Altogether I scored 0 points, zero, zilch!

It has not made me ill, but it has made me angry, frustrated and dismayed.

I had a home assessment, the HCP was polite, kind, & seemed, at the time, to understand what I was saying. The assessment lasted almost two hours, and we chatted about one or two other things, to do with, but not directly related to, PIP & ESA assessments. I felt quite positive about the way it had been conducted.I didn’t feel intimidated, disbelieved, or humiliated, the male nurse was polite, kind, and, or so I thought at the time, very understanding of my situation. He didn’t ask very many questions, but, I am someone who offers up information readily, perhaps too much information, sometimes! So he didn’t really need to. Therefore I cannot really comment on his skill at gleaning information by using the correct questions/follow up questions. I imagine with some people it is like pulling teeth, to get the info required, then again, I sometimes feel that they don’t really want to know, they just want to be able to tick a “yes” ,or “no” ,box.

Where do I start!? I put in a claim for PIP after several years on DLA for agoraphobia. For 10 years apart from going into the garden I never left my house, I have improved a little & can now go about 10 mins from home, although I still feel anxiety when I do this. I can go about 1 to 2 miles from home but only in a taxi as I can’t use public transport, again I still feel anxious doing this. I cannot go anywhere unfamiliar on my own. The report said “I can go out” I have had OCD for 53 years takes me 3 to 4 hours to bathe this causes extreme frustration and I often sob and bang my head on the wall in frustration but, until recent years I did this everyday of my life, I just got up really early to get to work etc!!

In recent years I have developed arthritis in several places and a motility problem with my esophagus which causes constant reflux, When I bathe it is like a 3 to 4 hour workout, this causes pain with the arthritis and terrible heartburn/discomfort from the reflux, this is on top of the mental anguish already described. I started putting off bathing everyday, it was the choice of the lesser of two evils, feeling dirty and disgusting, or bathing and being in pain during and for several hour afterwards. The gaps between baths got longer & longer over the years I now only manage about one bath a fortnight I spend 1o out of every 14 days feeling, dirty & disgusting also I cannot get dressed if I don’t feel clean, this is part of the OCD I think, I can wear a dressing gown but not day clothes, this means I don’t go out. So this is having a knock on effect on the agoraphobia.

But the report said I don’t use aides for bathing so – 0 points. I normally take 400 mfg of Tramadol a day and have done for 10 years. Recently my GP wanted me to come off them to see if they were causing another health problem excessive sweating. On the day of the assessment I was down to just 50mg a day I told the HCP this and explained why I wasn’t taking my usual, needed, 400mg a day. The report just said that I take 50mg seemingly my actual prescribed dosage was “not relevant” or at least that’s what I was told when I complained about it. Also the reliability criteria seems not to have been taken into consideration at all as regards how long it takes me to bathe, and the fact that I cannot get dressed, albeit that this is caused by a mental problem and not a physical one it is, in my opinion, relevant.

Altogether I scored 0 points, zero, zilch! It is the fact that I got 0 points that has spurred me on, there is no way that that is right!!I am very angry, and this is making the reflux worse, I also feel agitated, feel I won’t be able to rest until I get this sorted. I feel as if all that I said and explained and the great lengths I went to to help the guy understand how I feel has just been ignored and I may as well have talked to the cat!! Although I say I am angry and determined to see this through, I think it has upset me too, I have been crying on and off, and I slammed the phone down on my son the other day, over something that I wouldn’t have done a few months ago.

Haven’t heard from him since! If I had missed out by a few points, but felt that my struggles had at least been acknowledged, I would be disappointed but I wouldn’t feel angry and upset, as I do now! I am a strong person, and, luckily, able to express myself and not afraid to do so! Going to a Tribunal (apart from the being away from my safe place) doesn’t phase me one bit, but how do people who are shy, not very good with words, expressing themselves, manage. What about those with social phobia or those who feel very ill? This must be horrendous for them, and it shouldn’t be happening. People don’t mind be assessments, but they expect them to be thorough, honest , accurate and fit for purpose. It shouldn’t be like this, it is cruel to those who are very ill and /or those who struggle to put their case forward.

Norma

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