PIP stories – initial reflections

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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.


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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 4 comments

Rachael Emma Tomlinson - September 14, 2019 Reply

Thank you for giving us the opportunity to comment, I will be interested in your findings

Sarah - September 29, 2019 Reply

Thanks for listening to everyone and for being the catalyst for a change and improvement in the process. The experience for a family member of mine was needlessly humiliating. Thanks again.

Tricia - September 29, 2019 Reply

Thank you Chris for doing this. It’s heartbreaking what people are going through. I hope something positive can come out of this. I liked your words, ‘people should be treated with decency and respect.’ We seem to have lost this somewhere along the way, I hope we can get it back to have a good society. I didn’t continue with my PIP assessment as I can fight no longer. It is all too difficult. So thank you for your energy, your eloquence, your compassion, and your determination. We need someone like you.

Lynda - October 6, 2019 Reply

Thankyou for sharing this. I have had to apply for pip but im not expecting anything ! Im a nurse and some of these horror stories make me ashamed of some of my colleagues.

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