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 email@example.com or call them on 020 8875 1805. You can also visit the websites below for further information.
For Urology Awareness week, we want to share 5 tips for people with a spinal cord injury when they are travelling by plane.
It’s good to bring catheters in your hand luggage and your checked baggage so you’re covered for all eventualities. Don’t forget to also bring all your medications and a prescription in case they query you during security.
Try to organise your bowel routine around your flight and make sure you’ve been to the toilet before you board to drain your catheter. Sometimes it can take longer to board than expected so it’s best to go just beforehand. It’s also worth checking that there will be an aisle chair on the plane too, should you need it.
Once you’ve boarded the plane, take on liquids but just be aware of what you’re drinking. Anything that contains caffeine is a diuretic and should be avoided if you’re worried about needing to go to the loo too much
You shouldn’t assume that you’ll be able to use the toilet on board so have a plan of action. And even if you can transfer independently, airplane toilets can be tricky to manoeuvre in. One of service users suggests, ‘I like to bring a leg or a night bag with me because often airplane toilets are too small to use.’ An empty bottle can be useful to drain your catheter into and sometimes planes provide a blanket that will allow you to do it discreetly. If you’re a high level injury, you can discuss your plan of action with your PA prior to flying.
If you’re going on a long haul flight then it’s advisable to bring a pressure relieving cushion to avoid getting marks. Loose clothing can also help avoid pressure sores.
If you would like discuss your concerns around flying, get in touch with our Outreach & Support team on 020 8875 6723. They can refer you to people who can discuss your catheter requirements and any other questions you may have.
At the very core of Back Up’s mission is the desire to build confidence and independence through fun and peer support, an ethos shared by Dave Shraga, who sustained a spinal cord injury as a 21-year-old young man.
When Dave organised a three month trip to Goa, India, to carry out research into local community media projects, he involved his Origin personal assistant (PA), Nic, in the planning. This was to be an epic adventure that took them both out of their comfort zones and into a challenge that put independence to the test.
The potential for ‘tummy trouble’ due to changes in food, the limited services for disabled people and complex travel arrangements were all factored into the plan.
Dave’s philosophy is that disabled people can do the most amazing things if they really want to. But he acknowledges that sometimes disabled people have to be willing to accept help and recognise this is not a compromise to their independence. He said:
“Independence is not necessarily about doing everything alone, often the greatest goals are achieved working with the people around you. Many of the skills I used in Goa, I learned from people I met through Back Up.
During the whole trip people were always willing to support me. Firstly, Regain provided me with equipment I needed to cope out there and when I got to Goa the organisation, Video Volunteers, built ramps so I could get in to the office. People also carried me in and out of planes, buses and cars.”
Unfortunately, Dave became quite poorly when in Goa, making the trip to India even more challenging. But undaunted, he said: “To make a trip like this prepare yourself, trust your PA, understand the challenge and if there is a problem, don’t panic! That’s what the back-up plan and good insurance is for – to help if you need it.”