Hoists in hotels

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It is difficult for us to go away from home for any length of time. We have everything we need here, it’s fully accessible and set up exactly how we need it with a specialist profiling ‘hospital’ bed, ceiling track hoist and wet room. We also have a team of wonderful carers who come in and help us provide care for Quinns.

When we went to London for a hospital appointment last month, we had to leave all the home comforts and team behind for nearly a week. After our public transport experiences last time we decided to drive all the way. Huge thanks to Dad for his bravery at driving across Central London!

Quinns smiling in front of four made up beds in the Ronald McDonald House Evelina
Quinns and his Big Sister smile in the kitchen of the Ronald McDonald House Evelina
Quinns and his Big Sister smile with Westminster in the background across the river from Guys and St Thomas' hospital

Thankfully we were given a room in the Ronald McDonald Evelina House the nights before and after our appointment. Arriving to find a parking space in front of the house was a great relief after being on the road for nearly 12 hours. The DBS appointment went well but took the best part of the day, so it was so helpful to have a space to rest before we hit the road again the following day.

Dad managed to arrange a work gig for the Friday so on Thursday we transferred to the Premier Inn hotel at London Archway for the next two nights. I had heard it was the most accessible hotel in London boasting a total of 9 accessible rooms with ceiling track hoists!

We had two rooms booked: one standard and one accessible with a ceiling track hoist. After a bit of to-ing and fro-ing we ended up with two accessible rooms, both with hoists. One had a wet room with a shower, the other had a bathroom. (It was brilliant to have both so there was a choice of whether to shower or bath Quinns but a bit of me did feel guilty about having two accessible rooms in case someone else needed one.)

Part of the struggle with being away isn’t just the lack of hoisting but a combination of no hoist, low bed, and no additional helpers. So having one of those issues solved gave my back a bit of a rest at least.

Quinns smiles in his gravity chair in front of Anita who is sitting on a double bed. There is a ceiling track hoist in the top left of the picture.

Quinns, Big Sister and I had the Friday free to explore the city while Dad worked. Although the hotel is the most accessible in London the closest tube stations are not. We would have had a 25-minute walk to the nearest step free station, and we weren’t feeling well disposed to taking the bus after last time especially with a team member missing.

Instead, we made the most of our hotel room. With only an accessible shower room at home it was a bonus to be able to get Quinns in the bath. We used the hoist with his shower sling to gently lower him into the water where he relaxed for a good 30-40 minutes. It saved me from building the painstakingly packaged up shower chair that we had brought with us in the WAV.

Accessible bathroom with ceiling track hoist over bath and toilet in the Premier Inn Archway London
Connector for ceiling track hoist from hotel bedroom to bathroom

After our visit I contacted Premier Inn to thank them for having so many rooms with hoists available. I found out that bed raisers would have been available if I’d asked for them and the style of bed they are using is suitable for use with a mobile hoist which is good to know for future.

I also asked them why this one hotel had so many accessible rooms with hoists especially since the nearest tube station wasn’t accessible. Apparently, it was a planning condition from the Council when the hotel was built. So, this hotel has nine and their London Stratford hotel has one. Sadly though Premier Inn has no plans to roll out hoists in any other hotels in their chain.

Before this trip to London, I had never really thought about hoists in hotel rooms but they made a really big difference to our experience. There would be real potential if Premier Inn and other hotel chains were to take this on. Since being on this trip, I have also discovered there are no hoists in hotels in the whole of Scotland!

I would love to know about other people’s experiences of hoists in hotels.

The art of travel

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Quinns has absolutely loved taking part in Your Art World, an art project, at the National Gallery in Edinburgh over the last few months. As well as exploring the gallery he has used various techniques to explore artistic techniques and as a result produced some interesting artworks.

He has taken part in so many ways; cutting strips of gold foil, pressing down on paper for prints, holding onto stretchy material, choosing colours for ink and paint, rolling over paint in his wheelchair, decorating the walls etc. It is a challenge to find activities that Quinns can be fully involved in, and this has been a wonderful opportunity where he has been truly valued. Thanks to PAMIS for the opportunity and the lovely artists who have helped him explore the materials and techniques.

Quinns hand holds a blue brush. An adult's hand help guide him to press the brush into clay to make a stamp for printing.
Quinns smiles as his Big Sister pushes his wheelchair over a closed bag of red and yellow paint. There are strips of paper on the wall behind them.
Quinns has his back to the camera. His arm stretches out to stick down strips of gold foil.
Quinns smiles up at the camera. In front of him there is a painting made from dipping wool in paint and pressing it onto paper.

Edinburgh is an hour away. There are  always complex logistics involved with travelling far from home with Quinns. The main things to sort out are how to get there and how we care for him while we are away. I feel reasonably happy visiting the centre of Edinburgh because there are several Changing Places we can use; Waverley Station, Wetherspoons, St James Centre. There is also a facility in the Gallery itself which although it doesn’t quite make the specification for a full Changing Place is fine for us.

Quinns smiles in the centre of a narrow Changing Places facility with ceiling track hoist, adjustable height changing bed, toilet and screen.

We all know Quinns loves the train so travelling that way is a good option for a fun day out in central Edinburgh. For three out of the four sessions our train travel went smoothly. However, the day there was a bus replacement for a tiny fraction of the journey it went spectacularly wrong.

A normally 4-minute train journey took one hour! Even although we arrived in ample time for our train, as a result of inaccessible replacement buses and having to wait for a replacement taxi, we missed two trains and ended up in Edinburgh an hour later than planned. Sadly, it was the same on the return journey. What should have been a total of two hours travel there and back took us four hours!

I trusted the Scotrail app when it said the replacement buses and coaches were all accessible. Generally we have experienced good service on the trains and have also travelled by bus and coach with Quinns, so I had little reason to doubt it. We didn’t set out that day entirely naively so we made it to the art gallery on time but only because we had left a large enough margin of error.

It may have all worked out but we arrived home that day thoroughly exhausted and in shock at how badly the service had failed us. I have, of course, written to Scotrail detailing what happened in order to highlight the issues we faced. The response was an apology and assurances that the issues we flagged have been noted. The third party bus service have also been notified of their failures. All we can do now is hope that changes are made and next time we try we don’t receive such a disappointing service.

It is easy to highlight the good things that happen to Quinns without really sharing the difficulties. He has had some amazing opportunities recently which are good to share but none of them come without challenges. For every photo of Quinns smiling there is usually also a story to share about how he got to that point.

Quinns smiles from the wheelchair space on a train.
Quinns looks out from the gallery window at the trains coming out from Waverley Station in Edinburgh.

North to South

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I can’t let World Toilet Day pass without talking about Changing Places toilets. It has been great to hear that the 2000th Changing Place was registered in the past week. It’s a huge achievement but there’s still a long way to go to get Changing Places in all public spaces.

Quinns smiles while being lifted in his hoist sling supported by his smiling Big Sister by his side.

In recent months we’ve travelled to the north of Scotland and to the south of England from our base in Central Scotland. Our WAV (Wheelchair Accessible Vehicle) has given us freedom to roam. Quinns is happy and comfortable remaining in his wheelchair as we drive.

Our routes are always rigorously timed and planned according to stops with a Changing Places toilet available to give him a break. On our first journey north of around 150 miles we planned for one stop to break up our three hour journey. There is a choice of only two Changing Places toilets along the entire route!

Quinns smiles sitting at a table with his Big Sister behind him. The front of the Tiso store in Aviemore. A lit up Changing Places sign above the door to the Changing Places toilet in the Tiso store.

We chose the Tiso store in Aviemore, which was slightly over the halfway point. As well as the newly installed Changing Place we were pleasantly surprised to find a cafe in the outdoor/camping shop. The food was so good it tempted us back on our journey south again.

We would have liked to try out the Changing Place in Pitlochry but with limited opening hours it didn’t work with our plans. So for journeys north we will be back to Tiso until there are others for us to try.

Our second journey was the long road back to Quinns’ London hospital. At more than double the distance of our journey north, about 340 miles, we expected it to take us around six hours and need two stops. Thankfully, recently, there has been a large investment of funding for Changing Places toilets in services across England so we had our choice of service station stops with suitable facilities along the route. 

Instructions on how to use a Wall Mounted Changing Bench 3000. Quinns and his Big Sister smiling in the middle of a Changing Places toilet with adjustable height bench, sink, hoist and screen all visible. Sign that reads 'Changing Places toilet installed thanks to funding provided by the Department for Transport with Muscular Dystrophy UK.

In order to meet the standard required most Changing Places look the same, with similar equipment and fittings. On our way south we noted in one of the new service station toilets there were instruction panels for each bit of equipment. This is a really helpful addition as although the equipment is similar it’s not necessarily always the same and we need to work out how to use it.

On the way back we decided not to travel straight home, instead stopping in Leeds to meet friends. We were impressed by the additional details in the Changing Places in the Royal Armouries Museum there. Quinns especially enjoyed seeing the elephant statue on the screen. These small details make a big difference to our experience.

Green elephant fittings on an adjustable height bench which is closed against a wall. Quinns with his back to the camera looks at a screen with an elephant statue on it.

Using Changing Places in service stations meant we didn’t need to track too far off route and add extra time to our journey unless we had a reason to do so. Sadly they are not quite in all service stations yet. On the final leg of our journey we stopped at Tebay North having used Tebay South on the way only to discover there’s no Changing Place in the north one and no access to the south. 

We learned important lessons from our journeys north and south including how little choice we have and why route planning is so essential for us. There may be 2000 registered Changing Places across the country now but the campaigning for more must go on.

London Transport

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Quinns and his Big Sister wait for the tube train to stop on the platform. The wheelchair symbol is on the closest door.

We’ve spent a bit of time in London over the years; internships as students, visits when Quinns was a baby in his buggy and more recently while he was in hospital there for two months. We felt relatively at ease navigating our way around by train, underground and bus. Our most recent visit for a hospital appointment was the first time we’ve attempted it with Quinns in his wheelchair. We learned some very valuable lessons.

There were no issues with our first two tube stations as they both had ‘Step free access from street to train’ which meant we could easily get Quinns’ wheelchair on and off the train but also that we could enter and exit the stations. We began learning to navigate the complex lift system that took us between all the different levels. Although we’ve never noticed it before there was ample signage to help.

A sign showing the Lift Guide in a London Tube station with lifts marked A to F.

We should have spent more time getting to know which stations had step free access as we reached one station where although we managed to get off the train easily enough there was no way to exit the station. Frustratingly the nearest accessible stop to where we wanted to go was two stops along the route in either direction. 

After having to go two stops further than our destination we changed to bus travel to get back. Although the first bus had no problem letting us on, the driver did tell us off for all having used the wheelchair ramp. He explained to Dad that ‘ we could have broken the ramp’.

We learned our lesson for the second bus. So while I stayed with Quinns and requested the ramp, Dad and Big Sister got on the front of the bus and paid. However, that bus driver decided that Quinns was only in a buggy therefore did not deploy the wheelchair ramp leaving Quinns and me on the pavement in the rain as he drove off with Dad and Big Sister inside! 

We met up soggy and annoyed at the next bus stop after Dad had given the bus driver a piece of his mind. On the third attempt we all made it onto the bus but only after Dad had persuaded this driver that Quinns was in a support buggy which should be treated as a wheelchair.

We finally reached London’s King Cross Train station but having had no idea how long it would take to cross London we left booking train tickets till the last minute. We arrived 20 minutes earlier than the departure time of our train only to get a lecture about not having booked assistance because the ramp is the responsibility of station staff not train staff.

Regardless of who put the ramp out we found ourselves in the First Class carriage of the train having all been upgraded due to the position of the wheelchair space. We very gratefully received all the snacks and drinks that were on offer nearly four hours after deciding to leave London.

Learning new systems and finding out the best ways to travel as a wheelchair user is one thing but never knowing whether you’ll be left in the rain by the bus or pampered in First Class is utterly exhausting and frustrating. I’m very glad of our little team as we navigated a barrier filled (both physical and societal) transport system together.

Quinns smiles aboard a train. The sign behind him reads Welcome Board/ Wheelchair space.

Short trip north

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After a long 18 month wait for our wheelchair accessible vehicle (WAV) we were finally able to take a longer trip away for a much needed break. It was wonderful to be able to visit Nairn for a few days to see family.

Quinns and his Big Sister smile standing on a large rainbow at the #TeamHamish splashpad in Nairn

We had a lot of fun flying our new kite on the beach, walking along the rows of boats in the harbour and seeing basking sharks swimming in the Moray Firth. The real highlight of our trip was visiting the rainbow bright SplashPad created by #TeamHamish. Quinns thoroughly enjoyed pressing the button before racing around trying to avoid the fountains of water!

Big Sister is pushing Quinns fast to avoid the streams of water at the rainbow Nairn SplashPad.
Quinns looks serious in his Bug on the beach holding a red kite handle and string.
A kite flies high above the clouds and some cottages by the beach.
Quinns and his Big Sister pose in front of the boats in Nairn harbour.
Quinns looks at his Big Sister as they spin on the accessible roundabout next to Nairn beach.

We’re already looking forward to going back and can’t wait to see the second phase of the #TeamHamish plans as they begin to take shape.

National Cinema Day

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We’ve not managed to get away this summer. Our long awaited WAV (wheelchair accessible vehicle) arrived the day before the schools went back. It has been a real struggle fitting Quinns and his Bug wheelchair in our car and has made days out very difficult if not impossible. The cinema has been our go to as are lucky to live within walking distance of the Macrobert Arts Centre, a creative hub which includes a cinema and a Changing Places toilet.

Quinns has always loved watching tv. It’s the one thing in life he doesn’t need help with. His interest in film began when he was really small. It started with films like Toy Story, Cars and then Planes: Fire and rescue, the film where his favourite song, Thunderstruck by AC/DC comes from. Last year he graduated to watching all the Star Wars films and quizzed everyone on his eye gaze with questions about which lightsaber they would rather own.

This year Marvel has taken over. He’s watched so many I’ve totally lost track. His knowledge on the subject is incredible. He loves to guess which Marvel character from clue cards. It’s a great way for him to show us and anyone who visits what he knows. 

Quinns has a serious face looking at his eye gaze computer which can be seen from the back. A mini screen shows pictures of Marvel characters and a card shows the character Hela.

We know he gets a lot out of watching tv programmes and films. Not only is it brilliant research for his budding film making career but we know he’s safe and happy watching at home. However unless he has persuaded one of us to join him it can be a fairly solitary activity. That is not ideal for our social butterfly so cinema is an obvious activity to get him out and about.

You would think it would be an easy and accessible activity. However a few years ago when I looked to take Quinns and Big Sister to our local major cinema I discovered it was not. The accessible seat was situated (caged in) right at the front of the cinema with only one carer seat next to it. 

My dilemma, do I sit next to Quinns and send Big Sister, then aged 9, off to sit on her own in the body of the cinema or leave the two of them together and find myself far from them both? Even if we go as a family or I take someone with us to sit with Big Sister, we’re split up. Quinns couldn’t go with a group of friends without being separated from them.

Cinema screen layout diagram showing 2 blue wheelchair spaces with one carer seat each right at the front of the cinema separate from all the other seats.

Having designated wheelchair spaces with a carer seat may comply with the regulations but I’m not sure how much input there has been from anyone with lived experience.

The Macrobert Arts Centre is different. In one screen the wheelchair space is on the back row with ample space beside for us all to sit together. In the other screen the entire front row has drop down seats allowing wheelchair users and their families to sit anywhere along the row. 

The downside is we have limited choice of what to watch and we have to wait patiently for films we want to see as there are only two screens compared to the eight of the major cinema. However this is far outweighed by the fact we have access to a Changing Places toilet. 

This is now a necessity for any trip out with Quinns. I was surprised to discover on Changing Places awareness day that only a small fraction of cinemas have one which seems like a missed opportunity.

Cinema really could be a truly accessible activity if only more of them had access to a Changing Places toilet and there was just a little more thought as to the placement of wheelchair spaces. It’s not too much to ask for our budding film star, is it?

Quinns and his Big Sister smile from the dimly lit back row of a cinema.

Speech Bubble drama

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Quinns has been enjoying online drama classes with Speech Bubble drama for a couple of years now. Over the last school term he was supported to produce a short film at the class and in June we attended the premiere of his latest film, Quinns is a Starfighter Pilot. 

Quinns sits in his Gravity armchair smiling up a the camera. His red t-shirt has the Speech Bubble drama logo on it. A framed film poster with the title Quinns is a starfighter pilot leans against the chair.

From Quinns’ suggestions for what he wanted in his film we then worked on the story. Once complete Big Sister drew out a storyboard. We then programmed it into the eye gaze so that Quinns could explain the sequence of events.

After enjoying the results of last year’s film, Quinns, trains, automobiles…and rockets? We went all out this year on the production value with the addition of make up, costumes and special effects.  We had fun filming both at home and on location. It was a brilliant distraction after Quinns had been so poorly. 

The premiere was a fabulous celebration of the work produced by all the participants of the classes. Like last year’s, the films were all shown on the big screen for the creators, stars and family members before awards were given out for each film. This year there was the addition of a panel which allowed the participants in the classes to answer questions about their films.

We knew the questions in advance so after asking Quinns to answer we were able to work out more substantial responses to say at the event. He had an opportunity to practice before the event. On the day he was delighted to tell everyone about his problems with the wings falling off the Space Bug when we were filming and how he was inspired to make his film by Star Wars and the Millenium Falcon. I was so proud of how keen he was to use his eye gaze to answer in front of such a large audience.

He seemed to really enjoy being in the limelight and I think you’ll agree he makes a brilliant leading actor. You can enjoy watching both Quinns’ films on the Speech Bubble drama YouTube Channel along with a range of films from other participants.

Quinns is a Starfighter Pilot 

Quinns, trains, automobiles…and rockets?

Riverside Transport Museum

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Since it’s a bit tricky getting out and about at the moment we save big trips for special occasions. Our latest day out took us to the Riverside transport Museum in Glasgow. It was possible to spend the entire day there because it had a Changing Places toilet. 

Changing Places toilet door and Quinns and his Big Sister smiling inside the Changing Places toilet. I can be seen taking the photo in the mirror.

Quinns loved seeing the huge selection of vehicles. He pointed out the plane on the ceiling and watched the boats going around for a good long while. A highlight was the lifts that took him to the platforms to see the insides of the trains up close. I’m not entirely sure what he preferred; seeing inside the trains or just being in the lift! 

Quinns is very excited going up in the glass lift and then looking at the inside of a steam train.

Unfortunately when we tried to access the Tall Ship we were told the lift was out of order. We could have got Quinns onto the upper deck but given the rain we decided to give it a miss. There was plenty inside the museum to see, including a few new rooms we hadn’t seen before.

All in all it was a great day out!

Quinns, trains and…Changing Places

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Now that Quinns’ diagnosis has changed it’s a bit awkward writing a blog with cerebral palsy in the name. I don’t really want to change it and risk losing the readers and followers who support me but I’ve finally decided to rename it ‘Quinns, trains & changing places’ which allows me to keep the qtandcp. I’ve learned through this journey that it is places that need to change for inclusion to succeed so the purpose of the blog will remain the same. I’m sure there will still be plenty of cute photographs of Quinns and his Big Sister.

3 year old Quinns sits in his working chair smiling with a handwritten sign in front of him which reads 'Nobody should have to lie on a toilet floor! #ChangingPlaces
7 year old Quinns sits in his car seat cuddling his toy giraffe. He is smiling up at the camera.

As well as the change of diagnosis over the last 5 years of writing we’ve seen some massive changes in our lives. We’ve stayed at home a lot and we’ve travelled a little. We’ve enjoyed simple pleasures and taken on big adventures. 

We had to move house and then make adaptations to the new house. In between we raised awareness of the need to change play parks and raised the money to make our local play park more inclusive with paths and accessible play equipment.

Quinns finished nursery and started school. He has been teaching the teachers for three years now about everything from eye gaze technology to nasogastric feeding and we’ve experienced various versions of schooling; home, online and hospital.

Throughout it all and a big incentive for the change of blog name has been Changing Places toilets. These facilities have become even more essential to us over the last few years. We struggle to go anywhere that doesn’t have access to one these days. We have visited many that have been newly installed but there still aren’t nearly enough to make it easy for us to get Quinns out and about.

This Changing Places awareness day we support the campaign for all healthcare settings, cinemas and theatres to have Changing Places. I also want to raise awareness of the #RiseForSport petition aiming for Changing Places in all sports venues. I hope throughout the next five years I will be able to share photos of Quinns and his Big Sister outside many, many more.

So the name change not only covers Quinns’ change of diagnosis and everything we’ve been through in the last five years but also one of my favourite topics, Changing Place toilets! 

Dumyat Delta Adventures

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I’ve dreamed of getting Quinns up Dumyat for quite a few years now. Our local hill is well trodden by anyone and everyone. Quinns’ friends started their climbing attempts in nursery or early primary school. 

Six children with their backs to the camera including Quinns in his Delta buggy look out over Stirling. In the distance you can see the Wallace Monument. It is very small.

A friend and I started scouting the possibility for Quinns while he was still in nursery. We wanted him to experience the great outdoors, the change of perspective and the clarity that comes with being so high up looking out over the land.

We are very lucky to have been gifted a buggy style wheelchair, Delta Delichon, which lets us get off road with Quinns. Over the last few years we’ve taken him on various walks in attempts to get fit and to feel comfortable with the Delta. Our experiences have included flat tyres on the coldest of days and upset ankles following the rough terrain of the Darn Walk on a sunny day when we got carried away.

All thoughts of climbing Dumyat were put on hold while my ankles recovered and as busy lives took hold. It took a major health incident and a good friend permanently returning to Australia to give us the push we needed to actually do it.

All the plans we had previously made didn’t seem so relevant now. We definitely weren’t as fit as we intended. We didn’t have the team of people we needed. We had none of the extra equipment we thought necessary.

There were only three weeks between the date we decided to go for it to when we actually climbed. These days I am far more aware of Quinns’ vulnerability so I notified Mountain Rescue about our plans. They were realistic but positive about our attempt deferring to my mother’s instinct about what was possible.

Packing for the adventure I needed Darth Feeder (Quinns’ feeding pump) as we would be walking across a feed time. I also needed hand sanitiser, test strips, syringes for flushes and cooled boiled water as well as pliers in case I couldn’t get the NG cap off.

On arrival at the car park we unloaded the parts of the Delta which had to be built in its entirety before getting Quinns out of the car. We sat him on a sling for the hoist just in case for any reason we had to get him out. I had my set of allen keys in case of minor issues with the Delta and a mountain biker on call in case of a more major incident.

Quinns smiles in his Delta buggy on a grassy embankment under blue sky. I am only just visible adjusting the feeding pump behind the Delta.

We were a team of ten. Four adults and six children. Of course the children were all much older than when we had originally planned this adventure. I felt confident now that Big Sister is bigger, stronger and more capable of handling her brother.

The weather had been dry for days so the path was dusty not muddy which made it easy underfoot/wheel. We modified the Delta to have two handles on the front to allow support from the front and lifting if necessary. The majority of the path was reasonably accessible to the wheels but some bits were harder to get over. 

Three adult women manoeuvre Quinns in his Delta buggy across rocky terrain with a view of the Wallace Monument in the distance. A seven year old boy is in front of the Delta.

It was a beautiful evening. The sun was shining. There was a slight breeze. It was neither too hot nor too cold.  We took it slowly just enjoying; the journey, the company, the attempt. 

We stopped roughly half way for a snack and to put Quinns’ feed on. After the break everyone was keen to keep going. The path was flat and easy until it wasn’t. With the rocky slope ahead of us too tricky for this attempt we explored going around the longer grassier route. It would have been possible but we decided not to this time. From our previous scouting trips we were also aware there was a second really tricky part. 

It was never our intention to get the whole way up on this attempt. Whatever distance we managed we would have been happy. It was about the journey, the going for it and seeing how far we could get. As a result the whole adventure far exceeded our expectations and who knows how far we might get next time with more preparation.

Quinns (in his Delta buggy), Big Sister and I smile at the camera. We are half way up Dumyat hill.