Health and Disability · Invisible illnesses

PIP assesment

I finally had my assesment on Wednesday after having it cancelled last week and rearranged! That was a nightmare in itself, but I finally got the date and time so I’ll tell you all about it.

My applicant meant was at 8.45am which is really early for me, as I’m a bit useless until about 10am, so already I was worrying about getting up that early and getting there on time. So I set my alarm For 6am and planned to leave the house at 8.15. The centre is only about 10 mins drive away from my house, but I didn’t want to be late, and know it takes me a while to get the scooter out of the car and sorted and I didn’t know where I’d have to park and how far away I’d be so I gave myself enough time. It takes me ages to get ready and I had to have a couple of rests as I really struggle to function that early in the morning, but I managed to make it there on time and found it easily with the help of music sat nav.

Parking was a bit odd as there wasn’t any visible disabled parking, although all spaces were close to the entrance, there wasn’t any with extra space to get a wheelchair or scooter in or out of the cr, so I just parked where there was a gap around me and hoped no one parked too close for when I came out. Getting to the door was a challenge as there wasn’t a lowered curb so I had to bump myself up a half size curb and head to the door which was locked. I buzzed and it was opened electronically, but I could see that getting in was going to be a struggle as the door was really narrow and there was a wall straight ahead so manor earring with a scooter was really difficult. I got into the reception and the lady there was friendly and welcoming, took my ID and joined me in complaining that the building really isn’t designed for disabled people with mobility aid’s and it wasn’t really fit for purpose.

I was the first person there and as we chatted I found out that the assesment staff take the clients as they arrive and are not pre allocated as they have to see a certain number of people per day. This seems counterintuitive to me as when I got in the last assessing me told me she’d had to google my condition as she’d never heard of it before. Surely if the assessors are allocated clients the day before then they would be able to do some research and make sure that they had read the forms and were prepared for the consultation. Obviously I am aware that people don’t turn up for their appointments and this leaves pockets of empty time, and productivity needs to be maintained at a specific level, but if the assessor is fully prepared then surely the consultation will go smoother, quicker and they will have fewer complaints and appeals? Just a thought.

So I managed to manoeuvre into the room, another small doorway and looked at the chair that I was expected to sit in and asked for a more comfortable one, a desk chair would be perfect. The assessor got me one and it was no bother at all. There was no way I could have sat in that chair for an hour (how long the consultation was meant to last) as it was I was wriggling around and moving my position the whole way through (only lasted about 40 mins). I was seen by a lady who was about my age which was good and bad at the same time.

I find that these assessments and forms are completely depressing. They highlight what I can’t do anymore, what help I need, and how severe my disabilities have become. As things have progressed and I’ve gotten worse I’ve adapted, I’ve made changes to how I do things, I’ve added in aid’s and support where I need it, but it’s happened over a period of time. The big things are stressful and depressing and take a while to get used to, but the little everyday changes kind of go unseen. Having to use a walking stick, change my job role, drop my hours, leave work, use a scooter, these are the big things. I’m still not fully comfortable with them all, but I can look on them one at a time and have had some time in between each one so I haven’t had to deal with everything at once. The little things like adding in medications, doing physio, adding in consultants, getting smaller aid’s like my toilet frame and bath seat have been little things that I’ve just adapted to and added in. Choosing food that doesn’t need cutting up, cooking in batches to see me through for a week, these are the easy little things that you don’t really notice, but when every, single, thing, has to be written about, assessed and thought about how it affects me every single day it gets overwhelming and really hard to deal with. So just filling out the forms was a challenge for me, plus I was automatically rejected when I first applied and had to go to a tribunal so I was dreading a similar experience this time when I’d have to fight to prove how ill I am. I hadn’t been sleeping properly for the week before my initial appointment, then having it cancelled was a nightmare, so I had another week of not sleeping properly and worrying about the assesment to deal with. This poor woman was never going to have a good start to her day!

I explained that I was really worried, she assured me it wouldn’t be bad, that she’d ask me some questions to clarify what I’d put on my forms, then do a short physical exam and it shouldn’t last too long. I managed to hold myself together for the first few questions then I lost the plot and was crying at her, luckily she had some tissues so I managed to continue answering the questions. I really can’t remember what she asked me. I do remember that she started off just clarifying my condition, what medications I was taking, if anything had changed since I’d completed the forms and then we moved into the questions that get you the points. This is when I started crying, but I think that I managed to get my point across and explain how things affected me in an honest and utterly depressing way. I got upset as it wasn’t too long ago that I had a good career, was earning really good money, was living a fab life, even with my health conditions, then in the last 3 years things have just deteriorated rapidly so that I am at the stage that I am now, needing mobility assistance, struggling to get through a full day, napping, needing help with basic tasks and filling my body with loads of painkillers just to take the edge off the pain that I experience. I can remember saying to her that I used to be able to do everything myself and my life had changed so much! She was really lovely, kept reassuring me and being professional just getting through what she needed to do. The mobility questions were the ones I was worried about as getting awarded the higher rate of mobility would be a huge benefit to me, but I know it’s really difficult to get. When I’ve read through the criteria and how they award the points I think that I qualify, but it’s difficult to explain to someone how painful, exhausting and challenging walking is now, so I have been timing myself walking different distances as at my tribunal the judge was asking me how far I could walk and how long it took me. I have no idea…do you? Does anyone? So I’d been preparing for this, but all she asked me was which aid’s I used to walk, asked me to describe how I walked, which hand I used my stick in and that was it! I don’t know if that’s a good or a bad thing, but I guess I’ll find out when I get the report and see what I’ve been awarded.

The physical exam was the worst bit, and I totally lost the plot here. Due to massive lack of sleep for almost 2 weeks along with the stress of knowing that this was going to happen, plus getting up ridiculously early I was in a lot of pain! I was rally struggling to hold it together pain wise, but being stressed makes everything worse so I was in agony. I managed to stand up, leaning on my stick and the wall, did a few arm movements but struggled and cried through all of it. She didn’t make me do the squat move and we both laughed that yep that wasn’t going to happen today! Every movement hurt and she kept asking if it hurt which I replied back by crying and nodding at her. This was embarrassing and a bit humiliating as I have no idea what these movements have to do with the questions, but they’re obviously there for some reason…

After the physical exam she explained that the report would go to an independent assessor to be finalised then I’d get the report. I asked why I’d had a new assesment a year before my PIP was due to expire and she said it was probably becuase I’d claimed ESA so it raised a trigger that things had changed for me. This made sense and is a good thing as I might be entitled to a higher allowance, but wouldn’t have got it until next year, but I could also loose the allowance that I get now, hence the stress and worry. She said that because my condition was deteriorating and hadn’t levelled out yet she’d set the review for 18 months time as things might have changed again by then, again, stressful but good.

So after all of that she helped me to manover out of the door and came with me down the hallway. Her and the receptionist had to help me get the scooter out of the door as it got stuck and I couldn’t do it! I got to the car, luckily no one had parked beside me so I was able to get the scooter into the car and I sat down and broke my heart. I’m so glad that we have a benefits system. I think that it’s vital to society to look after people who are unable to support themselves. I think that it’s a safety net and not a lifestyle choice. I agree that there should be regular checks and assessments to make sure that people cannot abuse the system, but having worked with people who have been dealing with the system and have complained about how hard it is I really didn’t appreciate how hard it actually is until I have had to fully avail myself of it. It’s so hard, everything is such a hassle and a challenge. Nothing is straight forward. Buildings are not fit for purpose. Staff do not have the time or training to be able to deal with people personally and with dignity and professionalism. The forms are horrific. Evidence is never straight forward and you often need the same things for lots of different departments. Assessments are humiliating and everyone is just trying to do the best that they can. The staff that I have dealt with have been helpful and understanding. The system is not fit for purpose and needs to be adapted to ensure that people are able to claim what they are entitled to without feeling as if every single aspect of the process is a battle that has to be fought and won at any cost.

My experience has been both positive and negative but ultimately it’s been and will continue to be a big part of my life. Every couple of years I am going to have to go through this again and I have my ESA assesment to go through yet, so fingers crossed I can calm myself enough to get through it without the stress, anxiety and sleepless nights that have plaugued my PIP assesment. I’ll let you know what I’m awarded once the report comes through, as only then will I be able to say if it was a good assesment or not.

Good luck if you’ve got anything similar coming up!

Vic xx

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