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.

About the Author

Chris Whitaker was born and grew up in Cheshire, arriving in the world with cerebral palsy after a complex childbirth. Apparently, he was lucky to be here at all and has tried to make the most of life ever since! Chris has worked in the third sector for a few years now and is also a charity trustee. Making a positive difference every day is what drives him and he gets to see the impact the third sector makes. Chris has also been able to use his own lived experience as a disabled person to make an input into his working life.

Leave a Reply 3 comments

JayneL - May 7, 2018 Reply

Pleased to read you actually managed to find someone able to help. I truly empathise with you and wish you all luck in the selection of who becomes the decision maker, hoping its a good one xx

Sharon Moncur - May 7, 2018 Reply

So glad you looked for and found someone to walk alongside you as the form was completed. As always, I send my thanks for the light you shine into a place I don’t have direct experience of. I can only hope that I and others will have more compassion and understanding as a result. Big hugs to you both x

Andrew - May 8, 2018 Reply

I have been there and it has left me a broken person, The form is a complete waste of time because they ignore it when you go to the interview. You have the go though everything again so take a copy and quote from the copy when asked a question. I have been stripped of my mobility benifits but qualified for care.
It is soul destroying process, the person at the interview writes a report, mine was a complete work of fiction by her, do not be fooled by the nice lady/gent they get paid to fail you.

Goodluck you will need it. ps remember to keep copies of everything and they are there to strip you of your benifits not to help you.

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