We’re thrilled to announce that Andrew Dickinson has taken over a new role at Back Up as our Family Outreach and Support Coordinator.
This unique new role, which is funded by a grant from the Baxter International Foundation, is a first point of contact for family members of people with spinal cord injury, providing much needed support and advice.
In his role, Andrew will coordinate a team of volunteers – all of whom have a relative or partner with an injury – to visit spinal centres, run information sessions and connect with family members on relative days. Back Up will also be piloting a new telephone support service for families too.
“With this new role in place, we will be able to connect with families as soon as possible after their loved one has a spinal cord injury,” said Andy Masters, head of Back Up’s Outreach and Support services. “At this point, many family members can feel guilty about asking for help because they feel the focus shouldn’t be on them. Our new Family Outreach and Support Co-ordinator will proactively reach out to families, make those all important early connections to offer support and refer them through to our other specialist services.”
Many family members suffer feelings of depression and isolation after the injury of a loved one. Our research shows that 33% of parents are clinically depressed, and 76% of siblings experience feelings of neglect and isolation.
Andrew knows first hand how vital this support for family members will be. He first became aware of Back Up when a family member of his was involved in a car accident in 2009 which caused a permanent spinal cord injury.
“Immediately after Sam’s accident it was hard to imagine that life could ever be the same again. We were plunged headlong into this whole new world, caught spinning in a maelstrom of new terms like “autonomic dysreflexia.” We were lost and travelling without a map.
However, what Back Up gave us was the reminder that just because we currently felt lost didn’t mean that we were the first ones to walk this road. What is so amazing about this charity is that they recognise that this sort of injury affects everyone. My entire family experienced a trauma in that car accident and every one of us could benefit from support.
That’s why I feel so excited to take on this role within Back Up as the Family Outreach and Support Coordinator. I’m looking forward to building relationships with families affected by this injury, working with our colleagues in the NHS to develop support within spinal units and creating a space for family members to share and learn from each other.
This is something that has never been done before, our estimates suggest that there are 4,000 new family members encountering this world with every passing year and I am very much aware of the monumental nature of the task ahead. I can’t wait to get stuck in.”
If you’re a family member and need support, please email Andrew (Andrew@backuptrust.org.uk) or call him at our offices on 020 8875 1805.
We believe that all of our team of over 400 volunteers make a unique and vital contribution to our work. Back Up was founded by volunteers and volunteering remains at the heart of everything we do. Our volunteers govern Back Up, run wheelchair skills sessions, group lead courses, raise awareness and funds, and support and develop our work in so many different ways.
If you or a loved one has a spinal cord injury, you could use your own personal experience to support others in a similar situation as a volunteer mentor.
Passing on those vital words of wisdom to someone adjusting to life post injury can be a life-changing experience for both you and your mentee.
“I have been a family mentor with Back Up for almost six years. When my son had his accident 13 years ago there was nobody to talk to when I needed to, as the mentoring service was not in operation at that time.
Being able to offer some of my time, share experiences and listen to other parents to support them through times of adjustment is very rewarding for me. Every call is different, every case is different yet we all go through the same pain.
Volunteering for Back Up is a way for me to help the charity to reach out and transform lives of families as well as those who are injured.” (Caroline, Family Mentor)
To find out more about becoming a mentor, please contact Polly by email (Polly@backuptrust.org.uk) or give her a call on 020 8875 6721.
Nurse or Personal Assistant (PA)
Back Up runs a range of residential courses for people with spinal cord injury to help them rebuild confidence and independence. To ensure that our participants can enjoy themselves and get the most out of our courses, we rely on the vital support of Nurses and Personal Assistants (PAs).
The role involves assisting with the personal care needs of spinal cord injured participants and volunteers, supporting participants to develop their skills and independence, and contributing to the positive experience of the group as a whole.
Getting the chance to see people grown in confidence – and being a part of that transformation – can be a truly rewarding experience. It also offers a unique chance to work with people with spinal cord injury outside a clinical environment whilst having plenty of fun along the way!
“Volunteering with Back Up has given me fantastic experiences and the knowledge that I’m helping to make a big difference. Seeing how the participants grow and develop on courses is so amazing and makes me feel really proud to be involved. Being a PA on courses has also improved my employability. Volunteering looks great on anyone’s CV, but volunteering with Back Up is a real plus.’’ (Amanda, PA)
To find out more about volunteering as a Nurse or PA, please get in touch with Merryn by email (Merryn@backuptrust.org.uk) or give her a call on 020 8875 6741.
We are always on the lookout for volunteers to help out with admin and marketing support at our offices based in Wandsworth, South West London. Whether you know your way around an excel spreadsheet, have an eye for design, or some regular time to help out with general administration, we would love to hear from you!
Whilst you may not be out on the front line delivering the services, you will have the opportunity to do invaluable behind-the-scenes work that ensures the smooth running of our services and fundraising events. You’ll also have the opportunity to develop professionally and work alongside a bright and passionate team who will ensure that your time spent in the office is enjoyable and fulfilling.
‘‘I really look forward to going into the office and it has been an ideal stepping stone back to the world of work, but with the added ‘safety net’ that I am working alongside colleagues who understand what it is like to have a spinal cord injury and the complications that go with it. I feel valued and supported and it has been excellent for building up my confidence, gaining new friendships and adding structure to my week.’’ (Tracy, Office Volunteer)
To find out more about our office volunteering opportunities, please contact Kat by email (Katherine@backuptrust.org.uk) or give her a call on 020 8875 6749.
In November 2015, I received an email from my company asking for people to volunteer as Buddies on Back Up’s Ski Karting course in Sweden. I liked the idea but two things held me back initially:
I knew nothing about spinal cord injury – I had never even met someone with a spinal cord injury. So I felt completely inadequate for the role – what could I offer Back Up and the participants?
It was a busy time at work and I didn’t think my manager would let me take an extra week off.
But I was still interested so I applied on the last day before the deadline. Luckily, my boss is a snowboard fanatic and understood the benefits of the course so he happily signed off on me taking the week to volunteer. (He just came back earlier this year from Back Up’s Colorado Sit Ski course where he also went as a Buddy – so I managed to get him hooked on Back Up too!)
So you started off as a corporate buddy then became a regular volunteer. What prompted that decision?
The energy, the positive vibes, the amazing team work and the friendships I got out of the Sweden Ski Karting course were the main reasons behind my decision to continue volunteering with Back Up. That week in Sweden I felt I really contributed by just being myself and bringing a positive attitude. I learned from others, listened to what they needed, helped out wherever I could and had fun with everyone. It was quite an intense schedule: from coffee rounds in the morning at 7am, to going through the skiing schedule, to afternoon spa sessions and socialising till late. But I never felt tired.
My biggest worry was that I might hurt or offend someone I was actually trying to help by offering assistance. Was there a protocol? I didn’t want to be rude and do things for people that they’d prefer to do themselves. Thankfully, one of the volunteer nurses gave me the best advice at that point and said that if you’re not sure, just ask.
Following that discussion, I felt much more confident like I was part of a very well-functioning machine. And after a while, I felt like I didn’t even notice that some people were using a wheelchair. I just stopped seeing the chair and started seeing the person.
After the Sweden Ski Karting course, I decided I wanted to do another course with Back Up as a buddy, to get to know some more incredible people and gain more experience so I could get trained up as a group leader.
I decided to volunteer on the Belfast City Skills course in August 2016. What really touched me was the progress I saw in the participants over the duration of the course. Everyone felt more independent and left with renewed self-confidence because of the skills they discovered (from balancing on their back wheels, to going down flights of stairs, to pushing with one hand while holding a drink – everyone learned something new and useful). Belfast is also a beautiful city and we had a very knowledgeable guide to take us around.
What did you get out of your volunteering experience?
On a personal level, I learned a lot about the challenges people with a spinal cord injury face in daily life. I also gained self-confidence as I found out that I can try new things and do them well. I also made lots of wonderful friendships.
As a Buddy, I had to use my initiative a lot to recognise when tasks needed to be completed and when participants required assistance. This has transferred to my professional life as I can see when colleagues need my advice and where I can add value to a discussion.
Do you think more companies should create opportunities for their employees to volunteer?
Yes as it gives people a chance to get to know each other in a more relaxed environment where job titles don’t matter. You can also develop skills that are applicable to your job, but that you don’t get to explore so much on a daily basis. These will definitely benefit the company as people feel they are more valued when given opportunities to learn and grow. This year, we have 3 teams taking on the Back Up Snowdon Push. It just shows that people from different departments can come together and work as a team, and that they are eager to volunteer – if given the opportunity.
It’s fantastic to have this support for our buddy programme from BMO. The combination of a financial contribution from a company and the employees volunteering their time ensures that Back Up can continue to offer these life-changing courses. If you’d like to volunteer as a corporate buddy, please contact our Corporate Partnerships Manager, Sean McCallion, on 020 8875 6747 or email email@example.com.
Richard, aged 64, is a long standing volunteer power chair trainer and mentor. He has an undeniable passion for volunteering and enabling people to make positive changes in their lives. Seeing the difference when they break through a barrier or achieve a goal is a satisfying feeling, one that never gets old for Richard.
‘One of the most rewarding things is seeing people develop. When I first meet patients in the hospital, you see a lot of fear in them. And I think that’s how I must have been in those days. But you take them through a power chair training session and it makes a big difference. Then you meet them further down the line, and it’s great to see how far they’ve come on and what they’ve achieved.’
Richard first got involved with Back Up in 2009 during a visit to the National Spinal Injuries Centre, Stoke Mandeville. Whilst he was there, he heard a talk from a staff member about our mentoring service. When Richard sustained his spinal cord injury in 1980 as a result of a road traffic accident, mentoring wasn’t yet available. He saw the huge benefit the service could offer to people with a spinal cord injury and family members, supporting them to overcome challenges in daily life and work towards personal goals.
Luckily, a training weekend for new mentors was taking place the following weekend and a space had opened up. After he completed the training, he was matched with his first mentee: a man with a complete injury at a similar level to Richard. He’d had to move into a care home following his rehabilitation, and Richard mentored him during those difficult early days.
‘After we finished our mentoring relationship, Back Up arranged for me to meet him and his family. We decided to meet at an art gallery, as he was really fond of art. It was such a milestone for him to leave the care home for the first time. Meeting him and seeing what a change had taken place in him was wonderful.’
Richard became one of our first power chair skills trainers in 2011. He is among a team of 46 trainers that travel throughout the UK delivering sessions at all 11 spinal injury units. He also regularly leads the skills sessions on our residential courses. He gets to see first hand how our sessions give people a new lease of life:
‘Some of the participants on wheelchair skills sessions at spinal centres attend a couple of times whilst they’re there. I’ve seen many of them develop over that time, learn new skills and gain confidence. As a trainer, that’s really amazing to see.’
Richard speaks most fondly of his time as a skills trainer on our Over 50s courses. He believes that age is no barrier to a fulfilling life.
‘You get people on the Multi Activity courses who are 80 years old and when they’re told that they’ll be doing kayaking, abseiling down a rock face, they turn around and say ‘no we can’t do that’. But when they actually do it, it’s amazing how much fun they have and what they get out of the experience.’
It’s moments like these that are the real payoff for any volunteer – getting to see people grow and develop, learning more about what life still holds for them.
‘After 3 to 4 days on a Multi Activity course, you can start to see a change in people. The night before the last day we often all have a chat about what people have got out of the course. It can be quite touching.
Sometimes people get very emotional because they’ve achieved so much. They might not have been out of the house for months. They’ve lost contact with other people who have a spinal cord injury and now they’re doing all kinds of things!’
Richard is a truly special volunteer and we hope that he will continue to show people how much is still possible after spinal cord injury. He knows that it’s not a life ending, just a new one beginning.
Some people are clearly born runners; their long legs bound gracefully over concrete, one long limbed extension after another, a serene look of ease on their fair, unclammy face. They glide past you on the street as silent and fast as an archer’s release. Sadly for the majority of us this is not the case. The rest of us huff and puff our way across cracked pavement and over ungainly tree roots. Brows sweat profusely and headphones are imperative to block out the slap slap of flipper-flat foot on tarmac and mud.
Haile Gebrselassie I am not. There is no denying that I am firmly ensconced in this second category of runners. My stumpy legs belie my height and my hobbit-like feet make dumbo look like a ballerina.
I can’t pretend that it was my intention to ever compete in the marathon, it was not something that had previously crossed my mind and it was only due to a miscommunication with my over-eager sister that I got mixed up in the whole thing in the first place.
I was naturally tentative to start with, and my mind conjured seemingly watertight excuses as to why I shouldn’t take part: “Shouldn’t you be concentrating on your new job?” “Pounding those concrete streets is going to wreak havoc on your knees.” “Do you even realise how long 26.2 miles is?’’. However, by the end of September, largely thanks to the advice and enthusiasm of Back Up, those excuses had run dry and I filled in my application form.
Once I had been accepted to run on behalf of the charity the first few weeks were full of encouragement, advice and the occasional ‘you wouldn’t get me doing that’. I filled out the paperwork but my training wasn’t due to start until the first week of January. What better excuse was there than that to make the most of the festive period and eat and drink to my heart’s content? And so it was that on the January 3rd (the 1st and 2nd were bank holidays before you ask) I set off on my first run of the year – full of vim and fervour for the open roads and perhaps a few pounds more Hugo than when I had signed up.
The first few runs didn’t seem too bad, I was following a training regime downloaded from the internet that called itself ‘Running your first Marathon’ which put special emphasis on rest days and eating enough carbohydrates to fuel your body, two things that come very naturally to me. The hardest part of these first sessions was undoubtedly the winter chill that had settled on South West London. The biting cold claws at any uncovered patch of flesh and reminds you every morning how easy it would be to just stay in bed. My brand new, hi-tech running trainers, with their extra breathable flyknit weave fabric and their durable yet malleable polyurethane foam soles, were no match for the nippy gust that freezes toes.
The reason that I am putting myself through all of this is simple: to do what I can to raise money for a charity that I know first hand makes a huge difference. The effect that a spinal cord injury has is devastating.
Six years ago my sister fell from a balcony and broke her back, which left her completely paralysed from the waist down. She spent weeks in a coma, followed by further months in hospital. The moment she was able to put her mind to her future, Back Up was there. They taught her everything there was to know about life in a wheelchair, from the skills that it takes to cover the unprepared high streets to how to educate people about life with a spinal cord injury.
Back Up were there when Sophie finished her rehabilitation, guiding her at every turn. The charity set her up on a trip to Colorado to try sit skiing for the first time and now she is competing to represent Great Britain at the next Paralympics. The work they do is immeasurable. That is why I am so proud to be helping out in my small fashion by lumbering my way around the streets of London.
So the weeks go by and the runs get longer and harder. My fundraising page, that I check daily, sounds out the countdown in its jovial comic sans typeface. At the time of writing the big day is 60 days off and moral is high. The generosity of friends, family and even those who don’t know me but have been kind enough to donate, has blown me away and I am so grateful that they have given me this opportunity to help raise money in order to support those in need of Back Up’s services.
The weather is slowly improving and I no longer finish my pre-work runs under a cloak of darkness. A pesky muscle strain has slowed my progress over the last 5 days but with any luck the cocktail of anti-inflammatories and ice spray will see that it does not tarnish my ambitions. I still have a long way to go and who knows what obstacles will be placed in my path over the next couple of months. One thing is for certain, however, that Back Up will be with me throughout, just as they have been there for so many.
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!
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.
On July 8 2017, we will hold our first ever Back Up Festival at Cokethorpe school in Witney, Oxfordshire. This event is the brainchild of our Youth Advisory Group who meet twice a year to influence and shape our U18s services. They came up with the idea of Back Up Fest as a social occasion where young people, family, friends, supporters and the general public can all come together to celebrate and promote the work of Back Up – as well as have a lot of fun!
‘‘Back Up Festival was suggested by the under 18s who form our Youth Advisory Group as an alternative social occasion to the Back Up Ball, which they generally do not attend. The original idea was to have a place where all our young members could come together. However, our Youth Advisors believed the idea of Back Up Fest seemed too good to limit our audience and decided that it should be an event run by young people but open to everyone!’’ said Alex Provan, who works in the community fundraising team.
‘‘We have an incredible group of young people working with us from youth advisors and young mentors to young wheelchair skills trainers and young group leaders – all of whom have contributed to putting this idea together.’’
The day itself will showcase different bands to suit all age groups, fun games and stalls. There will also be inspirational talks from members of the YAG as well as other speakers.
Everyone is welcome to attend and we hope that local communities and disability groups will get involved too.