Pat’s Petition- make a difference in support of people who are chronically sick and disabled.

Chronic sickness and disability will affect all of us at some point, whether we become unwell or disabled, or whether our parents, children, friends, colleagues or neighbours do.

Please, please sign Pat’s Petition.

http://epetitions.direct.gov.uk/petitions/20968

Today is the last day to collect signatures needed to ensure the debate about welfare reform includes the terrified voices of those most affected by it- the chronically sick and disabled. Pat’s Petition calls for Welfare Reform to be conducted in a responsible way so that disabled people and people with chronic illness have the cumulative effects of welfare Reform and Government Cuts taken into account.

Today is the final push- we need more signatures. Please, please help. We’re not furry*, or cute*, but we need your support.

Cute and furry badgers get your support. How about us?

*some of us are in fact furry and/or cute.

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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.

Martin Weller, @2012DaytoDay Challenge

I am a wheelchair user. I haven’t always used a wheelchair, but since April 2010, it has been the best way for me to get around outside, minimising pain and fatigue.

Becoming a wheelchair user is a process, rather like any loss process or a bereavement. One experiences different emotions; from grief and anger, to despair and acceptance. But it’s not a linear process; we might be fine for a while then plunge back through another layer of anger and despair when we realise another plan has to be changed, another holiday cancelled.

It’s not easy for the family of people using wheelchairs, either, because they have to deal with the process the wheelchair user is going through, whilst also following their own loss process. My children have had to adapt to the physical limitations I now have. I can’t pick them up very easily, and I can’t sit with them on my knee for a cuddle as I used to. I’m not able to do the school run.

My partner has had to adapt to becoming a carer, and to being charged with doing a far greater share of helping at home to compensate for my limitations.

Making a decision to plan for the future in a wheelchair is hard emotionally, but it can be hard practically, too. It is often not possible to stay in one’s job, if they cannot make “reasonable adjustments” and this can have a serious impact on the family’s finances (I’m speaking from bitter experience, here!) People are often unaware of how little equipment and adaptations are actually available on the NHS, and how much have to be funded out of the family’s resources.  Lots of activities, favorite holiday venues or meetings with friends have to be changed or cancelled because the venues have poor access.

Recently, I bought a second hand mobility scooter, because self-propelling a wheelchair takes considerable energy, and my energy stocks are very limited.

Despite my initial concern about how it would look to others, this addition to my life has been transformational. Thanks to the scooter, I can now independantly get up and down the hill outside my house, without the need for a push from a strong person! I can now imagine going with my family on a holiday, and being relatively independent to get from place to place without a push.

We still face the problem of a lack of accessible, affordable holiday accommodation. Common to many families with a disabled member, finding a place that we can afford, that I can access, so that our kids can have a summer holiday like any other kids is very difficult.

During the @2012DaytoDay Challenge, Martin Weller, the CEO of a local Charity called Disability Action Yorkshire is hoping to raise funds towards the provision of accessible holiday accommodation for people who use wheelchairs- this kind of accommodation is in very short supply.

Martin will be using his scooter to get from DAY HQ, Harrogate, to DAY Holiday Cottage, Louth between 30th June to 1st July, 2012. This is a journey of 125 miles and he has just 48 hours to complete the challenge!

He’s fundraising for families like mine to have holidays in accessible accommodation that doesn’t cost the earth. Please support him if you can, and follow his progress on Twitter!

For more information about Disability Action Yorkshire, please see http://www.disabilityactionyorkshire.org.uk/ or follow them on Twitter @DisActYorks, or on Facebook at www.facebook.com/disabilityactionyorkshire

Follow Martin on Twitter, at @2012DaytoDay. Donate to help Martin reach his £10000 target at http://uk.virginmoneygiving.com/fundraiser-web/fundraiser/showFundraiserProfilePage.action?userUrl=DAYtoDAYChallenge

#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.