I have been through hell and back the past few weeks and now I can finally tell you everything because for me it is now over, but for thousands of others they are either still going through it, have gone through it but not as lucky as me, or have yet to go through this themselves. I am lucky in a lot of ways and at one point I did not even think I would be here to write this, but I am and this is why.
It all started one morning a few weeks ago at 8am. My phone rang out of the blue and a man’s voice introduced himself as someone from the DWP informing me I would be receiving a phone call that day between 10am and 4pm from ATOS (who carry out work capability assessments on behalf of the DWP), and failure to answer this call or answer the questions could lead me to having my benefits stopped. In just a few minutes, my life went into overdrive caused by fear and stress. I had to cancel an emergency appointment to see my doctor because I was losing feeling in my feet. I had to cancel a support group later that day, so I could sit in waiting for my phone to ring. When it rang a lady explained I needed to fill out forms and return them as soon as possible, or my benefits will be stopped. Over the coming weeks I lost count of how many time I was “reminded” that failure to do something immediately would result in my benefits being stopped.
The forms I was expected to fill out are not given in Braille or audio format despite being advertised that they are. The service from the DWP to help people over the phone fill out benefit forms no longer existed and I was left trying to find help to complete the forms in a short time frame. In my area all services for the blind ceased 12 months ago. Help to read mail, help to go out, help to live independently etc for the blind, all ceased under government cuts because they are not classed as life threatening. A recent report by RNIB highlights that in as little as 10 years not a single blind person in the UK will have no help to cope with sight loss due to government cutbacks
I spent an entire day chasing down different departments who all refused to help with form filling. The attitude I experienced from staff was unnecessarily rude and one of annoyance, no matter how polite I remained. Sometimes it honestly felt as if they enjoyed telling me that my inability to fill out a form, because I could not see, would lead to my benefits will be stopped. Finally my own doctor came out just to fill the forms out for me.
I gathered evidence of my medical conditions from various agencies to accompany the questionnaire and requested a home medical assessment. I am not well enough to travel to an assessment centre. My health declined rapidly and I knew I was becoming very ill. I made a distressing phone call to a friend (@bendygirl on twitter) and left her with instructions that if I die she had permission to do certain things and carry out my wishes. This is not me being melodramatic: I live with the risk of my lungs failing at a moment’s notice every single day. I have also been diagnosed with heart failure and I live everyday to the full, because I do not know if it will be my last. I could pass away in my sleep, because my heart & lungs can pack up at any moment with no warning. I do clay working hooked up to oxygen to help me breath. Yet people do not know this because I always focus on the positive sides of my life and how I genuinely feel blessed and happy. People can say we all live with uncertainty, and yes we do, but I live with it constantly hanging over my head, wondering if I will make it through the day, hooked up to my medical alarm 24/7 to allow me to live independently and not wrapped in cotton wool but enabled to live as ‘normal’ as possible. Stress is the last thing I should have in my life, especially to the extent that was being placed upon me right now.
This is a phone call no-one should have to make or receive and while @bendygirl & Baroness Tanni Grey-Thompson (pictured right) took on my case to deal directly with ATOS, I collapsed. The stress brought on a heart attack. I spent 3 days in the Coronary Care Unit and a further 10 days in hospital recovering, but I had no fight in me to get well. For the first time since my life changed from injuries I wanted to give up. After all I was now classed as a ‘scrounger’ and a ‘skiver’. I was the target of harassment and abuse at home, I am verbally abused online every single day and I was treated with complete contempt by staff at ATOS, constantly speaking to me like I was dirt and saying my benefits would be stopped- meaning I would lose my one chance of becoming self-employed, running my shop through the ‘Permitted Work‘ rules. Every aspect of my life had turned into a horror story of abuse and contempt and this was viewed as acceptable. I genuinely did not want to come home from the hospital – I wanted to give up.
Numerous letters of proof were sent to ATOS requesting a home medical assessment. I am not disputing the fact that I had to be assessed to see if I was ‘unfit for work’ – I just wanted to be assessed at home due to my various disabilities. I am fully blind: one working arm, bad heart & lungs and unable to stand and/or walk for more than a few minutes. I do various charity work and run an online shop, under permitted work rules as already stated. I am trying to build a business to become fully independent and come off benefits while coping with what life throws at me health wise. I get up at 5am and do not go to bed until midnight, exhausted because everyday tasks take longer to complete and leave me in incredible pain – but I still do it. I never complain and I never gave up……….. until now.
All letters of proof from professionals, clearly stating my disabilities, were rejected and even my housing officer received an abrupt letter saying that what she had sent was of no use and if I didn’t sort something out within 48 hours my benefits would be stopped, yet no-one from ATOS informed me of this. It was only because my housing officer contacted me straight away was I was made aware and then able to contact a senior doctor, I had never met, to immediately read & verify my medical records and write to ATOS about my situation and verify I was entitled to a home assessment.
@Bendygirl and Baroness Thompson helped by contacting influential people to inform them of what was happening to me and how I was being treated. I had to close my online shop temporarily, due to a barrage of abuse online from people accusing me of being a fraud and a cheat. Everything I had worked so hard for was on the verge of being lost. My last chance to be something and reaching my goal of self employment was about to be taken away and I was seriously contemplating suicide. I had enough of fighting against a tidal wave of hate and bureaucracy. I had enough and I had no more energy or spirit to carry on fighting a system hell-bent on breaking me, dealing with my disabilities or facing the abuse anymore. Everyone has a limit and I had reached mine and gone beyond my levels of tolerance. I was beaten down so much I didn’t even recognise myself anymore.
Today I received a letter in the post from the DWP, saying that ALL letters of proof I had sent in had been accepted and I that I will not be required to have a medical assessment for benefits. I am not entirely clear why they made a complete U-turn, but they are now satisfied that they have enough evidence which shows I am blind and that all my other disabilities are real and genuine, along with my original medical notes. It came with a heavy price: it also cost me my life. This should not happen but it does. Not just to me but thousands of others. I am lucky they finally accepted all my proof but so many cases are not so lucky. A lot have their benefits stopped despite being genuinely sick and/or disabled and unable to work. Some are plunged into poverty and destitution while they fight to have benefit decisions overturned. Some even pay with their lives.
I made it clear and left instructions that if I died I wanted it made public and sent to the newspapers, some of which were at least partly responsible for what happened to me due to shameful propaganda they print about benefits and benefit claimants. The fact I felt the need to put this into motion in the first place shows how wrong everything is right now with our society and this system of assessing disabled people.
A system which instills fear and anxiety into the hearts of sick and disabled people and treats them with contempt has no place in our society. To employ staff who are purposely rude and who seem to enjoy threatening you constantly to stop your money should not be accepted. We used to be a society that treated disabled people with respect but over the past years that respect has been replaced with contempt and scepticism and constant labelling of disabled people as faker’s and fraudsters. The DWP’s own figures show that benefit fraud is tiny at only o.7%.
How many more have to go through what I had to before something is done to stop this? How many people need to die before someone realises what is happening is wrong? When is someone going to act like a human being in Parliament and stand up for what is decent and right?
I fear I have a very long wait.
posted on ‘Welfare News Service, 12th October 2013: http://welfarenewsservice.com/high-price-pay-disabled/