Category Archives for "Disability"

Should I stay (in) or should I go (out)?

I sit here feeling conflicted.  The cricket is on in the background.  I smile as I think about the many happy days and hours I have spent whiling away watching this beautiful game with my Dad, setting the world to rights in the process.

Writing this, the now customary lump in my throat forms as I think of such happy times, and then remember I haven’t seen my parents since Christmas.  An unheard of gap, which we have all felt.  It has now been 22 weeks of self isolation.  154 days.

Such a strange time.  So paradoxical too.  I can’t recall a time when I have felt so connected to people in some ways, and yet so disconnected in others.  I feel a weight and a responsibility that I have never felt in this way, to step up and to continue to raise awareness of the challenges faced by those with impairments as we experience and adapt to our ‘new normal’.

I want to do more, but I’m not quite sure how to. I know that I try to make a difference, but it never feels enough. As a ‘fixer’, who wants to offer solutions and make a difference, this is something that is very hard to stomach. Where is my cape when I need it the most?

Set against this is the chilling realisation that those of us who have survived thus far have defied the statistical odds.  Analysis such as that from The Office for National Statistics tells us that those who declare an impairment have much higher mortality odds than those who do not.

It is little wonder that simple things like taking photographs of sunsets at the end of the day, and giving thanks for making it through each one have taken on new significance. I am here, yet I am also not here.

A factor in the isolation is the climate we see around us.  I am not in a position to ‘help out’ by eating out, and find it difficult to ‘play my part’ wearing a face mask.  This less than subtle ‘othering’ of those with an impairment serves to compound issues faced around the lack of confidence to go out.  Why take a risk when I risk being confronted?

I don’t want to wear a special lanyard either, or carry a card. I stand out enough as it is. I just want to not be the subject of unfair judgement from others.

Frankly, the situation feels messy.  At other times I feel a strong desire to just leap in my car and head up North to see my family.  After what is now 22 weeks though it feels that this would be a rash move that would compromise the care we have shown so far.  

So, in the deliberations about whether I should stay or go, I think the former will continue to be the case for now.

It is in these times that we can continue to be each others strongest assets.  I can only speak for myself, and I know that these times are a struggle and will continue to be so.  They are a unique challenge that in many ways surpasses that of anything else I have done previously.  And I’ve done a couple of things.

Compassion as opposed to condemnation remains key.  One of the most important questions you can ask someone during this time, is ‘how are you?’ 

Reflections on three Months in Lockdown: Wave After Wave

As I look out, the sun is shining.  Uncharacteristically so for a Bank Holiday.  Aside from that though, it could be like any other.  Except it isn’t. This one marks the start of the 14th week of lockdown for Fran and I.  This is now our ‘new normal’.  Going outside feels unthinkable.  The little things I used to take for granted, nipping to the shops, putting fuel, in my car seem so far away and irrelevant.

Being completely honest, as I always am on this blog, it is a very bitter sweet time.  As I write this I feel guilty, as the reality is in many ways, I am in a privileged position. I am still alive, still healthy.  I have my own house, access to outside space, a hard won supermarket delivery slot.  All I really have to do is sit it out.

On the other, I find myself looking longingly at a photo of my parents back garden.  In a photo, Dad stands proudly over my parents latest project to keep themselves busy, a newly constructed garden pond.  Dad is glowing with pride.  Despite being over 70 and having a heart condition, he is in better shape than he ever has been in many years.  Photos are regularly sent, videos and FaceTime too.  I still get to see my niece growing up.  From a distance.  From a distance.  A few times I have been tempted to head there, to Cheshire, some 160 miles away.  I know I can’t though.  Not yet.  I have to stay the course.

In other positives, I have just been fortunate be able to take a holiday (Fran points out that I am legally allowed, but it still feels like a privilege) and proved to myself that I don’t need to be ‘away’ to take a holiday.  I even managed to go a couple of consecutive days without checking my work email.  As a combination of a workaholic and a control freak, I’ll take that as progress.

People often ask how we’ve got this far.  I’ll let you into a couple of secrets.  They are staples that have endured over time and I have gone back to them now and over the past few weeks overall.

Deferred Gratification

Also known as delayed gratification, this has got me through many things, especially my PhD.  At the risk of stating the obvious, it takes quite a bit of discipline to write a thesis, which in my case was way over 100 000 words.  These words need to be thought about, planned, researched, analysed, over analysed. kicked around, drafted, polished and then written up.  This is the short version of that process.  When I used to get distracted, I used to have to remind myself that the thesis wasn’t going to write itself.  I used to imagine what it would feel like to actually graduate. The reward would come later, with hard work, through grift and graft.

This sense of deferred gratification is what stops me getting on the road now.  I know I can’t.  When I do, and I finally get to see my family, to give them a long awaited hug, to sit in the garden and drink in the surroundings, to laugh together again, it will be made sweeter for the fact I have waited.  It is the longest I have ever gone without seeing my family.  The day will come though.

Wave After Wave

I’m not a huge golf fan.  That said, I find the psychology of sport fascinating and for this reason, I love the Ryder Cup.  The aspects of the team preparation are always really interesting to hear about.  The team structure and use of Captains, pairings and motivational techniques to create a team spirit in what is largely an individual game.  Over the years, the European Team have been particularly good at this.  There was one example where the Europeans were particularly meticulous in their preparation, drawing from famous figures across the world of sport.  As part of this quest to take in best practice, none other than Sir Alex Ferguson.  The slogan ‘Wave After Wave’ is used to encapsulate his famous attacking style which is designed to relentlessly subdue any opposition.  No let up, no compromise.

So I approach this time.  No let up, no compromise.  I can be a bit up and down, and I acknowledge that allowing myself to feel the ups and downs of a wave is fine.  Fundamentally though any doubt has to be dealt with, any any lingering negativity met with a positive energy to overcome it.  You have to dig deep. And if that isn’t deep enough, dig deeper.

It is this approach that we have also resolve the recent issues with Fran’s Social Work.  Thankfully, through a combined effort of my talking, Fran’s knowledge and diligence, and the use of common sense on the part of the Senior Social Worker, we have managed to have the review put on hold until we are out of lockdown.  So we haven’t solved it – just kicked the can down the road a little.  But at least it allows us to focus on facing more immediate challenges.  So when a problem arises, throw everything at it.  If that doesn’t work, throw some more things from a different angle!

It is true to say also though that the prospect of further cuts due to a Care Act Easement remains a possibility.  There isn’t the space to go into detail about that here, but basically an Easement means that under the Coronavirus Act, Local Authorities can suspend the Care Act.  What this has meant in practice for some Local Authorities is significant cuts to social care which have been acknowledged as ‘deeply troubling’.

Creativity

I’m having to make a conscious effort to put myself ‘out there’ with friends via virtual catch ups, check ins, and even the odd attendance at an online disco has been known.  I’m also watching films, trying to get out in the garden and I even read for pleasure the other week.  Wonders never cease!

Hope

I have clung on to this one too. I still have hope that in the long term, whilst acknowledging there is a long road ahead, that there will be a way ahead and we’ll get through in the mean time.  There is always hope.  One of the best bits of advice I was ever given was that if things get really bad, you can always allow others to hold on to hope for you.  Never underestimate the power of hope, as part of a wider mix of good things.

Wherever this finds you, I wish you well.  Here’s to staying the course, and staying safe.

Reduced to tears: A social work review during lockdown

I write this blog a day short of three months in self isolation.  I focus on the impact of an ongoing social work review for Fran during this time.  It is written with Fran’s permission.  To be clear at the outset, the purposes of this blog are to document the impact of such a review, carried out in the way it has been, at this particular point in time.  In summary, the nature, timing and conduct of the review has been unacceptable and inappropriate in numerous ways from the outset.

I also write it because I have the ability to do so.  Between us, Fran and I have 7 degrees. Fran has a degree in social policy and has written on personalisation.  Yet still we find these processes mindbogglingly complex, inaccessible and emotionally draining.  My worry is for those who do not have the means to articulate these experiences, and the very real risk of them being worse off as a result.

As with all I write, our experiences are just one story of hundreds of thousands of disabled people who go through processes like this every day.

Setting the scene

 It is fair to say that Fran has been engaged in an attritional relationship with social work for several years.  Her care package, which we are grateful to receive, is fundamental to how she lives her life.  She used to use her care package in a holistic and person centered way, to enable a full set of social, professional and personal needs to be met.

Then it got cut.  the first things to go were the social and professional aspects.  No longer could Fran use her Personal Assistants to do things like drive her to see friends when she was too tired, or attend work functions because performing effectively at a meeting as well as the return drive was too physically draining.

Over the years, I have watched with great sadness as Fran’s life has got smaller and smaller as a result of these cuts.

A previous review began to cut away at the personal aspects.  The PA’s do things like cook, wash and iron that Fran cannot do.  They also mean that Fran can work.  The alternative would be to not work, and be dependent on the state for support.  There is nothing wrong with this, but with support it is a matter of pride for Fran that she can work and make a contribution to society as she does so.  We have been told that we are the only couple that social workers are aware of who are both disabled, and who are both able to work.

We were able to reverse some of these cuts to the most basic aspects to Fran’s care plan after a previous review, but only after the intervention of our MP, whose timely and dedicated intervention was appreciated.

In summary, the support received has a fundamental impact on the safety, nature and quality of Fran’s life. This support has become more significant in recent times as Fran’s physical health has significantly deteriorated.

Social Work reviews

Given the above context dear reader, you’ll understand why social care reviews are the subject of angst.  Sadly, as a result of years of previous experiences, there is little trust in the social work team anymore.  What started out as a relationship with social workers which facilitated access to independence, has deteriorated into an adversarial one. The focus of reviews centres on how support can be reduced.

Despite deterioration in Frans health, she had not had a review for three years. They are supposed to take place on an annual basis.    That there is such a significant delay is a worry.

Quite why there is a need to undertake a review when it has been three years, and we are in the middle of a difficult period of self-isolation, is beyond me.

Yesterday, I woke up to find Fran in tears as a result of another insensitive request from her Social Worker. This is when I stepped in.

There have been so many ways in which the conduct of this review has been woeful that outlining them in detail would take longer than I have energy to go into now.  Some examples include:

 

  • A lack of attention to being person centered and to understanding Fran’s needs. Conducting a review when Fran cannot be physically seen is inappropriate

 

  • Setting arbitrary deadlines without understanding Fran’s current circumstances e.g. saying if there is nothing heard from Fran in 7 days it will be assumed that the care is no longer needed. This is not conducive to obtaining quality information and has been a cause of distress to Fran.

 

  • Repeated requests for information that had already been provided. There have been at least six requests for information over a period of less than 4 weeks.  At the outset to this review Fran took a day to completely rewrite her Care Plan with reference to the Care Act, which was 12 pages in length.

 

  • Asking inappropriate questions e.g. asking for the ‘rationale behind the need’ for support to maintain a habitable home

 

  • When a complaint form had been requested, supplying an inaccessible PDF form which doesn’t allow space for the complaint to be detailed

 

These are but a few of the problems which have been experienced.

 

As with previous reviews, the focus appears to be on looking at ways to reduce an already reduced care package.

 

The review is still in progress.  For me it raises so many questions. What is clear though is that it feels like the antithesis of what social work should be about.  Where is the support?  Where is the care?  Not once has Fran actually been asked how she is.

 

Is this really the best we can do?

 

We will fight on.  We will keep shining a light on these issues.  Thank you for reading.

 

Please Note: I am grateful for the solidarity and support we have received so far.  We have had kind offers of legal advice, requests for media interviews, and other generous offers of help.  I write this blog partly in response to those requests.  At the moment though, we don’t wish to take any more formal steps.

Riding the Waves: Reflections on two months of self isolation

It feels like ages since I last wrote to you dear reader.  The purpose of this blog is to outline some fragments of thought from two months of self isolation since coronavirus entered into all of our lives.

 As I write these words, I do so knowing that these events have impacted on us all in so many different ways.  I want to be clear that I do so from a position of real privilege.  I am not an NHS worker, putting my life on the line day in, day out, with what can only be seen in my view as a heroic level of dedication.  I am not a key worker.  My job is not to ensure that people are fed.

My job, at its most basic level, is to stay in.  I write this sat in the comfort of my own house, with access to the electricity supply that powers the computer I am using, and with access to heating, food, and a constant supply of clean running water.  I am so lucky.  On the days when I feel sad, or worried, this is what I come back to.

Brunch

Rewind two months ago today, and Fran and I were heading out for brunch.  It was something we had been promising to each other for a long time and not quite got around to.  The car park was busy, the restaurant buzzing.  People were sat close to one another, packed in tightly, listening to the live music that was being played in the restaurant.

It feels like I am describing another world.

Fran and I had been watching the developing news, and were aware that friends in other countries were beginning to lock down.  

Mindset

At this point, dear reader, I need to take you way back in time in order to understand the present day.  I warn you that this part of the blog may not be easy to read, so if you want to skip over it, I totally understand.

The thing is, I have always been three things: lucky, impatient, and stubborn. Oh so very stubborn.  Each of these can be seen in my arrival into the world, in January of 1983.  After a really tricky pregnancy in which I was lucky to have got as far as I did, I arrived six weeks prematurely, determined to see the world early.

“I have always been three things: lucky, impatient and stubborn. Oh so very stubborn.”

Truth is, I shouldn’t really have survived, and were it not for some brilliant medical care, I would not have been here at all.

Knowing this fact has always shaped the way I have lived my life, and thought about it too.  Knowing that just by living, you have defied the odds, few things are scary or formidable.  I am aware how precious every day is, and filled with a determination to make every day count.

Growing up, I also saw the fragility of life first hand.  I spent time in a special school before I went onto mainstream.  On so many occasions, I learned with great sadness that friends I had did not return to school and had gone, as we were told, to a better place.  As I grew up, my mum, who by sheer coincidence went on to work at the same school I had since left, visited me with that sombre look on her face and that tone of voice to deliver news.  It happened with such sad regularity that I knew what she was going to say before she spoke the words:  Someone I knew was no longer with us.

I write these words in order to set what follows into context.  Whilst I might treat coronavirus with respect, I will not let it fundamentally change who I am, nor alter the fundamentals of how I see life.  It might change the way and how I choose to live it for a while.  Who I am though, will remain unchanged. There are some things that this virus can and will not touch, nor will it define. 

Lessons in marking time

 It is funny how the various, seemingly tangential strands of your life can come to be useful in ways that you never imagined were possible.  The contemporary relevance of my PhD is one of those things.

In a previous chapter of my meandering career to date, my chosen field of study was offender rehabilitation. As part of this work, I chose to speak with people who agreed to talk to me about the serious crimes they had committed.  One of the aspects of these conversations was how they had experienced what had typically been quite long spells in confinement, including a life sentence in one instance.

Now clearly the context is very different here, but elements of this have sprung to mind of late, typically regarding how to mark spells of time which might span several years and are of a potentially unknown length.

How do you do that? Well, in the most pragmatic way, one takes things a day at a time.  Each unit of time is carefully deconstructed and reconstructed.  Fashioned in ways to make it more palatable.  

When I think back to some of what I heard during those conversations, my own marking of time feels so much more straightforward.

Making the time count, and riding the waves

Given my own mindset and the circumstances I have described, my own task is to spend the time keeping myself safe.  It is easy for me to feel powerless at times – and my way to respond to that has been to try and make the time I have count.

Another way in which I am fortunate is that I have the work, together with the structure, routine and chance to make a difference that it offers.  Whilst it isn’t the NHS front line, it still provides a way to make an impact.  Working in disability sport, I have a great job, and am stepping up to help those I work with navigate challenging waters.

I also write lists, lots of lists.  Lists of things I want to do, people to see, places to go when this is over.  

There will be lots more work to do too.  One of the things I have noted are increasingly over simplistic references to ‘the vulnerable’.  There is lots to be done here in order to ensure that those with impairments like me are not lost in this talk.  We have to keep seeing the whole person.  

“We have to keep seeing the person, not the vulnerability.”

 It is ok too to feel sad.  I have cried, felt sad, missed things.  I have also danced with Fran in the kitchen, and shared drinks with friends via virtual pubs.  I have had the privilege of speaking with and interviewing world class athletes via Twitter.  Positive creativity is a must in these circumstances.

 Faith is too.  We will get through this.  My belief in this, and in the capacity we all have to respond, individually and collectively, in the most positive ways possible when faced with challenge, remains undented.

Look at the fundraising efforts, the collective displays of solidarity, the new outlets found for expression and invention.

 There will be costs and bumpy times ahead, but we will ride this out.  Hopefully in some ways, we will be better for it too.

 

We can do this. Together.   

“We can do this. Together."

PIP Stories: What the Foucault?

The importance of theory

Let me take you back in time dear reader.  When I was doing my PhD, I had a session with my supervisors.  I had very clear ideas on what I wanted my PhD to be, and what I didn't.  I wanted my PhD to be a very practical one, that wasn't bogged down by what I thought was a lot of dense and obscure theories that didn't mean very much.

However, it turns out that far from constraining the work that I was doing at the time, looking at the work I was doing through a theoretical lense actually helped me to see what was going on in a broader sense.  In this way then, theories give us a way to view things, and a set of tools to view them in more detail.

Enter Foucault

So with some trepidation dear reader, I embraced theory, and in doing so, discovered the French professor called Michel Foucault.  He was interested in a lot of things, and though not without his critics, is widely considered to be one of the most important and influential thinkers around.

In the context of PIP, Foucault is important as one of the things he is interested in is power, how it is used, and with what consequences.

Using some of Foucault's ideas, and those who have followed him, a much wider exploratory space is opened up, which then become about bigger questions, and helps us to find better solutions.  So PIP is not seen in its own right, but as part of a broader analysis of policy and practices in relation to disabled people over time.  Consideration of how power is used also brings us to consideration of how power should and should not be used.

That is where the stories come in, and why your voices are so important.  Every story counts in this sense, and this is why I keep raising awareness about this and asking for more stories to be sent in. Each story received adds to the robustness of the work that is being undertaken, and makes any conclusions drawn from analysis more credible.

So what are you doing now?

Good question!  There is lots of reading, coupled with the things I talked about in last week's blog.  Reading Foucault is hard (his ideas are complicated, and need to be read and re read very carefully to be grasped) and a bit like a jigsaw.  

The first step in a jigsaw is gathering all the pieces together.  In the case of Foucault, his work is a bit fragmented and takes the form of translated lectures and interviews as well as texts.  There are also many others who have been inspired to follow in the footsteps of Foucault, so this subsequent work needs to be considered too.

It is early days, but having used some of this work when I did my PhD, I know that it can be really useful in this context, and critically, will help to add depth to the understanding of what is happening in and around the PIP process.

Aside from the reading, momentum is good, with over 560 stories received at the time of writing.  Each time I tweet about this work, I receive more stories from people, so it is important to keep doing so to maintain that level of awareness. More and more people are learning about this, and I'm really grateful for all the support I have had so far.  A big thank you 🙂   

I also have some important ideas from the stories I have received to date, which I'll share when the time is right. It is key that any work I do is as careful and considered, so this may take some time. I am keen to share these with you, but I also need to take time and care so these ideas are as good as they can be. 

As my mum always said, slow and steady wins the race. Here's to continued steady progress!

If you have a PIP story that you feel able to share, please click here to do so.

PIP Stories: Fire, composure and compassion

Let me introduce you to a conversation that I have had a lot of over the past few weeks.  It goes something like this:

A friend: 'So just how do you do it Chris?'

Chris: 'Do what? What have I done now...?!'

A friend: 'No, not in that way! I mean all the PIP stories stuff?'

Well.  I hope you are sitting comfortably, because now I'm about to tell you.  But first, some context!

Fire in your belly, composure in your mind, compassion in your heart

The above saying is something I always come back to with the PIP stories work, especially when the going is tough, which it sometimes is.  Make no mistake, it is my choice to take this path, but its not always an easy one to create and follow.  Thats where the fire comes in.  I just remember the stories I have received, and what they have revealed, and my resolve is restored.

Composure is needed in lots of ways, especially to make sure that fire is well used.   As I have said before, running this race is a marathon and not a sprint.  It can be easy to forget that.  As I'll shortly outline, making this work happens also involves the juggling of a lot of components, all of which need careful consideration.

Compassion.  Doesn't the world need more of this, especially of late?  My parents have been (and are) one of the biggest influences in my life.  A saying of my dad over the years has been to be 'firm minded, and tender hearted.'  Compassion is there as I think this is what the PIP process needs more of in general too.  

I'm privileged to be given the insight I am into the experiences people share with me, and one of my stand out reflections is that I think the whole process would be vastly improved if it was completed with greater levels of care and compassion.

The PIP process would be vastly improved if it was managed with greater care and compassion

The elements of the PIP stories campaign

There are five main elements of the PIP stories campaign.  which I will now outline.  Each element is equally important and inter related.

a) PR

The PR aspects to the campaign are  important to keep this work on peoples radar.  The primary goal at the moment is to keep growing the number of PIP stories, as each one helps to strengthen the robustness of the findings. Thats why I say every story counts.  Activity on Twitter and Facebook is a big part of this, along with the production of things like the FAQ and posters to help spread the word.

Recently I have also started to work with some organisations to help me spread the word too.  I've deliberately and carefully engaged with a range of people in order to make sure the reach of this work is as big as it can be and that as many voices are heard as possible.

A big part of this work is what goes on behind the scenes and I'll do a lot of talking with people to raise awareness about what is being done and why.  I've deliberately been quite transparent about this in order that people can also have a greater understanding of my reasoning, approach and future plans.  

PR also means looking at analytics to get a view of how I'm doing and writing a certain weekly blog....

b) Admin

Without keeping organised, it would be very easy to get lost with everything.  Making sure I am on top of my emails, calls, planning and to do list is key.  

c) Research

Knowledge is power, and this particularly is the case in the world of PIP.  Via the research I'm doing I want to develop a proposal for some academic work, so this means doing the reading needed to so.  Research also means looking at things like the technical guidance and the latest legal rulings on PIP.

d) Rest

I put the above in to partially remind myself to do this!  I have to keep my own batteries charged up in order to make sure that this work is sustainable.  This means making sure that I get at least some down time via breaks and time off at weekends.  Supervision is also another key part of this so that the emotional, practical and intellectual demands of these endeavours can be shared in my own safe space.

So a typical week(end) in the life of will involve the careful balancing of the above elements.  Here's to further progress as a result!

You can share your PIP story, by clicking here.  Thank you for your support with this work.

PIP Stories: Survivors guilt and unheard voices

There was a mixture of emotions. There was relief. There was reassurance that things were as I saw them and felt they should be. There was also a lot of guilt. A kind of survivors guilt. This is something I’m still experiencing. 

This was how I felt after I received my own result of the PIP assessment last year.  In this post I want to focus on the 'survivors guilt' that those who have been through the PIP process may experience.  My own sense of survivors guilt is something which I have rationalised, but remains something I can put my finger on.

Though it is still too early to talk about emergent issues with any great certainty from the PIP stories I have received to date, it is fair to say that reference to the psychological effects that the process has is a notable part of some of the account received.  

Part of any good research methodology is considering the voices that might not be represented in the accounts that you receive and to take measures to address this in order to make sure that you receive a range of perspectives.

Some people have said to me that they haven't written in to me because their process was as they expected it to be, or not as bad as they had heard it was going to be or imagined it would be.

Or because they felt a kind of survivors guilt.  My message here is simple: Every story counts.  I want everyone to be heard in this, and each account has an equal value and importance.  Equally, I understand that the PIP experience is not something that everyone is able or wants to revisit.  It is really important to keep yourself safe, and your own wellbeing comes first.  I'd rather that you didn't give your PIP story than risk compromising this.

I'll say it again as it bears repeating.  Every story counts.  I want every perspective to be heard.  I want to hear your voice.

Every story counts as part of the PIP stories work.  I want every perspective to be heard.  

So what is this coding you keep talking about?

Ah, dear reader, this is a good question!  Coding is basically how you choose to approach the process of working with the stories received.  There are entire books devoted to the subject such as The Coding Manual for Qualitative Researchers by Johnny Saldaña.  This is the kind of detail that matters.  It is a bit like going on a car journey.  Sometimes you can just set off and follow your nose.  At other times, you need a route planner.  This is a journey that needs careful planning, so I am resisting the temptation to begin the coding process without having first carefully considered my approach.

Other developments

I have now developed an FAQ to answer some questions I have been asked about this work.  I hope you find it useful, and do let me know if you have any further queries about this work specifically.  

Lots of people have been asking how they can help, which is much appreciated.  The best (and easiest!) way to help is by sharing the call for more PIP stories by clicking the Facebook and Twitter buttons below.  Thank you for your support.

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.

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