I Won Against the DWP. There’s No Victory.

On 29th November 2017 at 2pm I faced my second appeal against the Department for Work and Pensions, the decision of the previous appeal held on 3rd October last year having been set aside. At that appeal, fighting the decision to remove me from ESA and place me on Job Seekers Allowance, I won but rather than be put back in the Support Group I was put into the Work Related Activity Group. This meant I could be required to attend job training, carry out “work related activities” and seek work, but mostly I would “probably” receive “update” calls and be given advice and support to enable me to “think about work options in the future.” It also meant receiving a lower rate of benefit and, as a knock-on because at the stroke of a pen I was apparently no longer quite as disabled, that meant I also lost some housing and council tax benefit. Strangely my body didn’t get the message it wasn’t allowed to be in as much pain and restrict my ability to work. On the advice of a brilliant support worker from the Child Poverty Action Group it was requested that decision be set aside, it was. And so, last Wednesday, I faced the Tribunal in a small room of a smart central London office block, (although the DWP Tribunals part is entered in a separate entrance on a side street, out of sight of smart office workers), and I won. I was placed back in the Support Group. But it wasn’t really a victory, it was Pyrrhic. And here’s why:

Had I not won the tribunal I could have lost ESA and been left without benefit. I knew that. I would have been left having to start a whole new claim and been left without money in the same way I was for almost three months last year. I would have lost my rights to housing and council tax benefit too. I knew the risk. I also knew that I could not have coped and was not prepared to be put through the emotional turmoil and isolation I felt last year, nor could I have continued to be subjected to the foul cruelty of fighting the benefit system. Even with incredible support and wonderful friends it is an isolating and dehumanising system.

Had I lost this tribunal I know I wouldn’t be here now and you wouldn’t be reading this blog, I had planned that I would commit suicide. Yesterday at 6pm you would have read a pre-prepared timed post simply saying I had been murdered by the DWP, the latest in a long time of people pushed to the limit and unable to take their brand of harassing and bullying treatment of disabled people who – let’s face it – would hardly be living the life of luxury on  between around £109 or £114 per week after being subjected to the Byzantine and accusatory claiming process all at the behest of a  hectoring, vicously petty “austerity” fixated criminal government. My decision to kill myself wasn’t a spur of the moment decision but a planned and decided one. I couldn’t have carried on having to go through the whole process again. I knew I couldn’t. So, since receiving the letter in late October I had gradually kept people away, I had done as much as could to the annoy and distance the folk I care for and love the most and I had, in a cold and methodical way, put all my personal matters in order over the past few weeks. I visited libraries, played the kindly slightly odd wannabe murder mystery author and discovered ways to use my various medications to overdose as easily as possible and, on the morning of the tribunal, got the medication ready for when I came home.  Over last weekend I organised “bequests” of favourite books and personal items into little groups each with a hand-written note of apology and love. I took letters for national newspapers, government DWP ministers and May herself to explain what I had done and why, which would have been posted on my way home to commit suicide. I am not proud of this, I know that suicide is a dreadful way to lose someone but I felt I wouldn’t have had any choice. Far too many also feel that and act upon the impulse. For me, thankfully, the cause of that feeling has gone. CPAG won the case for me and I’m still here. I genuinely no longer feel the same way but I know I need to get help, and that has begun with an appointment to see my GP. I’m not as strong as I imagined myself to be, I’m certainly not as strong as I was before June last year when this whole process started.

I almost became one of the countless people killed by the system, it is more luck and privilege than a foolproof system that has stopped that. That is wrong. Countless of us – folk like you and me – are being cowed, bullied and killed by a system that is meant to support. People in the UK in the 21st century are starving, depressed, cold, homeless, dying and committing suicide directly as a result of our government’s vicious vendetta against the sick and disabled – all in the name of austerity. More of us have to speak out about it, more of us have to do what we are able to fight it and support those who can’t. Yes, I’m lucky that I have rightfully had my ESA restored, but my very closest and most treasured friendships are strained, my mental health is in tatters and my confidence in the system is zero. It’s a Pyrrhic victory. I don’t feel very lucky. But once I have regained my strength I will fight.

If you feel suicidal, depressed or are living with anxiety please speak to someone. Contact the Samaritans

000001 SamaritansTalktous

 

Advertisements

Losing My Grip – Anxiety, Loneliness and Despair

In my blog post on 5th November I said I was staring at the brink of a full-blown breakdown, I hoped writing that post would be a catharsis but as my new DWP ESA tribunal draws closer I’ve become increasingly more anxious and unable to cope with the ordinary, everyday things in life. Panic attacks and paranoia are daily occurrences, I can only focus on the tribunal and, despite everything my superb welfare rights advisor and my closest friends tell me, I cannot allow myself to believe that there is any possibility of winning the case. And if I do win the case, what then? I have to face PIP reassessment and I have to face universal credit. One thing this past year, and especially this past month, has taught me is that I am far weaker and far less able to cope than I believed myself to be, and whatever the result of the tribunal the DWP have already broken me and I have lost. I am losing my grip; anxiety, loneliness and despair have taken over. I have pushed away those friends I love and think the most of with increasingly hysterical and cloying behaviour, and I have lost all vestiges of self-confidence and pride. I have no faith that the systems that are meant to support us when we are at our most vulnerable are truly there to do that, they are only there to support those of us who can shout the loudest or have the support of those who can on our behalf. I have no strength beyond going through the motions of showing up to this tribunal as required and playing along with yet another act of the state’s degrading of disabled people. I ask, genuinely and without self-pity, really what is the point of me, a disabled, single middle-aged man? This government and the DWP don’t seem to know and neither do I any more.

Over the years I have adjusted to increasing pain and the restrictions that has upon me, when I had to give up work I learned to live on the low income disability benefits provide. I grew used to how not being in work and having a good income changed how I was able to interact with people and the restrictions it put on my social life, I altered my shopping and eating habits, and over the past seven years have grown used to increasingly juggling the bills for essentials such as food, heating and clothing against the fripperies of going out to a cafe to at least interact with other people. This past year has opened my eyes to just how much my life has changed, how I and other disabled people really are an underclass that have been left behind. What has shocked me most is how I had coasted along and accepted it. The fight of simply trying to exist in constant pain on a day-to-day basis alone and on benefit isn’t easy but I did it, I even tried to be a useful member of society. Looking back I don’t know how I coped but I did, however I doubt after this latest run-in that I can carry on doing it nor do I see the point.  This is the stark reality of this government’s treatment of disabled people, I am not alone in being bullied, bruised and ultimately beaten by the DWP – whatever the tribunal result – but at least I have a small platform to write about it and raise awareness.

Whatever the actual result of the tribunal I will need to recover from the damage to my mental health with psychiatric support, and I have to try and regain some strength.  Most of all I will have to try and apologise to the friends I’ve hurt, I hope I can at least do that.

Despite everything I am grateful to have had help from the Samaritans this weekend, as bleak as I feel things are I at least no longer feel totally lost. If you are depressed, trying to cope with anxiety and need someone to talk to please contact The Samaritans

0001

Another Bloody Blog Post About Depression

This post has taken nearly two weeks to write and a good few days for me to finally decide to post, partly because of my never quite believing my writing is any good and partly because it seems that all of my infrequent posts over the past year or so have all touched on depression. I also worry about how my friends and family will be affected by this – I don’t want to upset or worry them any more than they already are. It isn’t something I intended this blog to be about, I intended it to be about community politics and other such things I care about, and I intended to keep myself in the background. But then the Department for Work and Pensions decided to attack disabled people and I had to share what that meant from my own bitter personal experience. Write what you know said Twain, (or was it Hemingway?), so sod it – here is yet another scream from the heart.

On October 3rd 2016 I received a phone call from a nameless individual at the DWP informing me my benefits were stopping immediately and I had to apply for JSA, which caused me to write the blog post Living a Half Life and then almost six months later a quick follow up A Toe in the Water. Following my appeal hearing in February this year I was moved from the higher rated ‘Support Group’ that I’d been in prior to October 3rd and I was placed in the lower rated ‘Work Related Activity Group’. On advice from my support worker at CPAG this was challenged, and since April I have been waiting to hear if the decision would be revised. On October 25th, 55 weeks after my initial appeal hearing, I received a letter stating that the appeal decision was set aside and I would have to face another appeal – this time in front of a district judge – at the end of November.

My friends and followers of my Twitter and blog posts will know that my mental health has been poor, although most of the time I have been able to kid most that I am coping and have been getting better. In truth I have never been more fragile. Last year a close friend of some thirty years believed I was close to suicide as a result of the DWP’s actions, and whilst I’d like to think I wouldn’t be able to commit suicide there is no question that I have had some really dark times. I am not a person who easily or readily makes friends and I’m certainly not an easy person to be a good friend of, consequently the number of friends I feel able to confide in is small and whether by accident or design all of them are either far away and/or have other commitments and incredibly busy lives. This past year I have been more difficult than usual, and coinciding with the problems I’m facing with the DWP has been a significant worsening of my pain, latterly possibly the result of an awkward fall in the late summer, which has resulted in my pain medication being changed to morphine, and there are a couple of other issues that have been adding to my already increased stress levels which include having a new GP who I am unable to get on with and do not feel supported by. And then came the letter from the Tribunal Service with the new appeal date. Once again I fear my future. And I still have to go through the process of being reassessed for PIP.

Needless to say my already fragile mental health is suffering significantly, and those who are getting the worst of my anxiety and fear are the friends who are closest to me. I can barely cope with dealing with something as simple as getting on a bus and going to the shops, and as someone who finds socialising difficult because of my disability and low income I am finding my anxiety levels so high that venturing out alone is an ordeal. I shouldn’t be staring at the brink of a full-blown breakdown, I should be able to cope and I should be able to sort myself out. Were the government and the DWP being run to support disabled people, and our needs and requirements truly of concern to them, me and hundreds of thousands of others would be able to live reasonably. I shouldn’t be at the point where I do not socialise for fear of not being able to afford to pay my utility bills or buy shoes or clothing. I shouldn’t be demanding the time and attention of friends through snot and tears, and ever more paranoid and hysterical texts. I shouldn’t be but I am. And I am ashamed but I shouldn’t be, the government and the DWP should be. I don’t know how I will cope, all I know is that thanks to a handful of incredibly supportive people I am lucky. Countless numbers of disabled people are going through the same without support and without a voice. They shouldn’t be. Our government and the DWP are failing people and killing people. They won’t kill me but I doubt I’ll ever get over what is happening to me.

 

Introspective Ramblings of an Introvert

My last few blog posts have touched lightly on the fact that I’ve been depressed as a result of my difficult dealings with the DWP, and like the majority of people who live with depression it’s something I’ve generally been unwilling to admit or speak about with all but a very few close friends. The blog that follows wasn’t intended as a public post, it was my attempt at trying to come to terms with my current emotional state and to give myself some peace. Only time will tell if this piece of writing is a catharsis for me but having read through it I felt it was a piece of writing I wanted to share, (after tidying it up a bit from the disjointed stream of consciousness it was originally). The stigma and fear of depression and the general unwillingness to be honest and open about the experiences that one in four of us will go through in some form are part of the problem, part of why I got into this state. Recognising what I have felt and thought might make someone else going through similar feel less isolated. It might also help people see that depression isn’t a simple case of feeling fed-up and the person concerned just needs to cheer up and get out more. Since writing the following I’ve taken the steps to get professional help, and whilst this isn’t the best piece of writing it’s my ham-fisted attempt to give a little help to dispel the stigma that surrounds mental health. I hope it does.

I can’t remember ever feeling lower or more isolated than I did at the end of last year, I’m still struggling to find some balance and to break the feelings of doubt and insecurity that loom large most days. My mood swings, my lack of interest in what’s going on around me and my poor diet are bad enough, but my snapping at my closest friends and subsequent feelings of guilt for any or all of these things only to then repeat the behaviour are not me. I’ve long thought of myself as pretty strong and self reliant so it’s come as a shock to find that I’m so alone and feel so needy. The years of pushing people away and convincing people I can cope have finally found their limit and it’s a shock to realise how low things have become, the incremental creep of not having money and losing contact with people because I can’t physically and/or financially keep up has been shown up for the gulf it really is and has shaken me to the core. And then everything else “bad” that’s happened over the years comes into my head. I can’t recognise myself as the same person who got through the shock of becoming disabled, I don’t know where that determination came from and why I don’t have the same strength and determination now. The ignorance of youth I imagine. How come I got through not knowing if I was going to walk again, all of the rehabilitation and rebuilt my life yet can’t get past this? Going through the whole DWP situation at the same time as the attack’s 30th anniversary made coping much worse, churning up all of the memories was bound to happen and once again my idolisation of A and the stupidity of breaking up pop into my head too. There’s every possibility we’d not have lasted the course and I should learn to let go but boom!, there he is. Except he’s not and never can be again, I was lucky to have the time we did as lots of people never know that. Not all of my choices were good ones and I can’t help thinking I made some ridiculous decisions but I got on and did well. I know there are so many positives but right now they mean nothing. Other people are going through worse and have to care for others, I just have me. There’s the rub. It’s just me. Family, such as it is, is too far a distance away and we’re not that close. Close friends are few and I know I can be a total nightmare, I need to cherish them a lot more and stop behaving like an idiot otherwise they’ll go too. That’s the churning in my head. I have to stop, breathe and get past this. But then the fact that PIP assessment has yet to happen, that scares me. I wish I didn’t know what the system was like. Through my teens and really right up until comparatively recently I had to fight for me and others like me to be accepted within the law, those battles are almost won but society is still catching up. Society is hurtling backwards as far as all equality is concerned, that petrifies me. That’s the thing, all of the things that I thought were there to support and help people are being torn away by the government. I don’t know how to break out of this mindset. I’m worried about how I come across to other people, I’m awkward at the best of times I know and now I’m even worse. Coming on top of trying to get people to accept me as I am, a disabled, gay and awkward individual is hard enough. Keeping up with friends isn’t easy either and making new ones isn’t something I can even begin consider, especially at my age and in my current mental state and definitely with my financial situation. I don’t know how I got here. I don’t know how to say to people I need help without making them feel obligated and I’m petrified I’ll lose the friends I have, especially those who don’t know me too well because of my reticence and permanently needy ways. I am a mess.

So there it is, the thoughts and feelings I put down to try and get myself through this tough time. It opened my eyes to a few things and has at least made me realise I needed to get help. I hope in time I’ll get back some of the confidence I had, and I am at least involved with my community and am keeping myself busy. If you or anyone you know is struggling with their mental health, whether it’s depression, anxiety or worse then don;t give up on them and help them to seek support. Speak to your GP, and there are links below.

Mind  Samaritans

Being Other

I’ve lately been frequently reminded that I am ‘Other’, something that someone with my usual background levels of insecurity and introspection has found pushing its way to the fore, which, with my current depressed state, makes me even more awkward and sensitive than usual.

Those who’ve read my previous blogs or read my Twitter feed know the battles I’ve faced with the DWP as a direct result of having the temerity to be disabled, something that came about in fact because I had no shame about being gay in the 1980s when society still had very different views and laws than it does today.  Friday marked the 50th anniversary of the Sexual Offences Act where homosexuality was partially decriminalised, a true landmark for gay men and a marker on the long road to equality – a rough road that we’re still treading and one that those of us who strive for equality will be travelling on for some time to come. Don’t misunderstand me, I think that commemorating the event is important and something that needs to be widely shouted about, but the belief that once the 1967 act became law we danced along the Yellow Brick Road to disco beats in ruby slippers all the way until today really is a rainbow-tinted view and one I personally find difficult. I find it difficult because as a gay man in his mid fifties who is committed to equality in its fullest sense I know that, despite changes in the law, we are still in many, many ways socially far from being an equal society.

Equality is something that we as a nation are very good at making laws for and celebrating – which of course we should – but we’re not very good at actually doing it. Just because something is on the statute books and widely praised doesn’t make it happen, for that we need to listen to, learn from and talk with those for whom legislation is supposedly enacted rather than be spoken at by those who decide the laws – usually phalanxes of privileged folks with little or no real knowledge of what it is to be Other but well-meaning in their desire to be seen doing something good. And there’s the rub. Statutes are on the books yet inequality is still something that we see enacted every day in all aspects of our lives – sometimes insidious, frequently unspoken but increasingly noticeable. Extreme cases scream out in the headlines, usually violence directed against a person or group because they are women, BAME or not British, disabled, LGBT or elderly. We can try to explain it away, salve the pain with talk of diversity, integration, multiculturalism and everything inbetween, and the lily-livered and naysayers can try to excuse it by shouting about political correctness,  yet the introduction of the Equalities Act 2010, (replacing Equal Pay Act 1970, Sex Discrimination Act 1975, Race Relations Act 1976, Disability Discrimination Act 1995, Employment Equality (Religion or Belief) Regulations 2003, Employment Equality (Sexual Orientation) Regulations 2003 and the Employment Equality (Age) Regulations 2006), has done little if anything to create an equal society. Laws alone simply aren’t enough, education from the very earliest years right through until higher education, employment and beyond has to grasp the nettle. Government has to not only talk about zero-tolerance of hate and the need for equality but has to be seen to be enacting the very word of the law and ensuring that all services, employers and organisations are committed to and working for equality.

I’ve seen and experienced inequality at work within the groups I ‘belong to’ as Other, being a gay man and disabled is frequently seen as mutually incompatible at worst or an exotic niche interest at best, racism and exoticism is common too for BAME LGBT+ people, and many lesbians are rightly vocal about the misogyny and exclusion they experience. Some have tried to explain it away to me as the hierarchy of oppression, the youthful body beautiful hedonism of the gay male community or the reflection of misogyny within wider society. I say hogwash. Anyone who has experienced prejudice or bigotry has to ensure they don’t perpetuate hate, indeed we all do. We have to talk and listen openly, learn, and treat each other with a bit more respect.

So there we are, I don’t have many answers but I am aware, I listen, learn, campaign and fight for full equality as Other and ally, and will carry on doing so for as long as I have to. Personally I believe that unless and until there is full equality for women and that 51% of the population are no longer seen as Other striving for wider equality will be a long, tough road. The Equal Pay Act and Sex Discrimination Act were two of the earliest pieces of equality legislation, women are the strong base on which society is built, to whom we entrust childcare and much of education, and yet somehow there is still a gender pay gap and women do not hold even a quarter of our Westminster seats, let alone parity with men across wider society. That has to be addressed and then other equality can genuinely become reality.

Phew, I have gone on. Yet I still feel Other, I will still be seen as Other and as a result I will feel apologetic, insecure and on occasions clinically depressed. And I know that I’m not the only one. I am thankful, truly thankful, to have a good group of friends to buoy me up and make me believe we will, one day, succeed. Society may never be perfect but it can be much better than it is. And it will be.

 

A Toe in the Water

I haven’t blogged for eight months, indeed not regularly for around a year, an effect of being smacked down by the twisted ideology of an austerity-fixated government and left reeling by a welfare system that is being systematically dismantled. My last blog post ‘Living a Half Life‘ was written in the grip of a severe depression, (a close friend of thirty years seriously thought, at one point, that I was close to suicide), which was the direct result of all I had experienced and at a time when I was still depending on friends for financial and emotional support. It took until a few days before Christmas for me to receive any money, (ironically this was three years worth of back payments as the CPAG advisor discovered I had been paid at the wrong, lower, rate upon transfer from Incapacity Benefit to Employment Support Allowance), and it wasn’t until the early New Year that I started to receive the regular payments of lower rate JSA, pending my appeal. The appeal was finally heard on 22nd February which was, to be honest, pretty dreadful and I left not knowing the Tribunal decision. Both the CPAG advisor and I thought the appeal had been lost, but finally on the following Friday I received a letter stating that the Tribunal had found in my favour. However, rather than being placed back in the higher rated ‘Support Group’ that I’d been in prior to October 3rd, I was placed in the ‘Work Related Activity Group’. On advice this is being challenged and I’m waiting to hear if the decision will be revised, but thankfully I’m back in receipt of regular ESA payments and the requirement to look for work and attend training as required under JSA has ceased.

The requirement to be assessed for Personal Independence Payment still hangs over me, something that I dread given my experience with the Work Capability Assessment. PIP replaces DLA, something I been in receipt since becoming disabled in 30 years ago and had been granted for life. I can only wait and hope that the DWP shows good sense and decency. Forcing people to undergo cruel and unnecessary Work Capability and Personal Independence Payment assessments when they could quite easily and far more cheaply be transferred to the new payments saves no money and thoroughly demeans disabled and sick people. It puts our physical and mental well-being at risk and all the more so when money is stopped and people are forced to appeal, only to then win at that appeal at huge extra cost to the public purse.

Blogging and writing wasn’t the only thing that I found myself unable to do when things were at their worst. I had enthusiastically and happily organised a community Fun Palace on 1st October as part of the Fun Palaces weekend and whilst it had been a great success I failed miserably to undertake any of the follow up required, yet as with all they do the brilliant Fun Palaces team were incredibly kind and understanding. My plans for more community planters stopped, as did trying to organise a ‘Little Free Library’, my social life – such as it was – ceased, and I took almost no interest in anything else that matters a great deal to me.

The majority of the certainties of my life suddenly seemed to come crashing down around my ears on 3rd October last year, and whilst things are brighter than when I last wrote in November I’m still coping with depression. Gradually since February I’ve been slowly getting involved in my community and taking up the plans and activities that had been stopped. For the first time in three years I’ve had a proper holiday, spending a much needed and very welcome couple of weeks with friends and family which did me a power of good.  Although I’m nowhere near as bad as eight months ago my confidence still hasn’t fully recovered, (I’m not too confident at the best of times), I still have moments of panic and fear, and I still suffer bouts of paranoia. But I’m getting stronger, strong enough now to be able to put a toe in the water and blog again. The fact that I’ve got through the worst that the DWP threw at me and I am recovering mentally is due in no small way to a group of incredibly loyal, understanding and generous friends – old and new – who continue to give me the support and space I need. There are strangers, too, who through social media have become friends and encouraged me when I was at my lowest. I appreciate each act of kindness equally and hope to behave in an equally generous way to others.

Living a Half Life

To our government we disabled people, together with people living with long-term ill health, have become a revolting group who have the temerity to be unable to work, and as such threaten the fiscal probity and social fabric of this the world’s fifth richest economy. We are each a 21st century Spartacus camped together on hills far away from decent folk and engaged in our own ‘Servile War’ pitted against the might of the DWP – an army of oppression if ever there was one – headed by interchangeable Pompeys, firstly Iain Duncan Smith now Damian Green with his loyal lieutenants Penny Mordaunt and Lord Freud and around 87,000 foot soldiers. Imagine how fearful our government is that a whole army of disabled people managed to rob the Treasury of £36.7bn  in the last financial year, (source: Full Fact), out of a total government budget of £772bn. And what do we do with our booty? Idly plan insurrection and give nothing back to society, lazing on couches as state-paid servants peel our grapes and do our bidding whilst we luxuriate in our hedonism. We have to be stopped, and so we are with dreadful consequences. Death, severe worsening of  disabling conditions, mental health issues and stress are all increasingly being reported and the situation for disabled people is bleak. I had believed that government, despite all its faults and whatever party was in charge, had at its core a belief that people mattered and that as a welfare state those in need would be supported. I don’t believe that any more. I hope to garner the strength to fight for others and bring to light the cruelty this Tory government’s ideological need to cut and smash the mesh that has held this country together and served it well since 1945. An underclass is being willfully created who this government treats as electorally unimportant, fiscally negative and socially unacceptable due to disability or ill health. The Welfare State and those dependent upon it is being marginalised in the name of austerity, and we are being pushed back to a pre-welfare, pre-NHS state.

Recently the film I, Daniel Blake attracted a huge amount of publicity for its stark portrayal of the nightmare that is the UK benefits system today, and how people are treated not as individuals but targets who must behave in a set way or face sanctions. There are a few people who choose to think that the film doesn’t reflect reality, that it has allowed dramatic license and the political viewpoint of its makers to cloud the issues and things really aren’t that bad. They are. They really are. People who follow me on Twitter have seen my rapid descent into despair over the past six weeks, and in the months prior to that my fight with depression. This is the reason I’ve not blogged very much this year but now feel that I have to stand up and be counted  and say I too am Daniel Blake and am suffering at the hands of the DWP. I have detailed my disability and how I became disabled in previous blogs, I am in chronic pain – extreme pain that never goes away and hugely impacts on all aspects of my life. I’ve suffered with this condition for almost thirty years and have had knee replacement surgery due to severe arthritis, I have attended pain clinics and require high doses of strong pain medication. The major disabling problem is arthritis in my spine for which I have had facet join injections which did not help, and the only option left is a risky and serious procedure called a spinal fusion which only has a slight chance of improving my condition – the likelihood is that it would have little effect or could make matters worse. What follows are my experiences as a result of the DWP Work Capability Assessment, all of which can be verified. It is written whilst I am in the middle of an extreme bout of depression, it may ramble and it may appear disjointed but stick with it please – this is one of many very similar and typical cases. It is important that cases like mine are known about and the true extent of the horrendous situations people are being put in are exposed. I am in many ways very fortunate that I have incredibly good friends who have put me in touch with a good welfare rights worker and who are kindly giving me money to buy food whilst I wait to receive benefit – if I receive it. Goodness knows what will become of me should I not have my ESA reinstated.

In mid-March I received my  Capability for Work questionnaire which I duly filled in and sent back on 30th March, and as a result of which I was given an appointment for the Work Capability Assessment. The appointment given me was at a time and in a location that I would not have been able to make – 9am in Romford in a building nowhere near public transport. It also turned out that the assessments were carried out on the 2nd floor of the building which I was told by the person rearranging the appointment wasn’t suitable for me anyway as I have difficulty with stairs. As I take at least 3 to 4 hours to get myself in a fit enough state to walk, etc., so I can then get ready for the day after sleeping for 3 hours or so, appointments at 9am in distant locations not near public transport would mean getting up at around 3am. I live in Bethnal Green, the person I was speaking to was in a call centre in Wales. She doesn’t know London. Alternative accessible buildings offered to me were in Canterbury, Colchester, Croydon, Balham and Paddington. I agreed an afternoon appointment in Paddington for 2nd June. The date duly arrived and I took a friend of almost 30 years with me to the Job Centre – a soulless place with security staff wandering the floor, overworked staff who seem cowed by the job and a whole collection of humanity crushed into a shabby, uncomfortable small reception area all nervously awaiting their assessment. My name was called and I was told to take the stairs to the first floor – stairs? I was told it was an accessible building but then 1st floor is, to a non-thinking non-disabled person, closer the the ground so therefore more accessible. Not. My friend and I had to be escorted by a security guard into the lift and up to the first floor where we were greeted by a pleasant young ‘medical professional’ who it turned out was a doctor. She listened attentively to the cause of my disability, asked questions and seemed incredibly kind and supportive. When it came to the physical examination I was in considerable pain which the ‘Medical Professional’ could see and she said she didn’t want to examine me as it would only cause me more pain. That was it, over. I felt a little buoyed up as a result of the examination and felt it just might be OK. I didn’t hear anything for quite some time, then in August I received a letter asking me to attend a Work Capability Assessment. I called and explained I’d already had an assessment and was awaiting the result. I was asked if I was sure as there was no record, and I again said I had been assessed. It turned out,after a call back later, that the report had been attached to another file and hadn’t been looked at.

Finally, at the beginning of October I was told by phone that I had failed the WCA and that as a result my Employment and Support Allowance had been stopped immediately and a letter confirming the decision and the report would be sent to me, then I was given numbers to ring to claim for Job Seekers Allowance. Depression had been taking hold in any case and the sudden and brutal way the decision was relayed was like being punched. That day I simply shut down, I could not cope with anyone or anything else and although I’m involved with community projects and play an active role in my neighbourhood I was unable to engage with anything. My world immediately shrank, I spoke to few people and rarely left home other than to get food or attend Job Centre and medical appointments. My first Job Centre appointment was two days later where I had to claim for Job Seekers Allowance. I had to sign an agreement to look for employment within a 90 minute commute and work for up to 40 hours per week. I was stunned and explained I didn’t think, in all honesty, that I would be able to due to my disability. I was informed that my assessment showed I could – I hadn’t yet seen the assessment as it hadn’t arrived – therefore if I wanted to receive any money I had to sign otherwise I would get nothing. I signed a legal agreement knowing I had lied. I felt despicable. No account was taken of my requirements due to my disability even though it was noted I was still in receipt of Disability Living Allowance. I was given pamphlets with numbers on that I had to contact for ‘back to work courses’, and a sheet of A4 with details of how I could make and then use a ‘Jobseekers Account’ which I would have to log into each day and look for work, providing evidence of the jobs applied for. Failure to do this could lead to sanctions. I was confused, I’d be spoken at but not had any assistance or guidance. The following week I went back to the Job Centre not having looked for work, believing that as I was so long out of work due to my disability I was required to do the training courses first. I was told this was not the case, that I still had to look for and apply for work and would be required to do so even when training. Being stressed and spiralling into deep depression meant I was suffering increased extremes of pain and failing to look after myself properly. Even people who knew me only slightly could see I was ill, yet this made no difference to the DWP as I was simply another nobody that was required to make their targets.

The Work Capability letter and report arrived at the end of the week and was a startling and worrying misreporting of events. Absolutely no mention of my pain levels and how they affected me were noted, and it was stated that I had ‘declined the physical examination’. The report, it seems, wasn’t made by the ‘Medical Professional’ but by a ‘Decision Maker’ who wasn’t present at the assessment and who has never met me. I wrote for a mandatory reconsideration of the decision to be made which was received by the DWP on 19th October but to which there has been no response as yet. It could take at least another six weeks. If it is decided that the original decision is correct I will then have to go through the appeals procedure. It is a  Kafkaesque bureaucratic nightmare and a truly worrying thing.

Finally I had an appointment for a training course in a centre, (in reality a converted shop with limited accessibility), that was two bus trips and an hour away. The appointment was to fill in a questionnaire on 2 sides of A4 – name and address, etc. It took just 15 minutes and another appointment was made for my ‘assessment’ the following Monday. I made the same journey, over an hour on two buses, to be sat at a computer answering very basic multiple choice questions. It took 45 minutes and I was told I’d answered too quickly. Another appointment was made for the following day when I would receive the results of the ‘assessment’ and meet with a tutor to be told what course would be best for me. On Tuesday I took the journey back, and as I was about to enter the building was phoned to say my appointment was cancelled as the tutor had to leave for a family emergency. I was in pain, I was anxious, I was tired. I broke down. The staff within the centre hadn’t a clue how to help, all they could do was make another appointment for later that week. I leant against a wall on a busy road in Islington and sobbed. I couldn’t make the rescheduled appointment, I was too anxious and had not slept the previous night. I was physically sick, weepy and couldn’t face yet another soul-destroying, demeaning waste of time. Even though this meant that I could quite possibly be sanctioned for failing to do all of my required tasks when I saw the Job Centre ‘work coach’ the following week I really couldn’t think about it. All I knew was I couldn’t cope. This isn’t me. Via Twitter a couple of people – via trusted sources – said that if a doctor’s note was provided you could be exempted from the work requirements but still receive JSA. I saw my GP and explained the situation, he said that under no circumstances could I be expected to do what was being asked of me, and signed me as sick. The ridiculousness of having to be signed as sick for my disability really got to me – for years I and other disabled people have fought for disability not to be seen as illness. So, armed with the doctor’s note I attended the Job Centre and told the ‘work coach’ all that had happened and gave him the note. He took it, read it and said it was vague. It was factual and stated I had severe chronic pain that rendered me unable to carry out any work activity for 13 weeks. Off he went to his supervisor and returned to say that I would be ‘met half way’ and would only need to attend the Job Centre every 2 weeks and do the rest of my work searches and take part in online courses. I said that I had provided a valid doctor’s note that would be accepted by an employer and I was unable to do that. I was told that I was therefore ineligible for JSA and my claim would be cancelled with immediate effect. I was given a number to call for ESA – the benefit I had lost and was trying to get reinstated. Once again I was left sobbing and scared. A friend arranged for me to speak with someone from CPAG who calmly went through everything that had happened and agreed to take on my case.

So, that is the current situation. As things stand I am not receiving any ESA or JSA nor am I entitled to. Thankfully I still receive Disability Living Allowance although this just about covers my utility costs and I have a comparatively large overdraft due to trying to cope on benefits that haven’t been increased since 2010 whilst fuel, food and rent have increased markedly. For food I am relying on the kindness of friends who have been lending me money which I fully intend to repay. If the DWP agree to reconsider I will get my ESA reinstated from the start of October. If they don’t and I have to appeal I will receive a reduced amount of ESA during the appeals process, also backdated. Until then I am entitled to nothing and there is no idea of how long this limbo may go on for. My mental state is fragile, my physical state is worsening. I barely see other people outside of a small group of three or four I trust implicitly and don’t feel the need to ‘put on a brave face’ for, and when I have seen other people it physically and emotionally exhausts me. I hate being like this, it isn’t me. I feel I am half a person living a half a life.

I’m sorry that I needed to write this but thank you for reading it – I hope it spurs you in to action as there really are many thousands in very similar situations, possibly many in much worse situations as they don’t have the type of support I’m lucky enough to have. Contact your MP and raise this issue, speak to local councillors and ask that local authorities put in place practical and if possible financial assistance. Some do already but don’t make it known. Support your local food bank – there are drop-off points for donations of cans, long-life cartons of milk, juices, etc., and dried goods such as pasta, rice, etc. Find out more at Trussell Trust. Support your local Citizens Advice and local advice services, and groups like CPAG and Shelter.