Sunday, 20 March 2016

A day in London with MS and the Family #accessday

Yesterday Mike, Rachel and I went on an adventure to London to
at The Victoria Palace Theatre.

We had researched different routes to get there including the cost and the ease of each route.
In the end we decided that we'd let the train take the strain
and thought it would be a good way to see what support was available doing this.

I visited the Great Western Railways website
and was really impressed with the Assisted Travel section information
including information about each train station.

I have a disabled person's railcard which reduces the cost of travel and provides immediate information about my disabilities to the train operating companies.    
I decided to use the DPR assistance booking form online, 
but when I didn't get a confirmation email decided to ring GWR direct.  
I'm glad I did because the form hadn't worked - they advised to always phone.

We booked assistance at Reading train station for the 11.50am train
and were told to arrive at least 20 minutes before departure.
Never a family to be late, 
we parked in the disabled parking space at Reading train station 
and had bought our tickets by 11.10am.

We spoke to the man at the barrier and he let us through and said he'd radio for assistance.
We knew we were early and so expected to wait
but only had to wait about 5 minutes and were apologised to several times for that.
We actually found this amazing sign about the station for visually impaired.

The guy who came to assist was friendly and energetic,
he made the whole experience relaxing and fun
and I didn't feel a burden in any way.

He saw that our train was delayed and got us to an earlier train.
This was great in theory, but that train was really busy and we were last on,
having to wait until everyone had cleared space for the ramp to be placed.

The assistance guy was brilliant and shouted for people to let us on
and offer their seats to us, but no one gave theirs up!
I had to literally ask a few people myself and one eventually gave up their seat with a tutt!

There I was, 
on a seat for a disabled person, 
with 3 other non disabled people 
(also in disabled seats)
staring at us and not moving for anything.
When did Joe Public become so self centred and rude?

After a very uncomfortable journey;
I hadn't realised how much pain it causes to brace myself from moving or falling off a seat;
we arrived at London Paddington.
This was the bit I was worried about.
Would anyone come with a ramp?
How would we know what to do if one didn't arrive?

We needn't have worried.
The ramp was there waiting for us.
And AGAIN the only problem was the public.
They tutted and huffed as the ramp was placed and then they all used it to get off the train.
Even when the assistance guy asked them to allow me off they ignored him.

But I wasn't in a rush and we got off eventually
and it's easier onto a quieter platform.
The assistance guy apologised for the public,
this was really touching and affirming.
He asked us if we needed help getting to the taxi 
(I had stated that was our next transport route when booking assistance)
but we said we'd find it and not to worry.
I used to travel to London Paddington every day and knew the place like the back of my hand
and that matters when you're blind, because it means you don't feel so blind.
Sadly, although fabulously, there have been major improvements at Paddington
which meant I felt very lost and very blind.
But with Mike and Rachel by my side (mostly, Mike does like to rush ahead)
we found our way to the new taxi rank.

There were taxis waiting and no queue!  
That's never happened to me before.
The first driver was immediately out of his cab and putting down the ramp for us.
I had visited the TfL website to find out about the black cabs and accessibility
and rung a couple of black cab groups to check that the scooter would be allowed.
There were no problems at all.
The ramp wasn't too steep, was sturdy
and the folded down scooter and us 3 fitted in really comfortably.
So off we went across London in comfort.
I know that TfL and London Underground have done great things for accessibility
and we could have found a way across London by tube,
but I didn't feel confident enough to try that this time, maybe next time.

The taxi driver showed excellent understanding of wheelchair and scooter users
when he was deciding where to drop us off.
He was talking us through the different places close to the theatre
and their drop curbs etc during the roadworks all over the place.
He found a perfect location, jumped out and helped us and the scooter out again.
He could not have been more helpful.

We had a table booked for lunch nearby
but Mike popped into the theatre to check the arrangements for access.
The theatre reassured him that if we came back at least 10 minutes before the start time
that they would help us to our seats. 
So we headed off to the restaurant.

Mike will not like me sharing this, but.......
I had, as the planner of the day, saved a map of the theatre and restaurant to my phone
but Mike loves using the satnav on his phone.
I knew that as we stood on the pavement facing the theatre entrance we needed to go right.
But no, Mike's satnav was determined to take us left.
I knew we had 20 minutes so I gave in, which shocked him, and followed his plan.
10 minutes later he said how mad I was to book a restaurant 2 miles away.
2 miles?  I think not.
"You haven't got the sat nav on driving mode have you?"
Oh yes he had!!
We were walk-scooting round the one way system
I found it funny, he eventually found it funny.
Rachel didn't appreciate the fact that we had to retrace our steps!

Eventually, and bang on time, we arrived at Zizzi Victoria.
I had researched restaurants locally and liked the look of the layout of Zizzi.
I had rung them to book and was told to use the online system.
I told them I used a mobility scooter and they again directed me online.
So I booked online.
Can you guess what happened when we arrived?
Once we managed to negotiate the double entrance doors ...
It's impossible for wheelchair or scooter users to push one, 
get through and then pull the other on their own.
We were met with a sour sounding (and apparently looking) man
who demanded "have you reserved?".
"Yes, online."
"You can't bring THAT (scooter) in here, there's no room"
"I can't leave it outside, and it folds when we're sat"
"You should have rung and arranged an accessible table"
"I did!  
And I was told to book online!"
"well there's no room to get through"
"do you talk to every disabled person like that?"
"we don't get many"

There you have it!
That's what we face all over the place.

Zizzi Victoria, looks great online, no where near so much space in real life!
But we needed food and everywhere was full,
so we didn't back down and we found a way.
I walked with my stick and Rachel's help to the nearest available table
and Mike took the scooter to a safe corner.
It felt good to have not been scared off by them,
even though we were being stared at by the staff and half the patrons.
We had a lovely meal, the food was wonderful
and the seat was surprisingly comfortable, which is very rare for people with MS.

It was 2.10pm
We were at the theatre 
There were crowds everywhere
Mike went to tell them we had arrived
Rachel waited with me
Another lovely person appeared out of the crowd
Asking what I could see and how close he should stay so I could see him.
He parted the crowds as he took us around the side to the accessible entrance.
He showed us to our seats and was really careful that I was comfortable
and then arranged for the scooter to be safely stored.
The show was spectacular
I couldn't see a huge amount
But I could follow the actor playing Billy Elliott 
when he was dancing his solos

At the end we thought we'd have to wait for the scooter
But as the final curtain fell for the final time
There was the same guy
With my scooter
Ready to help us leave
The most wonderful, accessible experience.

It's tempting to end on that high
but as with all great trips
you have to get home again.
By this time I was exhausted and in pain
but I didn't tell Mike and Rachel
what could they do?
It was also dark so I was pretty much completely blind.
We followed the crowds towards Victoria Station
and the concourse was heaving!

I couldn't see anything
I couldn't make out Mike
I couldn't hear his voice for all the noise
I was petrified
I pretty much shut down.
But Rachel knew just what to do.
With her hand on my shoulder
and her voice in my ear
she helped me follow Mike
through the throngs
and out to the taxi rank.

There was only one taxi there and it was a huge Mercedes black cab.
We thought that would be even better than the normal black cabs
but it wasn't set up as well as the earlier one.
It didn't have an inbuilt ramp
and I'm not sure the driver had ever used one before.
He huffed and puffed as he got it out of the boot
and it was a comedy watching him try to assemble it.
But he did
and the scooter got inside
and we got safely to Paddington station
although I had to tell him we couldn't jump out at the traffic lights!

A similar mercedes black cab
Paddington Station was bright which helped my vision that little bit
and we went straight to the first person in uniform
asking for where to go for our booked assistance.
They gave clear, simple directions
and we were greeted with smiles.
Again we were told we'd get onto an earlier train than we had booked
and I said I was concerned because we didn't get seats on the way there.
We were reassured that we'd get seats so we believed them.
The train was found
the ramp was put up
we got on
but guess what...
all the disabled seats were full of people.
I am clearly disabled, with a stick,
dark glasses on at night,
and a scooter being brought on board.
But did they give up their seats?

The GWR train layout for disabled passengers.
Well yes, and no.
One lovely young couple with a baby offered their seats
(behind the disabled ones)
but I couldn't take that from them.
Instead the young dad 
asked people in the disabled seats to move.
One guy moved immediately
and another moved making a huge fuss saying
"don't see why I have to, where will I sit?"
Two others wouldn't even make eye contact
and I thought they might have not understood English
until they started speaking to each other half way to Reading.

This journey was really painful physically
but more than that
it was painful emotionally!

Why do people think we need seats?
Why is it so difficult to see our needs?
Do they think it's fun to live like this?
Do they think it's a choice we make?
But I'm not going to focus on that.
Instead I'm going to focus on that dad.
He chatted to us through the journey
His son was adorable.
He got off at Reading as well and was really helpful.
He thanked us for being in that carriage and having a ramp
because it made life easier for them and their pram.
He wanted us to take the lift ahead of them 
but I insisted they go first.
He was an angel in human form.
He turned a really hard train trip into a pleasure.
If that was you
Thank you.

And so we were back in Reading.
We made our way to the car park
and were home by 7.30pm.
I was in bed not much later
Exhausted but euphoric.
What an amazing adventure.
There was bad experiences but many more great ones.
People, most people, care and are generous and helpful and friendly.

This post is a whole day of #TreasuredMoments 
and is linked up at


  1. Wow, I really can't believe how rude people are to a disabled person. I would never imagine being so rude to someone, and I hope that I am teaching my children the same respect. I am so sorry you had to deal with all that negativity. I am glad that you had all the good experiences to balance it out.

  2. That is so disgraceful! How dare they treat you like that?! I am baffled at Zizzi customer service - how appalling! Did you send them a complaint letter - I would totally do that. It is beyond belief that their staffs are discriminating people with disabilities. I can not expressed how sad I am that you have to go through this madness! I am glad you had a great time at the theatre and to have meet that great Dad. It looks like someone is taking care of you up there. Thank you so much for sharing with us your journey on #FabFridayPost

  3. rude but as a disabled person myself I am actually not surprised!! Seen this a fair few times and so sad that it happens!

  4. I really cannot believe people complained about giving up a seat particularly as they were sat in a disabled seating area thats just awful, It's goo to hear the train service was great and at the theatre its disappointing too hear how you were spoken to at the restaurant sounds as though some need to work on there people skills! Thanks for linking up to #sundaystars x