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.

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