Friday, March 18, 2011

Ability To 'Mobilise'

One of the justifications for the proposed personal independence payment is that there is less of an need to supply a disabled people with cash for mobility costs now that we have the disability discrimination act to ensure laws governing access and the NHS to provide wheelchairs. So, instead of someone’s ability to walk, their ability to ‘mobilise’ will be considered. 

Today I am trying to book a train ticket to London for the 28th of March.  I wish to attend a meeting about potential amendments to the welfare reform bill in the House of Commons.  Fortunately the timing of the meeting means that even from Liverpool I can travel back and forth in one day if I take the train.  You might expect those laws against discrimination and ensuring access to mean that booking a trip to London travelling by train would be easy.  So far today I’ve spent over 2 hours trying to organise this trip to London and have yet to book a ticket.

It all seemed so simple: My plan was to drive to Liverpool with my mobility scooter which my Motability car is equipped to carry, park and use the scooter to travel by train to London with and drive home late evening. Use a ticket booking website and make a phone call to check about access and assistance. Except when it comes to disability access it’s never straightforward.  I spent some time selecting which train times would work, looking at prices, working out where to leave my car then decided which trains to catch, and found the phone number for the operator, Virgin trains to check the access requirements.

That was when it became really complicated, trains are accessible to wheelchairs including power wheelchairs, however mobility scooters are only allowed on some trains.  Virgin trains* only allow the three wheel type scooter as they do not have room for four wheeled scooters to turn.  They also do not have storage room so that a scooter can be stowed away from the seating area which would enable many mobility scooter users to travel independently by train as they tend to have some, limited mobility.  Despite checking and rechecking the various different regulations it seems that mobility scooters are quite commonly prohibited on trains.

So what’s the problem?  After all I do have a wheelchair.  Unfortunately I only have an attendant wheelchair as I am unable to self propel the traditional Manual wheelchair, which means that to use my wheelchair I have to have someone with me to push me.  I’m not entitled to a care package from my local authority, despite being disabled enough to receive high rates of DLA for care and mobility, so any support must be paid for from my disability living allowance care component which already pays to fund a private carer twice a week, specialist physio not available on the NHS, and myriad other additional disability costs.  Paying for a PA for the day plus an extra ticket on the train is prohibitively expensive.  Finding a friend to act as a PA may be possible but the meeting is held on Monday and most of my friends are in fulltime employment. Despite being Big Society fans the realities of mortgages, bills and life means however much they’d love to spend a day taking me to London their own employers just don’t feel the same. Funny that.

I am currently on a waiting list for an NHS Power wheelchair, I was referred before Christmas 2010 and I am still waiting to hear when my assessment at home will be.  Although I can’t self propel a traditional Manual wheelchair, I don’t technically meet the rules of eligibility for NHS Power wheelchairs.  In most areas an NHS Power wheelchair will only be supplied to people who are unable to walk or self propel a Manual wheelchair around their own homes.  If that’s the case, once the individual reaches the top of the waiting list they will be supplied with an indoor powerchair only for an initial period of six months before being considered for a powerchair that is capable of going outdoors as well as indoors.  The reason I don’t technically meet the requirements is because although my joints are too weak to self propel a Manual wheelchair I do have some, albeit limited mobility, particularly in my own home and wish to preserve its for as long as possible.

Instead of a wheelchair like many people in my position I use a powered mobility scooter.  They tend to cost less money, are available more readily second hand and require less specialist assessment to ensure they are appropriate to individual needs.  They tend to be used outdoors only preserving the ability to mobilize within the person’s own home and limiting the amount of work that needs to be done to make a home accessible.  I could use my DLA mobility component to fund a power wheelchair but it’s already committed to funding  a vehicle with a hoist so that I can use my mobility scooter independently, and if I ever become entitled to a powerchair would also be able to carry that.  

So I’m left facing the following options;

Find a friend who is free to take me to London and act as my PA. Fund their ticket and day. 

Find someone in London (who I won’t know) who is willing to volunteer their time to act as my PA for the day and travel with my attendant wheelchair

Share a friend’s PA, although we are travelling on separate trains and said PA would then need to assist 2 wheelchair users, pushing one of us to get back across rush hour London for a train. 
 
Hire a powerwheelchair locally and use that to travel independently. 

Option 4 is the most practical, I’m a member of Shopmobility in Liverpool and can hire a powerchair for a week for £40, plus a refundable £50 deposit. Unfortunately, despite my car having an electric hoist to lift my mobility scooter, a hired wheelchair won’t have the fixings needed by the hoist so that makes travelling to and from Liverpool complicated. I will have to find someone to drive me to Liverpool (about 25 minutes, including tunnel tolls each way) so that I can be dropped off at shopmobility, collect the powerchair and use the local trains to travel home, probably needing to book assistance in advance. I’d then be able to use the local train to travel to Liverpool, then London in the powerchair independently but I would have to fund an accessible taxi for the return journey home as it will be late at night. Hiring and returning the powerchair on the same day is not a practical option unfortunately. Then, finally I will have to travel back to Liverpool using the local train service, return the powerchair and find someone who’s willing to collect and drive me home – again likely meaning two sets of tunnel tolls. 

The initial cost of travelling to London as an able bodied person would have been approximately £61 plus whatever travel cards cost. Instead, as a disabled person it will cost me;

£40 wheelchair hire
£50 deposit (refundable but must be provided upfront)
£15 (approx.) Local train journeys to bring hired wheelchair back & forth
£6 tunnel tolls
£35-40 Accessible taxi
£? Taxi’s in London
£65 (approx.) Train fare

Meaning that although I will get the £50 deposit back I’ll have to find approximately £250 in advance to fund a day trip to London for a meeting. One week’s care component of high rate DLA is £70 (approx.) The total amount of time I've spent trying to sort this out is approaching 5 hours and I still haven't managed to secure my plans enough to be able to book a train ticket. 

So much for ‘mobilising’ Perhaps Ms Miller will do her Big Society duty and volunteer to drive me to London herself?

*Please Note: This is a problem common to all train companies and not specific to Virgin trains.

10 comments:

Robin said...

I'm about on the 28th, and think I can do a day's wheeling.

Robin (queerpup)

Warpedwoman said...

Well said! I too am off to London soon - usual thing, ages on the phone to book special assistance (which message might not get through to the train staff). An hour or two checking out if I can get onto the tube (are there steps where I want to go?). Alternative buses (all? are accessible) but how many changes to make in a strange city. Give up on all of that and pay for a taxi - no option - unlike my able bodied counterparts. I only have a manual wheelchair and London isn't completely flat and what about kerbs ?- maybe I should pay for someone to go with me?....The list goes on and on and just isn't understood by the powers that be. Result is always extra time to plan and extra cash. Not for us the ability to walk into the station, buy a ticket, get off the train, onto the tube and walk wherever we want at the other end. Simples.

Anonymous said...

Can I suggest that you send this blog post to those who are arranging/heading the meeting?

They should know that before you can even think about discussing anything with them, this is what you have to go through. Not to mention the fact you will probably be exhausted by the time you actually get there and therefore this impacts on your ability to participate.

Tell them. This is the sort of thing which rich able-bodied people just do not even consider. They must be made aware!!!

DeusExMacintosh said...

I am entirely prevented from attending the 'local' FE college simply because the train company has refused to carry my scooter. They will apparently take the 'right' kind/size of scooter, but conveniently, mine is not it.

Can't walk from the bus stop, scooter won't fit on the bus and it's over an hour and a half to drive the whole way at 4mph which is a bit tough when it snows in winter here in Edinburgh.

dave mingay said...

I hear your pain, not an ideal solution but .... you could drive to Bedford get a commuter train to London bridge take the jubilee line to Westminster. Then do a return journey.
Email me if you want more information.
mingus_101@hotmail.com

Dave

Anonymous said...

I can't walk to my nearest bus stop! It is too far for me at the top of my street and isnt on the accessable rout anyway. The powers that be have never had to pre plan a journey, thinking about every possibility; it's not only about getting there but how accessible is when you arrive. Stairs, doors, counters and toilets are some more huge issues. Mobilise? & Spontaneity doesnt exist. Some times taxi firms think the short journey being booked is a joke so yet again discussing why with a stranger, then a taxi comes you can't get into...

Robert said...

The last march i went on was way back when Blair was in power, three weeks later I was called into the local DWP and asked how was it being so disabled I was seen in Cardiff in a wheelchair, I said yes I was in a wheelchair, with my carer. But it did show one thing boy they have an underground of photographers and spy's.

Maddy said...

I had a similar discussion with my mum last weekend as we're coming over to visit and they [parents] need to travel by train to meet us. I had no idea it would be such a nightmare for them [and they don't have similar mobility issues]

We're in the fortunate position to shell out for someone to drive them door to door but for most people that isn't an option.

Sympathy doesn't help but you have mine anyway.

tattoo said...

I use an electric chair,I am travelling from lancaster to london on train,cross london by taxi then london to gatwick on train.then reverse journey on the way back.STOP MOANING AND GET ON WITH IT!!!

Smodaig said...

I agree that wheelchair users need extra planning time and it may cost extra money if you travel with a PA or carer. Many newly disabled folk don't realise that buying a scooter is a complete waste of money, if you need to take them on public transport as they aren't allowed on buses, trains or planes (in Scotland at any rate). I at least inherited mine and when I discovered how impractical it was, I gave it to my neighbour who was able to shuffle to the bus-stop 20yds from the front door. Then I used my DLA to pay a grand for a 2nd hand power chair (worth £3,500) off Gumtree.
We are so fortunate in the UK to be given benefits like DLA to help pay towards power chairs, taxis and train fares or if you can still drive, a motability car. Please don't complain about having to pay a PA or carer, welcome to my world 24-7!
I am, as of 3 years ago, unable to get out of bed far less leave the house without a PA. I have to pay a fair chunk of my PAs' wages out of my benefits but that's why I'm given them! So for the odd journey, I feel you don't really have a leg to stand on (Oops! Pun wasn't intended!). I object to having my space invaded by folk who are nice enough, but it's MY space! I'd love to be able to just pop to the garden on my own, or go and make a cuppa in the kitchen and carry it through to the sitting room but on every occasion, I need a PA to help.
So I suggest, you sell or give your scooter away and start again and buy a power chair or power assisted chair depending on your disability. Then it is good to take stock of the good or enjoyable things in life and just get on with it to the best of our abilities. The sooner we realise that we have never been promised an easy life and not to expect one, then it seems easier and better and we complain less!