Yesterday Leftwing Idiot, Poppy and I went on a day trip to Brighton to have a meeting with some friends. We had a lovely time while we were there but the day was overshadowed by the awful journeys. They were so bad I’m writing about them this evening and not the visit itself.

To give you an idea about just how bad they were train, here’s my letter to the Managing Director of Southern Rail, the company responsible:

‘On Sunday 17th November I took a day trip to Brighton with Southern Railway. I want to share that experience with you now in the hope that it will lead to improvements for other passengers on your trains.

Having read an interview with you in the Rail Professional soon after you were appointed I’m confident that you will be taking my customer feedback very seriously indeed. In the interview, when asked what puts a smile on your face about the job, you say:

“Getting out there. Being seen. Understanding the real issues. We have to make sure our service is consistent. But sometimes it isn’t and I like understanding the practical things we can do to sort it out.”

It is good to know this, but when I got back to London exhausted after two consistently bad journeys on your trains, I could find nothing to put a smile on my face. I note that you believe that “If something goes wrong you should just get on and deal with it.”

I do to, so with that in mind I will describe each journey in detail.

I have Tourettes Syndrome, a neurological condition that means I make noises and movements I cannot control, known as tics. I had the opportunity to talk about my life with Tourettes at a TEDx talk held at the Royal Albert Hall recently and if you watch it you will have a clearer idea of how the condition impacts on my life.

In the last couple of years, movement tics in my legs have affected my mobility to the extent that I now use a wheelchair to get about. I have familiarised myself with the complexity of booking tickets using Passenger Assistance, a process which is additionally difficult for me because of my vocal tics.

In addition to my frequent tics, I also experience sudden intensifications of them, which I refer to as ‘ticcing fits’. These episodes happen several times a day without any warning – they look seizure-like and require similar management. They also mean that I need 24-hour support from personal assistants and carers to keep me safe, and that I have to take medication that affects my muscle control.

On Saturday 16th November I called the Southern assisted travel team and booked return tickets, for me and two carers, from London to Brighton, on the 10:17am train, at a cost of £49.95.

During this call I was advised of planned engineering works on the day. I was told that because the rail replacement buses were not accessible I would need to take a taxi from Three Bridges to Brighton to complete the journey at the planned time, 11.46am. After some discussion about how many of us would be permitted to travel by taxi, it was agreed that Southern Railway would pay for all three of us. I agreed to this and passed the information on to my carers.

Then later on Saturday I was called by another member of the assisted travel team who said that if I travelled slightly later, at 10:27am, we would be able to take a train directly to Brighton. I agreed to this and planned accordingly.

My carers and I got to London Victoria in good time for the 10:27am train. We went to find a Southern representative to help with my passenger assistance but there did not appear to be anyone specifically designated for this task.

A helpful guard at the platform told me that the direct train I had been advised to catch would take over two hours to get to Brighton. My reason for travel was to attend a planning meeting, and this additional journey time was completely incompatible with my plans. I had been told nothing about the travel time being over double the normal length when I had been contacted by phone the day before.

Because of this my carers and I got on the earlier 10:17am train on the understanding that we would change at Three Bridges and get a taxi, as had been arranged initially.

Once the journey was under way I called the assisted travel team at 10:20am and attempted to finalise this arrangement. The first person I spoke to bluntly refused to help. He told me that because there was ‘a train’ going directly to Brighton that day, I would not be entitled to travel from Three Bridges to Brighton by taxi. I pointed out that this was straightforwardly discriminatory. No other passengers would be forced to pay for the rest of their disrupted journeys in this way – they would simply use the rail replacement bus service.

I found the tone and manner of this customer service representative to be dismissive and unhelpful but I persevered and was able to speak to another representative. This second advisor turned out to be the person who had called me the day before to advise me to get on the later train. After further lengthy discussion, he agreed to book a taxi for our onward journey.

We arrived at Three Bridges at 11:00am and waited for the taxi. It was an extremely cold day and there was nowhere suitable inside for us to go, so we waited outside on the pavement.

One of my carers spoke to another Southern representative and asked how long we should expect to wait. He kindly radioed through to his supervisor but was told that they did not know when to expect it.

My carer then noticed that the rail replacement buses that were leaving the car park were wheelchair accessible. He went and spoke to one of the bus drivers who confirmed that 95% of the buses were similarly accessible.

However, because we were expecting our taxi to arrive at any moment, we chose to wait for it. In the end we waited outside in the cold for 45 minutes before giving up and getting on a rail replacement bus. I called the taxi company who had failed to get the vehicle to the station for over an hour, and cancelled it.

We arrived in Brighton at 12:35pm, 2 hours and 20 minutes after leaving Victoria. I was amazed that no one had checked to find out whether the rail replacement buses going from Three Bridges to Brighton were wheelchair accessible. My carer asked a taxi driver what the cost of a taxi from Three Bridges to Brighton would be and he said it would have been in the region of £50. This is more than the total cost of our rail tickets.

Had we known that the rail replacement buses were accessible we would have got on one straightaway and been in Brighton much earlier. I would not have had to have several extremely frustrating and upsetting phone conversations with Southern employees, and no expensive taxis would have been needed.

Despite all these major barriers and inconveniences I had a successful meeting, albeit later than planned, before returning to London.

There was no rail replacement bus at the time we needed to travel home so I resigned myself to an extremely long journey back to Victoria on the direct service. With a few minutes to spare we got ourselves on the 6:17pm train.

Once I had got myself in place in the closest wheelchair accessible carriage and the train had moved off, one of my carers told me that the nearest toilet was out of service. This was of particular concern to me because my medication means I need to urinate more frequently than normal. Feeling nervous about this I asked my carer to find the guard and see what was going on. He returned sometime later with the guard who told us that two of the other toilets on the train were also out of order.

The guard said he could find nothing wrong with the toilet we were near and switched on the automatic door to put it back into service. He carefully checked that the water was running before giving us the all clear. But when my carer went in and lifted the seat he found the toilet was full to the brim with faeces. He had been overpowered by the smell and came out immediately, gagging and distressed.

Had I gone in there first the situation could have been considerably worse. Firstly, I would have crawled in, a method that is often more practical and convenient than manoeuvring my wheelchair in the confined space. Secondly, having Tourettes means I have a tendency to over-react to any surprises or heightened emotions. This, combined with my compulsion to do exactly what I should not do in many situations (such as touching the flame of a candle or waving a knife around if I see one is to hand), could have led to a truly distressing and dangerously unhygienic incident.

Fortunately, all I was faced with at this stage was the urgent need to have access to a working toilet. The helpful guard informed us that there was one working toilet at the front of the train – although another passenger had apparently got stuck in that one for half an hour earlier in the journey because the door lock had jammed. The guard suggested that we get off at Littlehampton and move up the platform to the other end of the train to where the working toilet was located. I agreed to do this and he held the train as we made our way up the platform.

When we got to the carriage there was a man on a mobility scooter already in place by the doors. In order for me to get back on we had to ask him to come off the train first so I could get past. He was happy to do this, but it felt humiliating having to ask him to under these circumstances. I was aware, too, that we were holding up the train for the other passengers. However, this was preferable to waiting for an hour in the cold for the next train in the hope that it would have more than one working toilet and that there would not be other passengers with additional mobility needs on board.

Once we were all back on the train I was finally able to use the toilet. However, the light was not working and it appeared that the flush was not working either. For fear of getting locked in I did not lock the door and I had to ask one of my carers to wait outside to prevent anyone else coming in.

After this I was finally able to concentrate on the rest of the journey. By this time I was exhausted and extremely keen to get off the train. However, because my carers and I were situated by the only working toilet, we had to offer continual warnings to other passengers, including mothers with young children, about the lack of light, the faulty flush and the potential risk of using the lock. We ended up giving this advice to at least fifteen passengers – another considerable inconvenience to our journey.

We arrived at Victoria at 8:20pm all feeling tired, humiliated and distressed by the journey.

I am staggered that a train should be allowed to run with only one working toilet for all its passengers and crew, particularly when it is on a diversion that makes the journey time over twice as long as it would normally be.

I do not believe that we could have had a worse experience with any rail provider. I was amazed that after our poor experience on the outward journey the return journey should turn out to be even worse.

From your interview I know you believe, “You can’t pull your socks up while you’re wringing your hands” and I agree. Therefore I would like to know what you are going to do to rectify the issues I have identified, both in terms of compensating my carers and me for the experience of traveling with your company, and in terms of making overall improvements to the service you provide. Specifically, first, how will you improve communication between Passenger Assistance and the rail replacement bus companies you contract to ensure that reliable information about wheelchair accessibility is being shared and communicated? Secondly, what will you do to ensure that trains are not being run when only one out four toilets is working?

I look forward to receiving your full response to this letter and feel confident that you will be as helpful as possible in dealing with the difficulties I experienced whilst traveling with Southern Railway.

Thank you for your time. I appreciate this will have been a lengthy and fairly distasteful letter to have read. I can assure you that the experience itself was far worse.

What a day! I’ll let you know when I get a response.