Shafted by the DWP

“1992 is not a year on which I will look back with undiluted pleasure. In the words of one of my more sympathetic correspondents, it has turned out to be an Annus Horribilis.”

HRH Queen Elizabeth II, in a speech to the Guildhall on 24^th November 1992, marking the 40^th anniversary of her Accession.

When HRH Queen Elizabeth II had given what is perhaps one of her most memorable speeches, I was completely unaware that sixteen years later, I would experience my own Annus Horribilis, or should I say the onset of several terrible years.

All had been well at the beginning of 2008; I was part-way through a short college course, which I was thoroughly enjoying. My energy levels were not a major cause for concern, and as far as I knew, I was healthy.

By the summer of that year, everything had changed, in that there was a feeling of absolute tiredness and exhaustion that I couldn’t shake off. If I ventured outdoors, I frequently had to stop and rest, which was most unlike me. I was struggling to stay awake during the day, and felt like I was at the bottom of a black hole that I couldn’t get out of. Having suffered with clinical depression since childhood, I have to say this was completely unlike the bouts of depression I’d suffered previously.

As the weeks passed, I experienced bouts of light-headedness. My vision deteriorated, and if I attempted to read or watch television, I felt cross-eyed. Within what seemed like the blink of an eye, it had then got to the stage where I barely had the energy to do anything other than breathe, and was more-or-less sleeping round the clock. My entire body ached, and despite the weather being mild, I felt absolutely frozen and couldn’t warm up. Even when I had a bath, I would be covered in goose pimples and feel like a block of ice. It was similar to having a bad case of flu, only much, much worse. In hindsight, I should have made an appointment to see my GP at the onset of my symptoms, but the problem was that because I had felt so exhausted, I couldn’t motivate myself to do anything about it.

Because so much of my time was spent sleeping, I was barely eating. Besides, even when I was awake, I didn’t have the energy to move. I couldn’t speak because that required energy I didn’t have. I was completely incapable of looking after myself, my teen-aged son, and my home. I couldn’t do anything other than breathe, and even that seemed an effort. I seriously believed I was dying a slow and horrible death, but felt too ill to care.

My vegetative state wasn’t good for my teen-aged son, who was having an extremely difficult time at school, and really needed me to be there for him. He couldn’t talk to me about his own issues because I was in no fit state to help. Eventually, my parents stepped in and insisted I visit the doctor, because it was obvious I wasn’t going to get any better until I did.

Fortunately, my GP’s practice is within 5 – 10 minutes walking distance (or at least it was when I’d had the energy to walk at a faster pace than a snail), as is the outpatient centre, which I was to become extremely familiar with. My GP referred me to a psychologist, who in turn sent me for blood tests. Clearly, the psychologist suspected that I was suffering with more than just an acute case of depression.

After the results of the blood tests had been sent to my GP, I was contacted and told I had a “slightly” under-active thyroid. The GP stated that it was nothing to worry about, but that I would need to take thyroid medication (Levothyroxine) for the rest of my life. In addition, I would be required to have blood tests every 6 weeks, and then every 12 months once it was deemed I was on the right dose and my hypothyroidism had stabilised. The doctor added that it would take several weeks before I began to feel better, thus giving the impression that I would then feel hunky-dory again.

Having previously been quite a physically active person, I felt that my life had been turned upside down, and it took a long time for me to adjust. I felt angry, confused, misunderstood, and I needed reassurance that my symptoms were ‘normal’. I became prone to breaking down in tears. My son seemed completely disinterested in my hypothyroidism and how it was affecting me. The truth was that he was concerned, but didn’t understand it because he couldn’t relate to my symptoms. My parents seemed to trivialise it, but this was because they felt that by acknowledging and drawing attention to my hypothyroidism, I would end up becoming a victim by allowing it to control my life. To me, it really did seem as though I was completely on my own because my family and friends didn’t understand just how ill I felt.

Despite the fact that I was struggling to think clearly, take in information, and continued to feel cross-eyed, I wanted to know more about hypothyroidism because although I had heard of the thyroid gland, I didn’t know anything about it. In bite-sized chunks, I searched the internet for information. Eventually, I stumbled across a thyroid forum, which became a lifeline. The forum included detailed information about the thyroid, and an overwhelmingly lengthy list of symptoms associated with thyroid conditions, along with conditions such as diabetes and fibromyalgia, which some people might go on to develop as a result.

Long after the diagnosis, I was struggling to find the energy for the simplest of household chores. If I managed to wash one item of cutlery or crockery within a week, it was an achievement. If I could do it without feeling thoroughly exhausted and sleeping for 16 hours, it was more like a miracle. My walking pace remained slower than a snail, and if I managed to venture further than my front door, I would experience excruciating pain in my back. The best way I can describe it is that it felt like I had been repeatedly stabbed (not that I’ve ever been stabbed), and that the blade had been twisted and turned over and over again. The likes of paracetamol, ibuprofen tablets, gels and sprays did absolutely nothing to relieve the pain. I was prescribed Co-dydramol, but it brought on headaches, made me feel dizzy, and only eased about 10% of the pain.

Claiming Employment & Support Allowance (ESA) 

Approximately 5 months after my diagnosis, I was contacted by the Department for Work and Pensions and informed that because of the age my son had reached, my Income Support would cease, and I would have to claim Jobseeker’s Allowance (JSA) instead. I attended an appointment at the jobcentre where it was made abundantly clear that if I could not state I was fit to look for work, I would not be able to claim JSA and would therefore need to claim Employment and Support Allowance (ESA). This would require me to obtain a sick note from my GP as soon as possible, and to send sick notes to the Benefits Division Centre for each week of my claim. In addition, I would be sent a medical questionnaire by ATOS Healthcare, and be required to have an independent medical assessment.

When I received the medical questionnaire, I got as far as filling in my name and had to stop. The physical effort required to hold the pen had left me feeling physically exhausted, and I wasn’t exactly firing on all cylinders mentally. It took me about three weeks to complete the medical questionnaire.

In August 2009, I was required to attend the independent medical assessment (a points scoring exercise) at a location approximately 15 miles away from my home. My son came with me, which was just as well because he had to physically support me as I walked, and prevent me from falling asleep on the bus. The medical assessment (performed by a doctor) was a complete joke. Rather than trying to build a picture of how my symptoms affected my day-to-day life, the doctor seemed more interested in establishing how many hours of television I watched, and the type of programmes I liked to watch. I was asked to bend over and touch my toes, and was in so much pain that I stopped short of being able to touch my knees. I was also asked to lie down and raise each leg in the air as high as I could. This also caused me considerable pain, and I only managed a few inches.

After the medical assessment, a report was sent by the doctor to a Department for Work and Pensions (DWP) Decision Maker, who in turn sent me a copy with the news that I had failed to score enough points to be eligible to claim ESA. When I read the report, I was aghast. The doctor had made reference to things I had stated during the assessment, but it had all been twisted and taken completely out of context. In addition, I had been described as looking ‘a bit tired’. Given the fact that I had been struggling to keep my eyes open, I felt furious.

So, having failed to score enough points, and knowing that I wasn’t in a fit state to work, I decided to appeal. Emotionally, I wasn’t in a fit state to deal with the appeal by myself, so I sought help from the Citizens Advice Bureau. I was assigned to someone specialising in Welfare Rights, who explained that whilst he could assist with the paperwork, he would not be able to accompany me to the hearing. For the next few months, the emphasis was placed on obtaining medical evidence to support my appeal. My GP was sent an ESA50 medical questionnaire, but she informed me that because she wasn’t a senior partner at the practice, she didn’t have the authority to complete it. If I wanted medical evidence, I would need to be referred to one of the senior partners, but there would be a hefty fee to pay. The price quoted was far greater than I could afford to pay.

When I explained my predicament to my psychologist, he said he would willingly provide medical evidence, and that there would be no charge for this. However, given that he was my psychologist, he could only comment on how my mental health affected my day-to-day life.

I had read information about ESA appeal hearings, which stated it paid to be alert and not to say anything that could be taken out of context. Questions would be asked that would be specifically intended to confuse the appellant and trip them up. In short, few appellants were successful because the system had been set up to fail them. The months leading up to it were emotionally draining and stress-inducing, and I found myself feeling terrified to the point of verging on hysteria.

There was no way I could attend the hearing alone. Aside from the fact that I required physical support, I also required moral support, so it was agreed that my mother would accompany me. Shortly after our arrival, I was handed a file relating to my appeal, which I was asked to check. The medical evidence from my psychologist should have been in the file, and yet according to the clerk, nothing had been received. The realisation that there was no medical evidence to support my appeal did little for my state of mind.

The hearing itself has to be one of the most traumatic experiences I have ever endured. I was asked questions, but before I could finish answering them, I was interrupted with more questions. The hearing was meant to focus on my symptoms between the date of my ESA claim, and the date the appeal had been lodged, yet I was asked questions that were completely irrelevant to that time. I left the hearing with the distinct impression that the outcome had been decided long before I’d even set foot in the building. The appeals judge had done his homework and presumably thought that because I hadn’t worked since falling pregnant with my son, I must therefore be a benefits scrounger who had no intention of working.

As it had been more than 12 months since I had made my claim for ESA, I was told I could apply for it again. When I failed the medical assessment, I couldn’t face the emotional trauma and exhaustion of another appeal, so the only option available was to claim JSA.

Claiming Jobseeker's Allowance (JSA) 

With JSA, allowances are made for people with health issues (reduced working hours and travelling time), but it seems to be at the discretion of the jobcentre advisor. At my New Claim interview, I was asked to state how many hours I could work, and to specify when I could work (i.e. 9am to 1pm). This was impossible for me to answer because whilst I might have been capable of working a few hours one day, it was debateable as to whether I would be capable of it the following day.

It dawned on me that it would be great if I could find a job working from home with flexible working hours that enabled me to work when I felt well enough to. In addition, I wouldn’t have to worry about time off for doctor’s appointments and blood tests, and the inconvenience this may cause to an employer. I had a computer, was familiar with Microsoft Office, knew how to send and receive e-mails, and use the internet. Despite not having any typing qualifications, I could type reasonably quickly with my index fingers. I decided a basic admin-based job working from home would be ideal, but as the jobcentre advisors were incapable of advising me, I was clueless as to how to go about finding such a job.

After discovering the UK-based Working Mums website, I was put in touch with one of their advisors, who informed me that few employers would consider me without a nationally recognised IT user qualification (ITQ). When I mentioned this to one of the advisors at the jobcentre, I was told that I was eligible for government funding, and could do an ITQ Level 2 course through Learn Direct. When I then made enquiries with Learn Direct, it was explained that I could access the course from home (e-learning), and that as long as the course was completed within a year, I could work through each module at my own pace. Goodness knows how, but in February 2012, I achieved a BCS Level 2 Certificate in IT User Skills (ITQ).

The Work Programme

At around the same time that I achieved my ITQ qualification, I was placed on the Work Programme with a company called EOS. It had been explained to me by a jobcentre advisor that the Work Programme would take my health issues into consideration, and provide me with a greater level of help and support. When I attended my first appointment with my Work Programme advisor, I was asked to provide a detailed explanation of my health issues and how they affect me, and was then asked about qualifications and experience, and the kind of work I was looking for. Initially, it had seemed as though the advisor had taken my catalogue of symptoms on board, and that she was actually going to provide me with the level of help and support I required. During the appointments that followed, the advisor’s attitude was completely different. The help and support that had previously promised never materialised, the goal posts kept changing, and it was as though my symptoms had been thoroughly disregarded. I was told that I would be hard-pushed to find part-time admin-based work, especially as I had no typing qualifications, and should therefore be looking for cleaning jobs where qualifications and experience were not a requirement. It got to the point where I would attend the appointments feeling full of anxiety, and leave feeling thoroughly frustrated and demoralised. During one particularly unpleasant appointment, it was all I could do to stop myself from leaving and jumping in the local canal. I had gone beyond despair and experienced what I can only describe as a dangerous white-hot rage. I didn’t want to be in the company of other people, didn’t want to talk, and felt too angry to cry. It took the best part of a fortnight for me to calm down.

Sick Whilst Claiming JSA 

From the date an initial claim for JSA claim is processed, a claimant is allowed two periods of sickness a year, lasting no more than 14 days each. If a claimant exceeds the allowed quota of sick days, their claim is automatically stopped, resulting in a new claim having to be made. However, this does not mean that the clock is re-set regarding their entitlement to ‘sick leave’, because it is based on the date that the original claim was made. The time it takes for a claim to be processed, and the first payment to be released can take about 4 – 6 weeks.  When there isn’t enough money to pay the bills, and barely enough money to afford basic groceries, it adds to the stress.

It has to be said that whilst I feel better than I did back in 2008, my symptoms remain an ongoing issue. In addition to feeling fatigued (rather like trying to run a car on an empty tank), I am prone to migraines that can last up to 48 hours. Pain relief offers no respite, and often causes me to feel even more nauseous. I also suffer with debilitating menstrual cramps, and although there is medication I am prescribed, the drawback is that it often triggers off migraines. If my symptoms affect me on the day that I have to sign on, and I cannot attend because I am too fatigued, or too debilitated by other symptoms, it really is an absolute nightmare.

Penalised For Being Sick 

Back in March (2013), I had to put in a new claim for JSA because I had exceeded the allowed quota of ‘sick leave’. A request to have the claim backdated was denied. Fortunately, there was just enough money in my bank account (from previous payments) to pay the majority of bills, and buy the most basic groceries.

When I made a new claim a few weeks ago (for exactly the same reason), I found myself in an utterly cataclysmic situation. I had just paid a number of bills, and although there was barely any food in the house, my Child Benefit and Child Tax Credit payment had been spent on paying a Virgin Media to avoid having my services suspended. Why? If I can’t get online to perform job searches, it would be deemed that I wasn’t making an effort to look for work, which would result in me being penalised; a position I couldn’t afford to be in. Also, I didn’t feel that I could be without a fully functional landline, especially in the event of an emergency. When I attended the jobcentre for my New Claim interview, I explained that there wasn’t enough food in the house to last until my next Child Benefit and Child Tax Credit payment, and enquired about food vouchers. I was told that because I had prioritised a bill over food, I was no longer deemed a vulnerable case, and therefore didn’t qualify for food vouchers

It had been suggested that I contact Benefit Enquiries and ask for my claim to be rushed through, but when I did this, I was informed this wouldn’t be possible. I could, however, apply for a loan, but it would take about 9 days to process. Obviously this wouldn’t be of any use to me, so did I have any relatives or friends who could help? If it wasn’t for the fact that my parents agreed to come to my rescue, me and my son would have quite literally spent the next few days living on a diet of water and oxygen.

I’ve resigned myself to the fact that unless my health dramatically improves, this is what it’s going to be like now; a vicious circle of making new claims for JSA because I’ve been penalised for daring to be unwell. It’s hard not to feel bitter and depressed, especially when there are so many other people with health issues in the same situation who are being shafted left, right, and centre by the British government.