The Ill Represented

A discussion by an ill and invisibly disabled citizen negotiating with life.

A Bad State

I’ve been a bad way these past two weeks. I feel overwhelmed by everything. I am in so much pain that I can no longer describe it, the sore bits have all merged into one so my whole physical and inner self feels engulfed in fire. I suffer with an unexplainable guilt and can’t process much without feeling a rush of panic. I fear the phone and the letterbox dreading what extra burdens may be sent my way. I try to distract myself from the pain and write/type as it’s the best means I have for momentary distraction and whilst I take small comforts in being able to post, to feel I have achieved something (however small), sentences are taking longer to write and some posts (even small ones) are taking a day or days to write.

I have no doubt that an inward focus on examining the minutiae of my symptoms, on being forced to justify myself, the burden to prove a truth (my innocence), the stress in evidence gathering, dealing with a system that refuses to listen and the uncertainty of the future has made my health dramatically worse and my doctor agrees. The short-term focus of the government cuts, demonstrated by an unfair and dogmatically cruel administratively-led ‘health’ assessments, has meant that I have had to see more doctors and take up doctors time in asking them to write often repetitive letters. In making me sicker it means that I will be using up more health workers time, using more medication and will be out-of the job market longer. This short-termist obsession with quotas and stats (not people) will end up costing the country more financially as well as morally.

The £12billion cuts to welfare and the abusive system of ‘re-negotiating’ illness and disability to fit a short-term political agenda is a phantasm, an illusion that is only delaying future nightmares. The welfare system and it’s deep cuts are one of the cons that the Conservatives have been peddling.

N.B. I have written three times in three weeks to the DWP and still no replies.

A short update (ish)

I had a bad encounter on the phone with the DWP and Health Assessment Advisory Service whilst trying to sort out some issues about my appointment with them on Thursday. After misinformation and a lot of patronisation from the two agencies I got sicker, very sick and ended up in the emergency department on Saturday night. After some strong medication I finally got some rest on Sunday and returned to my GP to get my medication upped and some extra ones for good measure. After my application for ESA and PIP (ESA in particular) I have got a lot sicker. At a time when I should be resting and hopefully recouperating with support from a state system that I have paid into they have systematically and deliberately sought to make the worst time of my life harder. I am incredibly angry, but I am too exhausted to be of use at the moment – I lack coherency and tact. Whilst the DWP demands more evidence of the same facts and is requiring my doctor to give more evidence when my kind but overworked GP is baffled to why a medical ‘fit note’ he wrote is not good enough if for them and why his evidence and qualifications are not sufficient enough for the administrators he was as exasperated as me after giving him the demands of the DWP. My GP’s response was ‘I think they are harassing you, the had my note only three days ago.’ Thankfully my GP is supportive and has written a note to the Health Assessment Advisory Service stating that I should be having a home visit if they are choosing to ignore the previous evidence sent that argues for me to be exempt from assessment process at this time. Apparently evidence gets sent to DWP postal centre that is then sorted, put on a system and then passed on to the local areas that make a decision and it takes a minimum of one week for the evidence to reach the processing stage (although one of my letters was ‘lost’ for three weeks at the post sorting stage). Having learnt this, I said I would not get a response to query about the decision to send me for the assessment until after my appointment was due so what would they advise now – you need to tell the Health Assessment Advisory People. I spoke to this less than charming lady who said I had to attend and I said I can’t, I’m too unwell, she said I had to. I said PIP gave a home visit why is it not possible for this appointment? She said I have to request a home visit (ah so a home visit is an option?) and get evidence from a doctor and send it to them super quick, she then states that even if the doctor requests a home appointment it still doesn’t mean I will get one (after all what do doctor’s know?). I said that if I had known about my right to request a home visit I would’ve had all this sorted earlier. I also re-stated that my summons to this assessment  was being challenged by extra evidence submitted to the DWP but it seems it will take them weeks to send the evidence to the right place. The Health Assessment people agreed that nothing would be sorted out by Thursday so I was given a new appointment on 30th June and I will have to contact them nearer the time to see if they have granted me a home appointment. So the wait continues.

Two things came up. The DWP claims everyone has to go to a Health Assessment. This is not true there are special circumstances and special rules that mean some people are exempt – misinformation 1. DWP says they (Health Assessment Advisory Service) will only give you a home visit if you request one, but I was unaware of this option as it was not mentioned on the appointment letter or on the official Job Centre booklet that talks you through the Health Assessment process – misinformation 2. Health Assessment Advisory Service mentions they doe home visits if need on their corporate website yet according the lady on the phone at the Health assessment place they don’t have the resources for this and it is not often done – how can this private company be poorly equipped to deal with sick and disabled people who are often stuck in their home when a rival company Capita can mange 60% of their visits in home? Is this another private company issue where millions are exchanged for poor service from the start or is it part of their deliberate ploy to force people into a situation that is rigged from every angle so they claim that if you were able to attend the assessment you can’t be that bad choosing to ignore all the hurdles that have to be overcome to get there and the damage that people will be forced to endure at home in silence.

The Health Assessment Advisory Service is run by the company Maximus it has nothing to do with healthcare, medicine or treatment. It’s purpose is profit. When you are summoned to them you are a claimant – not a patient. Their client is the DWP, it is the DWP that sets their targets. In order to keep the lucrative contract with their client the DWP they make decisions that solely benefit the DWP, we as claimants have no rights in this transaction and we hold no weight in this relationship. In a weird way it is not about us – it’s numbers on a form (points), numbers for corporate targets  and numbers of targets reached equals profit – we, as people, as individuals feature nowhere in this equation.

From what I also gather the form we fill in for ESA with work capability elements is assessed by them and not DWP despite DWP asking for me to send evidence to them. I am challenging the process that believes I am well enough for an assessment and  Maximus say they only do what DWP say but if Maximus are doing the ESA questionnaire that decides if people go for an assessment then they do decide what happens next in the process. If you are declared as being in the support group based on evidence with your form then you don’t need an assessment. I don’t believe that my initial form was looked at with regards to it’s evidence as some was on it’s way and the health professionals I listed have not recalled being asked any additional information which I said they could do if more details were needed to evidence my claim. I believe that Maximus are just putting everyone through to assessment stage and are not seeking evidence themselves that people have said they could ask for. The burden is on us to provide evidence which is much harder for us to do as : we are ill, we don’t know exactly what to ask for, wed don’t feel comfortable asking overworked medical staff to write highly detailed letters and medical staff don’t know exactly and in what detail or context to give evidence needed. It is ludicrous that exhausted people are being compelled to pester over-worked medical staff for evidence that shouldn’t be needed as many of these doctors have given notes previously.

This was a little longer than I first thought. I’m a little drowsy at the moment so sorry if it’s not coherent. Just wanted to update.

THIS is what Chronic Illness looks like.

Indisposed and Undiagnosed has highlighted the ignorance that many of us who have an invisible illness suffer from on a regular basis. This ignorance is incredibly harmful to the individual and destructive to a community of people who fight everyday for themselves and their rights to be recognised. x

Indisposed and Undiagnosed

You all obviously know about the irritating assumption that we are not sick, because we don’t LOOK sick.

People associate illness with common physical effects like pale skin, an agonised facial expression, weight loss, tubes coming out of our noses, a tumor or wound that is VISIBLE.

What does Chronic Illness look like?
What do our symptoms look like?

N O T H I N G.
They are I N V I S I B L E.
They cannot be seen, but are very much REAL.

So, lets set the story straight once and for all.
THIS is the face of Chronic Illness:

This is what Chronic Illness looks like. Nauseous – Dizzy – Nerve Pain – Neck Pain – Stomach cramps.

I really encourage you to take a similar photo of yourself, and post it with the title “THIS is what Chronic Illness looks like“.

Tag me in it – reblog…

View original post 40 more words

ESA Health Assessment and Hidden Rule

After going through the stress of the PIP health assessment I have another to attend on June 18th for my ESA (Employment Support Allowance). I was surprised, indeed shocked at having received this health assessment appointment, or work capability assessment, on the 18th as for months now I have been declared unfit for work and have supplied the necessary medical documents to support this. I am summoned to attend on the 18th and my benefits may be stopped if I fail to attend the appointment. The appointment will be held in my city centre and may last up to an hour. I am now panicked!

After researching online about what this assessment will entail I was horrified to discover that every stage of the appointment I will be observed and analysed in minute detail and in circumspect ways. For example the way you travel to the appointment will be used as evidence against you (because that is what we are dealing with, a system that is designed not to be impartial but to disprove your claim). If you travel by bus claimants have had that used against them as it is assumed they can stand in a queue. A friend even had the fact that she took her daughter to school used against her despite her having to sleep afterwards. I was feeling concerned that despite doctor’s notes declaring me unfit for work I was been pushed into this assessment through fear of benefit stoppage yet if I do attend my ability to attend will be used against me despite the pain and fatigue it would cause. I am feeling trapped. Whilst researching my options I found that:

‘[a] regulation that may apply to some people
with M.E. is Reg 29 (2)(b) of the ESA regulations.

This says that someone who is “suffering from some specific disease or bodily or
mental disablement and consequently there would be a substantial risk to the
mental or physical health of any person if they were found not to have a limited
capability for work”is unable to sustain physical or mental activity without
experiencing serious consequences.

This could include increased fatigue with progressive deterioration and a
worsening of symptoms if s/he continues to be active above his/her own level.
This could lead to a serious deterioration in health or a relapse.’

This section has been taken from page 11 in the Action For M.E. guide that can be found using the below link:

This mention of The Exceptional Circumstance Rule could apply to many of us with chronic conditions. The guide advises that any application under this rule will need to be accompanied by medical evidence. Whilst this rule may not be easy to get enacted I feel that it is worth pursuing and at the very least putting the claim in so it will be on record in the event of an appeal. I am in the process of writing a letter and gathering my evidence to show how I feel that the Exceptional Rule applies in my case. How can a doctor who declares you unfit for any kind of work regardless of any adaptions be over-ruled? Of course, I hope it is successful but the chances are it won’t be, the ESA process is a harsh process that has forced many through an arduous appeals process and I am sadly resigned to the fact that whilst I should be resting and getting my health back on-track I will have months of forms, assessments and evidence gathering.

I will keep you posted.

PIP Medical Assessment

Yesterday I had my PIP (Personal Independent Payment) Medical Assessment. The assessment was done at my home by a company called Capita. I appear to be quite fortunate to have this appointment carried out at my home as most people are forced to attend an appointment at a centre and this can be many miles away from their home. I hope to explain the process as I experienced it in case it may be of benefit to someone. Prior to this appointment I had to fill in a PIP application that included multiple choice style answers. You are also asked to supply medical evidence for your claim, this was a struggle as most evidence had already been sent for my ESA (Employment Support Allowance) claim and as I was quite poorly I was unable to get the evidence copied. I was also waiting for the Adult Social Services Assessment to be done so I wasn’t able to submit that for evidence.

My home appointment was for 1 O’clock and my Mum had taken the day off work so she could be present. I had been quite stressed at this ‘test’ as I can’t see it as anything but a test. I slept for a short while in the morning so I could be ‘awake’ enough for it. I was so nervous, especially as the assessor was a little late. I was trying so hard not shake through it all. When the assessor arrived she was courteous but officious. She typed all answers and notes onto her laptop. I had read that if you are asked to do anything and it hurts or would hurt if you were to do it you should say and you shouldn’t be made to it – just explain why you can’t. I was concerned about having to perform ‘tricks’ but was relieved that I was only asked to explain if I could do certain things, I wasn’t required to actually do anything. I was sitting in an arm chair and she asked if I thought I would be able to touch my toes from my seated position. I have no idea as I’ve never tried to do such a thing so I leant a little over to look at how far away my feet were and I said ‘no’ as just moving forward a little had hurt. These sort of questions were confusing and I was annoyed at being so befuddled. So I would suggest take your time in answering and try to resist the natural urge to try and do it when you don’t have to as you weren’t actually asked to.

I was sitting throughout the appointment and I didn’t speak up about the pain I was in whilst seated, which I kicked myself for afterwards! We often don’t explain every ache and pain as it’s normal for us to manage it silently and to explain every pain would take too much effort, but for an appointment like this we should mention everything! and I’m annoyed that I didn’t but as I was concentrating hard on what was asked I failed to register what was ‘hidden’.

Most questions were the same and followed the exact order of the PIP application. Because my conditions fluctuate I was conscious of explaining and qualifying each answer with a percentage. I read that if you could give two different answers, saying I can do that 60 % of the time as the descriptor has to be relevant more than 50% of the time (I’m adding a link below that describes this in more detail as it is confusing but important).

The assessment lasted around 30 minutes and the assessor did give me time to answers the questions. My Mum wanted to know what the assessors background was and she said that she’s a nurse. Apparently Capita do try to match an assessor with relevant expertise to the applicant but this wasn’t the case with Atos and I’m not sure about the new Maximus one. The assessment wasn’t as bad as I feared but I have no idea of what was actually written down and how it will be interpreted, so now I wait for what could be another 4 to 12 weeks. I also have my ESA health assessment on the 18th June but more about that in the next post!

I was in a lot of pain after the assessor left and I’m still in pain today but I wanted to share information with you. Knowledge is indeed power and as we share our experiences we add to that knowledge base and grow stronger.

Tested to Breaking Point

On the 8th June I have an assessment at my house from the company that assess for the Personal Independent Payment and ten days later I will be assessed for Employment Support Allowance at the local Job Centre (just to add salt to the wounds). I will then be assessed by the pain clinic a few days later. Three medical assessments in three weeks and only one of them is medically necessary and medically beneficial. Any assessment, even one at a clinic as part of a routine medical appointment is stressful and exhausting as you constantly have to explain yourself and as you talk about your pain and suffering (for chronic illness is suffering) you relive it and have to face-up to the bleakest parts of you and then after it you get judged, often by someone you have not met before.

Even when being assessed by doctors that are supposedly there to help you the response you get is not always positive. Many of us with chronic illnesses have faced a doctor who dismissed us before even hearing us, who denied our conditions or symptoms exist. It can take years for us to get diagnosed and some people receive no help until they can get a ‘name’ for their symptoms. Administrators like neat titles that can be Googled; when just enquiring about support I was facing refusal before I had even applied as the man on the phone was unable to complete the form on his computer as a postcode for my surgery was not on Google and he could not submit the form unless every box was filled, the computer would not allow it, 15 minutes the man on the phone searched for a post code as he was unable to proceed without it.

Belief is so important to many of us with chronic illnesses as we have all faced people who refuse to believe that our suffering exists, sometimes these people are relatives and it cuts to the bone when you are deemed a liar, a fraud. Some of us even refused to believe that our own suffering was real, that we have an illness, that we have a disability, we believed instead that we were weak, pathetic, a failed person. It has taken us years and for some of us we are still on that journey to be believed to be acknowledged and if all that struggle was not enough we face the government tests. The government tests that determine if we are the ‘deserving sick’, if we are sick enough to get support to live. If we are deemed the ‘undeserving sick’ then we fall into limbo, our symptoms do not change, we are still unable to work but due to not being believed we are refused the support to live, so we cease to exist, we become written-off at a stroke of a pen.

  • Around half a million working-age people out of the two million claiming Disability Living Allowance are expected to lose their entitlement after 2013, when it is replaced by a more rigorously tested Personal Independence Payment.

British Social Attitudes 2012

  • At 30 per cent, the poverty rate for disabled adults in the UK is twice that for non-disabled adults.

Employers’ Forum on Disability

The Truth Test

Today I received a letter giving me my date for my face-to-face Work Capability Assessment. This is something that strikes fear into everyone that has to face it. If being sick, disabled, weak, vulnerable and anxious is not bad enough I now have to face a corporate stranger examining my life and illness in meticulous detail for no other purpose than to prove that I am sick. In criminal law you are innocent until proven guilty, a doctrine that when exercised is argued to make a society civilised – democratic. When you are sick and seeking help and support the premise of innocence (absence of burden of truth) is denied and instead you are burdened to prove yourself sick in defence of an assumed belief that you are not – you are guilty until you prove yourself true.

The Work Capability Assessments start from a premise that you must be capable for work and it’s up to you to prove why and how you are not. This is a cynically biased and false premise. The assumption is that the vast majority of people who claim that they are too sick to work are lying or are wrong. People do not want to be sick, they do not want to limit their lives by surviving just on the poverty line, they do not want to give up on the independence that work brings but they have no choice. The person who is sick knows their condition/s best. I have met nurses that have never heard of Lupus and met doctors who have honestly said that they know too little about Lupus to give me advice. My GP has referred me to two clinics over several years based upon my own research and has sent me despite his claims that I will know more than they do about my conditions.. The assumption that I have not yet figured out my capabilities or options is wrong.

In the assumption I will be asked to explain in silly quantifiable details, such as how many metres can you walk before you feel pain, how much can you lift and to what height? Nobody measures their life, their daily tasks in such details so you are forced to ‘guess’ in order for the assessor to tick a box. Answer correctly and you get a point -literally- how many points you receive determines how much, if any, benefit/payment is awarded to you. Quantifying and qualifying something as broad phenomenon as pain is still a challenge to leading physicians and scientists yet it is being enthusiastically engaged by administrators in order to definitively determine whether you experience enough of it to work. To lay personal details down about your health, life and mental state in order for an administrator to extrapolate what they deem as relevant to their assumptions that work is possible is a humiliating, distressing and infuriating experience. It is made an even more distasteful experience when you are aware that a private company is being is paid to examine you (the contract is rumoured to be worth 600 million pounds,

This acceptance and even eagerness to redefine illness and disability out of the welfare system is tolerated due to the myth that welfare fraud and abuse of the system is widespread and needs to be rooted out to protect ‘hardworking’ families (such a loaded phrase that I’ve examined in an earlier post on The Queen’s Speech). An article by Dr Simon Duffy, Director of The Centre of Welfare Reform dismisses this myth easily stating that in comparison to other fraud, such as tax (not including the larger tax evasion amounts) benefit fraud is extremely small ( Of course any kind of fraud is unacceptable but to punish so many thousands more genuinely vulnerable people is more unacceptable. To return to the analogy of innocent till proven guilty, it is better for a thousand guilty men to go free than one innocent man be imprisoned.

Disabled People Count

There are 9.4 million disabled people in England, accounting for 18 per cent of the population.

Census, 2011 (U.K.)

9.4 million people in the U.K. count yet are not being counteneced by the Conservative government.

Government is responsible for all its citizens and has a duty to represent them, not just the ‘hard-working’ ones as noted in Cameron’s Queen’s Speech for Working people. Who determines what ‘hard-work’ is? Anyone with a chronic illness knows that getting through one minute, one hour, one day requires enormous efforts I know of people who work harder in a day completing the task of getting washed and dressed that someone in The City does in one day at their office.

There is a good article discussing such themes as I approached in an earlier blog on The Queen’s Speech. A friend shared the link this evening

Condemnation of the ill, poor and disabled as sanctioned by the British Government

Photo from The Telegraph website

Yesterday (27th May 2015) saw the rich display of pageantry that accompanies the delivery of the Queen’s speech to the British Parliament. The Queen is the sovereign figure head of the U.K and whilst the constitutional tradition is for the monarchy to be separate from and not interfere with democratic governance she is forced every year to give a speech to the House of Lords that outlines the government’s agenda. The Queen is not allowed in the House of Commons as she is not an elected member of parliament so is only permitted to be present in the House of Lords (the second legislative chamber). The House of Lords contains unelected members that are there due to life peerages and was previously only inhabited by the elite who passed down their ‘seat’ through the family line. To add to this charade (as pageantry is) the Queen delivers a speech that she has not written nor had any input in forming. She is the mouthpiece for the government of the day. The Prime Minister watches adoringly as the Queen parrots his words, agendas and those cringe-worthy sound-bites politicians love. Watching and listening to the ultimate symbol of privilege surrounded by gold fixtures and fittings set-out an agenda that fails to consider yet alone address the needs of the poorest, sickest and most vulnerable members of the population pours salt into the wounds that an extra 12 billion pounds of cuts to welfare will make, 

After the speech had been delivered to the House of Lords the Prime Minister returned to the House of Commons to debate the contents with the House. I came to the debate part way through its live coverage due to a home visit I received from my council’s occupational therapy team. I am sorry to say that I missed the name of a labour MP that asked a question about how the proposed 12 billion cuts to welfare will target the disabled, poor and vulnerable in society and how could the PM justify it. The PM’s response was cruelly dismissive. The PM claimed that he had previously cut the welfare budget and that more was justified as they must get people to work. He then reiterated that hard-working people demand that such welfare cuts need to made and that his party is the party of hard-working people, he qualified this by throwing back to the MP that his party (Labour) had lost (Labour fought the election on a left-leaning agenda).

The Prime Minister is incredibly sure of himself at the moment due to the shock election result that saw him return with a majority, but this majority is of only 12 MP’s and as the speaker for the Scottish National Party stated the Conservatives were not the largest party in Scotland, Wales and Northern Ireland and whilst they are the main party they came nowhere near receiving 50% of the vote in England yet alone taking account of the whole of the UK. The idea the PM has of the whole country agreeing with his ideology is simply ludicrous. I also fail to believe that a country such as ours that has been celebrated for its financial generosity in charitable giving thinks that it is ok to make the poor poorer and the weak weaker. The problem is the phrasing of the debate as ‘working people’, ‘hard-working families’ and pitting them against welfare recipients implying by framing them as an opposite that if you’re not classed as ‘hard-working’ then you are lazy, you are not worthy of consideration. Polarising the debate between the hard-workers and the non-workers wrongly suggests that everyone on welfare is unemployed and that they are perfectly capable of working and thus not ‘deserving poor’.

Most people that have a disability or illness don’t work because they physically can’t and those with a work-limiting disability are more willing to work than those that are unemployed for non-health or disability reasons ( referenced in  The sick and disabled should not be confused or mixed with those that are unable to find work or those that refuse despite being able (those who adamantly refuse to work are not as numerous as we are often led to believe). People who work can find themselves part of the ‘working poor’ and many working families rely on welfare to live: child benefit, tax credits, carer’s allowances, disability living allowances etc. Many people wouldn’t consider working tax credit as a benefit but it is and its title alone undermines the failings of this polarization.

Geraint Davies MP (Labour) also spoke out in the Queen’s Speech debate and referenced an Oxford University study that claims that if the 12billion in welfare cuts go ahead the use of food banks would double. The food banks are an emergency service used by desperate people in times of crisis (over one million people used them last year) and a significant proportion of those who use them are in work but on a low income, also the main reason why people use them is due to benefit payment/assessment delays ( Working people can also be poor, can also get sick, can also be disabled and can also find themselves as carers.

There is no doubt that welfare cuts will deeply hurt the most vulnerable and in order to pre-empt any backlash against this the Conservative Party has long been trying to create an us vs them attitude with regards to ‘workers’ and ‘non-workers’. This is an insult to those of us that would love to work but can’t and to those that do work but do not earn enough to live, it’s an insult to carers and to pensioners. The polarisation of the workers vs the non-workers is so grotesquely contrived in over-simplification that it goes beyond normal political language into something more sinister. This contrived ‘conflict’ encourages hostility, myths and degradation to society’s most vulnerable. It pushes us further into sanctioning social inequality and disability discrimination. It is dangerous language and dangerous policy that must be challenged.

If you have read this to the end big thanks and please feel free to comment. x

New Disabilities Minister

The Independent (UK newspaper) reported that the new Disabilities Minister had previously voted against legislation that would support cancer patients and disabled children . The article is brief but makes worrying reading. Justin Tomlinson who is the new minister for disabled people appears to have given little consideration to the ill in the past and this lack of empathy ties in with other right-wing ministers attitudes who have been rewarded with cabinet posts. Buoyed and bullish fresh from an election win the fear is that the government will use this honeymoon period to push through harsh restrictions to welfare and social care services in their ideological crusade against state help. It is a worry. We are seen as an easy target – but are we?