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.
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.
‘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.
‘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 (email@example.com) or call us on 020 8875 6729.