Monthly Archives: May 2018

4 The PIP Process – Part 4: A passport to dark places

I catch myself with my fingers hovering over the keyboard once more.  Why? Because I have chosen to write not only about PIP again but with a particular emphasis on its adverse impacts on my mental health.  To put this into some context, blogging isn’t an easy thing to do. Particularly when writing about things of a personal nature, and especially when those things are sensitive. I love writing.  Sometimes though, when it is just you and a blank page looking at you, cursor flashing away, it can feel daunting.

A health warning

A bit of a health warning here.  This blog might not be an easy read.  If you’d rather not go beyond here, I totally understand and have been there myself.  Be compassionate with yourself and don’t read on.  If you feel able to, then feel free to carry on.

Some context: My own lived experience with mental health

Though I have written on my mental health before, it still is a tricky one.  That I am gingerly putting pen to paper now is a tribute to my courageous wife.  I told her that I was thinking about writing on this topic and was worried about it, because of the stigma that, unfortunately, still surrounds mental health.  She smiled at me and said ‘but Chris, it is for that reason why you should write it!’ So here we are!

In terms of my mental health, I have lived with depression and anxiety for several years.  I have had a couple of very difficult periods with it, and have been on antidepressants for over a five-year period.  During my first period of difficulty, whilst I was writing my PhD, one of the perverse benefits of being in a particularly dark place is that I had lots of help, for which I thank my lucky stars.  I don’t think I’d be so fortunate now.  I had two years with a brilliant therapist, who was able to give me the tools to unpick a lot of things, re-examine some core beliefs, offer a good bit of challenge along the way.  I had chosen to make life difficult for myself, as, probably due to my own lack of self compassion and regard, I refused to take anti depressants.  Those health information leaflets have a lot to answer for.

My personal take (and no, I’m not a clinician, so feel free to disagree) is that once you have had depression and anxiety, it stays with you.  It’s the ability to manage the symptoms which matters.  It is things like PIP that pose a challenge to the coping strategies I have developed, particularly as a result of what the process requires.

PIP as a passport to dark places

Let me be completely clear on this.  I’ve done many difficult things and successfully negotiated them.  PIP is right up there.  It has probably been harder to complete than my Masters from Cambridge, and could yet rival my PhD depending on how things go.  I have no doubt from my experience thus far (and its the early days!) that the way the process is designed is deliberately so in order to put people off from applying.  It is deliberately inaccessible, and one of the most technically complex processes I have experienced to date.

Due to its unflinchingly personal and clinical approach, the PIP process is also a great passport to dark places.  I understand that it is important to have an overview of how my impairment(s) impact on my life.  It is the way the process goes about them that isn’t right.  I have previously described PIP as an exam on everything I can’t do.  The consequence of sitting that exam is that you are left with a reminder of exactly how disabled you are and how difficult life is.  You question yourself.  You arrive at the realisation that a so called ‘good day’ is one which is marginally less difficult, and a ‘bad day’ is when you can’t get out of bed, except to struggle to the toilet.

When embarking on, and enduring the process, it feels like being Humpty Dumpty.  You have a great fall, and nobody else can put you back together.  That is left to you.   To date, I haven’t experienced any measure that is there to make the process a little less uncomfortable to complete, a little bit more human.  It remains to be seen whether any such measures exist.

Then there is the waiting.  My form has been gone a week, after being sat in my car boot for two.  Only the rapidly approaching deadline forced me to take action, and that consisted of me asking someone else to post it for me.  Every day now I dread what the post brings, which I am sure will be a call to an assessment process that I expect will be every bit as bad as the form.  That waiting, though an inevitable part of the process, only adds to the difficulty.

I should add at this point that I am lucky to have a great support system and am nearing the completion of a two-year counselling course that has been immensely helpful in allowing me to both contend with and contextualize the process.  In fairness, I do over think things (its one of the things that my anxiety specialises in!) but I wonder how anyone without access to that support gets on with the process.

I have said it before, and i’ll say it again…surely there has to be a better way to conduct a process than this one?

4 The PIP Process – Part 3: Writing Away my Dignity

Well dear reader, I can only avoid the dreaded form for so long.  I have previously described the PIP form as an ‘exam on everything I can’t do.’ In most fair exams (and I’ve sat my fair share, and marked a few too!) the objective in setting and sitting them is to find out how much people know, and give them a chance to show this.

And then, there is the PIP form. A very different exam.   I shake my head as I write this, but this is a form so impenetrable that I could not complete this on my own.  How can this be right?  So, following lots of good advice, I gingerly picked up the phone to the Citizens Advice Bureau (CAB) and made an appointment.  That phone call was so pivotal.  One of the many sinister aspects of the form is how it has led to me questioning fundamental things about myself.  Simply put, the form messes with your head.

On phoning the CAB, I was met with a response which was understanding and knowledgeable.  Yes, the form is hard to fill in, yes you are right to seek advice.  Perhaps most crucially of all – no it isn’t just you, and you are not on your own with this.  I was reassured, and my resolve topped up.  After all, filling in the form is only the mere beginning of a process that could take months.

So I head for the appointment.  I was met by someone who I’d never seen before, but who set me at ease.  Yes, the form is horrible I was told, but I can help you through it, and we will fill in the form today.  Avoiding it (the form had sat in my car boot for a couple of weeks!) was no longer an option.  At this point, I had to make a conscious decision to switch my feelings off.  I had been given some advice to treat the form like an academic assignment.  The value and reality of that advice hit home now.

At this point, dear reader, I want you to imagine that you are sat in front of a stranger with a big form.  The results of this form will have a fundamental impact on your life, so you have to get it right.  The following are the topics on the form:

  • Your impairments, and how long you have had them
  • Any tablets or treatments you are having
  • Whether you can cook or prepare a food/meal
  • How you eat and drink
  • How you manage treatments for any conditions or impairments you have
  • How you wash and bathe
  • How you go to the toilet
  • How you get dressed and undressed
  • How you communicate with others
  • Your reading and writing [How you complete this form if you can’t read or write is beyond me!]
  • How you mix with other people
  • How you make financial decisions
  • Going out
  • How you move around

Essentially, the form requires you to strip your life bare.  It is at this point you perhaps see why I had to switch off.  Had I thought through how this exercise actually felt, I couldn’t have engaged with it, or with the person who was helping me to fill it in.  As the form was being completed, my dignity was being written away.  Even for someone who is used to describing my impairment and its impacts to others, this form felt intrusive.

Now for the science bit. I had heard there was a knack to completing the form.  There is.  Behind each part of the form, there are descriptors that inform how the form should be scored in order to work out the levels of any award you might get.  You have to decide for each part of the form:

  • How long it takes you to do the things described, and whether this is ‘reasonable’
  • Any help or prompting you get from others
  • Any help you need but don’t get (what?!)
  • Any variation in the activity (whether you have ‘good’ or ‘bad’ days)
  • The impact of doing the activity

You then need to look at the descriptors to see what you think best applies to you and write your answer to that using the above criteria.  Are you still with me?  Yes, its complicated.

You also have to make sure that the form fits together, as bits of the form overlap and any inconsistency will count against you.

The form took several hours to complete.  Mentally, I then had to build myself back up.  Even for me, the form had bought up some surprises.  Things I had done, coping strategies I had developed had to be included in the form.  It took me a few days to get over having the form filled in.

Again, I have to say that the advisor I saw was brilliant, and juggled the complexities of getting the form done, whilst being understanding and patient.  Oh, and he also had to hand write the form for me, with my input.  My own handwriting is awful, and there is no electronic version of the form available.  Just another inbuilt barrier and a further feature of inaccessibility in the process.

So I came away with a completed form.  I then went to see my doctor about it, as they will get a letter too.  I am fortunate to have a GP who has taken the time to me.  As I sat in the surgery, I reflected on the emotional and financial costs of this system.

It seems wasteful, inaccessible, and inhumane.