Monthly Archives: September 2019

0 Establishing Marathon Pace – reflections on the first month of PIP stories

We’ve come a long, long way together
Through the hard times and the good
I have to celebrate you…
I have to praise you like I should

These are the opening lyrics to ‘Praise You’ by Fatboy Slim.  These lyrics sum up what has been a frenetic first month on the PIP Stories trail.  I want to give praise to all of you who have helped in a collective effort to date, as we have come a long way already.  That I write this on a new computer purchased to keep up with the rigours of this work is also partly testament to that!

In this first month, over 500 PIP stories have been received.  Each one has its own take on the PIP process. Individually and collectively they raise some huge issues and point to a live and ongoing issue for so many people.  I have been moved and surprised by the wide ranging impacts that the PIP process has, and continues to have for the many people I have spoken with on an individual and organisational level.  Efforts must continue to be addressed at achieving positive changes, and the PIP stories work is one such effort, picking up on the hard work of so many before me which it is only fair to acknowledge.

Though there has been a lot achieved in a space of time, there is also a lot to do.  This is where finding a sustainable marathon pace comes in.  Drawing on my previous experience of undertaking qualitative research, I have thought carefully about the methods used and arrangements to set up to support this work, which I hope will make it as robust as it can be.  For me, this includes debriefing and supervision from a trained professional.  In one of my supervision sessions, we talked about the importance of this work being sustainable, and setting achievable short, medium and long term goals.  I have no doubt that in order to achieve the positive changes I would like to see will take a long time.  A pace must be set to achieve this.  Usain Bolt, I am not, and never will be.  Usain is many things, but a marathon runner in not one of them. This work needs carefully pacing, and is certainly not a sprint.

Experience tells me that time will be needed – even if via pausing to think and reflect.  Regular readers of these updates will know that I am using a piece of software to identify the emerging themes from the accounts I have been sent.  This process, even with a speedy new computer, takes time and requires a careful and considered approach.  In taking this care, I also aim to do justice to those who have taken the time and trouble to share their stories with me.  As I know from my own experiences of the PIP process, shared via this blog, telling your story isn’t always easy.  I hope though that it will make a difference.  I know that every story recieved helps to add to the power of what is being put together here.  That is also why I am asking for more stories to be shared and will continue to do so.  Discussions also continue behind the scenes to ensure that word is spread as far and wide as we can get it, and I remain very grateful and humbled for the support and encouragement received to date.

It will take time to run our marathon course, but I am determined to go the distance, and achieve the positive changes that are needed to this process.

You can share your PIP story (including anonymously) here.  Every story counts.

2 PIP stories – The power of being heard

I’m back at my desk to share the latest on the PIP stories front.  I want to share with you some of the behind the scenes mechanics and a bit of an update.

Broadly speaking, there are two areas of focus at the moment.  The first is to continue with the analysis of the accounts that have been received so far and the second is to continue to raise awareness about what is being done and why to continue to grow the number of accounts received.  The current number is a little over 500, so to reach the 600 mark is the next goal.

This is a great number, but it is important not to stop there.  With each account of the PIP process that comes in, the depth of the sample grows and with it the robustness of any emergent themes from the sample.  Each PIP story really matters.

Behind the scenes

So Chris, what happens when you recieve a PIP story?  The first thing that I do is to read it as soon as I can.  The reason for this is that in a small number of instances people report feeling low in their accounts, so there is a process in place for this to help ensure that people are kept safe.

After an initial read through, the stories are electronically filed and then copied in to Word on an anonymised basis.  A separate file with a numbering system to link back to the individual accounts is used if individuals need to be contacted in future.  Everyone who has sent in a PIP story is sent an information sheet.

From there, the stories are copied into a piece of software that helps me ‘code’ the information.  This process of coding is basically about grouping key themes or ideas that are evident in the stories that are received.  Each story is carefully read and re read to make sure that this is done accurately and consistently.  This is work that needs to be completed with attention to detail and takes time to complete.  It also takes computer power – so much so that I have bought a new one to help me with this so that this work can be completed efficiently and not waiting around for the computer to keep up.

Writing about the themes that are emerging from the coding is also an important part of the process.  Because I am at a relatively early stage in the coding process, it is too soon to be able to share some of the key themes, but that will happen as progress is made.

The power of being heard

In a few instances people have (very kindly) got in touch to see how they could help, and I’ve reached out to some of the people who have written in.  One of the things that has struck me about this process is its human element.  I think from the feedback I have had, that I am listening to a process that we have all been through in one form or another is one of the things that has resonated with people.

In many cases, people have just valued being heard, and have felt empowered by the ability to tell their story, in a process that they have felt has otherwise been ‘done to’ them, stripping them of the power and agency that they strive for in other parts of their lives.

My key messages on this would be two fold:

1. I hear you.  I am doing this to help make sure voices are heard – and I will strive to make changes as a result.  I can’t promise I will, and it won’t happen overnight – but it won’t be for want of trying!
2. The PIP process does not define you and who you are. It is important to hold on to that.  At times, I felt unrecognisable as a result of the process.  Hold on to who you are in the widest possible sense

I have not set a deadline on the collection of accounts on the PIP process as I have previously explained.  I will be here to listen as long as you want to share your stories.  There is, of course, no pressure to do so, and your own wellbeing comes first, but if you feel able to do so, I’ll be glad to have it.

Keeping myself safe

As you may imagine, reading accounts of the PIP process can have an impact.  For me, I used this in a positive way, as each account I receive reminds me of why this work is needed, and why change matters.

I have also put measures in place to make sure I can keep my own wellbeing in place.  This is something I which I think isn’t talked about often enough, but it matters too.  To help me to keep doing this work, I have put in place a debriefing arrangement with a trained professional.

Thanks for all your continued support.  Remember you can give your PIP story here: PIP stories.

4 PIP stories – initial reflections

As I sit here at my desk, I write this blog to reflect on the first couple of weeks of collecting PIP stories, in order to give some wider context to what is being done and why.

The background to the call for PIP stories

I started the call for stories in response to a message I received, telling me about an assessment where someone was asked to simulate what they would need to do to wipe their bottom.  I found this shocking, the antithesis to what an assessment process where people should be treated with decency and respect.  This example caused me to wonder whether there were other stories out there to be told.

From my own experiences of the PIP assessment process, I knew that each stage of the claim could pose its stresses.  I was also keen to be able to identify constructive solutions to identify where improvements could be made to the process and highlight good practice.  This remains the case.

This, for me, is also not a political issue. It is much bigger than that. Consensus is required across the board.  There are fundamental basics that need to be in place in order to ensure that everyone can get treated in a way that retains their dignity, and allows them to be heard in a way that is accessible.

The initial response

I have been humbled and amazed by the response to the call for stories.  The opportunity for people to give their stories has clearly resonated with many.  What is clear is that the PIP process is a very live issue for people, and that the PIP experience is one which stays with them.

There was a lot of thought that went into the methodology.  It was really important to me that people had the time and space to tell their stories in their own way.  I also deliberately allowed people to tell their stories anonymously as I know that this can allow people the distance that they need to give their account.  I have also set out to be accessible in my approach, offering support for individuals to reach out if they need to give their story in an alternative way.  It is essential that an effort like this one is inclusive and allows the full range of voices to be captured.

I also recognise that not everyone is able to tell their story, or needs time to do so.  This is something I entirely respect and relate to.  It is for this reason that there is no ‘closing date’ by which people may feel compelled to tell their story before losing the opportunity to do so.

Further, I understand the questions that people may have about me, and why I am doing this.  I have adopted an open approach, and will continue to do so.  Behind the scenes, I have had many conversations across the broad church that is the disability space in an effort to achieve consensus.

What next?

The PIP stories page will remain open and we will keep sharing it.  If you feel able to do so, all accounts of the PIP process are welcomed.  I’ll also be writing to the people who have responded to date.  Unfortunately I can’t give advice on individual cases, but I can signpost to those who may be able to do so.

Beyond that, I have started to analyse the data so that themes that are emerging from it can be identified.  Raising continued awareness of peoples experiences is an important part of this process, especially as it is still a live issue for so many.

Lastly, I want to thank you for sharing your stories, and for the interest, support and encouragement offered by numerous people, which is hugely appreciated.  Whilst this isn’t an easy thing to do, I hope it will be a worthwhile effort to call for positive change.

If you wish to, you can give your account of the PIP process here.