It is very hard to find words for what's taken over my life since I last posted. I've had immense trauma coping with the brutal, inhumane degrading system of reassessment for disability benefits the government does not want you to have. The sheer nastiness of the way it is carried out has been awful, especially with my history of major trauma. The uncertainty and fear created severely affected my physical and mental health making me extremely ill.
PIP is the most badly named disability benefit possibly, it stands for Personal Independence Payment. But the way it is being administered is actually taking away the independence of severely disabled people all over the UK. The government's stated objective for bringing PIP was to “safe money by forcing “20-25% of disabled people off disability benefit”, while stating at the same time that “genuinely sick and disabled people had nothing to fear.” That was a total lie. And the way they made it so hard for disabled people to qualify – by making the criteria extremely hard to qualify for. The whole reason for it's existence is totally obscene.
During the 2-years which led up to my PIP process beginning I heard and read what has been happening as it has rolled out across the country. I've read all the horror stories of people being left destitute despite being severely disabled, many terminally ill, others losing their mobility cars despite needing them and being legally entitled to the benefit. I knew the ATOS assessments were being fixed against claimants, with assessors writing down lies and often writing something totally different to what the claimant actually said. I knew that people were having their disability benefits taken away from them and being forced to appeal in a process which was taking months and often a couple of years to resolve.
I just kept hoping I might have a kinder experience of it. However, that was not to be!
My experience of PIP began in February when I received a letter telling me that DLA had been abolished and I would be invited to apply for PIP. I got a letter in July telling me my DLA was ending and I would be getting a PIP form which arrived during August with an absolutely ridiculous and impossible to meet deadline for getting it back to them. My mental health Care Co-Ordinator managed to negotiate a 2-week extension to the deadline. The whole of the next 3-weeks was taken over by the 40-page form which I filled out giving maximum information and additional information that there was nowhere on the form for. I returned the form with loads of robust supporting evidence to try to make it as hard possible for them to refuse my claim.
At the end of September I received a letter requiring me to go to an ATOS face-to-face assessment with less than a week's notice which was totally impossible to do. Again my Care Co-Ordinator managed to negotiate with the DWP to give me a new date with a proper amount of notice. Debbie also negotiated where the assessment was to take place because it is impossible for me to travel to their centre in Exeter. We both wanted it to take place at St. John's Court, my Care Co-Ordinator has attended previous ATOS assessments with clients at St. John's Court. However, they were adamant that it take place at their centre or in my own home and they were very nasty and bullying in how they stated it.
So I was left with no option but to have it in my own home, which I didn't really want and which was disempowering.
My home is my safe space, I am very careful what and whom I allow in to it. To have to have an ATOS assessor in my safe space treating me like a piece of shit was not something I wanted to allow in to my home, my safe space, but the DWP made it impossible for me to have my wish for it to be elsewhere so I felt very powerless.
I had nearly 3-weeks notice of the new date, which was 5th November 2015. I needed all that time to get my head and emotions around having the assessment at home but I could not know just how I would react to allowing the assessor in, knowing I had no choice and did not want her there.
My Care Co-Ordinator was present at the assessment as there was no way I was having the assessor in my safe space without a witness present and as things turned out I was very glad Debbie was there and witnessed all that went on.
The assessor showed up at my front door saying in the coldest possible tones “I am looking for [my name]”. I don't know what I said in response but with massive foreboding demanded I.D. from her which she took great exception to. She was not happy that I asked her for I.D. which I had every entitlement to request. To be honest, if you are showing up at people's homes you should have your I.D. round your neck or in your hand. She did neither and had to fish around in her bag for it, she flashed it so quick at me that I was unable to see what it said except I saw the ATOS logo on it.
I let her in, all the while she was complaining on and on to me and to Debbie about me asking her for I.D. I felt like telling her to shut the f*** up, that I was totally entitled to ask a stranger showing up at my door for I.D. and that I have to take my safety and security extremely seriously, but I knew she would not get it.
She walked in to my living room and saw Debbie sat there. She spat out “who is this?” I told her who she was. The assessor was obviously extremely unhappy to find I was not alone. At this point I was very glad I was not alone, I dread to think what would have happened had I been alone. I was disgusted at the disgraceful way she spoke to Debbie. It was obvious she had come with an agenda and we had upset that agenda, she was extremely taken aback and unhappy although the letter states that you are encouraged to have someone with you at the assessment. So the assessor had no grounds to complain about Debbie being there.
The assessor sat with her back to Debbie, hunched over a notepad, hardly making eye contact with me throughout the assessment.
She was very patronising and condescending, talking to me like I was a child. She posed questions in ways which prevented answers beyond simple yes/no responses which was woefully inadequate and frustrating. She did not ask questions in a way which allowed anything other than yes/no responses. I was not given space to expand or quantify beyond simple yes/no answers to explain how things really affect my day to day life. I was not asked what a typical day is like. I was not asked what the days I struggle to get out of bed are really like. I was not asked how I cope with everyday tasks such as cleaning or housework. She did not question me about all my health conditions as she said at the outset she would. In particular she did not ask me about my migraines and the enormous impairment they cause to daily life.
She refused to discuss my Complex PTSD saying “we won't talk about that as I don't want to upset you”, which was not okay. Complex PTSD has a massive impact on my ability to cope from day to day. I would NOT have been upset if she had attempted to discuss it in an adult way rather than a condescending making assumptions way. It was a missed opportunity for her to gain insight into the catastrophic impact Complex PTSD has on my life. By ignoring my Complex PTSD, Dissociative Disorder, Personality Disorder and other aspects of my mental health she gained no understanding of how massively impaired my daily life is by the complexity of my mental ill health. She asked briefly about my depression but in a way which limited what I could say. Both me and Debbie mentioned self-harm and my daily battle with suicidal thoughts. But the assessor was obviously out of her depth at that point of the discussion and ignored everything we said about my mental health.
She asked if I am under an M.E. Clinic or specialist. I stated I am not as they only deal with short term cases, however it was not possible for me to mention that the clinic contact me annually to check on me.
I was asked if, on the days I struggle to get out of bed, I wash my hands and face? She asked several times, despite me saying NO each time. She was not willing to accept NO and bullied me until I changed my answer to YES to get her to move on. Her bullying was unnecessary and totally inappropriate. Debbie witnessed that and remains very angry about it.
It was at that point that I dissociated because of her bullying and began to shut down. Debbie told me afterwards that the “Fi” I became was not a “Fi” she knew or recognised. She told me that I gave the assessor less and less information as I gradually shut down from the shock of how bullying the assessor was.
I was asked if I am able to chop up food – I stated I cannot chop up food because of pain and loss of feeling in my fingers. She then said “but you can cut up your food to eat can't you?”. A simple yes or no did not suffice as I have to ensure I eat food which needs minimum cutting up because of pain and numbness in my fingers. It was not possible to explain the complex issues I have around food and eating nor that I have days I scarcely eat at all. She asked “but outside of the M.E. you know how to cook don't you?” and was stunned when I said “NO”
I was asked if I can text – again yes or no did not suffice. It was not possible to say I only do essential texts because as soon as I start texting the pain and numbness in my fingers makes it impossible to send anything but a very short message.
I was asked what time I go to bed at night but not asked what happens once I get to bed or how easily I fall to sleep. It can take 2-4 hours to fall asleep. I was not asked what my sleep is like or if it is disrupted. I was not asked what time I get up the next day. If she had asked any of those questions it would have been obvious to her just how restricted my life is by constant debilitating fatigue and how much of my life I actually spend in bed.
I knew as soon as she asked me what time I go to bed at night that she was totally clueless about M.E. It was such a totally inappropriate and stupid question to ask.
She asked where I catch a bus to town from. I showed her the bus stop outside my house. She asked if I walk to appointments seeking a black and white yes or no but my mobility issues are more complex than that. It was not possible to say sometimes I walk but slowly in constant pain and have to allow extra time. It was not possible to say if I go out I am back in bed as soon as I return home because walking, even just down the road to the shops or to St John's Court, has completely done me in. It was not possible to say I catch the bus up the road so I only have a couple minutes walk up the path to St John's Court and walk home after as I know I am coming back to bed. It was not possible to say I am in bed the next day because I went out, even for just a few minutes or because I walked, even just a very short distance because walking exhausts me and several days a week I struggle to get out of bed and am not mobile in my own flat nor able to make it out to my back patio to take out rubbish or recycling. She did not ask me how I manage when I have to go into town.
She asked me when I am fatigued and when I am in pain. I told her I am always fatigued and always in pain – she appeared stunned by those answers and asked “really?” to both answers. I was shocked she understood so little about M.E. that she thought there could be times when I am not fatigued or not in pain. There is no time, no day, no moment when I am not fatigued, exhausted or in pain. There are days I can do nothing because my entire body hurts. Everything in my life is carefully arranged because of the limitations from M.E. Everything I do is done through a haze of constant debilitating exhaustion and pain.
It was not possible for me to say I tend mostly to just go out to appointments due to having massive social phobia. I often find it too distressing and triggering to be out of my house as I am scared to be around people, cannot cope being around men, cannot cope with unexpected events, unfamiliar places, unfamiliar people or last minute changes to plans and so have extremely limited social interaction outside of appointments with health professionals.
As the assessment went on I gradually shut down until I told the assessor I was exhausted and just wanted to go to bed.
At the end of the assessment I was left severely dissociated, distressed and deeply traumatised. It caused a severe escalation of my depression, self harm and suicidality. I was left feeling terrified I will lose the disability benefits without which I cannot afford to live and cope with my disabilities and so was suicidal.
All of which was totally unnecessary and need not have been if the assessment been carried out in a careful humane way as we requested on my form rather than the extremely poor and damaging standard of assessment it turned out to be. It is regrettable the assessor did not heed our request.