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.


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.

 

Introducing The Coalition of Chaos

In this blog, I will be thinking out loud, sharing initial ideas of an idea that has been developed for a new group called ‘The Coalition of Chaos’ and how this will operate.  These ideas are very much a ‘starter for 10’, on which I welcome feedback and critique.  I have no idea this will lead (and indeed, there is the possibility it may not go anywhere!) but I do feel from the initial response to some ‘soft’ consultation that we’re onto something.

Origins of the Coalition

As someone who has been in and around the Third Sector for a while now, I think it is a reasonable assessment (some would say understatement!) to suggest that we are living through challenging times.  I am of the view that challenging times require innovative and creative solutions where we can all benefit from working together and sharing knowledge, drawing best practice from a range of areas.  This was where the Coalition of Chaos originated.

I am a great believer in ‘safe space’ where people can get together and say what they think without fear of recriminations.  As I was having a catch up with the brilliant Paul Richards of Stay up Late, these thoughts led to the suggestion that a new group be formed – cheekily called ‘The Coalition of Chaos.’  The intent would be to draw together a range of progressive thinkers from across the third sector, who could come together and freely exchange ideas to address our common problems.

Through sharing these solutions, we would be both collectively and individually placed to make a difference in the third sector and have a greater toolbox at our disposal to overcome the issues we face.  In formulating these thoughts, I am aware that there are already a plethora of groups and forums that already exist.  What is distinctive about this group, I would argue is the freedom and safety it allows – this would be a group that wouldn’t be afraid to be radical in its approach and be a bit left field.

Practicalities and next steps

Thinking the practicalities through, the group would offer a mix of face to face and virtual options, with the finer logistics to be determined by consensus in due course.  Though the emphasis in this group is on dialogue, I would envisage that some outputs in the form of presentations or papers could be used to help give a basis for further reflection and development.

In terms of next steps, if you would like to talk some more about this idea and maybe even get involved, please get in touch and we can have a chat via email, phone or Skype.  The only ‘qualification’ you need is an interest in the third sector and the desire to work together to improve practice.  From here, we will collate a distribution list and develop things from there, hopefully working towards a first meeting to kick things off.

Wheelchair Latest: The most unhelpful response ever?

Dear Reader,

We’re still struggling to make headway with Fran’s wheelchair.  It is difficult to do this due to lack of clarity on what exactly is required by way of evidence for the appeals process, and a process which itself it both fundamentally flawed and hopelessly outmoded.  The following is the full transcript of the CCG reply to my latest set of questions, designed to understand exactly what evidence is required:

Dear Dr Whitaker and Mrs Whitaker,

I am authorised to send you this response to your three specific questions on behalf of Mr Rob Murphy, Associate Director, Planned Care.

1.         In terms of Fran’s condition, I am unclear what is meant by the ‘normal population of patients with the same medical condition.’ As I explained, Patient’s impairment, Cerebral Palsy, covers a wide range of circumstances with the impact of the impairment manifesting itself in different ways.  It would be helpful to understand the specific criteria used to constitute the term ‘normal’ in this case so that we can gather evidence in this regard to enable the panel to consider this.  I appreciate that you yourself are not a clinician so would welcome advice from a clinician who sits on the panel in respect of this.

Response:  This refers to any other patient with cerebral palsy with similar physical disabilities.

What does this response actually mean?  How on earth are we supposed to get evidence comparing Fran to a hypothetical person that doesn’t exist…or is that the point?  This is response is really concerning as it a) shows no evidence of an understanding of cerebral palsy and b) provides no further clarification.

2. I am also unclear in terms of the panel not discriminating on age.  How is this consistent with the need to demonstrate the need to demonstrate clinical circumstances which are ‘at a similar stage of progression as the patient’ when, in the case of Cerebral Palsy, this would be causally linked to Fran’s age?

Response: This is taken out of context from the policy which states: The Commissioning Authority does not discriminate on grounds of sex, age, sexual orientation, ethnicity, educational level, employment, marital status or religion.

 If the stage of progression is causally linked to the Patient age, this would be the case in any similar patient.

So now we have to find someone who is effectively a twin of Fran for the purposes of comparison.  Where does this person exist?  If you know, please tell me.

3.         Lastly, you state that the Commissioning authority does not ‘generally make treatment for patient under its policies dependent on the patient’s personal or social circumstances.’  Please could you state what personal or social circumstances would constitute exceptional ones in this context?

Response: The Panel could not advise on what personal or social circumstances might be exceptional until presented with something felt to be in this category by the applicant.   It is up to the applicant to demonstrate exceptionality not for the Panel to presuppose what that could be.

We already have presented this evidence, which has been dismissed, on the basis that it was not considered ‘exceptional’ with no further reasoning for this given.  Again, there is no clarification here, meaning the panel is effectively hiding behind its discretion to take decisions based on a flawed understanding of Fran’s particular impairment.

To add to my concerns, I have researched the background of Mr Murphy, and he has a masters degree in Pharmacy.  Quite what basis this qualification provides to make decisions on  the case of someone with cerebral palsy, I know not.

I hope this is helpful.

Do you find this helpful dear reader?  We will follow the process, but I now have no confidence whatsoever in it.  It is clear that the people making decisions lack the understanding required to meaningfully assess Fran’s case.  Still, we persist, in the hope that, eventually, common sense will prevail.  The odds of this, however, seem increasingly remote.

The effects of having to negotiate a process such as this should also not go without a mention.  This process has, and continues to impact both Fran and I adversely in a number of ways.  We will not give up though.  It is clear that systemic changes are needed, and I am determined to continue to shed light on a process which is not fit for purpose and fails to meaningfully understand the people it is there to serve.

Appeal rejected: Our wheelchair woes continue

Today we found out that our appeal for Fran’s e-motion wheels has been rejected.  This despite a letter from Fran’s GP, OT and the Wheelchair Service themselves.  The reason for this is that the criteria for ‘exceptionality’ has not been met.  I won’t rehearse that exceptionality criteria here, but suffice to say that all the clinically qualified professionals who had written in support of Fran’s case were confident it did.

What this means is that a second appeal is needed.  What is going to make the difference? More evidence, perhaps.  Evidence of a clinical nature from professionals, yes?  Well yes, except the appeals manager informed me that a personal letter from ‘the patient’ (i.e. a person) could sometimes make the difference.  Sometimes it did, sometimes it didn’t. I suspect that the basis for the operation of the appeals panel is being made up as it goes along, dear reader.

Could I see the reasoning behind the denied appeal? No.  Could Fran actually meet the panel to explain the difference it would make? No.  In essence then, an inconsistent process that has no real hard and fast rules and which is shrouded in mystery.  The next step? Another appeal. The next step after that? Another appeal.  Both appeals heard by the same panel.

What does all of this mean?  Further delay, anxiety and yet more money being spent.  I’d suggest that if the wheels had been given to Fran at the outset money would have been saved, with the best clinical outcome already achieved in the judgement of the professionals who actually know Fran and have met her.  In the mean time, Fran has to continue to have a wheelchair that is unsafe and causing discomfort (we discovered pressure sores over the weekend.)

I’m literally at my wits end with this.  Should I crowd fund?  I am very tempted, and we’d probably get the wheels much quicker that making subsequent appeal(s).  But what about the next time wheels are needed?  Just as with dear Theresa May, we don’t have a magic money tree!  This is to say nothing of the embarrassment resort to crowdfunding would cause to two people who are attempting to cling on to pride and dignity, despite the effects of a totally demoralising and dehumanising process.

Appeal we will.  Get it changed we will.  I just hope the human cost of this is worth it, and that in highlighting the issues we’ve faced, change will happen too.  It needs to.  The system is broken and belongs on the same place as Fran’s wheelchair, the scrapheap!  In the mean time, there is always the power chair, and the house adaptions, and car change on offer.  Cost of this  £40 000.  Impact: Loss of independence.  Shelf Life: 2 years.  Cost of e-motion wheels: £5000. Impact: Independence preserved, health benefits through activity. Shelf life: 5 years.

I’ll leave you to decide which is the best option dear reader.  I only hope I don’t have to carry out my threat of protest, using e-motion wheels to cover my modesty.  Time will tell.  Am I serious? You bet I am.  Something has to give…

We need to talk

Every so often, I read something that stops me in my tracks and makes me sit up, providing a sobering reminder of the daily challenges that face disabled people like me. The latest one of these moments was research from Sense which revealed that loneliness was highly reported by disabled people.

Perhaps even more shocking to me was the finding that over half of those surveyed thought they had nothing in common with disabled people. As someone whose hobbies include football, travel, music and eating chocolate (!) I scratched my head and wondered how on earth it was possible to have nothing in common with half of the people I encountered in my daily life. If this is true, what a damning reflection on us all.

We need to relearn how to be with each other. One of the best take aways from my counselling training this year is the Adlerian concept of social interest. Essentially this says that it is everyone’s responsibility to find ways which can help us gel together. Surely that shouldn’t be so hard? I was also really struck by the fact that between a third and a fifth of people surveyed essentially didn’t know how to talk to disabled people.

In my experience, the latter is quite simple: Essentially like anyone else. For me personally, though it will vary from person to person, I always also say that I’d rather people ‘ask and no, than not and wonder’ about my impairment. The rest is down to a bit of tact and common sense – treat me with the same respect you’d extend to other people and all will be fine. There really is nothing to be scared of.

I also think we need to rethink our approach to difference. Difference needs to be celebrated, rather than perceived as something which is awkward, threatening, or to be ‘othered’ in some way. Through appreciating the differences we all have at some level or another, we get to experience the richness that is living in a diverse society.

To close this blog, let me pose a challenge to you, dear reader. Try and engage with someone you don’t know. It might be as simple as smiling or saying hello, and its a start. Together we can tackle the issue of loneliness and change the world we live in, one conversation at a time.

General Election 2017: Feeling Apprehensive

So I’ve seen the Bedroom Tax, PIP and a raft of other measures to make life harder for disabled people.  What impact has the General Election debate had, and where is this disabled voter left feeling as a result?  One word sums it up: Nervous.

Should the Tories be re-elected, further welfare cuts seem likely, and Jeremy Hunt seems to be making increasingly concerning noises about how long money can kept being put into the NHS and that’s only *if* the economy is strong enough to take it.  Having seen the impact of healthcare privatization in the US, that really scares me.  I fear being one of a class of people who faces an impossible choice between sky high premiums or poor coverage, and quite possibly ending up with both.

I feel quite frankly battered by cuts which seem to have impacted on my life in a number of ways and the thought of more of the same also really worries me.  Add to this the lack of attention given to disability issues in the coverage I’ve seen to date and i’m left feeling sidelined by the debate thus far. Where has been the attempt to speak to the ‘purple vote’? What reassurance have I been given that things will improve?

Debate around public services, especially the NHS, matter so much when you know that you will be regularly using services and the way they are run will have an impact on your daily life.  Social Care too is massive.  From an early age I have known that the shape of social care will have a direct effect on my life and I want to try and plan my life so that I can live it to the fullest.  Depending on the nature of the proposals, this could well effect the home you live in and the sort of life you can lead.  It can be very easy to feel marginalised as a result when these issues are not aired – because I know the impact will be felt.

There is perhaps better news.  This analysis by Disability Rights UK indicates that the party manifestos contain a range of proposals that are disability specific, some of which are more encouraging than others.  Though this isn’t an endorsement, it is also good to see the Labour Party support for the Social model of disability at a time when we seem to have regressed to a medical model of thinking which has become increasingly entrenched in some circles.

It is also becoming easier to engage with politics.  United Response have also continued their excellent ‘Easy News’ for the 2017 election, producing a highly accessible account of the election manifestos.  Debate has also been lively on Twitter.

My sense of unease is still there though.  In the closing days of the campaign it would be good to see greater prominence given to disability issues so that the ink that is clearly devoted to the manifesto pages can be bought to life.  At a crucial election, it is vital that we all get the chance to have an informed debate about the kind of society we want to be a part of, so we can all live life in an inclusive way with one another.

1 ‘Where is your carer?’ Service provision with disabled people

Reflecting on recent experiences, the following blog makes some suggestions about how to work effectively with disabled people.  I say with deliberately, as above all in order to be effective, any service provided for disabled people must be provided in collaboration with them.  In this day and age, it is not acceptable for disabled people to be ‘done to’ as merely passive recipients of a service over which they have no say, choice or control.  This blog is intended to help service providers in all manner of social care settings and beyond.

In this blog, I’ve focussed more on the principles of service provision rather than specific nuts and bolts, but will happily expand if asked to do so.  Feel free to get in touch if you have a particular question.

What not to do

  • Make Assumptions – the first and probably most fundamental thing that is needed is to engage with someone without having made your mind up first.  In a spectacular example, a hospital consultant was shocked to find Fran attending a medical appointment on her own and asked where her carer was!  As someone with a first class degree (which is better than mine, as she often reminds me!) she was both shocked and offended.  Don’t assume.  Get to know the person.

 

  • Have values and then don’t live up to them – The values of the organisation you are engaging with are key.  They set expectations and should establish the tone.  When I looked up the values for the wheelchair service we are dealing with they were listed as “care, innovation and compassion with fun.”  I did a double take and wondered if this was ironic – as the experience to date has been the precise opposite in every sense.  What is the point of having values when you don’t live up to them?  At best it is unhelpful, at worst it looks cynical and destroys trust.

 

  • Be inaccessible – This one works on lots of different levels including a) Physically – If I can’t get into your service then I won’t be able to use it b) Practically – life is busy so when providing a service for busy people doing things like giving all day appointment windows is not helpful in the least c) in terms of quality assurance – so many services have complaints procedures that are difficult to engage with and providers miss out on valuable feedback as a result.

 

What to do

  • Listen – Listen to what your customers tell you.  If you do that and work with them, this will go a long way to ensuring that a service is provided that a) meets the needs of the needs of the customer and b) leaves them satisfied with the result so chances are that c) they will have faith in what you do and how you do it. In so many instances, this basic act of listening doesn’t happen and I find this mystifying, especially when people wonder why the outcome or service provided hasn’t met the mark.

 

  • Learn – Be prepared to learn with your customers and do things differently.  This may entail doing things a bit differently on both parts and learning as you both go – but through the act of working together and learning from each other, both provider and customer will be better off as a result.  Most importantly is learning where things have gone wrong and how to make them better.  Generally, unless we’re talking utter gross negligence, its ok to make mistakes in order that things are done better next time.

 

  • Have flexibility – I love a good process and set of rules as much as the next person, but sometimes those rules need to be adopted for good reason.  A recent example is Fran’s wheelchair, where the cost of adapting the house and the time spent with professionals to date as a result has cost more than what was being asked for (with good reason) with little progress made.  With flexibility (and dare I say it, common sense!) there can often be better outcomes achieved in a more efficient way.

 

With a bit of thought, providing a good service for disabled people is totally doable and there are loads of examples of good practice out there.  An example of this is The Crucible Theatre in Sheffield.  Fran and I have been there on two occasions for the Snooker World Championships.  Here the staff are engaging, polite and well trained.  They talk with you and are helpful, without being patronising or intrusive.  The facilities are good and designed with thought for the needs of disabled customers.  As a result, we’re eagerly anticipating our third visit already.

The moral of the story? Provide a good service with care and thought and everybody wins.

 

2 The War Behind the Door

Hello.  It has been a while since I last wrote.  Apologies for my apparent neglect dear reader.  Life has taken over in lots of ways, thankfully a lot of them positive.

This morning I was lucky enough to be asked to appear on BBC Radio Cambridgeshire to talk about a piece of research by Scope which highlighted discrimination that disabled people face at football grounds.  This is something which I can relate to having unfortunately had previous experience of this, which thankfully, for me at least is very rare.  I was asked about the impact of such discrimination and this made me think about experiences that both Fran and I have had of late.

Fran’s on going battle to get a suitable wheelchair made me think that sometimes just getting out of the door is an achievement.  This is especially the case given widely cited figures that 900 people are losing their Motability cars each week thanks to government welfare reforms.  Add in to the mix the state of social care and that people can often not receive the care they need to have even the most basic levels of dignity day to day and you begin to understand that, whilst a home may be a castle, it may also actually be a prison.

The experience of negotiating with several healthcare professionals to try and make them understand the fundamental importance of having a suitable wheelchair for Fran has been a real eye opener.  It requires a crates worth of stubbornness just to be heard sometimes, let alone to make any progress.  I wonder how many people who lack the means or allies to have a voice are left.

Life happens too.  This week I’ve had a virus which, unusually, kept me away from work sick on Monday. The less than helpful response of my body was to make walking, no mean feat at the best of times, a virtual impossibility.  I hate days like Monday.  Sometimes your body just says no, and sometimes, just sometimes, I have to reluctantly admit defeat for the day.

My point?  That every day there are often silent battles going on for people just to keep their heads above water and get out of the door.  We need to find ways of making that everyday contest easier.  Each time I leave my house, I take a deep breath and vow to live the day to the fullest.  If you ever wonder why you don’t see people day in day out, it might just be because of their own war behind the door.

Thanks to Scope for setting in motion a train of thought.  I hope we can focus on solutions to make society a more accessible and welcoming place for everyone.

2 Getting a wheelchair that is fit for purpose: Mission impossible?

Fran’s wheelchair is quite literally the centre of her world.  Without it she would be unable to get out of bed, go to the toilet, leave the house and do her job…it is her passport to the world.  Because it is used every day, from time to time, it needs replacing.  To do this, we have to go through an assessment process.  It is this process that will be the subject of that blog.

To say that the process of assessment is both flawed and not fit for purpose would be a monumental understatement based on our experience.  Unfortunately, it strikes me as a process that is designed about disabled people rather than for and with them.  Therein lies the source of so many problems.  You wouldn’t design any other business or process without understanding the needs of the people who are going to use it, so i’m scratching my head as to why that is so different here.  It would be like designing a car without a steering wheel.  It might look very nice, but there is no way it is going to work.

So this process began when we made a phonecall, explaining that after years of hard work, Fran’s wheelchair was beyond the end of its useful life (a fact illustrated by the wheels being so bare that the brakes don’t even work, meaning Fran had a fall this weekend) and she needed a reassessment.  For reasons unknown, Fran’s GP, who doesn’t even know Fran, was asked to complete a form and did so on the basis of a short phonecall.

Fast forward a few weeks (!) and we get a knock on the door.  A chair had arrived that was totally unsuitable for Fran and her needs.  I couldn’t believe it, Fran had been given a wheelchair without anyone from the wheelchair service actually seeing Fran.  It was an approach that Henry Ford would have been proud of: You can have any wheelchair you want as long as its the one we give you.  Try doing that with your next car and see what happens when you ask someone to pick it for you.

Fran returned the unsuitable wheelchair, not wanting to waste resources on something that she couldn’t use.  A few more weeks roll by and I hear nothing.  I telephone the service and am informed that the case has been closed.  That was it.  No notification. Just closed.  So I explain why, saying that by this point the unsuitable wheelchair is causing Fran continuous pain and discomfort and that, perhaps, just perhaps, someone actually needs to take the radical step of *talking* with Fran and assessing her needs.

Fast forward another 3 weeks (the wheelchair is literally falling apart now) and someone actually comes to see Fran and talk with her.  Because of her busy working life, Fran needs a robust wheelchair which will last longer and be better value for money as a result.  She also needs her ‘e-motion’ wheels.  These wheels have revolutionised Fran’s life.  During Fran’s sporting career she sustained a shoulder injury which has worsened over time.  The wheels have motors in them which means that Fran can get around independently.

Fran is told that she is unlikely to get these wheels but explains why they are needed, as without them, the wheelchair is effectively useless.  She doesn’t have the strength or stamina to push herself around without the wheels.  A report is written, and then goes to a ‘clinical decision meeting’ without any further input from Fran.  She doesn’t even see the final report.  She just waits and hopes that common sense prevails.

I get a call today.  The wheelchair has been approved, but not the wheels.  Why, I ask?  Oh this was a ‘clinical decision’ and is ‘policy.’ The letter I asked for a copy of says that the policy is that ‘e-motion assisted hand rims systems are not funded’ because the service eligibility states so.  When I ask what the reason for this was, I am told it is because the policy says so.  No further reasoning is given.  I will have to try and submit a freedom of information request to shed further light on the meeting minutes.

Here’s the rub: had the policy actually been written with a) any common sense element of discretion for exceptional cases such as this or b) any understanding of the needs of wheelchair uses and Fran in particular in this instance, then it wouldn’t be formulated in such a way.  So what is the alternative?

Here is where the picture gets really bizarre. As Fran can’t have her e-motion wheels, she will have to have..an electric chair.  The thing about an electric chair in this instance is that:

  • It gives Fran less independence
  • It will cost more than the e-motion wheels!!!
  • It won’t fit in our house
  • Fran’s car (which is specially adapted for her current chair) will need to be changed

 

What all of this means is that we are working towards an outcome that is poor, and costs more!!  Why then, can’t we compromise and have common sense prevail with the e-motion wheels. The policy says that this is the way things have to be.

Here’s another thing.  I am lucky, because, plainly put, I can argue the toss.  I am fortunate in that I have the ability to articulate when things aren’t right and try to make them better.  Part of the reason I do this is that I know that this isn’t the case for everyone.

I am also fortunate in that I have contacts, and have engaged several people locally who will help us to ensure that common sense prevails here.  I will also be complaining about the process, which isn’t fit for purpose and denies people access to the equipment that is the passport to their worlds.

Fran needs her wheels so she can get out of the house, to work and contribute to society.  To do her bit.  She just needs a bit of help, a bit of common sense, and above all, people to listen to her a bit more in the first place.  Let’s hope a bit more of that happens from here.

Ps – For professionals

If you are reading this..it is a good example of how not to run a service.  It is delivered in a way that is a prime example of the medical model..with no shred of mitigation in the form of any social model driven thinking.  It delivers poor outcomes in an expensive way (it has an appalling reputation locally), is not responsive to feedback or input and does not involve the service user in any way.  If you are designing or commissioning a service, it represents a text book example of what to avoid.