Access Champion

Feeling the Fear Flames against a black background  I know no one has to justify themselves or a fear but I feel I have to. I have a fear of pain - (needles, injections, surgery...). For the latter, you may say, 'get knocked out!' but anaesthetic also fills me with dread. Here’s why: When I was little, I had four teeth out, by the dentist, under anaesthetic. My mum held my hand, watching as people went in and came out. I lay sleeping still. She stroked my hand, willing me to wake up. When I finally did, a bit of my brain had been lost, and my balance occasionally went and I’d fall. A few years later we couldn’t find out why I tired easily and was so wobbly, the GP sent me to the local Children's Hospital for tests.  I had many tests, including a muscle biopsy. For this, I had to be knocked out with anaesthetic. The test results showed I have Leigh Syndrome, a mitochondrial disease that my little brother died to aged 19 months. It’s progressive, as the mitochondria that fuel...

Faye and Mandy outside the theatre with the  Harry Potter and the Cursed Child sign. We were back in London to see Harry Potter and the Cursed Child. Before the pandemic, there were three audio description shows on in January, July and September, now, post-pandemic, there's only one. We booked our tickets a year in advance, the woman we spoke to on the phone very kindly moved us from row Q (the wheelchair spaces) to row F, where the audio description signal was better. Due to the train strikes planned for 26th September, we had to rearrange our whole trip, this involved cancelling a night at the hotel and jiggling the train assistance round. However, when they decided not to strike, we changed our plans back. The train from Liverpool Lime Street to London Euston went surprisingly fast. My mum and I were glad to see a few people, including us, still wearing face masks. London traffic lights don't beep, which I feel is unsafe for blind/visually impaired people. I had to rely on m...

In Leicester, we stayed at the IBIS as it’s near the train station. I’ll start this review on the train down. Liverpool to Leicester took two trains. The East Midlands Railway from Liverpool to Sheffield, we were put in the toilet carriage. It had an occasional voiceover in control of the driver, who called out her favourite stations only. Luckily, Sheffield was one of them, so I knew where to get off. Unfortunately, the ramp was not there. This turned out to be because the train had been sent to another platform at the last minute and the staff were unaware. We had to wait a while for the two women to find the ramp. One of them asked abruptly, 'have you not booked assistance' About ten minutes later, we were squashed onto the next train. It felt like an old Virgin train, but the train announcer woman kept saying, 'welcome aboard this East Midlands Railway service to London St Pancreas ...' they had some carriage difficulties, so people were put in the one compartment t...

Our second big charity event took place at the Leicester Space Centre. In contrast to the Brooklyn Manchester, the customer service for organising it wasn’t as good. We were pleased to have interest from 57 people. We hired a separate room for the families to meet up with tea/coffee after they had been around the Space centre. When I confirmed our booking and paid the deposit, they offered a chance to look around the centre. I explained to them that as I live over four hours away, it would be great if they could do a tour on zoom. Their reply was a disappointing, 'this is not something we offer.' such a modern and tech savvy approach to business! Especially for scientists. Imagine how much they could open up to new business by offering a zoom/virtual tour! The morning of the event, our taxi dropped us off outside. Faye outside the Leicester Space Centre next to a statue of an astronaut appearing to be floating in space on the top of a concrete base. Blue sky and sunshine. It wa...

The train from Huddersfield to Manchester didn't have a voiceover and on the northern train, we were sat by the toilet.  I don't remember Manchester Oxford Road station other than there being a hill to get out. Something the charity I founded, Leigh Network, does is bring families affected by the life limiting, debilitating and terminal illness, mitochondrial disease, together. In August 2022, we held our very first weekend for adults! I found the Brooklyn Manchester Hotel on the CHUC (Ceiling Hoist Users Club) website and chose it for that reason. Many with Mito require accessible rooms, including a hoist and a profile bed. Fortunately, the Brooklyn provides all three. Although, there’s only one profile bed and two hoist rooms. Throughout the organising of such a monumental weekend, for our charity, the staff were brilliant and put my frazzled mind at ease. When we arrived at the hotel we went into a beautifully decorated foyer. With dim lighting, a checked floor and artistic ...

  Bright yellow sunflower bathed in sunlight -all images the same. Recently, it was a good friends life celebration service. She died to a similar condition that I have. Sunflowers were her favourite💛💚 When my mum phoned up the assistance, I think we confused him, because we had three trips on different days to book.  The first was Liverpool to Huddersfield. I think this was a TransPennine train. The journey was fine, they had a voice over to announce each stop, and a bell alerted passengers to the approach of a station. Huddersfield station was a new one to us. It’s quite a nice, small station, from what I saw of it, like Liverpool Lime Street train station. It had a lift to get you up to the concourse from the platform. To exit the station there’s a stairway and a ramp. To get from the platform to exit, we had to go up and down in a lift. As we didn't know the area, we decided to get a taxi. We saw a Hackney, the only accessible cab, but as we went over, it was empty....

London Take Two of 2022 I was recently invited to attend a charity event in London, so, of course, we turned it into a mini break. The journey there all seemed a bit back to front, but somehow all worked out in the end. On both Merseyrail and Avanti Trains, we weren’t put on at the usual end for the accessible carriage. The Avanti one might’ve been because the help desk at Liverpool Lime Street train station was closed, so we had to ask the Avanti staff to get us on. We got the later afternoon train, which was quieter. We wore our masks throughout. The walk to London Euston train station exit was much shorter than usual due to the carriage change. As our old favourite, the Imperial Hotel, was fully booked, and their charges have increased, so you no longer get a free meal and breakfast, we booked the Premier Inn Holborn. This was quite a walk from Euston, but we may have taken the long route. As you come to the front entrance, there are steps and a lift. The buttons ar...