Louise Wright | The future of Back Up

Louise Wright | The future of Back Up

As I reflect on the past year at Back Up, I feel so very proud of all we’ve managed to achieve in 2016. Our commitment to reach everyone affected by spinal cord injury has pushed us to expand our services again this year.

A real highlight has been the introduction of our Next Steps course for people with spinal cord injury who are able to walk.

We’ve always prided ourselves on listening to the needs of our service users and finding a way to meet that need. We know that people who can walk have sometimes felt ‘invisible’ in the spinal cord injury community and so we were determined to run a course that was specifically tailored to their experience.

In 2017, Back Up will run at least one Next Steps course if not more. In the same year, we will also launch our new Family Outreach and Support Co-ordinator position which will be funded by the Baxter Foundation. The individual in this position will ensure family members receive the support and advice they need as they come to terms with the injury of a loved one.

On the world stage, we have become one of the most influential peer led organisations for people affected by spinal cord injury. We’ve shared our experience this year with countries like Greece, Germany and Australia, with more planned in 2017 and beyond.

We continue to make progress and reach more people year on year but it’s been happening against a horrifying back drop of cuts. If you had your injury in the 1980s, you would expect to access specialist rehabilitation for up to 12 months. Today, you’re more likely to get 3-6. That’s if you’re lucky enough to access the specialist services you need. Many people who have their spinal cord injury as a result of a medical condition often slip through the net, missing the vital support they desperately need shortly after their injury. Support is also lacking for those who use a ventilator, or need care at home. So we recognise that Back Up must continue to develop in response to the growing challenges around us. And we also know that you all play a huge part in making that happen.

We thank each and everyone one of you that have supported us, funded us, volunteered with us or helped in any way. Without you, our work would not be possible.

As I write this I’m particularly struck by something our founder, Mike Nemesvary, said when he returned to the UK to celebrate our 30th birthday:

‘‘The commitment of volunteers cannot be stressed enough – from Board and Committee members to carers and buddies on courses and our many fundraisers and supporters. Back Up would not be in existence today without the literally thousands of individuals who believed in our mission.’’

Our mission to inspire people affected by spinal cord injury to transform their lives is as true now as it was when it was first uttered 30 years ago. And it’s those words that give me the fire to build on our successes and change people’s lives for the next 30 years to come. So bring on 2017.  We’re ready for you.

If you’d like to support our work in 2017, you can click here to make a donation. All your gifts make a huge difference to what we can achieve.  We’re also on the lookout for new volunteers to join our team as buddies and PAs on courses, or to help out on events and in the office. Click here to find out about all our volunteering opportunities.

Photography by Linda Scuizzato


Malene’s story: Volunteering at Back Up

Malene’s story: Volunteering at Back Up

I first heard of Back Up in 2011 when my company chose it as our corporate charity. We’d not previously had a corporate charity so we were all very excited about helping out. We held regular fundraising events but I decided that I wanted to get more involved with Back Up. I had thought about volunteering in the past but life always got in the way, as it does for a lot of us. I also wanted to find a smaller charity where the help they receive makes a bigger impact so I started volunteering in the office during my holidays. The first thing I do now when our holiday request form is released at work is look at the Back Up calendar so I can book time off to help out at the major events and buddy on courses.

Choosing which charity to work with is difficult as there are so many deserving causes out there, but I honestly couldn’t have made a better choice. All the staff members are so passionate about what they do and the atmosphere in the office is so great that when I’m there it doesn’t actually feel like I’m working. I have made some great friends at Back Up and I genuinely look forward to coming to the office to help out.

I was asked to join the Back Up ball committee 2 years ago after having attended my first ball. There was never any doubt in my mind as to whether I would accept. When I was there as a guest, I had no clue about all the work that goes into planning the ball to make it such a success. The evening runs so smoothly and this is down to the fantastic team of staff and volunteers that look after everyone on the night and,of course, the work the committee has put in prior to the event.

Guests at the Back Up Ball

It truly is one of the highlights of my year and I’m not just saying that because I’m part of the committee. I love seeing people get together to celebrate the fantastic work Back Up is doing, catching up with people they’ve met on courses, receiving well-deserved awards and generally just having a great time together. My favourite part is when the awards are handed out. The look of surprise on people’s faces when they realise they’ve won is fantastic, no one ever assumes that they are the one who will win it as none of us are doing this for the glory. We do it because we love it.

If you are interested in being part of the team that organises my favourite event of the Back Up year, then I would recommend you speak to the Major Events team about applying for a position on the committee. You will get a chance to be involved in choosing the theme, sourcing auction prizes and – best of all – you get to be part of the team that helps make sure the event runs smoothly on the night.

I will continue to help out in the office leading up to the major events and buddy on a course for as long as Back Up will have me. I have well and truly been bitten by the Back Up Bug!

If you would like to apply for a position on the ball committee, please email Isabelle (Isabelle@backuptrust.org.uk). We’re also excited to announce that our early bird tickets are on sale now! Click here to get your £65 early bird tickets for next year’s ball, November 11 2017.

Mike, Sam & James | Our fantastic community fundraisers

Mike, Sam & James | Our fantastic community fundraisers

As we come to the end of 2016, we’d like to share some of the stories from our fantastic community fundraising team. Click here to get involved in 2017!

Mike Wigney at the London to Paris start line

Mike Wigney: London to Paris bike ride

How did you get involved with Back Up?

I heard about Back Up during my rehabilitation at Stoke Mandeville. Six years later I signed up to my first course and attended the Exmoor Multi Activity course. I had always been a keen cyclist so as soon as I left Stoke I started hand cycling, but what I really wanted to experience from the course was how everything else in a wheelchair would work. I definitely found this out, with the added bonus of getting involved in wheelchair rugby!

What motivated you to take on this challenge and what did you get from the experience?

After Exmoor I subscribed to the Back Up newsletter and saw that they were looking for a team to ride from London to Paris. I had thought about doing a challenge like this before, but it was only when I saw this that I seriously considered it and signed up! I’ve had my hand bike for 14 years and this was the longest ride I had ever done on it. It was also the first time that I had actually trained for something.  I went for a ride every weekend up until the challenge.

Would you recommend it to someone else?

I would definitely recommend this to everyone. It was fantastic event that had the right level of challenge with an excellent group of people. Everyone had a really close connection to spinal cord injury. I was also surprised at how much everyone got along for such a large group. I’ve never experienced anything like it! If the next cycle challenge is anything like London to Paris, it will be fantastic.

Sam Bick just after finishing her abseil of Spinnaker Tower

Sam Bick: Abseiling Spinnaker Tower

How did you get involved with Back Up?

I first got involved with Back Up in 2015, when I attended one of their residential activity courses held in Belfast.  I met some amazing and inspiring people and had a fantastic time. The course was so worthwhile and allowed me to turn my life around by rebuilding my confidence and independence as a wheelchair user.

What motivated you to take on this challenge and what did you get from the experience?

This year, Back Up turned 30 so I decided to give something back to the charity that held a special place in my heart. I decided to abseil down Spinnaker Tower in Portsmouth with my five friends Jenny, Rosemary, Sandie, Tony and Phillip.

The day itself was really hot with very minimal wind which is the perfect weather for an abseil. Although this didn’t help calm my nerves! The scary bit was hanging in mid air waiting to be told to go! But the health and safety guys explained everything we had to do to commence our descent and put us well at ease. Everyone had helmets on which had go pro cameras attached and we were told to look all around during the abseil so we could watch our descending views (if we were brave enough!).

As a wheelchair user I could only use the ropes to get down but I still had an amazing time and it didn’t make any difference not being able to use my legs. The views were fantastic and it was a totally thrilling experience. The highlight for me was actually taking part and proving to myself I could do it and anything really is possible!

Would you recommend it to someone else?

I would highly recommend anyone taking part in the abseil, whether you are a disabled person or not. If you are looking for a great thrill and a different challenge this is something you will certainly enjoy. Spinnaker tower has the most amazing views of the sea and Portsmouth. The help and support I received as a wheelchair user from all the abseiling team was fantastic.

James in the middle of his walk

James Slater: London to Cambridge walk

Tell me a bit about your involvement with Back Up?

I came to know Back Up as a result of my dad having an accident roughly two years ago when out walking on holiday. He broke his neck after slipping on a sea wall and falling 16 feet. After being moved between several different hospitals he was finally transferred to Stoke Mandeville hospital for his rehabilitation. We were first introduced to Back Up when we met some volunteers from the charity on a family and friends evening on the ward. They were really helpful while dad was adjusting to his injury and he’s still involved with them now. He’s even decided to attend one of their courses next year.

What motivated you to take on this challenge and what did you get from the experience?

I decided quite quickly that I wanted to do something for one of the charities that had helped my dad. I asked him which charity he would have chosen and he said Back Up. I came across the 100km walk from London to Cambridge and decided this was the challenge I wanted to undertake.  Taking on the 100km walk was one of my biggest achievements. I was in quite a lot of pain towards the end and wasn’t sure I’d be able to complete it. However, my determination and will power to complete the challenge helped me over the finish line. I powered through and completed the walk in 23hrs and 40 minutes. I had an absolutely amazing level of support from my friends, family, colleagues and even strangers. There were times during the training and the walk itself that I had moments of doubt but the overwhelming support I received from everyone was such a huge motivating factor – I couldn’t believe the amount of people who got behind my challenge and sponsored me.

Would you recommend it to someone else?

I’d definitely recommend doing it. Sometimes it can be difficult to find the time but it’s definitely worth it. It was the first time I had ever done something like this and the sense of achievement I felt when I completed it was incredible. I enjoyed it so much that I am taking on the London to Brighton challenge next year and I’ve been trying to motivate other members of my family to do something too!

Thanks to Sam, Mike and James and all our absolutely fantastic community fundraisers in 2016! Your passion, determination and hard work has raised over £90,000 for our vital work. If you’d like to make a huge difference to the lives of people with spinal cord injury, fundraise for us in 2017! To get involved click here, or email Kat (Katherine@backuptrust.org.uk).

Amanda’s Story: My journey with Ben

Amanda’s Story: My journey with Ben

‘The first time I rang all I did was cry. I guess that was me accepting that I can’t do this on my own and I need help from people who’ve been through this too’.

In August 2015 Amanda’s son, Ben, was climbing a tree when a branch broke and he fell twenty feet landing on a concrete slab head first. Both their lives changed in an instant. Amanda, who was living in Southern Ireland at the time, moved back to the UK with her partner for Ben’s rehabilitation at the James Cook spinal injury unit in Middlesborough.

On the ward, Amanda was given leaflets and books about life with spinal cord injury but what she needed was time to process what had happened to her son.

‘You have to be ready to read the literature and I wasn’t able to do it at first. Ben had been in the hospital for 6 weeks when I got that pack. And it still took me a few weeks to read it. I did it in stages. I was afraid to ask anything. I thought I would cope. I thought I’d be ok.’

Amanda tried to handle things on her own but she was overwhelmed by her new responsibilities when she brought Ben home.

Amanda with her son Ben

‘I had to learn about his medications, what he could and couldn’t do. And I was so worried about making mistakes. I couldn’t really plan ahead much and I felt like I was forgetting things all the time.’

There were carers coming in and out of their home all the time and it took a toll on them both. Some days, Amanda would just breakdown.

‘At times I just couldn’t do it. I just sat there and cried. You’re supposed to be able to fix things. You know that’s a parent’s job. You’re supposed to make things better, but I just couldn’t fix this.’

Amanda was also under a lot of pressure from Ben’s father and grandfather. They told her that she should push Ben to be more independent, but Ben felt like he was doing his best.

‘I felt pressured to push and push and push Ben. It was awful because I just wanted to know I was doing right by my son.’

Amanda got in touch with Back Up and they connected her with their mentoring team. They matched her with another parent who’d been in a similar situation to her own. Talking to her mentor made a huge difference because she could finally speak to someone who just got it, someone who’d had those same conversations and worries swimming around their head.

‘It was absolutely fantastic. Talking to my mentor, Ian, made me see that I was doing a fabulous job, that my son had achieved so much in such a short time, and that the pressure his family were putting on us was misguided.’

Everything she had been worrying about previously didn’t burden her so much anymore. She felt like a weight had been lifted.

‘My mentor said it’s a journey, not a destination. That’s always stuck with me and I know Ben and I can get through anything together. And I had guidance for every step of the way. Whatever was happening, I could ask him about it. I can’t thank him enough.’

Amanda struggled to reach out for help at first, mostly because she wanted to be strong for her son during the early stages of his injury. But she now realises that all those people on the ward were there to help her come to terms with her new situation.

‘I didn’t appreciate it at the time, but I eventually realised that I can’t do everything on my own and that I can ask for help too.’

We know that spinal cord injury affects the whole family. Early next year we will have a family outreach and support coordinator joining our growing team. Being a family member of a loved one with a spinal cord injury, they will be able to offer support and guidance to other family members when they need it most. To learn more about this role, email Andy Masters (andym@backuptrust.org.uk) or call us on 020 8875 6729.

International Day of Persons with Disabilities | Trish’s story

International Day of Persons with Disabilities | Trish’s story

In 1990 I was studying Hospitality Management in Edinburgh. Over the Christmas holidays I visited the highlands to celebrate Hogmanay and I was involved in a car accident. I broke my back at the T6 – T8 level and was left paralysed from just below the chest downwards. It seems like such a long time ago now – over 25 years in fact – and I had very little idea about what life would be like using a wheelchair to get around.

I heard about Back Up whilst in hospital at Hexham Spinal Centre (now moved to Middlesbrough) and signed up for a skiing course straight away. That experience was completely life-changing for me, especially being able to talk to other women who had a spinal injury. It made such a difference to be around people who understood and I was definitely bitten by the Back Up bug!

In 2002, Back Up ran the first train-the-trainers course at the Calvert Trust in Keswick to recruit a team of wheelchair skills trainers. The lead trainer was Tomasz Tamanski and I was invited to be a group leader. When I collected Tomasz from Manchester airport, I remember us chatting on the journey up.

Neither of us really knew what to expect, or even if Back Up was going to be able to support a trainer for every multi activity course that it ran. Little did we think that fifteen years later, this would be such a massive part of how Back Up supports so many people.

At the time, I’d never thought of myself as having particularly strong wheelchair skills. But I was more than happy to facilitate helping to make the course run smoothly, see if I could improve my own skills, and help with passing on any coaching tips. Since then, I have helped every year on the annual train-the-trainers course and become a trainer myself. I discovered that I could definitely hold my own alongside the other trainers; it even gave me the confidence to book a year-long trip backpacking and travelling around southern Africa.

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Wheelchair skills training in Kenya

It was a real eye opener to see how disabled people cope when they don’t have access to the right equipment and support in their own communities. Many lacked the knowledge to look after themselves properly and relied on family members to provide personal care. They also felt embarrassed to leave their homes as they thought other people would stare at them.

When I returned to the UK I heard about a volunteering programme that Motivation International had set up and I signed up straight away. Over the years I’ve been lucky enough to support projects in the Solomon Islands, Nepal, Russia and earlier this year, Kenya.

I spent two weeks in Nairobi, volunteering on a train-the-trainer course run by Motivation. We trained up wheelchair users as trainers, ready to deliver sessions to groups of newly injured people in hospitals. The training uses the same ramps and kerbs that Back Up uses to improve mobility and also shows participants how to instruct assistants to help them in the safest and most effective way possible. Watching the new trainers reminded me of how I felt when I achieved my first transfers independently – I was so proud of myself and I knew how much it would help  me to go out and about without depending on other people.

There were so many brilliant successes but I was especially moved by one of the trainers mastering the art of using a sliding board – a simple piece of wood that bridges the gap from transferring onto and off her bed so that she didn’t need to have someone around to help.

Both of my co-leaders, Faustina and Fred, have a spinal injury and they live in Tanzania and Uganda. I learnt so much from both of them – they really understood the challenges of living and surviving in a culture where it’s a commonly held belief that a spinal cord injury is caused by a curse for an action that they or a family member have committed. Luckily the Motivation training not only works on wheelchair skills but it also shares vital information on disability rights and health care which helps to dispel some of these negative perceptions.

Since the training in May, the new trainers have run wheelchair skills sessions with many groups and made visits to hospitals around Nairobi. It’s been an amazing privilege to have been able to pass on these essential skills – that have helped me so much – to others with a spinal cord injury. This will hopefully be the beginning of Kenya’s own peer training programme where they pass on the right information, practical training and support to all newly injured people throughout Kenya.

To learn more about Motivation’s international work, click here. Want to become a wheelchair skills trainer? Or learn more about Back Up’s wheelchair skills training? Email outreachandsupport@backuptrust.org.uk or click here.