In August 2016, Mark was preparing to attend the Moving Forwards course for 18 to 25 year olds in Leeds. As he lived in Belfast, this was also going to be the first time that he had flown by himself. He called the airline several times before the trip to make sure everything would be in place to make his trip as smooth as possible.
‘I was very nervous at first. When I got to the airport, I didn’t know what to do but we went to the desk and a lady came down to take my suitcase. They also helped me to check in and took me to my gate. They were all really friendly and I started to relax then. It was a good experience. I couldn’t believe how good actually. I had no experience of taking a flight with my wheelchair so I just didn’t know what to expect.’
Mark believes it was the Belfast City Skills course which he attended earlier that year which gave him the confidence he needed to take that first solo flight.
‘I was used to people running around who got me this and that and I let them. But I learned on that course that I can do things myself.’
When he arrived in Leeds, Mark was aware that this was the first time that he would be doing a lot of things without someone else around.
‘I had someone from airport assistance who took my bags to the airport exit, but he wasn’t allowed to go any further. I had to go and hunt down a taxi myself, while he waited with the baggage. I had no idea where to go or what to do, and I was just used to having someone with me.’
Despite those hesitant first moments, Mark now feels much more independent and ready to tackle new challenges.
‘I’d do that trip again on my own now, not a bother. I just needed to see that I could do it.’
Moving Forwards also showed him that he was capable of going around a city by himself and he’s less worried about being out in his wheelchair now.
‘Going around Leeds was great. It was my first time going around a big city that wasn’t home. I’d be confident now to go around other cities, not a bother. I always thought there were a lot of people watching me in public spaces. Now I don’t really care about it.’
Mark still feels the benefits of the course now. It challenged him to try a lot of things he’d not previously attempted, but it’s opened his eyes up to how much he is capable of doing.
‘I definitely feel like I can travel more independently. There’s a lot of help out there if you need it. I was dreading it before because I just didn’t know what to expect, and having to do it alone was daunting. But now I’m much more confident.’
We were rolled into the world of spinal cord injury in December 2009 when our car hit black ice on a Monday morning as we were heading off from the north east of Scotland for our Christmas holidays. Our car had skidded on the ice, gone down a small embankment, rolled once and landed back on its wheels. There was minimal damage to the car. There was heart-breaking damage to our son, Sam, who was just 17 years old at the time.
The profound heartache I felt in the months that followed, I can still feel now when I dwell on all the complications spinal cord injury brings with it. I am thinking of the limitations imposed by using a wheelchair in a world not universally set up to enable access to all: the implications of catheters and bowel routines; the need to be mindful of skin and pressure risks; the necessity perhaps of equipment like hoists, shower chairs, pressure-relieving mattresses and wheelchair accessible vehicles; the management of medication; and the sheer fatigue that comes with a high level injury, in particular.
How could we avoid letting all these new issues dictate life for Sam primarily, but also for us as a family? I decided, in the end, that for me and, I hoped, perhaps for Sam, one way might be by making sure that the injury did not have the last word even if it had a lot to say about things and how they might be done.
Travel was one of the ways I was determined that we should push back. I felt that if Sam could continue to travel, even if there were some issues, then his horizons would remain wide and his life full of potential and opportunity. I simply could not bear to believe otherwise.
I decided to take him to Australia and New Zealand – two countries we knew well and loved. Although it was a long way away, to me, it was a safe place to start. Sam, still in hospital when I first raised it, probably thought I was crazy – my husband certainly did – but Sam was up for it, if I was.
Sam was discharged from the spinal unit at the end of July 2010. At the end of January 2011, we left for 2 weeks in New Zealand and 4 weeks in Australia. We took during that time 9 flights, we drove 2000 km and we stayed in 14 hotels/units. We had an amazing, exhausting and life-affirming time. However, although it may have seemed crazy to do so much so soon, it was not done in a foolhardy way. Between leaving the unit and leaving the country, we got ready and we practised what we would need to know and do.
I practised managing Sam’s care so that we could travel without needing a personal assistant and, as a family, we rehearsed what it was like to travel and stay away.
During this period, Sam was also getting stronger and more adept with the movement he did have and gradually progressed to doing assisted transfers with the help of a sliding sheet and transfer board. Strength that also enabled him to move to an e-motion wheelchair rather than being solely dependent on the electric wheelchair with which he had been discharged. This created the option of travelling in an unadapted vehicle if Sam could also learn to transfer, with help, into the front seat of a car. As a result, with the help of Sam’s community physio, we practised that too.
Over those months, we also stayed the odd night away in hotels and discovered just how many ways there are to interpret the word ‘accessible’. As a result, we found it helped to be as prepared as possible by calling or emailing ahead to check exactly what to expect and to clarify what we needed. The need to be organised also became apparent. I would frequently forget to take straws, for example, which was always annoying when trying to give Sam medication if he was lying down , and so the ‘Travel Bible’ was born – a detailed list under key headings of all the different items Sam might need when going away.
It is a folder that also includes a signed medical letter from his doctor detailing the nature of his injury and listing his prescribed medication as well as holding his travel insurance and other documents. On that first trip it also included the details of the closest hospital in each town where we stayed. It was not information I ever needed but I felt more secure having it!
On an equipment level, all these trips were facilitated by the fact that we had bought a collapsible travel shower chair. It is a big and bulky item even once stowed in its bits in its bag but, with it, we can travel anywhere and handle the bowel routine and showering as normal.
Pressure-relief was harder to sort. Initially, I took with me a furry blanket which provided a soft insulating layer between Sam and any buttons that might be on a hotel mattress. However, I still had to turn Sam an exhausting every 2 or so hours to ensure that there was no risk to his skin. More recently, though, we have acquired an air mattress which comes in a cylinder small enough to fit in a cabin bag. It is fabulous! Sam has up to 4 hours sleep in one position on it.
The other essential piece of equipment is a second gel pad. This is just the top gel layer of Sam’s Jay 2 cushion. We bought a second one along with a second cover to put on car and airplane seats so Sam can transfer off one pad on to the other and always be on an appropriate pressure-relieving cushion.
The lessons of our travels can be summarised in three words: prepare, adapt and appreciate. In other words, use the internet or other sources to research and organise your holiday but then follow that up with calls/emails to make sure your needs will be addressed at each stage – by an airline, by a taxi or car hire company, by a hotel or by a restaurant, whatever it might be.
Then with your list in hand and all items ticked off, accept that there may well be nonetheless the need to adapt to the reality on the ground. I stand my ground when Sam’s wellbeing would be compromised but otherwise we work it out and make do. People are generally very helpful and want to make it right when given the chance.
Finally, in the midst of all that preparing and adapting, don’t forget why you set off – to have fun and appreciate each experience.
Since that first big trip, Sam has continued to get stronger. He has left home and has travelled on buses, tubes, trains, trams, planes, ferries, motorboats as well as in taxis and cars. All these journeys continually underline that his life is still full of opportunity; journeys that have helped to steadily piece my broken heart back together as well.
Sam’s Travel Bible
This is our starting point for thinking about what might be needed.
Recharger(s) including continental or other adapter leads
Spare inner tubes/outer tyres (depending)
Extra gel pad and cushion cover
Travel shower chair
All necessary medication listed individually
Thermometer (not essential but useful)
Relevant medication individually listed
Bladder (for an indwelling catheter)
Night drainage bags
Leg Syphon bags
Spare catheter and related kit
Usual Toiletries plus
Mattress topper (air mattress)
Pillows x 4
Spare pillow slips
Blankets x 2
Glasses (sun, prescription)
Plug adapters as required for country visited
Technology rechargers for iPad, iPhone, laptop etc
VE103R certificate if abroad with Motability vehicle
Insurance policy numbers, contact details for chair, car, health
If you have any further questions related to travel, please contact our Outreach team or call us on 020 8875 1805.
My first time travelling without my mum was one of the most overwhelming things I’ve ever done. It taught me a lot about my own abilities, friendship and the importance of eating!
Friday morning came and I was equally nervous and excited about the weekend ahead. We were going to Frank Turner’s 4 day festival Lost Evenings which I was really excited for. However, I was nervous to find out whether or not I would cope without my mum. Getting to London was relatively easy and I’m grateful that Laura knew more about the process because everything ran smoothly. We arrived at Euston Station and then made our way to our hotel.
The first day held one of the scariest moments for me. We quickly realised that bus drivers would be funny about letting two wheelchair users on their bus at the same time. So we had to travel to the Roundhouse separately. This was my first time getting public transport in a big city alone, and I was terrified. I’ve always been scared of public transport. I panic that I’m on the wrong bus! However, once I’d done it, I saw how easy it was and wasn’t so scared the rest of the weekend.
Saturday went by pretty smoothly for the most part. However, I went a long time without eating and had to get an ‘assistance baguette’ before the show which was desperately needed. Before the gig, we tried to move our seats to the balcony because we had difficulty seeing the first night. We were given the go ahead from reception to move to the balcony but security manning the area was rude to us and said they weren’t prepared for two wheelchair users. The woman refused to talk directly to Laura and I and had the conversation with the person with us at the time. But luckily, we ended up being put back where she told us we couldn’t go in the end which meant we had a pretty good view of the gig!
Monday was our final full day in London and pretty eventful. We set off from Euston and headed to Back Up’s offices to discuss Back Up Fest. Laura has been heavily involved in the setting up of the festival and I have helped with generating some of the ideas. Our trip to the offices meant that we could discuss ideas from both ends with Kat, Back Up’s Community Fundraiser and a key member of the team organising the festival. After discussing our weekend, Kat suggested that Laura and I run a talk on travelling independently. After the meeting, we tried to get back to Euston but the tube stopped at the wrong point at the stop, meaning we were unable to use the platform boarding ramp so we were stuck. This led to us having to go all the way to Wembley and get off there. However, when we eventually got off, the lift to get us out was broken so we had to go back to where we were originally trying to get off. We missed the gig that night because we ran out of time in the end. I found that day particularly stressful at times. However, I knew I was fine, and was finally beginning to realise just how far I had come in that weekend in terms of independence and confidence.
My weekend in London was important for me and special in many ways, so despite minor setbacks, I will always realise how far I had come due to that trip. Living in Crewe, I was scared to go into town by myself because of a fear of getting lost or something happening. However, since coming back from London, I have managed it and realised how easy it really is. I have come back with a lot more confidence in myself, and I now believe that I am capable of all of the things that I had told myself that I wasn’t for so long.
Back Up Fest is being held in Oxford and after my trip to London, I feel more confident in using public transport and travelling solo. I want to challenge myself to make the trip by myself, which means I will have to plan and sort everything out to ensure it runs smoothly. But with everything I learned over my weekend in London, I’m ready for the challenge.
Don’t be scared to use mainstream tools like booking.com and trivago, but make sure you select the accessible search option. These sites will request that option, but you should always follow up with the accommodation provider directly for confirmation. AirBnB has a filter option for accessible accommodation too, but it’s worth checking your potential host’s reviews and cancellation policy, as some hosts may cancel your booking with little notice.
Holiday Inn, and all IHG hotels, will provide a free room for a carer if you ask. Premier Inn, Travelodge, Hilton, Ibis Hotels, Novotel (Sofitel), Crowne, Best Western, Marriott and Radisson Blu all offer accessible bedrooms.
It pays to do your research. Before you book, contact the accommodation provider directly and ask for pictures and investigate all room options. Don’t make assumptions; ask all the questions you need to know *. There may be a wet room and a lift but are there steps into the main entrance? The more confident you are with your arrangements, the more you’ll look forward to the trip. Be prepared to adapt, as things may not go entirely to plan but people are generally helpful and keen to assist if they can.
If the bed is too low, improvise: raise the bed with bed raiser blocks, or lift the mattress up and put spare blankets underneath. If you need extra pillows and towels ask when you check in at your hotel, or make a note in your booking.
A wheelchair caddy is two small pegs that attach to the frame of your wheelchair and can be used to carry luggage on the front. You can also secure your luggage to your chair with bungee cords. Pack cleverly – keep things you need to access quickly in a side pocket or the top of the bag. If you’re travelling alone, only take what you can manage.
If you need your hands free to walk with crutches, or push a wheelchair, use a backpack or small bag with a cross body strap. If you’re a wheelchair user, you can also use under seat storage and hook a backpack on the back of your chair (see images below).
EU regulations stipulate that you can take up to two pieces of mobility or medical equipment free of charge on flights within the EU. But always double check with your airline, especially if you’re travelling further afield.
Research renting a shower chair from a mobility equipment company in the country you’re visiting. If this proves difficult, consider taking your own shower chair or purchasing a travel shower chair (which can be expensive).
Research renting a hoist if you can’t travel with one. It’s advisable to bring your own sling even if you plan to hire a hoist. Further information can be found on the ceiling hoist user club
Keep your medical supplies both in your hand and hold luggage in case of loss. Bring a list of your medication with you in case you need to replace anything that you lose. Be prepared for the cost of purchasing medical supplies abroad.
Care and personal assistance on holiday:
First speak to your care agency to find out what they are able to offer.
Search online for Personal Assistants (PAs) willing to travel. You can also hire directly through services like ‘PA pool’.
Make sure your PA is covered by travel insurance or their agency, as they are working and need to be covered for the duration.
Be clear with your PA what expectations you have of them on your holiday. Some people choose to have a family member as a PA on holiday. Talk through how that would work and how it might affect your relationship (especially if they haven’t been your PA before).
Bear in mind extra costs that will be incurred travelling with a PA – travel, accommodation, food etc.
Do your research. Find out what is and what isn’t covered by your policy and make plans accordingly.
When applying for travel insurance, make sure you disclose infections, medical conditions and risks. Don’t lie about your medical history, as this will invalidate your insurance.
Make sure your wheelchair is covered by your contents insurance or a wheelchair insurance policy in case it gets damaged abroad. Be explicit about the cost of your wheelchair.
If you put your medical equipment in your hold luggage and it goes missing you can claim it from your insurance. If your airline looses your baggage, they may be liable for covering the costs of the medical supplies you need in the interim, but make sure you always consult with the airline first.
Apply for a free European Health Insurance Card (EHIC) which gives you the right to access state-provided healthcare during a temporary stay in another European Economic Area (EEA) country or Switzerland. The EHIC card is free and you can apply online. Don’t let second party sites make you pay to get one (this card is still applicable to UK residents, but keep abreast of Brexit negotiations in case this changes in the future).
You can take your mobility vehicle into the EU as long as you have your VE103 certificate of ownership. For more information on using your motability vehicle abroad, visit their website.
Wheelchair accessible vehicles are available to hire abroad – look for reputable companies, not just the cheapest one on offer.
Make a note of the measurements of your chair and the height at which you sit then send this information to the hire company to make sure the vehicle is suitable.
If you’re driving with hand controls, make sure you’re familiar with the type of controls in the car you’re hiring.
If you have any further questions about travelling, please contact our Outreach team at firstname.lastname@example.org or call them on 020 8875 1805. You can also visit the websites below for further information.
I was in formal education until 2014 when I graduated from University, and since then I have been unemployed. I studied Interdisciplinary Science for my Bachelors degree, and then Global Environmental Change for my Masters.
After I left university, I kind of felt that I didn’t want to work in the science sector, and I didn’t really know what I wanted to do. I also didn’t know what I physically could do because I was involved in a car crash in 1995 which left me with me a high level spinal cord injury.
In March this year, I attended the Back Up to Work course in London. I wanted to attend the course in order to help me improve my CV, help me identify my skills and get some tips about how to be more successful in applying for jobs. I thought the course was ideal because it was run by Back Up, and they know all about what it is like to be a disabled person looking for a job. They know the difficulties that are involved so they are in a great position to help people like me to overcome those difficulties.
The course was held at the head offices of Savills, a leading real estate company, in London. It was a two-day course packed with tips and exercises which helped us to build our CVs, identify our skills, practice interview techniques and gain confidence when applying for jobs.
As well as this, we got the chance to speak to current Savills employees about their job hunting experiences. This gave us a good opportunity to learn from people who had already been successful in the job market, and we could then improve our CVs based on their advice which was very useful.
I think the most valuable part of the course for me was the exercises where we had to identify what we had to offer employers. Before the course I had always struggled to think of what to put on my CV. But the exercises during the course highlighted that there were wide range of different skills and competencies that would be attractive to employers. Not just ’hard’ skills like computing, but also ’soft’ skills like teamwork or communication. So now that I have added a wider range of different skills on my CV, I think it will give me a better chance of being successful in the job hunt.
The Back Up to Work course also gave me a chance to experience what it’s like to be interviewed for a job. I’ve never had an interview before so it was a very valuable experience. We each did speed interviews which seemed to me like a interesting twist on speed dating. We got interviewed by 7 different employees, each lasting 7 minutes. Afterwards we were given feedback on how well we answered the questions and where we can improve, which was helpful.
Overall, the course has given me more confidence in applying for jobs as I now feel that my CV better reflects my skills and abilities. I now have good experience of what a job interview is like, so I feel better prepared for when I face a real one. I applied for two internships after the course, unfortunately I didn’t get one of them but I am still waiting to hear about the second one. So fingers crossed!
We recently spoke to Elaine Ball, a wheelchair dance sport instructor from WDSA UK, who runs a Kidderminster dance group called the Emotions. She spoke to us about the benefits of wheelchair dance and how it is open to both manual and power chair users.
Why did you decide to become a wheelchair dance instructor?
I ran mobility, movement and music classes and at an open day, I was approached by a young lady in a power chair who asked if I would let her join my class. Over the months I got to know her better and could tell this lady was very able to express herself through music. I investigated wheelchair dance and could see through training, I could also help others in my theatre company to dance and expand our performance.
What does a typical session include?
Sessions, this depends very much on who is coming as everyone has different abilities. Some like the ballroom dances and some prefer more freestyle. I include a warm up routine, we sometimes will learn a new routine or work on improving technique. Most of my members are also part of Wheely Different, the theatre company I run with my daughter Ellie Mouzer and we are in demand to appear around the district with performance pieces that include inclusive dance, so there is always something to practice. The most important aspect of my sessions are that everyone has fun, we like laughter, singing and anything that lifts the spirit.
What are the benefits of wheelchair dance?
I could write a book on the benefits. Learning routines aids mental function, improved self-worth, and the feel good effect is known to help release those endorphins.
As for socialising, a lot of the group are with me most when we prepare for shows and I can tell you we do a lot of socialising. We go out for meals, we go to shows, we went to the cinema but the lift broke and we ended being rescued by some handsome firemen!
I believe the confidence the group has gained through dance has had multiple knock on good effects. I know when we have performed anywhere, it has also changed peoples’ opinion of disability.
Is it open to everyone? Can people who use a power chair and have limited/no hand movement participate?
Everyone is welcome and majority of wheelchair users are in power chairs and its important to note that you don’t have to be in a wheelchair to take part. There are all kinds of ability levels in the group, some are helped by their partner who acts as a musical guide, others are in power chairs with restricted hand movement and some are in manual wheelchairs. There are all kinds of people who all contribute to the dance in whatever way is right for them.
If you would like to learn more about wheelchair sport dance, you can visit WDSA UK to find out about groups near you. You could also join us at the Back Up Ball – our biggest ever accessible party – which takes place November 18 2017 and put those new dance skills to good use!
An accident changed the life of Gillian Fowler, founder of charity BackStrong Trust, but she has been determined to live life as fully as possible. Gillian opens up about her own personal experience of a life-changing accident, adapting to her new normal, and managing chronic pain.
I am someone who has always loved the great outdoors, with hillwalking, skiing, golf and horse riding being important parts of my life from a young age. But in 2008, my life changed instantly due to a horse-riding accident near Aberdeen that resulted in my back being broken.
To this day, I have no memory of the accident. I do remember excruciating pain as I lay on the ground, and I knew instantly that I was badly injured. I just didn’t realise how bad.
My recovery has been a rollercoaster, as not only did I have an unstable break of L1 and questionable break of C5 in my neck, but my spine did not stabilise and strengthen as hoped. As a result, I had to undergo numerous major surgeries and deal with several spinal collapses. I also needed spinal injections to help with the pain, as well as years of physiotherapy. I do live with chronic pain but I refuse to give in to this. Instead, I have learned to adapt and live my life as fully as possible.
Getting home in 2008 was such a huge occasion, and my fighting spirit was fully ignited. My rehabilitation involved physio exercises that helped me to slowly building up from a few steps indoors, to managing walks outside.
The great outdoors have always been integral in my healing process (mentally and physically) as I have always found this to be where I am happiest – fresh air, beautiful countryside and being active.
It wasn’t until 2014, after yet another major spinal surgery, that I felt there was a small yet significant change to my back movement and my ability to walk more than a short distance. Such was my belief that I had just taken a giant leap forward that I decided to set myself the challenge of climbing Ben Nevis with my partner.
To many, this would seem like going from one extreme to another, but setting goals has been so important throughout my rehabilitation that it seemed this was the most natural progression (though of course, I could have aimed a bit lower – literally!).
Without a doubt, it was a tough climb but it was also a beautiful one with great weather too. As I can’t take weight on my back, my partner carried the rucksack with our supplies and clothing layers to the top – I was so grateful for him carrying all this! When we reached the summit, I was just over the moon. The mix of emotions was incredible – happiness, amazement at the scenery, back pain that I could somehow switch off my mind from, and sheer pride.
This walk was not only a fantastic personal achievement given the surgery I had only four months prior, but it showed me what was possible with a positive mental attitude.
As mentioned, a constant in my journey back to health is chronic pain as well as nerve pain both of which are quite literally debilitating. The cause of the pain as well as its trigger can differ greatly from one person to the next. But it’s only when you are able to learn how to manage the pain that you can really start to live your life fully.
I knew I did not want to be reliant on tablets either short term, and certainly not long term, so I started undertaking some online research into how to manage pain. There was so much information – too much information in fact! But what did get my attention was reading how increasing your activity levels, and taking part in no impact exercise could be a powerful way to manage the pain and help reduce medications.
Every day, I would try to increase the duration of my walks, or the number of walks in that day. The cycle of pain was very difficult to break because the exercise increased my levels of pain as the muscles worked harder to protect the areas of weakness. But I knew that was going to be the case, and I would be very careful to have rest, and monitor pain levels and recovery times.
Finally, after over three years, the ‘pain cycle barrier’ was broken and exercise actually decreased the pain. In fact, it would only worsen on days I was not active! But I still have to work hard to maintain this.
The only time I now take medication is when my back is suffering from inflammation, nerve pain and spasms, but even then I will delay taking any tablets until I feel it is absolutely necessary. But I certainly do have to be prepared to take them when away on long treks – and this is something I am completely happy to accept as I get so much enjoyment from being outdoors, even if it may result in pain!
Since 2014, I have grabbed the outdoor life with two hands, as well as been on a journey to bring hope to others who are in a similar situation to my own. I have shared my personal story to encourage and inspire people to achieve personal feats, with my ultimate climbing achievement being to summit Mt Kilimanjaro in 2016 to mark the 8th anniversary of my accident and fundraise for my charity, BackStrong Trust.
Although I live with chronic pain and the limitations due to my injuries, I have adapted to what is my new ‘normal’, and I am very much supported by my family and friends.
Everyone has their own journey through life, and what is clear is that it can all become overpowering and daunting when faced with life-changing situations. We also struggle to discuss the mental health issues that may occur. But my advice is that to take a deep breath, try to break down the issues into chunk sizes, and tackle them one by one, as well as asking for help when needed. As I say in the mountains, “shuffle shuffle” – even if you’re taking baby steps, you’re still moving forward. Stay strong. #ShuffleShuffle
BackStrong Trust is a Scottish charity which provides information and support to people with a spinal cord injury who are able to walk. Back Up also supports those who can walk through mentoring and our residential course called Next Steps which covers issues like neuropathic pain and fatigue.