It’s left me feeling dejected, miserable, worried about how I’m going to manage

It’s left me feeling dejected, miserable, worried about how I’m going to manage as I keep experiencing continual cutbacks from various directions. I’ve lost my confidence, my assertiveness and my determination. I’m isolating myself in so many ways, and that isn’t like me at all. I’m probably clinically depressed but I’m doing nothing about it. I’m losing weight and having more and more health problems. When I had good support (DLA plus Personal Assistants funded by way of Direct Payments from Local Authority) I looked so much better and my mood was better and I had fewer relapses. As that support is reducing I’m deteriorating rapidly.

I’ d been on DLA (Higher rate Mobility and Care) for ten years when I was told I had to apply for PIP instead. The Form was soul destroying and much of it didn’t apply to my condition or my needs, and it didn’t really let me say what I wanted to say – or I thought they would ignore any of my extra Notes. However, staff did grant me an extension to the ‘closing date’ and I appreciated this. This was followed by a face to face assessment in my home – which I neither requested nor wanted (in my home). I felt I had to send my family out for several hours as I didn’t want them to hear the reality of what I needed to tell the assessor. I’ve never let my family know the true extent of my disabilities, or how bad the prognosis was. The assessment session was rushed. The assessor made far too many presumptions and tried to put words in my mouth, e.g. she put nearly all of my difficulties down to one of my conditions when actually it is the other condition that limits my abilities. I tried to correct her and explain, but I soon realised that she didn’t really want to know much from me. She raced through the physical assessment, wanting me to perform certain movements or actions but she showed no interest in whether or not I could do these movements/actions safely, repeatedly, and within a reasonable timescale. E.g I can raise my hands above my head with difficulty, but I can’t keep doing it several times in an hour or in a half day, and I can’t link it to a practical task such as getting a biscuit tin out of a cupboard. I thought I would probably get the higher rate for Daily Living, and the standard rate for mobility since they have cut the distance to 20 metres – but several weeks later I got the letter saying I’d got the enhanced rate for Mobility and the standard rate for Daily Living activities. I hadn’t lied about how far I can ‘mobilise’ as she never asked me. As I was sitting in my manual wheelchair throughout the assessment she must have presumed I used it permanently – when actually I don’t , and although I can’t walk more than 50 metres I can walk more than 20 metres on most days – but she never asked me. However on the daily living section I was one point short of getting the enhanced rate, and I was puzzled by this, as were friends and family.

I asked for a copy of her Report, telling ATOS staff quite clearly (in writing) that I wasn’t asking for a reconsideration or an Appeal at this stage as I needed to see how accurate her report was before taking such action. They didn’t send me her report, but they took it that I was asking for a reconsideration, so I had to sort this out again with them. I did eventually get a copy of her report and it was full of inaccuracies and ridiculous presumptions. E.g. I had told her about essential medication that leaves me feeling severely nauseous all day, all day every day for over a year, but there is no alternative. I am therefore very reluctant to eat, so I need encouragement to eat and a lot of support from other people. She totally discounted this on the grounds that I looked clean and well-dressed and not under-nourished and she said that I didn’t have any physical difficulties with eating so I scored nil points on that section. If she had asked me more about this I could have told her (quite truthfully) that I had lost over 2 stones in recent months and that my general appearance was purely down to the excellent (but stubborn) support provided by friends and family! Otherwise, if left to fend for myself I would have looked anorexic.
In another section I told her I needed support to take my medication, both physically and psychologically. I can’t stand taking pills that do slow the progress of my illness yet make me so nauseous, and physically I struggle to get them out of the packet because of poor coordination and limited sensation in my finger tips. I rely on other people to get the tablets out of the packet and to make me take them – otherwise I would be tempted to not take them. The assessor reported that she saw me propel my wheelchair 4 metres without assistance, and that if I could do this then I must have the strength to open a packet of tablets and get one out – so I scored nil points on that section too. There were other inaccuracies, which if corrected would have got me the extra point that would have got me the enhanced rate for Daily Living activities.

Several months had passed since the start of my PIP reassessment, and by then I was sick and tired of all the stress and uncertainty. I knew that if I did challenge the decision then I risked losing everything, and after all I had got the higher rate for mobility which I didn’t expect and if her assessment had been more accurate I wouldn’t have been entitled to it. So I decided not to take it any further. It meant losing £27 per week, but I could just about cope with that loss. Unfortunately I’ve since found that I’ve lost other things that depended on me getting the enhanced rate for Daily Living, and now I’m struggling financially but I definitely wouldn’t put myself through that assessment process again.Appalling. Hard-faced, overbearing, bullying, ignorant, thoughtless, unwilling to let me explain or elaborate or give any answer that was more than one sentence. She rephrased everything I said and I could see that her report was then going to be very inaccurate.She made me feel less than human. She sapped my confidence. I managed not to break down in tears while she was in my house, but as soon as she left I was emotionally drained and I cried for ages.Please see earlier answers.

She kept saying things like, ‘So your pain is down to the problems with cancer ,’ when actually my pain is more to do with the other neurological condition that I have, but she ignored me when I tried to correct her. She asked one question and she wanted a one-word or a one sentence answer. Then she went on to the next question regardless of anything I wanted to say. Her version of my situation was so inaccurate.Causing me financial difficulties, limiting my usual activities and involvement with other people (e.g I’ve given up my voluntary work because I can’t afford to do it) and the whole system and continual cutbacks and the need to fight for everything has left me so dejected I really don’t see any value in being alive as a disabled person. It’s taken away my strength (of character) and independence, my ability to have fun, my enjoyment of family activities, and now I’m really worried about my future. My health has deteriorated and I haven’t got the energy or resilience to recover from relapses as quickly as I used to. I’m run down and feeling powerless and useless.

Freda

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