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Friday, 24 February 2017

PIP Assessment

My day begins at 4:30am in preparation for an appointment for somebody else at 8:10am.

For a whole month now my mother has been stressed out about an appointment for an assessment on her health, as she has to worry about how we will get to the place, the idea that we will be late and turned away, and when it going to happen and if she will actually make it there without having to pee herself.

My life as an unpaid, unacknowledged, carer: for others it's an amusement as her crazy thoughts which are freely spoken are funny for the little time which they have to listen. Yet when they become an endless circle of anxiety ridden tensions, a stream of persistent confusion, which we talk over again and again, it's not so funny.




I should explain that her (and mine) woes increased last year when life began to change in her enclosed world. My father, her husband who she had lived with for forty two years had reached the point where officials decided he would be better served in a care home. This was a decision that did need to be taken yet the consultation with his family especially my mother was dealt with very poorly, and since then everything in her world has had to change. In November of last year the social worker that dealt with my father had stepped in to help a little with my mother's worries and by this I mean that he helped fill in a form for ESA for her and got someone in from a money team to discuss benefits with her. They then called in a lady from the citizen's advice to help complete a PIP claim for her. Previous to this she had not been claiming any benefits at all and just assuming that her husband got extra in his allowance - I don't believe that was the case, so in effect she had been out of the system for at least five years. Before this she had a cleaning job to keep her afloat, that I believe actually made them worse off financially (another thing for me to rant about another time).

At the time I was in full time work and trying to keep up with extra care for both parents on evenings and weekends which was taking its toll so I was glad that she had some help to explain these things. My mother has high anxiety levels and gets confused easily however she doesn't see or accept this, and after we lost my sister two years ago this has understandably fuelled these issues. In my uneducated opinion she needs counselling yet this is never offered and she will not ask for it. We probably all know or have someone that does not accept help easily nor admit to actually being unable to do something. Growing up my mother was never ill, or rather she was ill but would never admit this, I've known her to be screaming in agony all night with sciatica yet still get up and drag herself up to do the things she feels she must. Her other problem is she is suspicious of medicines (especially now since she hears of all the side effects) so has never wanted to take medicines or tablets even though they would help, so instead I see her crying for days and not being able to move because of the one day she pushes herself too much.  I can only assume that she has a higher pain tolerance than most people, or is more stubborn: I'm glad that these are the traits I inherited rather than the OCD and the anxiety breakdowns.

So you can see here that my mother doesn't help herself and in turn it's very difficult to be able to help her: I'm sure there are many more people in the world like this and it does worry me that some are left alone because they never get to ask for help; then it becomes too late.

But let's get back to my original purpose eh - My daily experience with helping someone though the DLA aka PIP claiming process.



I guess I should also point out that after the month of stressing about times, and taxis and getting places because my mother can't do the two bus journey suggested by the Capita who carries out the PIP assessments, and the fact she wouldn't allow me to organise a home visit because she abides by officials rules (i.e. listens to anyone else but me); then listening to a day of worries about going outside due to Storm Doris, you could say I was a little fed up. So we had come to the arrangement that because I do not drive and she didn't trust the taxi service that my partner would drop us into town on his way to work in the city: the only drawback that it would be before 6am. Now this would mean a two hour wait and a longer walk than comfortable yet it seemed to be more acceptable to calm the anxiety of relying on taxis.

So this is how the day went:

5:15am I ring to check that she is ready to be picked up and we have a conversation about how she doesn't know if she can wait two hours and worried about toilet facilities or if somewhere is open (which I had already checks and discussed).

5:30am I am still on the phone and inform her that he has to get to work so the decision needs to be made now or I will order a taxi at 7am. She says yes to this so I say to rest for an hour.

5:30am She rang back almost immediately to worry that the taxi won't turn up because of the trees and - I leave her to talk as I rush out to stop the car from driving off. Go back to get my bag and then she says that she can't wait in a coffee shop that long so I go back out to wave at my partner and shrug apologetically, hoping that he still got in on time.

5:45am I tell her I am now putting down the phone and having breakfast so she should try and rest up.

5:50am I get a phone call to say I need to book the taxi and explain where we are going and that we have to get there for 8am and can't be late. She is worried because a previous taxi driver said they can only stop in two places in the city; both far away from the place. I tell her that we have been through this already and if a normal driver can get a car down the road then so can the taxi and she just got fobbed off before.

5:55am I book a taxi and explain all these details even though the operator assumes I'm mad, then text to confirm this as I know another call would just waste another ten mins.



6:50am I call to make sure that she is ready to go as the taxi will be here soon: if I don't then we will end up waiting another 15 mins while she does the locking up ritual and goes to the toilet twice.

7am The taxi arrives so I go to fetch her out and carry the extra bag of stuff that she always provides (I now keep an extra canvas bag inside my handbag to combat this). She asks how the door locks again (which worries the hell out of me but she persists she hasn't got a problem with dementia) and then she locks and checks it several times as I'm trying to usher her into the taxi.

7:20am We arrive early due to aiming to miss the morning traffic; the taxi driver is relieved that we didn't go later as he knows how bad it gets. We both agree that it is a ridiculous time to assess disabled people in the middle of a City Centre during the main get to work/school traffic hour at 8am. Yet I guess this is the first cross on the test, isn't it.

7:25am We entered the building where we are told by the security guard that the office isn't open until seven thirty, I usher my mother onto the sofa in the lobby as the guard tells us we can't wait inside. I protest that it's freezing outside and she will be ill waiting in that weather. My mother is getting anxious as she doesn't like confrontation yet the guard is clearly sympathetic yet trying to do his job which I understand and said when the boss came to kick us out I would tell them he did ask us to leave, I don't like to get people in trouble, I just was concerned about the cold.

7:30am The (I assume) higher rank security guard comes downstairs and quickly walks through barking orders that we leave the building and have to wait outside, I begin to protest yet my mother is already moving and goes to sit on a small wall outside the building. She wasn't prepared for standing in the cold and she won't accept my scarf yet her teeth are chattering within a minute. Half hour outside and she might well be frozen since her age isn't helping to circulate warm either. The is a cafe that is 'coming soon' next door but not soon enough and when it does I guess it will be a gold mine. I wonder to myself if Capita own the cafe too.

7:40am I forced her to walk to the corner coffee shop just because there was no way half hour in the cold would have been a good idea. Second cross on the test.




8am We get back to the building and see there is now a queue: the saddest sight I have seen in a while which just makes me so angry. Several elderly people that are clearly too cold in the wind and propping themselves up against the windows with their sticks, a lady in a wheelchair with a carer shielding her from the breeze and a guy with a holdall who was actually there before us waiting outside and was waiting for a case worker to show.

I'm absolutely disgusted that a place for a disability assessment could be in a building with no waiting facilities when they give everyone the same appointment time of 8:10 am and then scare then in the letter by pushing the point of having to be there in plenty of time. Clearly this is not run by anyone used to dealing with people of any disability otherwise they would know that they always plan and add extra time and get everywhere early: mostly because they have to.

I watch the slow herd of people all being sent into the lifts: it takes three lifts worth to get everyone inside and the guards and receptionist have to use their security cards to operate the lifts, they don't seem enamoured by this prospect and by their expressions I feel that we are inconveniencing them. I worry that if the lifts get stuck then nobody inside would have a card to operate anything and I don't even have anxiety issues.

As we pour into the room which uses an automatic door, I note that it doesn't really seem very big for a place expecting to see a high turnover of disabled people with walking aids. In fact the lady in a wheel chair is asked to move from the position by the door yet there doesn't seem enough room in the aisle to move 'it' as they put it. I flinch at this expression and always wonder how maddening it must be to be described as an 'it', they are a person relying on a wheelchair so surely this counts as an extension of the person rather than a thing: maybe it's just my odd way of thinking though.

8:15 am After everyone starts to settle down and people are issued out tickets and assigned to caseworkers, it becomes clear to me that the receptionists upstairs are the stars here. They are polite, friendly and efficient and no doubt have to put up with the complaints from people every morning about being stuck out side in the cold, yet they bear this with an astounding professional disposition.

8:30 Caseworkers & admin overheard talking about the fact that the clients all arrive early and they should be able to open up from 7:30am but they can only get paid from 8 o'clock and I sympathise with them because they are correct. I have worked in places before that only want to pay you ten mins to set up yet expect you to be prepared when in actual fact things take longer to prepare. Clearly the workers know how things should be run yet are caught in the confines set by a higher power than no doubt only sees things on paper and not in practice.

8:45am We are informed that our case worker is has called in sick (the irony that the disabled people all seemed to make it) but they are trying to change to another caseworker. I enquired that the files would just be electronic and could be accessed by someone else and this was agreed yet explained there were also other restrictions. The receptionist who explained still very polite and apologetic which was appreciated as I half expected to be just sent away with another date. I guess the original assigned caseworkers get to read the files early on and become acquainted with their subjects. My mother began to get anxious at these changes and worried about the toilet facilities so I went to find them and found a helpful guard outside whose job it seemed was to open the doors.

8:55am A lady comes in shouting out a name yet nobody in the room responded, she seemed worried and was asking the main receptionist what she could do as someone hadn't shown up either. I had assumed that someone just hadn't turned up for their appointment but then noticed a confused looking young lady seated alone. Then I overheard that the person not turned up was an interpreter and realised that the lady alone was deaf and it was her interpreter that had not shown. I'm afraid I couldn't help but laugh in dismay at the idea of shouting out someone's name knowing they were deaf, it was a small enough room to come in with a name on a paper and show people. Then they continued with more worry as to the conundrum of describing this situation. Standing next to a deaf person without acknowledging but asking another person how to deal with that in the open was not their best moment and I hoped she wasn't a caseworker. Luckily the receptionist was there to help with communication the issue on paper - Perhaps they should allow this lady on reception to take charge of management because she seemed to understand people better than anyone else.


9:00am Overheard caseworkers stating that they were not entirely happy with the extra caseloads and they were due a break at 9:20am - seriously a break already? I guess that the caseworkers get a break in between each case between each client to prepare for the next one and I do understand that if you are talking for an hour then you will need a drink and loo break, but I just couldn't help shaking my head at this early break after knowing that so many people had been having a much worse time on the other side of this system.

9:10am we were told that we would be seen but the caseworker needed time to read through the notes (I guess this was the break but smoothly covered by professionalism). We were just thankful not to be sent home at this point because I don't think we will be making it back soon and especially not that time in the morning again.

9:15am Due to the knowledge that we had time to move without worry of missing anything; mother was able to use the toilets and change pads etc. The toilets were not far but doors were operated by the guard so it was a bit like having to ask permission to go to the toilet (school flashbacks).

9:25am We settled in the room with the caseworker who was friendly and cheerful and perfect to get people to relax around her, I can't fault her for doing her job well yet at the same time I was very aware at the notion of catching people out. I cannot fault the caseworker at all; she was patient and listened to my mother without rushing her. Some of the questions I know were leading ones that my mother was answering one thing yet then agreeing to something else: I did explain that she does understand the questions yet she also gets confused with things though I'm not sure how much this is taken into account. Third cross on the test.


During the interview there was a focus on the physical rather than the mental abilities and my mother has a very clear visual curvature of the spine (scoliosis)amongst other issues and this has gone past the point of surgery yet I was amazed to note that she wasn't asked to walk between two point to see how this affects her. She was instead asked to move whilst seated and then to stand on one leg whilst holding a wall and tiptoe which caused the most issue. She also was asked to touch her toes as far as possible and since she is so short (about 4:10 now) this probably looks further than anyone else can do even when not bending far, but she complied with requests without complaining as I expected (she does as officials tell her) so I guess that was fourth cross on the test. We were done within the hour stated and then got another taxi home by which point my mother sat down and will probably be in agony tomorrow: but that's for her (and me) to deal with.

 Overall the costs of having a PIP assessment have been thus:
A month of agonising stress (for both of us)
Taxi costs = £35
Drinks (to be able to get out of the cold due to no waiting room) = £5
Partners wage docked 15 mins due to lateness Bottle of wine (for me - believe me I needed it)
The knowledge of the next few days in pain for her and hearing about the incoming result for the next 6 weeks

I can't help but think that it would just have been easier to get extra work and just give her the money myself.



 Overall my thoughts on the whole process were this:

 Capita or whoever is in charge of the management of these assessments should really be thinking about the people who they are assessing. I am well aware of the need to crack down on people trying to play the system but in my opinion these are the people that will get through anyway as they know exactly what to say and how to tick the boxes. All we are doing like this is penalising actual disabled and vulnerable people. The staff inside (not the lower building ones) were friendly and polite and I couldn't fault them for doing their jobs as well as they could, hopefully the management team consult them for future changes.

My advice for Capita Management:

• You need to get buildings that either have parking in walkable distance or a bus stop outside.
• You should provide a waiting room for people with acceptable space and in the warmth - you cannot expect elderly people to wait outside in the cold (or heat in summer). Surely your medical professional can tell you that this is not good thing for people who cannot regulate their temperature as easily as others.
• You should be providing open doors push button access to toilets not having people who are already embarrassed to ask someone to do this.
• You should not have staff that seem uncomfortable around people with disabilities or are blatantly rude. If this is the building rather than your own workers then this is still your issue
• You should allow your workers ample time to prepare for the day and pay them accordingly.
• You should give your main receptionist a raise and ask her for tips on how best to run the business as she shone throughout.



 Sorry about the ridiculously long post - It's been a long day *slumps*

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