Sheffield #Access #Fail by @Northernrailorg

Being a disabled traveller

I don’t often blog about the minutae of attempting to be a working person who uses various mobility aids in order to participate in society, but the response to a number of Tweets I sent out yesterday when I found myself in a labarynthine mess stuck between policy and prejudice that I regularly encounter in the public sphere. So here’s a snapshot of what it’s like for me to attend a meeting.

Going to visit Patient Opinion in Sheffield

I had arranged to go to the @PatientOpinion offices to catch up. I’m a big PO supporter, but haven’t previously been to the office. It’s only 35 miles from my door, so how hard can it be to go there for a meeting?

Problems encountered every time I travel

Firstly, I can’t lift the pieces of my scooter into the boot of my car. this means that to all intents and purposes, it’s useless to me. I have to go everywhere in taxis and on trains. I could use some buses, but the attitude of various drivers and the physical difficulty of getting into the approved space means that this option isn’t used at the start of a long day because it’s so exhausting.

So, I use my electric scooter to get from my house to the road. I can’t get down the hill outside my house without it. I used to rely on my manual wheelchair, but this wasn’t safe to self-propel down, and impossible to self-propel up. So I had to get a (fit and strong) person to do the pushing me up and down the hill. Which meant I couldn’t go out independently, for instance to work.

So, now I have the electric scooter. I use it in an “off-label” way to get up and down a hill that is far steeper than my OT head assesses as safe to use an electric scooter on, but I have limited options. The battery is being burned out fast, but it still keeps going, helping me to participate. I’ll cross that bridge when I come to it.

First class is more comfortable for disabled people

So, I ordered train tickets for collection. I can’t comfortably travel in standard, so I often buy first class tickets if I can afford it. There is a critical few extra inches of turning circle in First that means its less painful to travel in a wheelchair or scooter. I see this as a good use of my DLA. So, instead of a £17 ticket, to Sheffield, mine is a £35 ticket (return). To be honest, I’ve had that many experiences of the system cocking up that where there is an option to be more comfortable, I’ll take the hit.

Leeds station

As I arrive at the platform to depart in Leeds, there’s clearly panic from the guy at the station, who informs me

“you can’t get on the train- you haven’t booked special assistance”.

“Don’t be so ridiculous. I don’t need any assistance except the ramp to alight the train, and I can drive unassisted up it. Please just put the ramp down and we’ll say no more about it. Please let the Sheffield staff know I’m on my way.”

(Only here I am blogging about it. Tsk).

Sheffield first #access #fail

I got to Sheffield (after a lovely Bacon Roll and cup of tea- thanks Cross Country Trains!) and unfortunately despite checking with both the guy on the platform at Leeds and with the conductor on the train, there was no-one there to provide the ramp that I need to disembark the train. Madly waving at passers-by and frankly anyone in the area, I attempted to make them aware of my plight. This is always really panicky, the sense that if one isn’t noticed, one will be soon headed off far away (in this case, to Plymouth).

The conductor on the train had come to check I had disembarked safely, and was as annoyed as I was to see I was still waiting on the train, hanging out of the carriage and waving like a woman possessed in the vain hope that someone would offer assistance. He offered to use the ramp within the train to get me off it before he was due to leave, rather than wait for the station staff. So that’s what we did. Problem solved. He did tell me he had phoned the station staff to tell them I was coing, but then so had the ridiculous man at Leeds station, and I didn’t know if either of them were being honest.

Visit to Patient Opinion

I was met by the lovely Dr James Munro of Patient Opinion at the station, and we spent a couple of hours chatting with the team. It was lovely. Sadly, it was soon time to go home. I was dropped back at the station by Dr James Munro, who wasn’t able to stay in the drop-off zone for long.

Sheffield second #access #fail

I went into the station, and went to the platform the train was leaving from. Phew, 15 minutes to spare. So, knowing how often this is the critical time to make sure arrangements are properly made I looked out for station staff and train staff. Sure enough, several staff were floating around, so I made sure that I politely informed each of the that I was expecting to travel on the next rain to Leeds, that I would need the ramp, and that here I am, sitting next to the ramp ready for someone to attach it to the train so i can alight.

Each person I spoke to insisted it wasn’t their job to attach the ramp to the train, but not to worry, because

“someone will be along in a minute”.

Now, I’ve relied on “someone” before, and let me tell you, they’re not very reliable. In fact, “anyone” could have attached the ramp to the train. It doesn’t require much training.

The train arrives, and I nervously drove the scooter in between the ramp and the train, all the time telling all the staff I could see that I needed someone to attch the ramp. Everyone was sure that “someone” would be along to do it. I felt that the time was approaching for the train to leave, and was on my phone. I could see the conductor and train staff get onto the train and close all the doors. Then, the train pulled away.

Sure enough, “someone” had failed to materialise and I had missed my train.

So, I went back to the information desk to talk to the staff about how this had happened, and what to do next. I showed them my First Class anytime return to Leeds. They were apologetic, but said that there was nothing they could do. I told them about the morning experience, too, but they said that the fault was with both Leeds station (who hadn’t phoned in) and the conductor on the train (who hadn’t phoned in). Complaint form number 1.

They advised me of the next train to Leeds, which was run by Northern Rail.

Sheffield third #access #fail

I dutifully went to the platform (this time with a member of customer service) only to find myself confronted by the train conductor.

“Sorry, I can’t carry you in the scooter. Company policy” he said.

“Really? I said, ” this sounds discriminatory? surely this isn’t your company policy?”

“No, we don’t *BAN* scooters. But we only carry folding ones.”

“Oh. I see. well, luckily my scooter breaks down into seperate pieces and fits in any car boot. So you’ll be able to take me?”

“Only if you can carry all the bits of the scooter onto the train and put them in the luggage rack yourselves”

“Really? so if I had a heavy suitcase you would offer me assistance, but you’re directly telling me you refuse to carry any bits of my scooter onto your train?”

“Yes”

So, we carried on with this pleasant conversation. I was becoming less pleased with the service from Sheffield and Northern Rail by the second. But there was no shifting this man, who was convinced that his company policy overrode any national or international law and obligation to people with mobility issues, quite apart from having a human response and just helping a traveller out.

Fuming, I went to the platform supervisors office. Having already filled out a complaint about the train that had left without me despite seeing me waiting for assistance, Ithought I would fill out another form for this experience. The supervisor was apologetic, but helpfully printed off a policy document from Northern Rail stating that they did not agree to transport scooters, unless the mobility impaired person carried them onto the train themselves. So the conductor had been correct in interpreting company policy, it was actually an official policy to directly discriminate against people with disabilities and mobility isues.

I was informed of the next train, and started to wait. I had some time to kill, so I thought I would also complain about the morning when no-one had arried to help me off the train. Having completed a hat-trick of complaints I felt it was time my luck should turn.

Sheffield fourth #access #fail

The train to Leeds arrived, thankfully a Cross Country service, and so I started up the train to board. The platform supervisor had the ramp set up into Standard. I asked him if he would mind moving the ramp as I had a First Class ticket and wanted therefore to travel in First Class.

“No, can’t do it love. There isn’t time”

“Yes there is. It will only take a minute- the train isn’t very long. I’m not paying for a First Class ticket and travelling in Standard. Would you ask a non-disabled traveller to do so?”

“You never showed me your First Class ticket. How am I supposed to know you wanted the ramp into First Class?”

*turns to customer service person* “Hang on, I showed you my ticket about an hour ago, did you not see that it was a First Class ticket?”

“Well, you cant go in first anyway. There’s already someone in the disabled spot”

“Is there? that’s unusual. Well, if thats true, well have to work something out. Let’s go and see.”

So we went down the train. the platform supervisor joined me, swearing and muttering all the way down the train in a most unfriendly manner. He obviously didn’t see the reason why I should not want to accept his kind offer of help into Standard and insist on travelling in First.

We got the ramp up, and I drove on to the train. Suprise, suprise, there wasnt anyone in the disabled spot. There was a whole family’s luggage in the disabled spot. The family memebrs startted to remove the luggage with guilty faces, avoiding eye contact with me, and placed it all in the luggage spot. I’m familiar with this from the people who guiltily come back to cars parked in disabled bays without Blue Badges. Only “popping in” to the shops and they get away with it. I dont know if they had refused to move the luggage and therefore the train operator had to offer me a standard space, or if they had simply not been asked to move the luggage despite the clear signage that the space was protected for people with disabilities by law. But, they were only “popping their luggage there” it’s not like it was going to impact on a disabled person, now is it? They were not reprimanded, or fined, or saw any consequence to their actions. No wonder the guilty faces.

So, for people wondering why you dont see so many people using wheelchairs and scooters in your local train station, in your workplace, in your church or social club, down the pub, out in town, taking their kids to ballet lessons, or cheering on their kids at football, how about reflecting on this journey and think about why that might be.

And also have a think about the planned reform of DLA and replacement with PIP. Large numbers of people who have mobility needs will not be assessed as needing any help on the basis that our country is now proudly accessible to all.

I can’t think of a better word to describe this than sick.

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#AccessibleLeeds? not if FirstBus have anything to do with it!

I was brave yesterday, and attempted my first bus journey in the electric scooter.

I started from the bus stop on Woodhouse Lane, outside the Unipol office and the Fenton pub.

First bus that pulled up (a First Bus), the driver saw me at the bus stop, chose to stop early to let his passenger alight, then slammed the bus doors in my face and drove off without a backward glance.

Second bus that stopped (a First Bus), the driver opened the doors. I asked him to put the ramp down so that I could get on the bus. He said “you must be having a laugh if you think I’m getting the ramp out for you. Besides, I’m not insured to carry you on the bus. And I can’t help you”. Despite appealing to him about the Equality Act, about the company’s committment to accessibility, and about the responsibility he had to put the ramp down for me, he chose to close the doors in my face and drive off.

The third bus that stopped, (a First Bus), the (female) driver got out of her seat and put the ramp down, without me saying anything. I couldn’t drive up it unassisted, so she got back onto the bus and lowered the bus to make the angle of the ramp less steep. I then got on the bus independantly.

So, when you are thinking of getting rid of Mobility DLA for people with mobility impairments, have a think about the attitudes we face when we try to access public transport with the rest of the population.

Go on, I dare you.

Edit: 03/06/12

I made a phone call to First Bus and complain about this incident, and in the interests of transparency, here is the reply I received, please note the bold type has been emphasised by me:

Reply from FirstBus 31/05/2012

Dear OTonWheels

I refer to your telephone call concerning the problems you experienced with our driver on Service 1 on 28 May 2012 as he did not allow you to board with your scooter.

Please note that from 01 March all scooters will need to have a permit for a class 2 scooter and class 3 scooters are not permitted on board.  Therefore it is possible that the driver may have become confused with regards to your wheelchair due to the new code of conduct.  An electric wheelchair that conforms with the standard reference wheelchair in dimensions is no different to any other wheelchair and the driver is required to offer assistance with boarding.  We try to ensure, as both a courtesy, and as our legal obligations to ensure that wheelchair users are given suitable treatment and access to our services wherever possible.  Drivers are trained to pull up close to the kerb and to utilise the on bus ramp facility for the customer to use. This is mandatory for all staff.

As such, I can confirm that the driver concerned has been traced and identified and your complaint has been recorded on the driver’s file for the attention of the depot manager.  The manager will investigate the matter further, provide any appropriate training or take any necessary action.

I can assure you that the action taken is part of First’s goal to become the transport provider of choice.

Please accept our apologies for any inconvenience caused and thank you for bringing the situation to our attention.

Yours sincerely


Customer Services Agent

Best Regards

First Customer Services
West & North Yorkshire.

Edit: 06/06/12 I have received another letter from First Bus:

Dear OTonWheels,

I have looked at the ‘blog’ you have posted and appreciate the concerns
raised and the interest they pose. Towards the foot of this, I notice that
you have identified some materials on our website (and that of our sister
company in the Midlands) which may have already answered this for you.

However, to clarify –

Because of a number of challenges over the years, mobility scooters have,
on the whole, not been permitted to travel on buses locally. Indeed, the
carriage of mobility scooters has nationally been very limited and patchy
with a level of local interpretation and variation.

With this in mind, the issue has been keenly discussed between operators,
operator bodies (such as CPT) and the DfT for some time. Positively, a
standard system is now in operation supported by all major operators such
as First, Stagecoach and Arriva as well as many smaller operators whereby
mobility scooters can be carried subject to type (type 2 are fine, type 3
are not permitted). However, to ensure that this can happen, uses need to
have an assessment on board to check dimensions and movement and a permit
would then be issued.

I suspect that the confusion here therefore is the term registration and
it’s implications. What should have been said and made clearer is that
users of type 2 mobility scooters may register with us and this can
therefore permit a ‘test’ on board to ensure compliance following which a
small, personalised permit is issued to instruct drivers that the unit is
suitable for carriage.

I hope this clears up any misunderstanding, and apologise again for the
difficulties posed in your previous account.

Best Regards

First Customer Services
West & North Yorkshire.

 

Fly BMI? #disability #spoonie

I’ve said before that it is difficult to arrange travel when you use a wheelchair. Here is an example of the difficulty when travel plans don’t work out the way we might hope- it took some searching but I found a customer service for to respond to BMI here http://www.flybmi.com/bmi/en-gb/about-us/customer-relations.aspx

Expect updates on this story when I have an email response from BMI.

Dear Sir/Madam,

I booked a return flight to Glasgow from Leeds in June 2012, receiving confirmation on 4th February 2012 (total cost £131.10).

As an independent traveller that uses a wheelchair, it was important to me to ensure that the travel arrangements for me to present at a conference were made early and were reliable.

I received notification that the return flight had been cancelled on April 19th. I followed the instructions to call the advice line. I was reassured the BMI would offer me a full refund for the cancelled flight (£65.55)

I asked what action BMI intended to take to ensue I was not stranded in Glasgow, and I asked to speak to the supervisor, as I cannot easily change my travel plans due to my disability and was very anxious not to be stranded in Glasgow . The supervisor was otherwise engaged and made no attempt to arrange to call me back or assist me in any way, in response to my call.

As a wheelchair user who has pain and fatigue from long periods in the wheelchair, and who cannot independently get from Glasgow by other means e.g. train, I am shocked that your company thought that leaving a person who is a wheelchair user and travelling independently stranded in a city with no means of returning home is acceptable behaviour. I am also disappointed that there was no response from the supervisor to my request for contact.

I emailed you with my concerns on April 16th, and have received no reply. Again, this is very poor customer service and very disappointing.

I then received another notification that the outgoing flight had also been cancelled, on April 19th.

I called the advice line again, and they have arranged (I trust) a full refund. They also advised me to email using this form to outline my situation to you.

I am now having to book flights at much higher prices, which has taken me some time and a lot of stress.

In addition, I have felt distress due to the feeling of insecurity and worry about how to get to and from Glasgow. I have worried about getting to work.

I have increased pain and fatigue caused by worry. I have been sorely disappointed by the lack of response to previous emails and from the supervisor upon contacting the advice line to discuss my concerns.

These are all cumulative reasons I feel I should be entitled to further compensation from your company.

I would suggest that IN ADDITION to the full refund offered to me of the original flight costs (£131.10) your company should seek to compensate me a further £100 in recognition of the increased costs of travel, and a token towards my distress, aggravation of pain and fatigue associated with worry, and your appalling treatment of a disabled traveller.

I look forward to your reply.

Yours Faithfully,

OTonWheels

P.S. I will be blogging this email and any future responses.

#wheelytrek- my first solo train journey in a wheelchair

I haven’t been able or confident enough to do any travelling since becoming a wheelchair user. Partly, this is due to the pain and fatigue that I get whenever I’m in a moving vehicle. It’s also because it has taken until now for me to feel confident enough that I could navigate/stay awake/be safe until I reached my destination.

Today, I travelled from Leeds to Birmingham. Once, this wouldn’t be cause for comment or celebration- I took for granted just how easily I navigated this country. Now, it feels like a major achievement.

I can’t fault the assistance that I received today from Cross Country Trains on the phone, and the train, and from the staff at Leeds and Birmingham railway station. I think my experience is an example of how it _should_ be for people with disabilities when travelling. Bravo to everyone involved. Particular thanks to my kind neighbour who has so often taken me places in his car when I have been worried about journeys. Truly, I couldn’t have done it without his help.

I plan to blog the after-effects of the journey, as I’m going to a two-day conference here and then returning on the train. It’s going to be a massive milestone for me. Wish me luck!

Here is the Grabchat of today’s attempt to Live-Tweet the journey.

Grabchat

Involved

@claireOT @gmd2

Top resources

http://twitter.com/claireOT/status/199875065137995778/photo/1
http://twitter.com/claireOT/status/199877753284210689/photo/1
http://twitter.com/claireOT/status/199855182706774016/photo/1
http://twitter.com/claireOT/status/199875048310444033/photo/1
http://twitter.com/claireOT/status/199877941717512193/photo/1
http://twitter.com/claireOT/status/199892179865440256/photo/1
http://twitter.com/claireOT/status/199932447994028032/photo/1
http://twitter.com/claireOT/status/199881549527781378/photo/1
http://twitter.com/claireOT/status/199892124873924610/photo/1

Related tags

#spoonie #wheelchair

See Twitter for more tweets, people, videos and photos for #wheelytrek

@claireOT #wheelytrek 1st problem-how do I transport as suitcase and self-propell my #wheelchair ?(Tue, 08 May 2012 10:58:54 +0100)
@claireOT Best solution for eventuality no help appears- combination of straps attach wheeled suitcase to back of chair #wheelytrek (Tue, 08 May 2012 11:10:39 +0100)
@claireOT Okay, Richard from CrossCountry trains assures me all the assistance is correctly booked, so I won’t need my strapping system #wheelytrek (Tue, 08 May 2012 11:33:59 +0100)
@claireOT *takes straps and discreetly keeps in handbag just in case* #wheelytrek (Tue, 08 May 2012 11:34:33 +0100)
@claireOT I’m hoping they will, since I’ve told them I’m going to blog the journey & share with other customers with disabilities #wheelytrek (Tue, 08 May 2012 11:36:03 +0100)
@claireOT @SabreStairlifts @Robyn_Brockie @KennerleyWendy @smclrk thanks all for kind wishes, crossed fingers etc. I set off at 2pm. #wheelytrek (Tue, 08 May 2012 11:42:46 +0100)
@claireOT @sexyswinging @sanabituranima yes, hope it all goes swimmingly, hoping it gives me the confidence to try travelling more #wheelytrek (Tue, 08 May 2012 11:44:08 +0100)
@claireOT If I can make it to Birmingham today, that means I can definitely get to see my pals at @patientopinion in Sheffield soon! #wheelytrek (Tue, 08 May 2012 11:45:23 +0100)
@claireOT Okay, T minus an hour before the #wheelytrek launch. Still to do: take tablets. Book taxi. Cashpoint.(Tue, 08 May 2012 12:49:45 +0100)
@gmd2 Good luck wishes to @claireOT with #wheelytrek (Tue, 08 May 2012 12:55:31 +0100)
@claireOT And, we’re off! Thanks to my fab neighbour for lift to cashpoint and on to station #wheelytrek http://t.co/HaGIHpDN (Tue, 08 May 2012 14:36:04 +0100)
@claireOT Now pitstop for cash. #wheelytrek (Tue, 08 May 2012 14:44:24 +0100)
@claireOT Thankfully managed to use ticket collection machine from wheelchair (only 2 failed attempts) #wheelytrek http://t.co/wGUxX9Kr (Tue, 08 May 2012 15:55:01 +0100)
@claireOT Assistance! The booking system worked! #wheelytrek http://t.co/z5osJ3lI (Tue, 08 May 2012 15:55:05 +0100)
@claireOT Fortunately they remembered the ramps and gave me a push up. Thanks train guys! #wheelytrek http://t.co/8bJRrQab (Tue, 08 May 2012 16:05:46 +0100)
@claireOT Wheelchair space already taken on train 😦 so, got an upgrade, yay! 🙂 #wheelytrek http://t.co/rXdEV8IM (Tue, 08 May 2012 16:06:31 +0100) 
@claireOT One has just been informed that one wont be able to have a meal due to being an interloper on a standard ticket. #wheelytrek (Tue, 08 May 2012 16:16:06 +0100)
@claireOT I didnt know they offered one food and drink in first class- so have settled for a cup of tea #wheelytrek (Tue, 08 May 2012 16:19:15 +0100)
@claireOT Mmmm… coffee… just the job (especially cos 1) made in cafetiere and 2)free!!) #wheelytrek http://t.co/pEnJaBcD (Tue, 08 May 2012 16:20:50 +0100)
@claireOT My new pal Rennee and i, we like it in 1st #wheelytrek http://t.co/yOILODNm (Tue, 08 May 2012 17:02:51 +0100)
@claireOT
@claireOT Oh hai Chinatown! A lovely surprise to find myself here. Feels like I’m on holiday. #spoonie @ #wheelytrek http://t.co/57urS6NC (Tue, 08 May 2012 19:43:06 +0100)
@claireOT @smclrk am a bit exhausted, but made it with style! first class upgrade! see #wheelytrek for details of the trip x(Tue, 08 May 2012 20:37:44 +0100)

#OT24x Presentation

Here’s a copy of the presentation I did as part of the 24 hour Virtual Exchange for OTs, based on this blog.

Disabled… or just lazy scroungers? In which I discuss the Home Care lady’s Disablism

I’m afraid, dear reader, that it’s *another* post about my Home Care Service. I’ve told you before about the problems with the service, but today’s little bon mot deserves it’s own post.

I was talking about my plan to go out today. Don’t worry, nothing too exciting, just a visit to the optician. I discussed how upset I’d been last time I went to the shopping centre, because  I hadn’t got the Blue Badge and we had been clamped in the disabled parking bay. I explained how my other half came to pick me up from the shopping centre, and within the twenty minutes it took to get me back in my manual wheelchair from the shopmobility electric one and back to the car, we were clamped.

I was explaining to the Home Care lady how, although I knew we didn’t have the Blue Badge, I had felt this was unfair because it was clear that it was a pick-up of a woman shopping alone in a wheelchair with a baby and a four year old child. In fact, the clamp and fee were waived once I got to the management suite of the shopping centre and explained the situation.

I explained how I was nervous about going to the optician partly because I had not been back there since this event, over a year ago. I was trying to explain how distressing the experience was, and how I had felt that day had stopped me from going back there until it was, once more, time to visit the optician. I had also felt horribly guilty about being caught out using a disabled bay without the Blue Badge.

I explained how, when adjusting to disability, it wasn’t a straightforward process of getting the “perks”. Because of my denial of how disabled I was, and how long I was likely to be disabled for, I was a long way from admitting I needed things like a Blue Badge then. To be perfectly honest, I still haven’t sent the form off. It seems like one of the tasks that confirms my new status- and I have to admit I’m still not there yet. We had a home-made sign which explained I was temporarily using a wheelchair and gave my phone number to call if it was problematic (I know- amateur hour, huh?) I don’t know what I expected her to say. What I didn’t expect was for her to say

“well, the whole scheme is rubbish. It’s so abused isn’t it? I mean, I see them at the supermarket- they’re not disabled parking up in those bays- they’re just lazy!”

I was shocked by the response of the Home Care lady, so I challenged her:

“How do you know if a person is disabled by looking at them? they may not have an external sign such as a wheelchair, but that doesn’t mean they don’t have a limiting chronic condition, does it?”

She was not going to budge. Clearly, not only was she so confident in expressing her opinion to me, a disabled person, but she actually seemed surprised I didn’t agree with her.

“You see them: they’re young, they’ve got nothing wrong with them. You can tell they’re up to no good, too because they seem really shifty. They don’t need a stick- you can tell if someone’s really disabled can’t you? But they get away with it. They’re just lazy, they don’t want to walk any distance.”

Let’s be clear: she wasn’t talking about people (like me) who felt they were entitled to use the disabled parking bay but were not displaying a Blue Badge. She was talking about people who were displaying the Blue Badge- which you get by being registered disabled. She was commenting, as so many seem prone to do, about the medical conditions of complete strangers. She was assuming that she was able to diagnose at a glance and differentiate between the “deserving” disabled and the “undeserving” disabled.

I shouldn’t be shocked, because as the Welfare Reform Bill moves through the House of Lords, and is subject to tricks to reduce scrutiny of the detail, media interest in the issues of disability “perks” once more makes it clear how much disablism is rampant in our society. Campaigners such as Sue Marsh (@Suey2y) and Kaliya Franklin (@Bendygirl) have been presenting reasoned argument about difficulties faces by people with disabilities, and opinion in the press about how this culture stems from attitudes held by those in the media and politics. The comments below such pieces betray the feelings of an increasingly unpleasant and discriminatory section of our society.

These people feel happy to judge us. They think we are lazy; and I’m worried for all our safety as this cannot be unrelated to increasing hate crimes towards people with disability.

And worse; some of them are working for our Social Care Services, coming into our homes. They are our primary practical support, and for me, my only social contact outside my immediate family most days.

I guess that’s another one of those “perks”.

Going out? maybe…or maybe not; in which I discuss problems booking out the wheelchair taxi service

Going anywhere is just getting harder and harder. I’ve been using a fantastic alternative travel service (it’s a social enterprise, so I’m praying it will continue through the Social Care mass extinction we are seeing at the  moment). The driver has been able to come to the door, manhandle the wheelchair into the street and brace it as I stagger across on my crutches and get into the chair for the short trip down the hill. Then, they have been leaving me next to the accessible transport vehicle, and going back up to the house to collect my youngest in her car seat. She is so good, most babies wouldn’t stand for it, but she happily goes along with this, gets strapped into the vehicle, then they get me in and strapped up, and away we go. On the way back, we reverse the process.

Well, not any longer. As if things weren’t difficult enough, they have changed management, and re-risk assessed all their clients. I was told that I now require two drivers for each trip. One to take care of me in the wheelchair, and one to carry the baby seat. Apparently, this now has to happen simultaneously. The difficulty is that clearly they don’t have a whole load of drivers sat around all day- they are already booked out on jobs. So it is now even harder to book out the transport that I need.

So this week I was due to go to see my Physiotherapist. I couldn’t go, because the transport company only had one driver available and I needed two.

Just another reason to get brought down by the mundane hassles and constant struggle my life has turned into.

Disabled people aren’t allowed to be parents, btw; in which I discuss Patient Transport, accessible vehicles, and the lack of child seats in ambulances.

Grrr! I’m afraid this is another problem with the infamous patient transport service..

Now, here’s the thing, I had forgotten I had physio on that day, and I was in charge of my daughter (she’s four). The guys from the ambulance arrived, and announced they’d come to get me for physio. I had been lying on the sofa waiting for the most recent painkillers to kick in- daughter was upstairs using the bathroom. I shouted upstairs to let my daughter know we were going to the hospital for an appointment for Mummy- “Come down here and get your shoes on.”

The ambulance guys looked uncomfortable.

“Are you planning on taking the girl with us?”

I replied, “Yes, she’s my daughter and I’m looking after her today.”

They told me that they wouldn’t be able to take her in the ambulance- they didn’t have a car seat.

“That’s okay, I’ve got one in my car- you can borrow it for the day- it’s in my car and you can fit it in your car seat. I don’t mind if you unload it at the hospital or if you want to keep it in the ambulance.”

“Sorry, we can’t fit your car seat into the ambulance. Health and Safety. We only use our own, but I’m afraid we don’t have any child car seats that fit in the ambulance.”

“Can you take her in a normal seat? I know that taxis can take a child a short distance without a car seat?”

“No, sorry. Health and Safety.”

“Well, I understand that, it’s safer for kids in car seats isn’t it… So what if you’re a parent with a disability? How do you get to the hospital on patient transport with a child?”

“Well, you can’t take them in the ambulance. There’s not really a patient transport thats suitable, to be honest, if you’re in a wheelchair and need an ambulance for transport.”

“Okay, so I have to get to physio, and I have to take my daughter with me. How far can you take me?”

“We can take you to the bottom of the hill…. but you can’t come in the ambulance with your daughter.”

“Okay…”

So, my daughter put her shoes on, and chose her toy to take. The ambulance guys got the wheelchair from the front room, and into the street. I crutched myself down the steps and across the yard, and into the chair. Ambulance guys wheeled me down the hill… and there we said our goodbyes!

The ambulance guys went to their ambulance, I called my local taxi firm. Then, my daughter and I waited at the side of the road. She was very good, and held my hand. I felt anxious and vulnerable to be sitting at the side of the road in a wheelchair, knowing that there was no way to self-propel home. Luckily, part of being a parent is putting on the confident face so that kids know that it’s okay…Mum knows what’s going on.

The taxi arrived shortly after, and the driver helped my daughter into the back seat of the taxi. I crutched myself into the front seat, and they put the chair into the boot. Then the taxi drove me to the hospital.

No harm done, really. I was able to arrange an accessible taxi for the journey home, so didn’t have to use the transport service. I spoke to the transport coordinator, who in contrast to the one I’d spoken to last week was delightful and very apologetic about the situation. it wasn’t their fault- they had no provision to transport parents in wheelchairs with children.

It just seems such a massive assumption to make- that if you’re in a wheelchair, then you can’t possibly have children- or if you do, you can’t be expected to have responsibility to look after them…. what are parents in wheelchairs expected to do? I’m left perplexed that there is no system set up for delivering parents to hospitals with children. I guess it’s just one of the many assumptions my non-wheelchair using self had unconsciously made- that because I often take my child to appointments, that it was something that wouldn’t be much different when using the chair.

Another rethink required then…..

A few examples of how disabled people are treated…in which I discuss a Surprisingly Unsympathetic Obstetrician, and Patient Transport coordinator and operatives.

I have to go to my local Teaching Hospitals Trust to receive physiotherapy from what is variously called “women’s health physio.” or “obstetric physio.” They work with women who are pregnant or who have had a baby in the past year. They’re lovely people, and everything they have done for me has been helpful- and they have managed to keep on the right side of assessing injury/ inflicting pain each time I have been in to see them. I Can’t sing their praises high enough.

However, there are lots of people who have been involved in my care and treatment who have been less than helpful. As I work in healthcare, I am always aware how easy it is to negatively alter someone’s experience of care, for example, through being busy and seeming inattentive (which I have been guilty of before, when under pressure with the dreaded paperwork, to my shame), or when we’re informed by management that what seems like a simple request is, in fact, impossible for us to facilitate (which drives me crazy). This is frustrating for service users. I understand that, because if I wasn’t empathetic, I would be in a different job. However, there is NO SUBSTITUTE FOR LIVED EXPERIENCE, and being on the other side of the arrangement gives me an interesting perspective on how difficulties with service provision can really bum out your average patient / service user. I use the term patient advisedly, because this is the primary quality you are expected to cultivate if you want to receive healthcare services.
Here are my top contenders for people who have treated me with insensitivity, callousness or downright rudeness recently.
1. Surprisingly Unsympathetic Obstetrician.
2. Patient Transport Operative
3. Patient Transport Co-ordinator

1. Surprisingly Unsympathetic Obstetrician
We know that sometimes, doctors can neglect aspects of patient care that other members of the staff team are au fait with. For instance, not inflicting unnecessary pain. (Obviously, all the doctors I have ever worked with would never contemplate such a thing). During my most recent obstetrician appointment, the doctor (having measured the size of my bump, and listened to baby’s heartbeat) decided to check “relation to brim”.
For those folks out there who may not have gone through this process, this is where they check to see how far baby’s head has descended into the pelvis- which is important for the midwife to check towards the end of your pregnancy. Although, baby can sometimes stay well clear of your pelvis until labour is cracking on… so I’m not clear why this is important to do when there are 10 weeks of pregnancy left to go.
Anyway, essentially, to check this, pressure is placed on the top of the front pelvic bone- I guess with training you can tell if what you’re feeling is baby head or just guts. So far, so good, you may imagine. Except, in my case, the joint at the front of my pelvis is inflamed and unstable- so much so, that merely putting weight through my legs separates the joint and causes huge pain.
The doctor has had extensive medical training- there’s always the chance that there’s a clinical reason for what they do which they have decided to not share with the mere patient- but sometimes, it’s as if they haven’t considered the impact of the tests they do, in terms of the trade off between “useful information derived” vs. “pain and mistrust generated”. This particular doctor decided to err on the side of gathering potentially useless information, and pressed hard on the front of my pelvis.
I didn’t scream, but i did whimper and go “OUCH”, so that it was clear to doctor that this was uncomfortable. Doctor finished pressing, and continued with the stream of information and questions” blah blah…. % chance of a vaginal delivery….blah……of, course, incidence of instruments….blah….emergency section….blah blah”etc.
Doctor seemed unaware that I was now seeing stars, and was completely incapable of following simple conversation, never mind being a partner in making decisions about my care. I was doing that silent weeping that has sneaked out when you’re busy concentrating on other things, and big fat tears were dropping off my cheeks onto the floor. Doctor simply asked me to return in 3 weeks and make the decision then.
I spent the next 3 days side lying, on 8 30mg codeine / 500mg paracetamol tablets a day. That’s double my usual dose of codeine- I’m trying to keep it to a minimum to avoid baby being exposed to any unnecessary drugs.

2. Patient Transport Operative.
If you use a wheelchair and you have an appointment in a hospital, you can use the patient transport service, it gets booked through the ward or department where you have your appointment. I was on my way to physio. I hadn’t been on the “patient transport” before; I had simply been using my local alternative transport service. The transport guy arrived and checked out the access (see the post about it for a fuller description). We then got out of the house, across the yard, and I got into the chair to get down the hill. We got down the hill with the minimum of difficulty, then got to the car.

That’s right- they had sent a guy to collect me in a car. I asked if he expected me to get into the car on legs? Yes, he expected me to get out of the chair and into the car. He rolled me up to the front passenger door, and opened it. Yep. It was just your standard car passenger seat. No turning disk. Not even a carrier bag to help to get into the car (don’t knock a carrier bag on the seat- it really is as good as a fancy turning circle at helping you to get into a car!).

I did ask whether he thought this was an appropriate vehicle to transport a wheelchair user in. He agreed that it wasn’t really suitable. Especially because he wasn’t allowed to transport the wheelchair in the car. I wondered what we would do with the chair, once I got out? He shrugged, and suggested he could leave it at the side of the road for when I got home. After all, I could use a hospital chair when I got there. I asked him if he thought it was a good idea for me to leave a borrowed NHS wheelchair at the side of the road? He agreed, it wasn’t ideal, but if he took it up to my house it wouldn’t be there for me to get back up the hill in, after I’d been to hospital.Good point, I thought.

I really had to get to my appointment, so I agreed, we just had to get there, and we could sort out all of this later. I got out of the chair, and there were a fair amount of the sickening cracks I’ve mentioned previously. And I did whimper a bit, and a few hot, fat tears squeezed out without permission.

I got in the car, and attempted to regain some of my usual composure and good humour. Patient transport guy was a little perturbed by this chain of events- I don’t know how he thought this situation would resolve- he seemed genuinely surprised that this was a painful procedure for me. To his credit, he got on the phone to the hospital, and changed my “transport code” (presumably from “nah- she just wants a bit of company” to “yes, she actually is a wheelchair user”), he then folded the wheelchair down and put it in the boot, “you can’t do without this the other end, can you love?”. He was the perfect driver the whole way, and was very sympathetic and sorry for all the trouble. None of it was his fault, he had just been given duff information by the department booking him.

3. Patient Transport Co-ordinator.
After finishing physio, the next step is, apparently, to go to the patient transport coordinator’s hatch, and report you are now ready for transport. This appeals to me, because I’m a bit of a Trekkie. However, as we will learn, it is probably quicker to wait for Scottie to “beam” you home than to go for the patient transport.

Firstly, you give your name. The co-ordinator smiles. Then, you ask when the transport will happen (because, I wondered is there time to get lunch and a decaff.? or is it so quick it’s better to wait until you get home?). Coordinator scoffed at the idea that he would be able to offer me an idea of approximate timing- it’s rare to see a scoff as part of a customer service experience. He smiled, indicating that I did, in fact, have time to get a coffee and a sandwich. I didn’t mind- I’d bought a magazine, I’d brought a book, my smartphone was fully charged for Tweeting….it’s a day out if you haven’t been on the usual social whirl, even if it is just the reception of the local hospital. So, the wait began.

I checked in after each half hour, just to make sure they realised I was there. But here’s the funny thing- more people arrived to get transported to here and there, the waiting area became crowded with elderly, infirm and incapacitated people. But nobody left. And nobody told us why.

I asked the coordinator if today was a normal day, if there were any specific problems with transport today (I must admit, I was concerned that if we were still there in the afternoon when there was a World Cup England football match on, we might very well be stranded for some time). He said “no love, it’s just that lots of people want to come in to the hospital today, so we’re collecting them. And we all have to have our breaks, you know”.

I work in healthcare, and am entitled to breaks by employment legislation. But they are not a priority- if our service users need us, we delay our breaks. Some shifts, we don’t take them, if there isn’t a way to leave the ward safe with a staff member down. However, I do agree that we should value our breaks higher, and make arrangements to ensure we take them at appropriate times every shift- it helps us to deal with a stressful job and prevents burnout- but that’s another story. Suffice it to say that I admired his protection of his staff, whilst slightly miffed that we weren’t prioritised a little more by his service.

So I waited…half an hour…..three quarters…..an hour. I asked if it was likely to take much longer. He laughed….and said it was likely to take a lot longer. Like the earlier scoff, this was an unusual approach to customer service, which would normally involve delivering such bad news with an appropriately sombre expression. But I got the impression that we mattered not a jot to him. After all, it wasn’t just me, there were at least ten of us waiting by now.

I started to feel concerned, I’d left with 3 hours to go before my next painkillers were due- and already 2 hours had passed with an hour’s appointment and an hour’s waiting. In addition, I have a time limit to being in the sitting position- 2 hours in a day is enough- I have to do side lying for the rest of the day. I decided to be upfront about it. “Look” I said “thing is, I can only sit in the chair for 2 hours before I start to get a lot more pain. I didn’t realise I could still be here now. My next painkillers are due in an hour, but they’re at home. Is there any way you can get me home within the next half an hour, please?”

“No love. I can assure you it won’t be within half an hour. It could be 2 hours from now.”

I was stunned. I hadn’t anticipated that it would be considered acceptable to leave someone in reception for 3 hours in a wheelchair, waiting for a lift home. Readers who use a chair or have family who do, may, at this point, scoff in a similar manner to the Transport Coordinator. This is our NHS, after record investment over 12 years. I’m a passionate supporter of the NHS, but at times like these I’m reminded how far below standards of customer service can be within the NHS, compared to what we would expect in the private sector. But I say none of this, just stand there doing a fair impression of a codfish.

I’m starting to panic. The coordinator has got bored with our conversation, and turns round to talk to his colleague about today’s football. I say nothing, realising that’s it, and wheel myself back to my allocated waiting zone like a patient little patient- just like the other ten patient patients waiting there. It must be because I’m new- I just don’t understand the rules. I look around. The people waiting all seem to have accepted this is now their fate, to wait in the hospital reception until someone comes to rescue them. Some are eating, drinking, one man is snoring, and others are just watching the world go by. A woman helpfully asks “are you getting sore in the chair?” I reply “yes”. She nods; it’s obviously an occupational hazard. “I get sore if I’m in the chair for long, too.

I’m so ignorant! I’ve been training, then working all this time- I’ve met countless people in my life and through my work that use wheelchairs. I genuinely didn’t realise what a mundane experience it is to be overlooked in this way. I seemed to be the only person there who was even prepared to question it.

Of course, I managed to find some painkillers in the bottom of my bag, so I was able to take them on time. I now go precisely nowhere without checking I have the next dose with me. My transport turned up after a total wait time of TWO AND A HALF HOURS. I was taken home and total chair time was nearly 4 hours when I arrived back home. Double what is comfortable for me. I spent the next 2 days side lying, but didn’t need as much codeine as after the obstetrician.

Interestingly, if I add up what I spent on a coffee, a sandwich, a drink of juice and a bag of crisps during the wait, I could have spent the money on the alternative transport service and got home without the additional pain. Just saying.