if we were found fit. Therefore we should be found unfit. That’s their way of covering the ECHR bit about a “state should not make a natural illness worse”.

Someone with a fluctuating condition, would have lots of absences. Pressure/fixed appointments/lack of autonomy in the real world of work, prevents us from pacing ourselves. And so our health and life quality deteriorates. Pacing is the thing that gives us a life quality. It means not overdrawing on energy. Staying just this side of moving line, always holding something back.

Just a £16,000 win on lottery or Premium Bonds and I’d be out of the system altogether. I’d no longer be in their statistics. I could move. Get proper rest. A win is unlikely but it’s the only glimmer of hope that keeps me going at times. I could develop paying hobbies. Doing as much or as little as I felt able without constant fear of losing everything.

A quarter of that and I could afford to move. Hire storage for a few months, hire a van for a week. Pacing, remember? Afford the month’s deposit. A month’s rent in advance and the current month’s rent, not to mention all the utilities, food and living expenses and the next month to keep a new landlord off your back until Housing Benefit was processed. Stress is exhausting. Exhaustion is dangerous.

Alone, without transport, without a credit card and little savings, but no debt thank God, the logistics are overwhelming. Try that when your health is adversely affected by pressure.

Oh they said on Twitter last night “if you’re hurting there’s help out there just ask”.

In Aug 2011 I desperately, and at great risk of eviction, asked Eastbourne Environmental Health for help with two neighbours, destroying my quality of life so much I was living ON MY KITCHEN FLOOR all winter.

They did nothing. I wrote again in the New Year, graphically. And again in Spring and Summer with thousands of logs. And still they did nothing. Meanwhile my ESA reassessment began in March and I was suicidal 247 for the entire period. An ATOS reassessment , is a terrifying and lonely place. [ATOS is the company charged with delivering the government’s evil work capability assessment]

In Sept 2012 in desperation I wrote to my MP. Finally 48 hr later, Environmental Health turned up, unannounced. But still they did nothing practical to help me escape my housing. They didn’t even give me a form. No noise was dealt with until Jan 2013 after multiple attempts to get recordings with dodgy equipment.

It lasted a few weeks and then new neighbours moved in and began slamming their door into my stud wall many times a day. The new neighbour is the son of the woman above who had previously made a death threat against ME. Because HER shower was daily, pouring through my ceiling and live cables, causing the ceiling to collapse after months of black mould and mushrooms growing from it.

By luck one night I caught her son (mid 20 s employee of UKBA I think) on video attacking MY letterbox whilst noise and door slamming was going on in the hallway below.

In Nov 2013 following 3 days of no rest due to having to be up waiting for an electrical inspection, day/time unknown .. I got a shitty bullying letter from Southern Water saying they were cancelling my budget card. Even though I was in credit. They demanded an immediate £14 which destroyed my budget until next payday. It sent me into a meltdown on Twitter.

That night, the guy next door slammed his door one time too many and locked himself out. At the time I could hear commotion and anger but no idea what was being said. Next thing a door was being broken down. My door was shaking. They are an arm span apart , closing into my perpendicular stud wall. With the anger and rage I could hear, and the shaking I could see, I froze in my chair. I thought he was coming through MY door any moment. A threat to that effect had previously been made when I asked him to close doors with a key.

The next day with microwave still on the floor, and boxes all over the place, as everything had to be away from the wall, two PCSOs turned up to do a Welfare Check. Never had them turn up before.

Although friendly, they were patronising and dismissive. “You can’t possibly be evicted for speaking out” they said. Despite having a s21 that has been in force since the original 6 mths. My having MEcfs is no reason I can’t cope with moving. It’s just in my head. Not because it’s a mammoth energy task. I told them the hassle with the neighbour was frightening, the noise was hell, and it probably had a disability hate/homophobic element. With MY copy of the CPS Homophobia guidebook on my desk …the PCSOs told me to “contact Terrence Higgins Trust”.

They claimed they’d go back to the station and do hours of referral work. Homeworks, East Sussex County Council Adult Social Services, GP, Comm MH …. Finally I thought maybe some joined up support would result in action. Getting re-housed.

By Mar 2014, a friend in the housing support sector elsewhere in UK, asked if I’d had a referral yet, and took it upon herself to refer me. (None of the other PCSO referrals materialised). A meeting took place, HOMEWORKS said they’d support my housing application. A few emails exchanged and I was told my case was closed by them…as their manager “insists on regular face to face meetings”. Something that is so disruptive to me when I’m struggling on bad days just to survive the #noisehell here.

Noise is incredibly distressing to people with MEcfs. I am surrounded on all sides pretty much 247. At times, because I can’t walk away the distress causes an aspie style meltdown. And yes, at times like that, if I had a gun, I’d blow my f**ing head off, just to make it stop. Action for M.E Noise Sensitivity – Sense and Sensitivity

And in April 2014, a few days apart, next door was yelping outside my door and his mother pounded her fist on my door

So I am back to square one. Unsupported, trying to get the hell out of this place before it kills me. With little energy to even submit a housing application file. Whether it kills me through heart attack, stroke from the stress, or whether I decide I simply can’t go on like this, alone with no prospect of re-housing and therefore no future peace, love, or happiness….

The government’s scrounger/faker rhetoric really takes its toll. It exhausts you, prevents you from following hobbies and passions. It isolates you, crushes your soul and worst of all, stamps on your hopes and dreams

How do you meet a soul-mate, life partner, new lover, if they’ve been exposed to government rhetoric . It’s exhausting justifying your existence to yourself on a daily basis, let alone *sell yourself* to them as someone who is worth their time. Someone who can support their hopes and dreams . Someone to hold them, love them and calm their fears? Someone who might not be able to hold down a full time formal job. But who might just be an ideal housewife, back room support for a professional? When so far, it’s taking me this long to try to get re-housed because I simply don’t have the energy to kick ass when I’m  in the middle of surviving it .

Oh and I ran out of time if I to pursue an Equality Act claim for the support charity failing to make reasonable adjustments….

As at March 2016 the hell is ongoing and in Nov 2014 the woman in the flat above subjected me to a disability hate incident which I recorded at the time. Sussex Police took NFA despite a string of other videoed incidents and clear pattern of harassment towards me. I told Julie Hickling of Env Health who reported me to the Safeguarding woman at ESCC, who in turn told me I was lying when I told her how long everything had been going on “In my experience, Environmental Health react quickly to noise issues.” Another missed opportunity.

So I have now compiled a file of all the related correspondence since Aug 2011 to the current time, including each time an agency let me down and it will soon be submitted to Local Government Ombusdman. Eastbourne Borough Council is responsible for failing to recognise their lack of action has prolonged my distress, put me in harm’s way and may yet cost more.

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Filed under Cameron welfare reform, ESA, MECFS, Noise Neighbour, WCA

ESA WCA IB Incapacity Benefit Reassessment Diary for someone with MEcfs Starts Day 1 14 April 2012

(Day 1-5 wk 1 of ESA reassessment)

Sat 14 April 2012

-DWP letter about reassessment from Incapacity Benefit to ESA arrives.
(Belfast / Newcastle)

-Demands phone call.

-Quotes number over 12yr out of date.

-Ignores last IB50 that clearly stated calls not made /received due to self harm suicide risk due to distress/pressure of calls.


(Not due to see another human -unless I go to a shop- for 11 days.)

Slumped to floor on opening DWP IB ESA reassessment letter.


Chest pain.

Tears turn to hysterical choking sobbing.

Screaming shouting – desperately trying not to self harm.

Punching walls.

Can’t think clearly.

Realise last IB reassessment took EIGHT MONTHS (with no tribunal)
[19June-14Feb following year]

Today, DAY ONE is APRIL 14th 2012.
Unlikely this IB reassessment will be complete until 14th DEC 2012 .
If it has to go to Tribunal which is very likely as I have M.E. then it will
not end until mid JULY 2013. And by ATOS’ torturous standards, a new one will begin within weeks of that.

Trying to work out why I should put myself through this hell? This is no quality of life. I’m not *allowed* to participate in society on a good day as ATOS regards that as reason enough to deny me the benefits to which I am legally entitled.

If I had the courage /strength, it would be better all round to end it all now & cut short my distress and suffering. I’m erudite, intelligent, perhaps it would advance the political cause.

I do not know how much I can endure.

ACTION – Day 1

-Write ON letter they’ve made me suicidal/self harm risk.

-Point out Equality Act.

-Remind them last IB50 had clear info on not making / taking calls.

-Demand Subject Access Request.

-Unable to photocopy /post/return until Mon (shop closed-no ink to print)

DAY 2 -Effects
All day/night alone.
Sobbing. Hysterically upset. Hyperventilating.
Punching walls /self harming/ suicidal.
No energy.
No appetite.

Eventually had to email Samaritans

DAY 3 -Effects

All day/night alone.
Sobbing. Hysterically upset. Hyperventilating.
Punching walls /self harming/ suicidal.
No energy.
Had shower

Left home for 20min after 50hours housebound/bedbound.
Only ate after forcing myself to get small take away.

DAY 4 -Effects

All day/night alone.
Sobbing. Hysterically upset. Hyperventilating.
Punching walls /self harming/ suicidal.
No energy.

Left home 15min to go to shop in eve.

DAY 5 -Action

ESA preparation- very stressed.
Took 1hr writing just 3x note form paragraphs explaining the minutae of how I need to chop washing up/laundry/housework into tiny 5-10minute mini tasks – over many days.

How I do bare minimum so as to conserve energy & not cross invisible line.

How I need to list things such as *put pens away*…to chop tidying up into manageable bits. Often days/weeks ahead of a completion date.

ie Washing up isn’t simply washing up.

It’s put stuff that needs washing up in the bucket.- Kitchen sink has been blocked for around 2yr now. Need to investigate with camera when I get around to it.-
Put bucket in shower tray.
Fill with instant hot from shower /kettle. (Less wasteful than heating tankful & not using within 24-48hr before it cools)
Leave to soak.
Sometimes this bit is done several times before I actually see bottom of bucket as it’s knackering & I have to keep laying down between bits so I don’t *cross the line*.

I live in poor housing, that hasn’t been inspected since early Blair years. Blind eye by Env H.
I’m surrounded by black mould if I open my door.
I have no outdoor access.
I cannot escape the noise.

I’m surrounded by selfish pigs for neighbours. Despite reporting Flat13 (Liam) on 22Aug 2011,with 114 itemised incidents, Eastbourne Borough Council have not stopped him. I put myself at risk of eviction by daring to contact the Council.

I now live on a campbed in my kitchen and have done so (1st on the floor until Nov when I bought campbed) since July2011. Eastbourne Environmental Health are fully aware of this.

88 hours a week I’m subjected to thudding weights slamming into foundations/party walls from City Gym.

Constant thudding noise impacts mean that I can rarely rest/ sleep as & when I need to. This makes pacing (not over-doing it/holding energy in reserve-not over-drawing energy) impossible.

I rarely get TWO hours of unbroken sleep. I am frequently woken after less than TWENTY MINUTES.

The arrival of my DWP ESA IB resassessment letter today, has now created a perfect storm.

It is my intention to log on here every step. I hope this log does not prove to be the basis of my inquest. I hope I can find the strength to survive this brutal process and not become yet another ATOS ESA Suicide statistic. But I can’t promise.

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Action for Happiness ~Don’t Make Me Laugh

So Cameron is promoting the new charity Action for Happiness. Go Dave, there you are publicly being all nicey nicey to poor sad lonely misfortunates.

Little do they know Dave, those happy little bunnies that look upon us with pity,the misery that YOU & the viscious policies of your Government inflict. In direct contrast to this fluffy public shit, YOU through ATOS ESA WCA cause the most profound misery.

Oh get fresh air AFH says ~NO Dave, being seen outside on a ‘good day’ risks my being accused of being a thief, a cheat & a fake.

Get some exercise AFH says ~Dave, on a rare ‘good day’ I’d love to but the ignorance & vindictivness of the right wing press means that to do so, eveb if I was house/bedbound for days before & after to enable me to get out, would risk me being accused of being a thief, a cheat & a fake.

Take care of yourself AFH says ~Dave listen up, your bullying policies implemented in an incompetent & distinctly viscious manner by ATOS, means that for me to even wear clean matching clothes risks me being accused of being a thief, a cheat & a fake.


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Open letter to David Cameron PM ~ Hardesthit Virtual Resistance

The Right Hon David Cameron [Open Letter]

Re: Bullying and Hate Crime

I was brought up with the understanding that it’s wrong to pick on people. That bullying is vile & unacceptable. Indeed, there have been many public awareness projects in recent years about this issue. Low life scum is what bullies are, after all (apologies to useful algae). Bullying costs lives.

To my knowledge, I’ve been a decent, well educated, law-abiding citizen. I keep myself to myself. Yet for the last few years I have been subjected to a sustained, & somewhat apparently co-ordinated smear campaign of abuse & bullying. Barely a week goes by without incident of one sort or another. I’m called vile names. The threats to me, the lies told about me & those who are like me; the discrimination towards me, being disbelieved & the systematic attempts to destroy what’s left of my life are unbearable.

There appears to be no respite & no course to redress. I really do not know where to turn. These relentless attacks, which I’ve been pre-warned are likely to get much more personal & severe very soon, are having a huge impact on my ability to cope with everyday life. Not exactly what one needs for good health & well-being.

I used to be a proud Tory, which is fine if you are doing ok. But when through no fault of your own you are living in slum housing, practically in the gutter, no matter what your natural political pre-disposition; voting Tory is never going to be an option I could stomach again.

I thought perhaps you would like to know as I’m aware how highly you rate the Happiness & Well-being of your citizens, I can’t wait for the next questionnaire.

Yours sincerely


P.S. It’s probably irrelevant, but I happen to have M.E. I could give you the names of the bullies but I’m frightened of the personal repercussions. The nationwide vilification of people with M.E. on a practical day to day existence level means terrorists under control orders had more freedom & access to basic things like fresh air, sunlight & free association, let alone a bit of exercise on a rare & precious ‘good day'(for me personally it is important to do if I feel able).

If it looks like disability hate crime & feels like disability hate crime & sounds like disability hate crime …..

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Protest Against ATOS Virtual Resistance


Protest Against ATOS wk begins

Dear Chris Grayling……I am writing to express my support for the week of protests against Atos Origin.

Atos Origin has recently begun a £300 million contract, awarded by the Conservative-led Government, to carry out ‘work capability assessments’ on all of those claiming Incapacity Benefit.

It is claimed assessments are to test what people can do rather than what they can’t.

However, I believe the real purpose is to strip benefits from as many people as possible.

These tough tests for sickness benefit are ‘all about saving lives not saving money’ claims Employment Minister, Chris Grayling.

I fail to see how that can be the case especially as this system of testing has already led to people with terminal illnesses and severe medical conditions being declared fit for work and having benefits cut.

Disability charities have heard reports of people so distressed that they will have benefits cut that they feel life is not worth continuing and have stated that they have had people say they will end their lives because of this set of health and benefit cuts.

GPs are being ignored in favour of decisions made by Atos Origin.

Many many conditions, change on a daily basis and the future of people unfortunate enough to be suffering from these kind of conditions should not be decided by profit-making companies such as ATOS but by medical specialists.

We are constantly told by the gutter press about the ‘sicknote fakers’ who are cheating the system. But we rarely hear about the tens of thousand of genuinely sick people who are turned down for the Employment Support Allowance but go on to appeal and win. Two thirds of applicants are found ‘fit to work’, yet 40% successfully appeal.

Plans announced for the scrapping of Disability Living Allowance have also revealed that this intrusive testing is likely to be extended to everyone on some form of disability or health related benefit.

Disabled people, their friends and families have a lot to fear. There is real fear and concern about the outcomes of these assessments being carried out by this kind of company rather than specialist medical professionals. Atos Origin do not just do health related testing. They are a global IT and Consultancy company with offices around the UK. One speciality they boast of on their website is having: ‘a team of Organisation and HR professionals who undertake the analysis, design and execution of headcount reduction.’

Assessment of the sick and vulnerable should be removed from ATOS and handed to medical professionals with specialist knowledge who can help the most vulnerable of our society instead of hindering them and placing them on the scrap heap.

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ME CFS Stress and Isolation

a friend dismissed my requests that they read a few articles on the ME association website (Guardian Burnley report & Changes to ESA WCA Descriptors among them)[I’ll do links when I next get on net other than by phone]. They meant well but seem totally oblivious to the fact they have repeated the pattern of not being listened to & not being believed.

In reality I feel as if I have NO ONE to talk to, NO ONE to keep up to speed on my behalf. Feel totally isolated & alone.

The pains in my chest & up my neck have returned (had if for the entire EIGHT MONTHS that my last WCA Assessment took.) Upped the aspirin to be safe.

And the anxiety dreams have also returned. At worst they are about ATOS Med Assessment & are upsetting in the extreme.

At best they just involve being made homeless. It’s always about being disbelieveved & being pushed to total breakdown.

I often read of people with MS hailing that they” happen to have MS but don’t let it define them.”

I envy that they are allowed to get on with their lives & process their lost lives. The stark difference is that they have black & white test results they can wave in the faces of the disbelievers.

People with ME PWME MECFS in UK reliant on the benefits system do NOT have the luxury of ‘proof’. The constant vilification of us, the whispering campaigns seem purpose made to further isolate us & punish us for the failure of the medical profession to invest in biological research.

I’ve had enough.

The fact that under the previous assessment criteria someone along the line ‘believed’ us enough to award us IB is NO GUARANTEE whatever that we will qualify again. That’s what we want you to know. That’s why we ask you to read the FACTS about what is happening every day to people who like us, previously qualified under the old system.

We are exhausted from existing in limbo. We just want & need to know that you know. We need know that you are protecting us & that includes being heard.

Trust me, if you are a friend of someone with MECFS ~ each time you fail to listen, each time you forget to do something you said you would, each time you are ‘dismissive’ even accidentally, you are causing deep offence & hurt to someone you may profess to want to love & protect.


Filed under Cameron welfare reform, ESA, MECFS, PWME, WCA