Urology Awareness Week: flying tips for people with a spinal cord injury

Urology Awareness Week: flying tips for people with a spinal cord injury

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.


Katie’s story: Life as a young person with spinal cord injury

Katie’s story: Life as a young person with spinal cord injury

Research found that adults with spinal cord injury who were injured in childhood are less likely to live independently. However, with the right support, young people can live happy and fulfilling lives. Here, Katie, one of Back Up’s youth advisors, answers to a few questions about challenges she faces and how Back Up has helped her to adapt to life with spinal cord injury. 

As a young person living with spinal cord injury, can you explain what independence means to you? 

It means doing things on my own like anyone else my age would do and showing that I’m not incapable because I’m in a wheelchair.

What is the biggest challenge you face in order to be fully independent?

I experience a lot of pain and fatigue. I struggle sometimes to get around on my own and I need someone to push my wheelchair, carry my things or drive me places. I also experience anxiety – a lot of the time I’m too anxious to do something without someone there or doing it for me.

Do you think your friends (without spinal cord injury) are more independent compared to you?

Yes, I think they are. They tend to travel further afield and do more things than I do. When planning to go away, they seem to be okay to travel alone, whereas for me it takes a lot of planning and help from parents to ensure everything is there.

How has Back Up helped you to rebuild your independence?

Back Up has really helped me to regain independence. On my first Back Up course, I relied on my parents for everything. I didn’t do anything on my own. Within the week, I learned to do more by myself. When I came home my parents were amazed at the change in me. Since then, I have gone on weekend with Back Up, volunteered and stayed in places on my own. Without Back Up, I wouldn’t have done any of that.

What are your plans for the future?

I’m not really sure what my plans are. But I want to work with children or in a setting where I can help other people, as well as continuing to volunteer.

Back Up is the only charity with dedicated services for children and young people with spinal cord injury. You can find out more about our work here

How London to Paris ride helped Siby to rebuild independence

How London to Paris ride helped Siby to rebuild independence

It was 1994 when a motorcycle accident changed Siby’s life overnight. She was young, confident and busy. But the accident left her broken.

Siby was at Stanmore spinal cord injury centre for three months. She said: “My mum spent a lot of time with me, both in hospital and afterwards. She had just retired.”

Just before Christmas, Siby moved back home. But life wasn’t the same. Nine months after the injury, Siby heard about Back Up and decided to go on a water ski course at Heron Lake.

“Apart from having a great time, I realised there was life, fun and adrenaline to be had even as a wheelchair user.”

After the water skiing, Siby went on a Back Up skiing course to Colorado, where she fell in love with the sport. “Skiing definitely boosted my confidence,” she said. “I had to get myself together quickly for my kids and Back Up did me the world of good.”

Recently, Siby decided to give back to Back Up by taking on a London to Paris cycle ride challenge. “The London to Paris came at a great time,” she said. “I needed something new to do and it gave me the kick in the bum to exercise.”


She said the best moment of London to Paris cycle challenge was experiencing the beautiful countryside, and realising she had completed it when arriving at the Eiffel Tower.

For Siby, the London to Paris cycle challenge was more than just a fun event. It also helped her to improve her independence by meeting new people and doing something outside her comfort zone.

“It’s a total confidence booster and shows there is life after spinal cord injury and being in a wheelchair is not the end.”

Siby would encourage other people like her to take on the challenge for Back Up, saying that the staff and people taking part are “fabulous”.

If you want to take on a challenge like Siby then why not join our Parallel London team this year?

Jacques’s story: Being able to walk

Jacques’s story: Being able to walk

When most people think about spinal cord injury, they imagine someone in a wheelchair. But spinal cord injury affects everyone differently. Some people are able to walk, either unaided or with sticks, and don’t use a wheelchair, or might feel the need to use it some of the time.

Spinal cord injured people who can walk frequently experience a lack of recognition and understanding from others. Feelings of guilt are common and many feel excluded from the spinal cord injured community.

Jacques is one of the many people living with spinal cord injury who can walk. He became injured while doing his national service for the South African Army.

“I was about one month into it when I went with a group of friends on a fishing trip. It was on this trip that I was involved in a freak accident where I fell off a Land Rover into a sitting position, which resulted in me fracturing my pelvis and crushing my spine,” Jacques says.

Jacques’s injury was classed as incomplete, which means he has sensation and movement below his injury level. For Jacques this means he is able to walk.

During his rehabilitation, feelings of guilt started to take over. He felt guilty not only because he was able to walk while other patients couldn’t, but also because people expected him to walk more than he was actually able to.

“In some ways it made me feel like I did not fit in with other patients in the hospitals.”

Research from Back Up found that a number of people who can walk experience pain and fatigue and have difficulties managing it, impacting on their day-to-day lives. “My walking was and to this day is quite slow and unsteady. I have no balance when standing up so I need to use two crutches to stand and walk,” Jacques says.

“Walking is also quite painful for me after short distances and finding a place to sit down becomes a priority so I opted to use a wheelchair most of the time.”

Jacques’s experience meant he was invited to join a working group with other people who can walk to develop a brand new Back Up course – Next Steps. This course will help people like Jacques to rebuild confidence and independence.

It will take place over a long weekend and it will cover life skills, such as accessing public transport, making a meal and getting around a busy city.

“As a person who is able to walk there are always questions around why you don’t do certain things and some people think you are being lazy without knowing all the other things that happen to people with spinal cord injury.”

The course will also give people the opportunity to share experiences and talk about different issues, such as ‘invisible disability’, pain, fatigue management and guilt.

Jacques has faced many challenges because of his injury, but he has also made the best out of life. “Since my injury I have travelled to many different places in the world and have tried so many different activities, some that I never thought I would be able to do due to living with spinal cord injury,” he says.

Jacques hopes that this new course will help people in a similar situation to revive their zest for life. “This course is all about what you want to learn and what would improve your independence. The aim is to give you the confidence to lead a more active life,” he says.

Do you have a spinal cord injury and are able to walk? Apply now for our Next Steps course taking place in September 2017.

Having a daughter with a spinal cord injury

Having a daughter with a spinal cord injury

This month of our anniversary year we are turning the spotlight on family members of people with spinal cord injury and how Back Up supports them.

Just one week after Mark’s daughter Sarah bought her first car and started a new job, a sudden illness left her permanently paralysed from the shoulders down. “We were a normal everyday family,” Mark remembers. “Now I ask myself: what’s normal?”

Beforehand, Mark and his family weren’t aware of the impact a spinal cord injury could have on someone’s life. “We only knew what we saw on television and in the papers,” he says.  As soon as the injury happened, the family felt overwhelmed.

Quickly, they had to make radical changes to their every day lives. Caroline, Mark’s wife, had to give up her job to move to the north of England, where their daughter was hospitalised.. “For a year I travelled every Thursday to join them and returned home on Sunday nights,” Mark says. “The family was split up.”

Sarah’s injury changed things forever. “Our lives will never be the same, we will have to adjust, we’re fighting with life,” Mark says. “There’s a lot going on at the moment and we can only cope with one thing at the time. Our daughter is our priority no matter what.”

According to research, half of parents of children with a  spinal cord injury  feel a sense of responsibility for the injury. “We feel guilty all the time,” Mark says.  “We can have a life and at the moment our daughter has nothing except the front room of our house, which I call a prison cell.”

When Sarah was discharged from hospital, the family planned her return home with a care agency. They had to adapt the house to Sarah’s needs and arrange for a care team to sleep and live in the house full time. “Having carers now living in our current house adds more pressure to the family situation, The house is a different place now but we will survive one way or another,” Mark says.

The devastating experience of spinal cord injury often causes feelings of depression and anger amongst family members. Research found that 41% of mothers and 36% of fathers are diagnosed with Post Traumatic Stress Disorder.

Continue reading “Having a daughter with a spinal cord injury”

Christina: “I definitely feel guilty”

Christina: “I definitely feel guilty”

This month of our anniversary year we are turning the spotlight on family members of people with spinal cord injury and how Back Up supports them.

Four years ago, Christina got a call from her mum saying that her brother John was injured. At first, Christina’s mum said it was just a broken leg, so as not to worry her, but later that day she was told that her brother had broken his neck. “I remember thinking he was going to die,” Christina says.

“The initial two days were a blur and I think I was just on auto pilot,” Christina says. She remembers going to Newcastle, where her brother was hospitalised, to see him in the Intensive Therapy Unit (ITU). “It was terrifying,” she says.

Three days after the accident, Christina, who was 24 at the time, had her graduation ceremony. “The venue was opposite to the Royal Victoria Infirmary, where John was, so it was all very surreal,” she says.

The family didn’t know about spinal cord injury and what the condition meant to her brother’s future. Christina got most of the information online and from the doctors at the hospital. “I found all doctors were very vague,” she says. “I understand they had to be as they can’t make promises, and a lot of the outcome they genuinely can’t predict, but I struggled with this.”

At the beginning, the family was just glad that John was alive and they didn’t think too much about the impact John’s injury would have on their family dynamic.

“He lived at home for a long time after the accident and he moved out into the same village as my parents, so seeing and helping him with things does take up a lot of my parents’ time,” Christina says.

As most siblings of people with spinal cord injury, Christina felt ‘a bit isolated’ because her parents spent more time taking care of her brother. “I’ve always been more independent than my brother, and I know he needs them much more than I do right now, so I don’t blame them for how things are or hold it against them, but that doesn’t mean I don’t feel sad that things aren’t how they were before,” Christina says.

Before her brother’s injury, they were a close family who used to go on family holidays and spent Christmas together. Things are very different now. “We do very little without my brother, which probably wasn’t the case before,” Christina says. “I feel like now every decision runs through the filter of ‘can John do that?’”

Having a brother with a spinal cord injury causes psychological distress. Feeling depressed, isolated and guilty is common amongst siblings. “I definitely feel guilty about doing things my brother can’t do,” Christina says. “I’m very aware that when he finds out that people are doing things he would like to do, it upsets him.”

Continue reading “Christina: “I definitely feel guilty””

Totalskidskolan: 19 years of supporting Back Up

Totalskidskolan: 19 years of supporting Back Up

Our friends at Totalskidskolan ran Back Up’s first ski course in 1997. Since then, they have run a further 45 courses, supporting over 250 participants with high level spinal cod injury, including a number of permanently ventilated participants.
They have helped us run five youth ski courses and an additional 16 ski kart taster days in Bracknell, where, each year, at least two of their instructors would come over to give people the opportunity to try ski karting.

“Thank you Back Up so far the best week of my life since I broke my neck.”

Ben Wimbush

The ski school, which is celebrating its 30th anniversary in 2017, is full of enthusiasm, passion and knowledge. They work with a range of people with different disabilities and go above and beyond to make this ski courses happen.

Some years ago, they were happy to introduce a night ski on the adult ski course, enabling participants to see the Northern Lights and experience a different dimension to skiing.

Last but not least, they provide one-on-one instruction to all participants, helping some to obtain a ski licence.

We can’t thank them enough for their support and kindness.