Nothing About Us Without Us | Louise Wright on the ISCOS conference

Nothing About Us Without Us | Louise Wright on the ISCOS conference

Our CEO, Louise Wright, recently attended the annual ISCOS conference in Vienna with Will Clark, a volunteer and service user with a high level injury. In her blog, she reflects on how organisations need to support everyone affected by spinal cord injury


‘Nothing about us without us’ is a helpful phrase that helps define our recent experience at the International Spinal Cord Society (ISCOS) held last month in Vienna.  By ‘our experience’ I mean that of Will Clark, a fabulous Back Up volunteer with a C4 spinal cord injury, and myself.

Over the years that I have been lucky enough to attend this interesting and informative conference, I’ve noticed two things:

  • The lack of people with spinal cord injury in attendance
  • No power chair users – anywhere!

As I listened and watched presentation after presentation, I saw plenty of graphs, pictures of the spine, photographs of the odd young person in a manual wheelchair, but there seemed to be a whole raft of people missing.  Where were the people who walk?  What about people who use a ventilator and older people?

I spoke to many organisations, like Back Up, doing fantastic work on the ground in countries like Sweden, Greece, France and Norway; but the answer was always the same.  People with high level injuries don’t want to use our services, or it’s too complicated to include people with these needs, or too expensive – or all of the above.

At Back Up, I’m proud to say we always prioritise people who are most likely to struggle to get the support they need. 

This means that if you have a spinal cord injury and you use a power chair, or have high care needs, we will go the extra mile to ensure you are properly included.  You want to go skiing? We have courses for people with all levels of injury. What If need help going back to school?  We’ll be there to help you make that transition. What if you don’t use a wheelchair and can walk? We have someone you can talk to in a similar situation.  We pride ourselves on being an organisation for everyone affected by spinal cord injury. And if we can’t provide support, who will? We need to set the standard for others to follow.

And so, our plan for someone with a high level injury to present at ISCOS was formed.  We had a false start in 2015, when our presentation wasn’t accepted. But in 2016 we got the thumbs up to present and Will Clark accepted the challenge on our behalf.

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Will keeps telling me he’s still new to the world of spinal cord injury, having had his injury in 2012.  But, he’s packed a lot in and was able to share his breadth of experience to a few hundred people on the first day of the conference.

Will talked with passion about the experience of being fully included – it made him feel like the world was his oyster and that, with creativity and some planning, he could do anything he set his mind to.

The audience, made up from similar organisations and health professionals, started to think through what inclusion could look like for them.  We’ve since been in touch with organisations in Germany, Sweden, Norway and Greece.  Will and I hope that his speech will mean that people with high level injuries are no longer left out by the very organisations that are best placed to support them across Europe and the Americas.

Will’s speech was a moving and insightful account of life with a high level injury – something I could never convey. I opened the door, but it was Will who went through it and made the difference.  Thank you Will.  Louise

Lucy Duncombe: Volunteering at Back Up’s Youth Advisory Group Weekend

Lucy Duncombe: Volunteering at Back Up’s Youth Advisory Group Weekend

This month of our 30th anniversary year, we are turning the spotlight on the amazing children and young people affected by spinal cord injury who help us shape and deliver our services. 

We are delighted that Active Assistance is the official sponsor of the children & young people month. They support people with complex and continuing health care needs. Their philosophy is based on the principles that each person should be enabled to live a fulfilling life to their own potential. 

Here, Lucy Duncombe, Clinical Development Manager at Active Assistance, tells a bit more about her experience volunteering at one of Back Up’s Youth Advisory Group training weekends.


Why did you decide to volunteer with Back Up on the Youth Advisory Group training weekend?

I have been privileged to work with young people with spinal cord injury for nine years now and always wanted to work with Back Up. Family commitments always got in the way but this year I promised I would commit to one event. I did not expect the Back Up bug would bite me! Instead I have joined Back Up twice this year and I have already put my name down for the Youth Advisory Group weekend in 2017.

What did you get out of the experience?   

My mind was blown! I have been a children’s nurse since 2003. In my “day job” at Active Assistance, I get to meet amazing children and young people with complex health needs or disabilities for whom every day is a challenge, but the Youth Advisory Group took it to another level.

genuinely wasn’t prepared for the amazing energy at the weekends – proof that disability isn’t a deal breaker, it’s more a change in the scenery.

My highlight will always be Beth and I performing our own “special” rendition of the classic of Fresh Prince of Bell Air to the group. We thought we were epic….alas they were all speechless. Sadly neither of us have a record contract to date!

What benefits do you see young people getting from this experience?

Life as a young person is a challenge. So many decisions, responsibilities and pressures. The Youth Advisory Group provides an open and honest forum for young people  – a chance to be part of something more than your injury. It’s  all about you and what you want to share with the group, whether that’s rugby, graphic design, wheelies or tops tips on GCSE revision.

It’s a chance to be with people on a similar journey to you, to talk about what really matters to you.

What would you say to other personal assistants who are thinking of doing something similar?

When are you free?! Genuinely the best 2 weekends of 2016. As a mum, it meant being away from my family for a weekend but when I got back home, I asked my 5-year-old how he felt about me being away. He said:

“If it makes them happy then you must feel happy too”.

I can’t say it any better myself. I gave a little but I feel I got so much more.

Top tips on getting the most out of the weekend or other Back Up courses to other PAs?

Just be yourself, come with energy and enthusiasm, and Back Up will provide the rest. We cooked, baked and laughed. Each weekend, I was supported by two Back Up team members and they were a delight to work with. The energy and passion of Back Up shines through each and every member of their team.

Inspired by Lucy’s story? Volunteer as a nurse or personal assistant on one of our courses. Find out more information here

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.

Brian Sirrel: Our oldest wheelchair skills trainer

Brian Sirrel: Our oldest wheelchair skills trainer

Getting on the bus, going to the local shops or the pub, playing with your grandchildren in the park, or just safely carrying a cup of tea from the kitchen to your living room – that’s what wheelchair skills training is all about. Back Up’s wheelchair skills training sessions are delivered at all 11 spinal cord injury centres in the UK and on all our residential courses.

The sessions are led by volunteers who have personally experienced spinal cord injury, covering everything from pushing technique and back-wheel balancing to going up and down the stairs. Over 40 people of different ages and backgrounds volunteer their time to teach these vital skills to both manual and powered wheelchair users.

Brian Sirrel, a former football referee, was left permanently paralysed by a neurological condition. Now 80 years old, he is our oldest wheelchair skills trainer.

Brian first got involved with Back Up during his rehabilitation at Oswestry spinal cord injury centre. “I was told that I wouldn’t walk again so my physiotherapist told me to go to one of Back Up’s wheelchair skills sessions so I could learn how to use my wheelchair correctly.”

According to research, 87% of people who attend a wheelchair skills training session feel more confident and independent. Brian says Back Up helped him and his wife to keep on living their lives.

“Back Up has given me confidence and has given me the ability to manage a wheelchair on my own.”

After three sessions, one of Back Up’s wheelchair skills trainers asked Brian if he would like to attend a wheelchair skills training weekend at Calvert Trust. He didn’t think twice about it and immediately decided to go. “My wife and I went up there and that’s when we realised how much Back Up was doing. Not only what it did for me but what it did for other people who are going through particularly tough times.”

Brian officially started to volunteer as a wheelchair skills trainer in 2008 and he hasn’t looked back since. Since he started, Brian has met young and older people with completely different needs. He says it’s important for wheelchair skills trainers to adapt to all age groups. “Even though people have different abilities, they can learn skills to enable them to lead more independent lives,” Brian says.

“Most newly injured people using a wheelchair for the first time want to be more self sufficient, more independent and more confident. And they can all those things with the ability and knowledge of the wheelchair skills trainers.”

As an experienced wheelchair skills trainer, Brian has lots of tips to share with fellow wheelchair users who need support: “Do listen to what you’ve been told, watch how the wheelchair skills trainers react to different hazards and look at how they manage to get over them.”

For Brian, age is just a number. Over the coming years, he wants to keep on supporting Back Up and people whose lives have been changed after spinal cord injury. “My main ambition is to keep on helping others the best I can, to show them age is no barrier to whatever you want to do.”

Were you inspired by Brian’s story? Volunteer as a wheelchair skills trainer

Calvert Trust | Supporting Back Up since 1989

Calvert Trust | Supporting Back Up since 1989

In 2006, an accident changed Mary’s life forever. She was left permanently paralysed from the neck down. Life with spinal cord injury is hard but, with the right support, people like Mary can rebuild their confidence and independence.

A few years after her accident, Mary wanted to connect with people in a similar situation. That’s when she decided to get in touch with Back Up.

“I had my 50th birthday and I jokingly said to my family that I would a Back Up course when I came of age,” Mary said. The joke became a reality when Mary applied to go on a multi activity course in the Lake District.

Multi activity courses have been taking place at the Calvert Trust centres in Exmoor and the Lake District since 1989. Calvert Trust instructors are experts at being able to adapt a whole range of outdoor activities, so that people with spinal cord injury can participate as independently as possible.

“When I applied, I was anxious and I had never been away from home on my own since my injury,” Mary said.

During the course, Mary found it helpful to share experiences with volunteers and course participants who also lived with spinal cord injury.

Lake District Calvert Trust have hosted more than 70 courses that have helped over 350 people like Mary to regain their zest for life. “I did things doing the course that I never thought I would do again and it made me more optimistic about the future,” Mary said.

Some of the outdoor activities include indoor climbing, abseiling, kayaking, hand cycling and horse riding. Participants also have the opportunity to practise their wheelchair skills with Back Up volunteers.

“Everything on the course was brilliant and I had a fantastic week,” Mary said. “I got a lot out of the wheelchair skills training and I have been practising some of the tips.”

Mary’s favourite activity was to climb Latrigg, a hill that she had climbed before her injury. “It was exhilarating and I was crying tears of joy,” Mary said. “The view at the top was breath taking.”

The course at Calvert Trust helped Mary to feel more positive about her future. “I would really encourage everyone living with spinal cord injury to go on a Back Up course,” Mary said. “You won’t regret it.”

Partnering with organisations like Calvert Trust allows Back Up to help hundreds of people with spinal cord injury.

“We could not run our life changing courses without the support of organisations like Calvert Trust. Their teams including activity instructors, accommodation and back office staff ensure that people with spinal cord injury gain maximum benefit and challenge perceptions of what is possible,” Ally, Back Up Courses Manager, said.

Visit our website for more information about our courses or volunteer your time as a Back Up buddy

 

Birmingham Children’s Hospital | Joe’s story

Birmingham Children’s Hospital | Joe’s story

Joe had dreams of becoming a rock star but everything changed four years ago. He a blood clot on his spinal cord, which caused a stroke. He almost died.

After the stroke, Joe spent 15 months in Birmingham Children’s Hospital, a UK paediatric centre offering care to 90,000 children and young people across the country every year. During his rehabilitation, Joe felt depressed and he was struggling to cope.

Joe’s mum, Karen, desperately wanted to help her son. In 2012, she got in touch with Back Up after seeing our BBC Lifeline appeal on TV. She asked about the support we could offer Joe.

One of Back Up’s volunteers visited Joe while he was in hospital. During the visit, they both talked about returning to school and how having a care team could help Joe’s independence.

“Meeting Back Up made me realise that I can still go out and watch gigs,” Joe said. Since meeting Back Up, Joe has attended a Back Up course for children and young people, a wheelchair skills training sessions and has become a member of our youth advisory group. He has also won Young Person of the Year at the annual Back Up Ball.

After being discharged, Joe returned to Birmingham Children’s Hospital as an outpatient. However, this time he was feeling happier and more positive about the future. The staff at the hospital saw the difference Back Up had made to Joe’s life, so they asked us to work with them to organise an event for other children living with spinal cord injury and their families.

As a result, we collaborated with the hospital to deliver a Family Fun Day. During the day, we delivered wheelchair skills training and Back Up young volunteers were encouraged to share their experiences of living with spinal cord injury.

“By meeting others in a similar situation, young people realise they are not alone, they make new friends, build their support networks and have fun. The Family Fun Day couldn’t have happened without the hospital staff who encouraged families to attend, organised the space and welcomed Back Up to run sessions,” Beth, Back Up Under 18s Manager, said.

“The event at Birmingham Children’s Hospital was important to me because they were a big part in helping me get to where I am today. I wanted to give something back,” Joe said.

Hospital staff particularly liked the session delivered by Ben, one of Back Up’s Youth Advisors. Trauma and Rehabilitation Coordinator at Birmingham Children’s Hospital said: “The openness and honesty was appreciated by everyone. They were full of enthusiasm and we were amazed by the way they encouraged even the more reluctant children into taking part.”

The next Family Fun Day at Birmingham Children’s Hospital is planned for Sunday, May 22 2016 and is open to any children or young people with spinal cord injury.

Get in touch with Beth (beth@backuptrust.org.uk) for more information or visit our website to find out about our services for children and young people.

 

 

“My life turned on its head after my brother’s injury”

“My life turned on its head after my brother’s injury”

We are turning the spotlight on family members of people with spinal cord injury (SCI) and how Back Up supports them. Peter has written about his experiences of having a brother with SCI and hopes that any other siblings reading this may find some comfort, or at least fellow feeling in the words. 


I was 15 years old when my brother broke his neck. His life, my life, our family’s life completely turned on its head in a matter of seconds.

Before my brother’s accident, in terms of our relationship, we were just as you’d expect two teenagers to be: constantly ribbing each other, occasionally combining verbal barbs with whacks around the head. We used to play a game where you’d try to spot certain types of car and whoever was first to notice one got to punch the other. Our headmistress used to own one such car and just as we rounded the corner every day John would always leap into the air to see over the school wall and come crashing down, fist bunched and grinning. But, in spite of the sometimes quite literal bruises, we still walked to school together, laughing and joking.

We were close, our whole family was close. And we were happy. Our holidays were mostly spent travelling or huddled around the dining room table playing cards, board games or discussing the news of the day. Lives aren’t perfect, but ours was pretty golden – the biggest worries were exams and desperately trying to remember if anyone had played the Ace of Hearts.

All of that changed one December when, driving south to see family, we hit a patch of black ice and were pitched from the road. Three of us walked from the car, one was carried out and has not walked again. I find it hard to describe even now the horror of those first few days. Never in my life have I felt more desperate to help someone and yet at the same time so powerless. One moment remains etched on my mind: we were in the ICU (I don’t remember what time of day, it was always dark in there).

At this point John still wasn’t able to breathe on his own, a filthy great tube shoved down his throat served to keep his lungs inflating. Obviously he couldn’t speak, but on this occasion he was trying to. He was mouthing something, but it was hard to make out because of the tube. He was growing increasingly desperate and he started to cry, tears leaking soundlessly down his face.

At that moment I wanted to break and remembering it I still want to weep. He was trying to mouth “water”.

Because of that feeling of powerlessness I suppose my first reaction outside of the hospital was to make sure that everyone else was okay. I hid my tears from my parents as much as I could (I felt they had enough to be going on with) and I tried as much as I could to help out. The brave face was exhausting but at the time, in quite a warped way, I got myself into the mind-set of thinking this was helping – by consciously hiding the feelings I could ignore them and, if I ignored them, I didn’t have to feel their pain and maybe they would go away.

Trust me when I tell you that this didn’t and doesn’t work. All it did was mean that I didn’t let out my feelings in a controlled way: I’d break down, rather than talk things through, and often I’d do it alone. Crying alone is not a pleasant experience, you want somebody to hold you, but my pretense that I was okay meant someone wasn’t always there.

I’ll be honest, the first months after the accident were pretty miserable for me. I was afraid that doing the things I used to enjoy, my rugby, my drama for two equally twisted reasons: first that doing things John used to enjoy would somehow make him feel “more disabled” and second that enjoying myself was somehow a betrayal of everything that John was having to experience – if he was in pain, I had to be in pain too.

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