Patient – centred care?

I’m about to not-turn-up for a hospital appointment, and I’m probably not going to let them know. I don’t make a practice of this – I always give notice if I can’t make an appointment but this is different. 
I’ve been waiting for a cardiac stress test and as a full time wheelchair user I’m not going to be getting on a treadmill but rather am meant to have a nuclear stress test (sounds scary, eh?). Last Friday morning someone rang me (number withheld) to ask if I could attend a cancelled appointment on Saturday lunchtime – great! I asked her to explain the procedure and told her that as a disabled woman who uses a wheelchair and has a seriously curved spine there were certain considerations so that I could be as comfortable as possible for the test. My caller decided this was a problem and said she’d transfer me to ‘The Technician’, who asked more questions about my ability to transfer (i.e., could I?) and to lie still without moving (I’m paralysed, I said!). The Technician said she needed to speak to ‘The Consultant’ and could she call me back?
Ten minutes later The Technician rang me back and said that The Consultant felt that, because of my condition, the stress test was not appropriate and they should refer me back to the referring cardio consultant. I explained my disappointment, that I felt they had made a judgement based on a supposition, and had asked me if I could tolerate the scan when I had no prior knowledge of the procedure or the environment. The first Caller had mentioned a possibility of a prior visit, to check these things out, and I reminded The Technician of this. After humming and hawing she agreed and we made an appointment for us to ‘weigh each other up’. But I’ve decided I’m not going.
My reasons are both simple and complicated: primarily, it’s clear to me that they don’t want to test me. I’m prepared to do this, but I don’t particularly want to be injected with radioactive material and have to lie for 30 minutes on an uncomfortable and potentially painful table, with 110% chance of spasms in my back when I try to sit up. Especially I don’t want to endure such a procedure attended by staff who’d rather I wasn’t there. I feel my access needs have not only been ignored but they’ve been thrown actively back in my face.
Also, I’m annoyed at the nature of this attempted ‘dismissal’ with no attempt to outline to me what other options there are and what it might mean for me, the person whose heart is under examination. And, ironically, whenever I run through in my head how the visit might go (you’ve maybe guessed?) I get a tight, anxious feeling in my chest.
Finally, the original Call was ‘number withheld’. Why the secrecy? I may be being petty but that’s why I’m not ringing them. It’s the only aspect of this that makes me feel better.

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Easy Come, Easy Go.

You may have seen my recent blog about how, on 4th January, I flew from Manchester to Tenerife but easyJet flew my power-chair from Manchester, to Brest (NW France), to Paris, to Gatwick, and then to Tenerife where I was reunited with it thirty six hours later. Luckily it appeared undamaged.

When the loss was discovered at the airport we had to register it at the easyJet office there. We were given paperwork which included a website (which was consistently unavailable) and a phone number which was rarely answered.

Those first thirty six hours were most traumatic and impacted negatively on my husband and me. I have constantly explained to easyJet – actually to many different people and departments in easyJet – that losing your wheelchair is not akin to losing your suitcase and needing to buy a toothbrush and some spare knickers to tide you over. They seem to be struggling with this difference. 

My explanation of the absolute shock and horror of arriving in a strange country without your means of mobility, or of sitting comfortably and safely, has had no response whatsoever. Their absolute and continued failure to update me on the whereabouts of my chair in those thirty six hours, and their continued failure to engage with me or update me since has been astonishing.

Or perhaps I should say their failure to deal with me effectively has been astonishing. I have sometimes resorted to Twitter, mostly out of exasperation, and have had direct messages (DMs) from Pietro, Manuel, Iwona, Ahmed, Tulio, Liliya, Karolina, and Ruben. Only two were helpful. From their tweets I assume they only know what is outlined in the tweets – it’s only two days ago one wanted me to confirm that I had my chair back: I’ve had it for thirteen days now. Perhaps I should say that they all apologised, very nicely.

I’m developing quite an easyJet network, and today have started to ‘cc’ messages to everyone – often the same message, sent again to the latest ‘easyJet friend’. So here’s the roll-call:

1. PRM Assistance, who have been helpful but it’s not clear to me what they can actually do.

2. EasyJet Executive Support, who (to be fair) came onto the scene in the last day or two and so still have a chance to prove their effectiveness.

3. – an automated system where messages and documents can be left, so nobody has to actually speak to you

4. EasyJet baggage claims department – first contact was today, so fingers crossed,

5. the Reduced Mobility Rights Group – who have helped with contacts

6. EasyJet Head of Customer Services – no direct contact from them as yet,

7. the National Manager for Accessible Services at OCS – the firm who provide assistance at many U.K. Airports: they have asked for the receipt for wheelchair hire (which has already been submitted to easyJet) and I have explained it is so much more than that.
Despite all this ‘involvement’, or maybe because of it, I am no wiser – two weeks after the incident – as to how easyJet may respond to my call for compensation.

So what does this all mean for me? I spent thirty six hours not knowing where my wheelchair was, nor whether (or even if) I would get it back. I experienced pain and discomfort, including backache due to not having the support my spine requires: I had high levels of anxiety which impacted my heart disease: I had to source, pay for and use a substitute chair, causing poor posture and safety issues due to unfamiliarity. And I needed to try to establish what had happened to my chair and why.

Needless to say, I am not looking forward to my return flight with anything other than dread. The impact of this incident has been tremendous and the beginning and end of my holiday have been ruined. In between times I am trying to engage with easyJet for a resolution, and probably spend up to sixty minutes a day on these matters. In my compensation claim I am suggesting easyJet offer me an amount for ‘distress and inconvenience’ consistent with guidance from the Financial Ombudsman Service. In two weeks they have not yet managed to engage with me on this.

And what does this mean for easyJet? In order to try to be helpful I will lay this out as clearly as I can:

  1. EasyJet need to better understand the needs of their disabled customers; this is true in terms of booking, of assistance, of ‘handling’, and of problem solving. There is massive room for improvement, and it should be organic and continuous.
  2. EasyJet’s customer relations (CRM) processes have not been fit for purpose,
  3. Information given when reporting the loss was inadequate,
  4. Communication with the customer after leaving the airport was sporadic and unhelpful,
  5. Information – and therefore reassurance – about the whereabouts of the chair in the thirty six hours was not given.
  6. It was clear that the various contacts we made in easyJet did not communicate with each other,
  7. Responses to this particular incident have been inadequate and have not taken account of the very clear messages given to easyJet.
  8. A named, key contact from the start of the process would have made a difference, as would a ‘red flag’ in the CRM system for situations which require more than the standard treatment. In fairness, this was unusual and unfortunate, but that’s why the red flag is needed.

In summary, this has been an unhappy and unsettling business, made ten times worse by a poor response. My fingers are crossed for appropriate compensation and changes to systems that mean when such unfortunate events happen they are dealt with in a much better way.

Posted in Airlines, disability, flying, handicap, wheelchair | Tagged , | Leave a comment


Is it a bird? Is it a plane? No, it’s my wheelchair!

Resilience? Don’t make me laugh! So our flight was diverted to Brest for a medical emergency, fair do’s. But that added two hours onto a five hour ‘cross your legs’ situation, and me newly prescribed with diuretics. 🚽Then when we arrive at Tenerife my wheelchair cannot be found, nada as they say. So I am lugged into an airport wheelchair, feeling like a sack of potatoes by now, demanding to be taken to the ‘servicios’ (toilets) which of course are occupied by a mum with her baby and toddler, despite the fact that there is a baby-changing room next door.

Finally relieved – in one sense – we trundle off to the easyJet office to fill in the required forms and receive in return three bog-standard letters and precious little else. All this time I am perched precariously and uncomfortably in an airport wheelchair which has ‘sin barreras’ painted on the side. Then they try to take it off me, wanting to lift me into an even more unsuitable chair belonging to the transfer company (who, to be fair, have stayed with us throughout). My ‘no’ was pretty definite I thought.

And then ‘wait’ was the name of the game. For 24 hours. 

No contact from easyJet, from the airport, from anyone in fact.

Finally, at about 2 o’clock this afternoon I get a call saying my chair is being despatched from Gatwick (!) and will land at Tenerife at 18.10 and then be despatched to my hotel – where, incidentally, I am stuck on the seventh floor because the lift has broken! Oh, and it’s raining ☔️

How to convey to non-wheelchair users the impact of such experiences? Having followed all correct procedures and ticked all relevant boxes, I am nevertheless rendered immobile, in pain and discomfort, and unable to begin my holiday. And of course the knock-on impact on Tony is huge! All that is consistent is uncertainty, discomfort, and an inability to function to the limits of my capacity.

Resilience? Now where did I put it?

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Choice and Control update

It appears there’s a technical hitch: apologies, normal service will be resumed as soon as possible . . . .

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The Privilege Paradox #2

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Choice and Control Survey

Tell us about your experiences of choice and control over care and support 

The Independent Living Strategy Group is made up disabled people and allies from a range of organisations. It is convened by Baroness Jane Campbell. The Group is conducting a survey to find out about people’s experiences of choice and control over their care and support. We want to find out about your experiences in order to share them with the government and the public in the hope that it will help bring about improvements. We carried out a similar survey last year, and the report of that can be read here’s-right-to-choice-and-control-under-the-care-act-2014.aspx 

You, or a person acting with your permission on your behalf, can answer the questions here  

If you have any questions or comments about the survey, please contact John Waters,

Thank you for contributing to this important research.

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The Privilege Paradox

Much has been written in recent years about the ‘scroungers and skivers’ rhetoric, with good cause. The relentless negative portrayal of disabled people by both the government and the general media has, arguably, resulted in worsening perceptions of disabled people and a rise in hate crimes. Something else, however, is going on. 

Come on now, you wheelchair users out there, how many times have you sat outside the accessible loo with your legs crossed only for a nonchalant shopper to emerge, loaded with high-end carrier bags, having taken their time to try on their latest purchases? Seemingly the spacious accessible loo is a desirable facility, with the general public seeing it as a kind of personal changing room or a safety net, if the regular loos are busy. Our loo is even made over to parents needing to change baby. Tricky, that one: of course nobody begrudges parents this – but do they have to use our loo? And how come that changing mat is never wheelchair height?

Then we have accessible parking bays, regularly commandeered by police, politicians, and the general public, who are ‘only going to be a minute’. Parking spots for disabled people have long been coveted by non-disabled drivers, and clearly are seen as a privilege. So although there is clearly a level of stigma attached to being a disabled person, non-disabled people see a level of advantage attached: and they want access to that, I think; a kind of inverse equality.

The latest example I’ve seen of this ‘privilege paradox’ is here in Tenerife where the (non-disabled) tourists are making the most of the increasing numbers of double ‘mobility scooters’ for hire.   

 These appear to be marketed by some canny hire operators, who charge more for three days of a double buggy than for the hire of a small car! The advantages are clear – lusty young people or families with small children whizz along on the level and accessible promenades on these machines: no petrol costs, no need to touch the roads, easy ‘parking’ by the sea, gets you from A to B quickly.

There’s a psychology here to be explored – what makes equipment or facilities ‘desirable’ and what simply compounds or illustrates the stigma? Why haven’t we seen a double power wheelchair, I wonder?

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