Leonie and Lucille’s story: Our Family

Leonie and Lucille’s story: Our Family

We were introduced to Back Up during our first whirlwind stay at the National Spinal Injuries Centre, Stoke Mandeville. My mind was unable to process much of that upheaval period so soon after the accident despite the repetition and familiarity of each day. So whilst we appreciated Wacky Wednesday fun – a monthly cooking evening organised by Back Up for the children on the ward and their families – we weren’t really sure what to say or enquire about and it all sort of passed us by. The leaflets were carefully pocketed however, because of the enticing Skiing and Multi Activity courses they described, that had planted precious seeds for the future.

Following Lucille’s rehabilitation, the hospital teaching staff were quite persistent about contacting Back Up to assist Lucille as she settled back into school. During her first weeks, Lucille was very uncomfortable with being such a celebrity and being asked so many questions about her wheelchair and spinal cord injury. But Sophie, who has a spinal cord injury and is one of Back Up’s School Advocates, came in to do a presentation for staff and students. It served wonderfully to explain the key points about Lucille’s injury and stem the flow of curiosity. Even more importantly, it established wheelchair etiquette. Lucille will forever thank Sophie for stopping people from trying to push her chair and always offering their help. Lucille is glad to be able to ask for help when she needs it, exactly like everybody else.

There was a key moment for me during the presentation when Sophie mentioned the statistic about the number of people with spinal cord injury living in the UK. At that very moment, Lucille cheered. She instinctively regarded it as a positive thing that there were more people like her. It was almost like a club she was proud to be a member of – ignoring any thought of whether she’d rather not be in it, as that’s not the point!

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Leonie & Lucille

There is no purpose in dwelling on an alternative life, but it’s very important to embrace the good of what is in yours, including Back Up solidarity. That cheer taught me so much about acceptance, and that instant bond with Sophie sealed the deal for Lucille – she now associates very good things and friends with Back Up and is always excited to hear of upcoming events like the Back Up Festival coming this August. She asked me, “will there be dancing?”

I was a little ahead of Lucille in that wholehearted endorsement for Back Up, as shortly before her return to school, I had contacted the Family Mentoring service when feeling quite desperate. The recommendation had been made several times, but with my social graces still shattered, communication was pretty minimal, and the strength to reach out to new people eluded me. My own grief for our more carefree life was still overwhelming. I felt so lost in the new world of ordering unknown equipment, dealing with bodily functions, needing to be forever vigilant and yet acutely aware this was now our everyday life. I knew we would cope, we just needed some happy times ahead as a family, but even a motivating thought like a family holiday brought its own worries and questions: How would we travel?

I contacted Charlie, Back Up’s Family Mentoring Coordinator, but was a bit stumped by her request for a focus point and stipulation of ten sessions. Did I have a coherent question to ask a mentor? Didn’t I simply want to be helped? Would mentoring mean tears and stories of woe? I felt confused, but somehow, thankfully, I instinctively trusted Charlie and the process.

I was paired up with Sarah and firstly there was an exchange of stories. I did wonder at that point if we had shared enough similar experiences: shouldn’t she have a daughter injured at the same age, the same way and be able to relate to everything I was wondering about? It turned out the key was humanity, kindness and understanding, immeasurably enhanced by valuable knowledge, experience and practical advice.

I can honestly say I owe Sarah more than she will ever know. Through the conversations with her and her excellent guidance, I was able to transform into a manager of my daughter’s care needs. I use that word on purpose, as it exemplifies the components needed: planning, resources, time allocation, but carefully carried out, as Lucille is of course primarily my daughter and doesn’t need a manager – rather it’s her care requirements caused by her injury that need managing. Sarah also recommended lists for everything: going out, travelling, hospital stays, supplies, medication, routines – everything! Those lists became a picture-filled routines booklet that is such a helpful guide to anyone working or interacting with Lucille, not least for Lucille herself: she knows all about herself, and has an easy way to explain it to anyone who needs to know. By organising it all, it made it possible to delegate and – more importantly – to distinguish between my personal assistant role and my role as a mother.

What’s also very meaningful is the confidence this direction has given all of us for the future. Lucille can already see how the booklet maps out her routines, giving her a sense of ownership while being assisted. It was very powerful for illustrating to the school that complex balance of what Lucille can do, what she can try, and what she would like to learn next – no wrapping in cotton wool in her peer environment when not needed! I often wish the booklet could automatically update, but other times it’s great to be so organic and know that a spirited girl can never be summarised in eight A4 pages.

What really blossomed throughout the mentoring sessions was my confidence. I write that cautiously, as I don’t want to sound pompous, but I trust that those reading this article will understand how frightening the plunge into the spinal cord injury world is at first and that everyone in it has a metamorphosis ahead. By everyone I not only mean the injured person, but also their family and friends. You don’t need to measure or compare the magnitude of each person’s adaptation, just know that everyone has their own individual challenges.

We are very lucky to have Back Up, who put everything in place for those metamorphoses to be positive. I guess the difficult part is timing as it’s such a personal journey. Lucille identified a personal champion in Sophie, and I think that bond to the charity will only grow for all of us. I wasn’t ready for any of it during the Wacky Wednesdays, but still appreciated that Back Up was there at the beginning. They gave us the first nudge, the first sense of being in this together, of not being alone. Wanting to be part of it just took us a while.

To find out more about Family Mentoring click here or you can contact our Family Mentoring Coordinator Charlie (Charlief@backuptrust.org.uk) or ring her on 020 8875 6763. If you want to learn more about our services for children and young people click here or email our U18s Services Manager Ella (Ella@backuptrust.org.uk) or call her on 020 8875 6764.

Bethany’s story: Throwing my own event

Bethany’s story: Throwing my own event

I first got involved with Back Up when I was at Oswestry spinal injury unit. They told me about the charity and the different courses they do, including the under 13s course. I ended up going on that course and absolutely loved it. I’ve been involved with Back up ever since!

The work of the charity is important to me for a few different reasons. It has really helped me gain more confidence and improve my wheelchair skills, which has been really helpful in increasing my independence. It is also important to me because I get to meet lots of other people and have opportunities to try new things.

I’ve even become a member of the youth advisory group and get to be involved in planning what Back Up offers other young people like me. I also recently group led one of the under 13s courses which was so much fun. It’s great to be able to help other young people develop and I can pass on things that I’ve learnt to them.

Back Up Trust
Photo by Guy Harrop. Bethany and her mum, Dawn.

I decided I wanted to do something to say thank you to Back Up for all the help they’ve given me. I was inspired to create my own event was because I wanted to raise money for Back Up doing something that was relevant to me and that I love doing. I have done a lot of swimming competitions in the past, so I thought it would be nice to do a sponsored swim and get my school involved!

I’d definitely recommend creating your own event to other people as it gives you the freedom to choose what you want to do and allows you to show people what it is you love doing, and then prove to them that you can actually do it.

If you’d like to hold your own fundraising event, you can click here to find out more or email Kat (katherine@backuptrust.org.uk) to discuss what you’d like to do.

Wacky Wednesdays: Working with National Spinal Injuries Centre in Stoke Mandeville

Wacky Wednesdays: Working with National Spinal Injuries Centre in Stoke Mandeville

As you’ve no doubt heard, this year is Back Up’s 30th anniversary. It’s a special year for us and we’re taking the opportunity to focus on a different area of the charity’s work each month.

This month, we are focusing on the work we do with children and young people and in particular the work we do with St Francis ward at the National Spinal Injuries Centre in Stoke Mandeville, Aylesbury.

We’ve been fortunate enough to work with the staff and patients in St Francis since its opening in 2004.

It’s the first and only specialist ward in UK dedicated solely to the assessment, treatment and rehabilitation of children and young people with spinal cord injury. Every year, they see over 130 young people with spinal cord injury.

The ward is unique and the staff and specialists do incredible work fulfilling a vital service. Children and young people with spinal cord injury are still growing and have additional needs, not just physical but also social, environmental and emotional. The pediatric team address all of these areas with a view for all young people to transition seamlessly into adult spinal cord injuries services.

Their mission is “to provide a rehabilitation service that is family centred, that responds to changing developmental needs to achieve the best function, participation and growth throughout childhood.”

Here at Back Up, we value the special relationship we have with St Francis. Since early 2012, we’ve organised regular evening sessions for the children on the ward. The sessions give the children and parents the opportunity to talk to people who have experience living with spinal cord injury and also gently help them see what might be possible in the future.

Hospital staff asked young people what they wanted more of and they identified more evening activities – Wacky Wednesday was born.  It happens once a month and is first and foremost great fun. Someone from Back Up, with experience of living with a spinal cord injury, visits the families on the ward and together, with the help of the young people, decide on the evening’s activities. Very often this will involve cooking and a trip to the local supermarket for ingredients.

Sister Sara O’Shea says:

“The sessions are a great opportunity for the children and parents to interact with each other in a more social situation”.

She also feels that because people with spinal cord injury run the sessions they have a real impact on the children and parents’ future outlook. The sessions build team work, communication and confidence – with the focus firmly placed on what the young people can do. They are also a fantastic opportunity to talk about Back Up’s services and answer some of the many questions the parents and young people have.

On recent Wacky Wednesdays the children have baked scones for a cream tea to celebrate the Queen’s birthday (with authentic Cornish clotted cream!), had ‘pimped up’ pizza with strawberries and cream for Wimbledon and most recently two young lads cooked paella for the whole ward (nurses too).

To see the success of the partnership between St Francis and Back Up, you need only look at the faces of the children and staff after a belly full of delicious food prepared by the young people on the ward for Wacky Wednesday. In the future both Sister O’Shea and Back Up would like to look at increasing the number of Wacky Wednesdays we do. Of course if we change the day, we’ll be looking to the children to help us out with a new name!

Sam’s story: Taking on Parallel London for Back Up

Sam’s story: Taking on Parallel London for Back Up

An accident during a rugby match left 10-year-old Samuel – also known as Sam – with minimal feeling and movement in his legs. The injury turned his life upside down. But Back Up was there to help when he needed the most.

After ten weeks in hospital, Sam was ready to come home and go back to school. His school was very supportive and they even encouraged him to return one morning a week as his condition improved.

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Lucy, a Back Up school advocate, visited Sam’s school to explain to his friends what it meant to live with a spinal cord injury. She also met with staff and helped them to make Sam feel included in school activities.

Sam said:

“Lucy told the students to ask before helping me, which is great because I would rather be independent. Before they would open doors for me, but I can open them myself. It’s helpful but I don’t want people doing stuff for me.”

Since receiving support from our School Inclusion service, Sam has also attended a Youth Advisory Group weekend, where he first heard about Parallel London, a fully inclusive and accessible event for people of all abilities.

The event aims to help influence positive attitudes and understanding of disability, as well as highlighting the importance of fitness and encourage more active lifestyle.

In September this year, Sam and his family will participate in the event, which is taking place in London’s Olympic Park.

Ali would like to see more events like Parallel London happening all over the country. She explained:

“Just because you are in a wheelchair doesn’t mean you don’t want to be part of and fully included in events like this”.

Katherine, Back Up’s Community Fundraiser, sees Parallel London as a great opportunity for both individual runners and families to take on a different and rewarding challenge.

She said: “It’s going to be an amazing experience for everyone involved and I hope Sam and his family will inspire you to join our team next year.”

Inspired by Sam’s story? Join our Parallel London team on September 3 2017. Get in touch with Katherine (katherine@backuptrust.org.uk) for more information.

Youth City Skills: Promoting young people’s independence

Youth City Skills: Promoting young people’s independence

This year, Back Up introduced a new course planned and developed by our Youth Advisors – the Youth City Skills course.

The course, which happened in Bristol between 5 – 8 August, gave young people the opportunity to do everyday activities, including using public transport, visiting museums and the theatre, and a treasure hunt around the city.

It was the brainchild of Back Up’s Youth Advisory Group, which explores how to improve Back Up’s services for children and young people. Their aim was to create a course that promotes young people’s independence.

Yasmin Attisha, 16, one of the Youth Advisors involved in planning the course, explained why they picked Bristol as their venue:

“It’s a cool city with some great places to practise your wheelchair skills. Getting around town is very important. And if a friend without a spinal cord injury is interested in learning we want them to come along. We want them to see what we do.”

It lasted for three days and promoted the young people’s independence, along with the new element of bringing a sibling or friend.

Back Up Trust
Image credit: Guy Harrop

This is the second new Back Up course developed by the Youth Advisors. In 2013, they came up with the idea for the Moving Forwards course for 18 – 25 year olds, which bridges the gap between the courses for under 18s and adults. Based in Leeds University campus, it helps young adults deal with issues around their increasing independence, such as travelling and moving away from home.

Beth, Back Up’s under 18s manager, said:

“Youth Advisors give us ideas and we help them to become reality. It’s an exciting partnership – it’s not just lip service and ticking the box. We encourage them to lead and run our services.”

The Youth Advisors are active on social media and have a closed Facebook group for young people with spinal cord injury where they can communicate with others throughout the UK and post practical information, such as choosing which cars are good when learning to drive.

Back Up Trust
Image credit: Guy Harrop

Are you a young person living with spinal cord injury? Add Ella on Facebook and then she will invite you to join the group. 

Harkaran: My experience working with Back Up’s finance team

Harkaran: My experience working with Back Up’s finance team

I’m going to tell you about my two weeks at Back Up for work experience, which was – as you would expect – fun yet informative and useful.

The reason why I wanted to do my work experience at Back Up was very simple, and it was one of the first places that came into my mind when I got the letter from school. I know that some of you might think that work experience isn’t very important but I’m here to tell you something else – it does matter.

Future employers will look at where you applied and they will analyse the job and look for all the skills you may have learned from it. I knew that working at Back Up would give me experiences that I can’t learn elsewhere.

Before I started, I was very nervous and anxious, worried that I would mess something up and scared. Very scared. But now? I feel completely at home. Everyone here makes you feel welcome and the atmosphere is friendly and calm.

The hardest part is probably learning. Once you’ve learned how to do something, it’s easy. If you find it hard to understand how to do something though, don’t hesitate to ask. Someone will always be ready to help you and go through it again.

Another thing: don’t be scared to make a mistake, it’s absolutely fine and it’s also normal! If you think you have made a mistake, just ask someone to check your work.

The best bits? Everything. From learning something to the satisfaction of doing something right and also knowing that your work is important – like registering people on the database. But to be honest this can make it a bit scary too.

I’ve learned loads. I’ve learned how each of team works and how they all drive Back Up and that without one, the rest wouldn’t work as well. I’ve learned how to use the database that is used to store everyone’s details and I’ve also learned how all the income is processed.

Finally I’ve learned many, many, many tips on using Microsoft Excel.

If you’re thinking of applying for work experience at Back Up, go ahead! Trust me, you will not regret it.

If you’re interested in doing work experience at Back Up, please get in touch with ella@backuptrust.org.uk or 020 8875 1805.

You can also get in touch with charity Whizz-Kidz. They run the Work Placement Programme, supporting wheelchair users between the ages of 14-25 into a work placement.  They advertise opportunities here. If you have any questions or want more information please don’t hesitate to get in contact k.doherty@whizz-kidz.org.uk or 020 7798 6127.