Monthly Archives: April 2018

1 The PIP Process – Part 2: The form arrives

The wheels PIP process are definitely turning.

There was a big ‘thud’ as the post arrived through the door this morning.  My heart sank, and pulse quickened, as I suspected I knew what this would mean.  I was right…my PIP form had arrived.  I had been warned about the length of the form and about what to expect, but nothing quite prepared me for the reality of the form.  It sits beside me as I write this, the deadline for the return of the form glaring out at me from its box.  In this blog, I want to talk about the impact of the form arriving and the effect that this has.  I’ll talk through completing the form in a future blog, because, as for reasons that will become clear, I’m not about to complete it yet.

It reminds me of an old exam booklet, complete with instructions about what to do and how to do it.  Except at 40 pages, this form may take a little longer than the traditional 3 hours to complete.  At this point, I want to say a big thank you to those who have reached out to give me words of encouragement and support.  Rest assured, I’m not completing the form without some serious professional and informed advice from a variety of sources.

As I flicked through the form, the feeling of an exam stuck with me.  I felt overwhelmed.  There were some easier questions about who they should contact (I had already given this information, but I suppose some duplication is to be expected.)  The form though feels like a missed opportunity, and as if there is some magic spell needed to unlock the code around it.  At first glance, I don’t even know where to begin and just feel very, very sick.

Lets put this reaction into context.  I am blessed with a good head on my shoulders and have a masters from Cambridge and a PhD.  I clearly have at least a reasonable command of the English language and am used to navigating systems.  However, this form left me feeling stumped.  Whilst I don’t claim to be a genius, my question is, if I’m struggling with the advantages I have, how the heck have other people gone on?

The other thing about articulating the impact your disability has, is that it can be quite tricky.  I have had CP from birth.  When I first talked about the form with someone, I went through a lot of the adjustments that I had to make in everyday life that are second nature to me.  These will all need to be unpicked and put into the form, which I presume will then be assessed by someone with no understanding of my particular impairment and how it manifests itself in my case.

As the form continues, I feel as if I am almost on trial – “tell us why you can’t do this” “tell us how long it takes.”  To me, the form also has a kind of sinister tone to it, a kind of medical model writ large approach that feels deeply uncomfortable.  Whilst having to disclose details of an intimate nature it itself also second nature, somehow this feels different, as if I have to show I am ‘disabled enough’ to merit the vital help I have had throughout my life to this point.

The form also cuts against the grain to me.  I always try to be positive in my outlook and approach to life, to try and focus on what I can do.  This form just feels a bit like an exam on ‘everything Chris can’t do.’  Then there are the reminders on the form – to include all my evidence, to not delay, and to ensure I do everything I can to include it as “delay in receiving evidence on which I intend to rely” might throw a spanner in the works.  Also, is it just me, or does that wording sound a bit like a police caution?

Still, there is hope.  The form will get done..and if all else fails there are appeal routes.  According to latest statistics, almost 80% of tribunal decisions go in the claimants favour. With figures like that, it’s almost as if the system is designed to deter people from claiming in the first instance, and reward persistence.

Sources of support for the PIP process

I have received lots of helpful tweets on where you can go for help in filling out this form.  I’ve not personally used any of them yet so can’t recommend or comment further, but these include:

• Citizens Advice
• Benefitsandwork.co.uk
• Third Sector organisations
• Your local MP

1 The PIP Process: Part One

This was the text I woke up to on Friday from the DWP. Upon reading it I felt sick. I also felt patronised (as if I needed telling to fill in the form carefully!) and intimidated (fill in the form or else you won’t get the money that you need to meet the extra costs that come with your impairment.)

In a sense I am one of the lucky ones, in that I have not been asked to go through this process until now. It’s important to outline the psychological effect that PIP, and the prospect of this change, has had though. The problems with the PIP assessment process have been well documented and the worry about having to go through this process has been at the back of my mind for literally years.

Imagine waiting for a letter you have wanted to come through the post. Each day you await for the arrival of the mail that day with a sense of keen anticipation. You might even look out for the person delivering the post and feel a little surge of adrenaline when you hear their footsteps or the doorbell.  Now imagine that this is a letter you have dreaded getting. Swap that excitement for fear. This is what waiting for that letter has felt like.

I got this letter on the Thursday before Easter. Or more to the point my wife did. She’s been keeping an eye out for the post for years too. She saw that the letter was from the DWP, guessed what it might be and opened it for me.  She was then able to tell me, very gently that the letter had arrived.

After calming down slightly, I picked up the phone to begin my claim. I wanted to at least have started the ball rolling before Easter. I captured how I felt after the call in the following tweet:

I’ve always been told that first impressions matter. You set the tone, get it right, and it establishes trust and helps to build good foundations. I’d heard the horror stories with PIP. I’d read the critical reports and tweets and news stories. They’d have made sure everything was thought of and ran smoothly now, right?

I was left shaken and literally shaking after that first phone call. The failure to be able  to even answer basic questions like ‘what comes first, form or assessment?’ (turns out it’s the form!) gave me no confidence at all. 

At times the call also resembled a police interview under caution as I was warned that I had to be accurate and warned about fraud at least twice. The impact of this is that it ramps up the nerves.   I felt like I was under suspicion and being watched.

I was also struck by the technical nature of the process, the questions involved and what was asked of me. So much so that I talked about the possibility of using an advocacy service to help me at one point. When you consider that I have a Cambridge degree and a PhD and am struggling, what hope does someone without that background have? The process is a fundamentally inaccessible one.

I’ve also had to make an appointment with my GP. Apparently one of the things that can happen is that a medical assessment can be filled in without you actually being consulted with. I should say at this point that my GP is great and has been supportive in the past. What my GP doesn’t have is 35 years worth of experience of Cerebral Palsy and an understanding of how this condition can impact on day to day life. We’ll hopefully get to fill out the medical paperwork he gets sent together.

So now I await the form. Thankfully, I’ve had lots of support from my friends and other disabled people who have been through the process. I’m really grateful for this as it has helped me to have a better understanding of the process and what will happen next.

Let’s see what the form brings…

1 The ‘Editing Out’ of Disabled People from society

A rather sinister thought crossed my mind as I was munching my way through my Easter Eggs and hot cross buns and mulling over the arrival of the notification that I would need to start my claim for PIP.

I had seen a story that there were no school places for people with Special Educational Needs. The gravity of this, and its profound potential consequences, really hit home to me as someone who had begun life in a ‘special’ school (as it was then called) in 1985 and had the opportunity to transfer to a ‘mainstream’ school in what at the time was a brave experiment and almost unheard of when it happened thanks to some really progressive (and brave!) teachers and parents.

Following some surgeries, I then returned to the special school a few years later, before going on to mainstream primary and later secondary school.  Even at a young age I could see that both places had their own value and an important, distinctive role to play.  From there, I was lucky enough to go on to get my degree, masters and PhD.  I can say with near complete certainty though, that I wouldn’t have had those opportunities if I couldn’t have even got to school in the first place.Educational exclusion is particularly problematic and damaging to the life chances and prospects of young people.

Young people then are effectively being ‘edited out’ from the system, excluded before they can even get any kind of place within a structure that either isn’t equipped for their needs, or worse still, doesn’t want them.

Being ‘edited out’ in other contexts?

Does this happen in other contexts?  I wanted to know more.  I spent a while looking around the literature and found that this idea in and of itself is nothing new.  Disabled people had long encountered structural barriers to their progression in society.  This is, after all, what the social model of disability has told us for many years.

What struck me was the acuteness of the problems faced in the present times.  Disabled people are still contending with the consequences of welfare reform (e.g. PIP, ‘Bedroom Tax’) coupled with other things to ensure they are ‘edited out’ and invisible from public life.  There are numerous other examples of this too.  Take for example, well documented issues on public transport for disabled people, or even the campaign to remove straws from public places.  A straw is one of the most important tools that many disabled people can have, and without them, simple things like getting a drink can be a non starter.

A particularly sinister ‘editing out’ trend comes in disabled people being asked to pay for their own care contributions (something which is currently under consultation in my own local authority.) The equation is quite a simple and stark one..pay more for your own care..if you can’t afford to have the care…don’t have it and the impact on quality of life is catastrophic.  You are once more ‘edited out’ and precluded from accessing society before you even leave the door.

And a paradox…

There is an abundance of technology and mechanisms that should make society more inclusive than ever before.  The very computer i’m writing this article on is a prime example.  Therein it could be said, lies the rub.  Technology costs…and how is one supposed to afford it when eating could well be a struggle, according to recent findings.

So what to do?

There is no doubt, dear readers, that this is bleak stuff.  I hope, as I move beyond the preliminary sketch presented here and dig deeper, that there is evidence to disprove my theory, and for  my working hypothesis to be disproved….time to dig deeper.  I’ll keep you posted.