Foreword: I recently read an article about the full extent of the increased attempted suicide rates which coincided with the introduction of the government’s benefit reforms and ESA. The article stated that:
“Staggering” new figures show that the proportion of people claiming the main out-of-work disability benefit who have attempted suicide doubled between 2007 and 2014.”
It’s no coincidence that in 2008 incapacity benefit (IB) began to be replaced by employment and support allowance (ESA) with eligibility tested by the WCA.
One leading psychologist described the figures this week as showing “the greatest increase in suicide rates for any population that I can recall in the literature”.
If you would like to read about these latest figures please click here.
Reading these disturbing figures compelled me to tell my story.
Here’s my story:
I almost became a statistic – just one more suicide triggered by the incompetence surrounding the implementation and assessment process of the health benefit Employment support allowance (ESA). I was assessed as 100% fit to work, even though I had moderate ME/CFS and the full support of my GP. I didn’t even receive 1 point on the assessment, which was carried out by a nurse who hadn’t even heard of ME/CFS. I had to appeal the decision. They messed me about so much, it took 2 years and multiple forms, evidence, phone calls, letters and appointments to get the decision overturned. I went from being able to walk to the local shops and “care” for myself, to being virtually bed bound and requiring care assistance daily, and I still haven’t recovered 7 years later. People don’t realise how physically and mentally exhausting the whole process is- it broke me. I lost my independence, my health and my will to live. We nearly lost our home and the dramatic deterioration in my health, along with the constant pain and the desperation of our situation caused me to become suicidal. I was in a suicidal state for 6 months solid- every day. I wouldn’t be here today if it wasn’t for the love and support from my husband, family and friends. But I was one of the lucky ones.
What went wrong?
To be honest, it was a massive cock up from the beginning. The building where the assessment was carried out wasn’t accessible. The office was on the 2nd floor and although there was a lift I wouldn’t have been able to exit the building in an emergency. As I’ve stated, the person carrying out the assessment was only a nurse, not a doctor, and she hadn’t even heard of the main medical condition I suffer from, ME/CFS. The so-called “medical assessment” was just a bunch of questions followed by a simple physical assessment including; “Can you lift your arms” which in no way represented a physical examination or took into account the many disabling symptoms associated with ME/CFS. I provided evidence from my GP which wasn’t even taken into account during the whole assessment process.
So, the outcome was; I was assessed as 100% fit to work. For those of you who are unaware of the “marking” system; you get 1 point for every area where you fall within the category they set as adding to your inability to work. You have to score a certain amount of points to be eligible for ESA and even then you may still be required to attend “back to work” interviews. There were many mistakes on the assessment report, I had been misquoted and the assessor claimed to have said things which were never discussed in the medical assessment, even my medical conditions were wrongly noted.
The appeals process
You can appeal your decision, which is what I decided to do, but there is no “help” available to guide applicants through the complicated and tedious process. I attempted to get help from the Citizens advice bureaux (CAB) but they stated they had no funding for this so they refused to help. Funding had also just been cut on legal aid provisions so I had nowhere to turn for advice. I had to complete the complicated form on my own, at a time when my health was already deteriorating, and also provide evidence to support my appeal. It was very common for appeals to go to tribunal, which is very similar to an official court hearing – and a scary prospect. As you can imagine my anxiety levels were extremely high not just because I was afraid I would lose my home but also at the thought of having to attend a tribunal and present my case.
12 months after submitting my appeal I still hadn’t received an answer or a tribunal date. I had rung the Department of work and pensions (DWP) multiple times over this period but no one could give me an update. Each time I had to wait in a queue for 40+ minutes and each time I was spoken to like an “inconvenience”. So I decided to submit a formal complaint, maybe then I would be taken seriously.
It’s not just the financial burden placed on your life that causes stress, or the waiting, you are also made to feel like you are “faking” it. You are accused of attempting to defraud the government, trying to claim benefits you are not entitled to. The media portrays claimants as “lazy, workshy scroungers. But I wanted so badly to work, just my body wouldn’t let me. Up until becoming sick I had always been independent and financially secure. I’ve always worked hard and saved my money.
The outcome of my appeal
My letter of complaint worked and I finally got an answer 16 months after my appeal started. The good news was my appeal had been successful and I wouldn’t have to go to a tribunal. Why had it taken so long? Incompetence! 8 months prior to finding out my appeal had been successful, a staff member at the DWP had reviewed my case and overturned the decision. BUT had forgotten to action the decision. 8 months of stress, 8 months of panicking that I would have to go through the stress of a tribunal, 8 months of financial difficulty, 8 months of phone calls where no one had picked up on this mistake, 8 months of my health deteriorating. And the mistake had only been picked up because the complaints department reviewed my case.
There are two levels of ESA; work related activity group (WRAG) and support group. When my decision was finally overturned I was placed in the WRAG which meant I had to attend “back to work” reviews. I asked at the time why I hadn’t been placed in the support group and the reply was; “You basically have to be on your deathbed to be placed there”
Yet another obstacle
But here’s the kicker; the government had just decided that if you fall within the ESA contribution based WRAG (which I did) you could only receive ESA for 12 months, then it stopped. Because it had taken them so long to process my appeal, I had already exceeded the 12 months, so my money was stopped and there was nothing to replace it. All that fighting for nothing! No matter how many people I spoke to I could not get any straight answers; how am I supposed to pay my bills? What benefit replaces the ESA after the 12 month period is up- surely I can’t be expected to suddenly “live” without any money?, my situation hadn’t changed. Why does it stop after 12 months, my expenditure hasn’t suddenly stopped? It was suggested I had to “sign on” for Job seekers allowance but you have to sign to say you are “fit for work” to receive this benefit and my records stated I was unfit to work, so I would be committing fraud by signing on. It was a joke, no one actually knew what they were doing and no one at the DWP was willing to help me.
So, here comes the next stage in this debacle. I was very lucky to be referred to a law charity by a friend. This charity specialised in helping benefit claimants with the complicated process and the incompetence surrounding the benefits system. The problem was, by now I was too ill to attend the meetings booked with the charity. Months went by before I finally found the strength to attend. I was advised I could appeal the decision to be placed in the WRAG but it had already passed the time allocated to appeal. I was told that the 12 month limit on payments doesn’t apply to the “support group” so if we could successfully appeal this decision I would start to receive ESA benefits again – something the DWP had conveniently omitted to tell me. I was also told that I should never have been discouraged from appealing to be placed in the support group because “You basically have to be on your deathbed to be placed there”. I didn’t have any fight left in me and I was just too ill, but what choice did I have? I needed to pay the bills and mortgage.
It was a long and exhausting battle, but with the help of the law charity I appealed the decision and won. My health had deteriorated so badly at this stage that the support group was definitely the appropriate group for me. DWP accepted that they had failed me and made mistakes. I was also encouraged to apply for disability living allowance (DLA – which has now been replaced by PIP), and my claim was successful. I will be forever grateful for the help I received from this charity, but sadly they had to close due to their funding being removed – yet another victim of the current conservative government’s austerity measures. The advisor at the law charity even got a formal apology for me from the DWP, but sadly the damage was done. I went from being ill but independent (to a degree), to being virtually bed bound and reliant on others for even my basic needs.
Desperation set in
The sudden and severe deterioration in my health was devastating for me. Losing my independence and my ability to care for myself at 38 years old was soul destroying. Added to that, I was in constant pain and I couldn’t see a way out of the hell I was in. I wasn’t living, I was battling to survive each day. Understandable I became angry, depressed and suicidal. I spent 6 months of my life in this state, suicidal every day. I desperately needed the pain to stop and I couldn’t see any other option. I called out for help but due to cuts in the NHS I was abandoned both by the mental health team and the NHS as a whole. Apparently I was too physically unwell to undergo treatment for my mental health issues, but at the same time I had my GP and the hospital tell me all my symptoms were caused by my mental ill-health. I wish politicians who made decision that destroy people’s lives could actually experience what they have to go through, or even just witness the devastation caused by their actions.
The irony behind the whole situation is that I’m now costing the UK taxpayer at least triple what I did before my health benefits were reassessed. Prior to the government’s “cost cutting” health benefit reforms I was just receiving incapacity benefit and, although it was a struggle, along with my husband’s wage we managed to pay the bills and mortgage. I now receive ESA and PIP, and due to the level of our income the government also pays for all my care costs.
The people responsible must be held accountable
I firmly believe that the incompetence surrounding the benefits system reform and the way I was treated by the DWP was the main contributing factor to the severe deterioration in my health, and the reason I became virtually bed bound 5 years ago – a state in which I still find myself today. Stress is a big trigger for all my symptoms including pain, fatigue, insomnia, anxiety, migraines and it’s damn exhausting. The stress caused by this horrific two year ordeal was immense. I was lucky, I had the support, both emotionally and financially, from loved ones. But thousands of people aren’t so lucky. Potentially thousands of people have taken their lives due to similar experiences to my own. I’m not sure we will ever know the true extent of the loss of life caused by the government’s benefit reforms but the sheer incompetence surrounding ESA assessments must be addressed and the people responsible must be held accountable.
Unfortunately people are still suffering. With the more recent implementation of “universal credit” and the severe cuts to services and charities which assist the most vulnerable in society, it doesn’t look like the situation is going to improve any time soon. How many more lives have to be lost before people take notice and a fair benefits process is implemented?
Do you have a similar horror story to share? What are you experiences with the benefits system in the UK, good or bad?
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Here is another article that highlights the sheer number of deaths registered while claimants were receiving ESA.
I am so sorry to hear what you have been through, the impact it has had on your health. I’m going through similar issues relating to government changes and cut backs. Its impact on my health has been enormous. Like you I believe that people who have caused this should be accountable for it. This country is a shambles right now.
Thank you for taking the time to comment Steph. I’m sorry you are going through similar problems. And yes I agree, this country is in a shambles and the most vulnerable in our society are suffering. I hope your situation improves. Take care.
I am a 62 year old Disability Studies specialist—from Montreal, Canada—who since 2012 has been campaigning daily on Twitter and communicating frequently with the UN’s human rights office, in Geneva, on the welfare crisis impacting U.K.’s sick and disabled. My Twitter profile accuses the British government of employing draconian austerity measures to murder its sick and disabled citizens.
Your blog post is one of the most poignant and heart-wrenching that I’ve come across in six and a half of campaigning and I’m truly sorry to learn of your immense hardship and suffering.
The DWP is out of control and its litany of human rights abuses needs to be forcefully countered. I’m recommending a crowdfunded lawsuit.
Thank you for taking the time to comment and for the work you do. Unfortunately my story isn’t rare and many thousands of people have suffered, and continue to suffer under the government’s “cost cutting” welfare reforms.
I am so sorry you have had to go through this. I also have ME/CFS and my story is similar to yours. I had moderate ME/CFS when I first applied for ESA and failed me assessment with no points even though I was in so much pain after the assessment I cried all night. I appealed and won after a year. After that year my health had got worse. I was also told by the DWP it was not worth me appealing been put into the WRAG because I had no chance of getting into the support group, so I tried to carry on in the WRAG. The job centre then put me onto a course were I had to go 3 times a week for 5 hours. I tried but I crashed badly and became bed bound. At this point I was sanctioned and my money was stopped, as was my housing benefit. So I had to fight the sanction and still try to get to this course but I was too ill and unable to get out of bed at this point, which got me more sanctions. I was too ill to get to the citizens advice and home visits had been stopped due to cuts. At this point I thought of suicide. Eventually a friend helped my with the appeal but without that friend (who also helped me get home care sorted and helped me eventually get into the support group) I would be dead. I am still bed bound and live in fear of universal credits. I feel as if my life has been thrown away because of politicians who haven’t got a clue and put money before people lives. How many have suffered and died due to these reforms?We may never know! The UN has called it an abuse of the rights of the disabled but nothing changes and the government carry on.
Thank you for sharing your story Christina. I’m sorry you have suffered so much. We really need to find a way to document all these terrible stories of neglect.
My mum has been through the trauma of all those application forms, those ridiculous “assessments” and the tribunal route. I had to try and help her a couple of times, and I found the tribunal humiliating, it was hard for me not to shout at the officials involved. Fortunately, my mum finally did receive the help she needs (she has fibromyalgia, IBS, and now depression as a result of all the medication), and she lives alone and independently, with occasional help from her children with jobs/grocery shopping etc. I feel so angry with the way the government kept changing everything, and how they made my mum feel like a lazy layabout even though she worked hard all her life up until one day when her body decided enough was enough.