In 2016, we decided to change the name of Join the Dots to Wheelchair Skills Extra.
Many of you will be aware of our Join the Dots wheelchair skills sessions, which are held in town centres near many of the spinal centres in the UK. These community based sessions are an expansion of the original wheelchair skills programmes which we have been running since 2001. In these sessions, our experienced wheelchair skills trainers have given thousands of people life-enhancing confidence.
We’ve decided to change the name of these sessions to Wheelchair Skills Extra. This is to make it clear what these sessions offer and how they follow on from our sessions in spinal units, putting those skills learnt on the ward into practise in daily life.
We know that getting around as a wheelchair user can be frightening. How will I get to the shops, play with my kids or just carry a cup of tea to the living room? Wheelchair Skills Extra gives people the independence they need to get back to living their life to the full.
Held in ‘real-world’ locations outside the hospital setting, you get the chance to practise and refine your skills and build your confidence when out and about. We tackle everyday obstacles e.g. pavement and slopes and support you to overcome any worries you may have about being out in public for the first time as someone with a spinal cord injury. By the end of 2017, we aim to establish our sessions in all the spinal centres throughout the UK.
These sessions are kindly supported by Irwin Mitchell Solicitors and Gerald Simonds Healthcare. Anne Luttman-Johnson, Client Services Manager, Irwin Mitchell Solicitors commented:
‘We know first-hand what a difference Wheelchair Skills Extra makes to those about to leave their spinal injury unit into what can be a daunting world for someone using a wheelchair for the first time outside of their hospital environment. Irwin Mitchell employees volunteer at the different sessions round the country gaining so much from the experience. Not only is it fun, but they also appreciate that this versatile and practical help means a lot more to those taking part in the next part of their rehabilitation programme.’
Find out more by clicking here or contact us at email@example.com or by telephone on 020 8875 1805
It could be thought that being dependent on others is the antithesis of being independent. However, as my injury limits the use of my lower and upper limbs, making me reliant on the support of personal assistants for many everyday tasks, independence takes on a slightly different meaning than it might conventionally evoke. My dependence on others does not prevent me from either pursuing my goals or having the freedom to choose what I do with my life; I gain my independence through ensuring that the support I receive enables me to do these things. However, it has not always been easy and it has been a massive learning curve to feel independent and happy with the support I receive.
Before I sustained a spinal cord injury in May 2009 I was a happy, (relatively) care-free, 18 year old rock-climber. Life was good: I had just learnt to drive, I was planning a year of travelling and climbing and I had a conditional place at the University of Sheffield for afterwards – I felt pretty free and I was excited for the future! However, upon breaking my neck in a car accident, I was faced with a new reality of life in a wheelchair, dependent on the support of others to help me to achieve my goals. In the 8 months I spent in Sheffield Spinal Unit and the 7 months I spent in a residential home waiting for my parent’s house to be adapted, I began to gradually accept my new situation. Defining moments include being told, just three weeks after my accident when I was still on the high dependency unit, that I should try not to get too down about not being at Glastonbury with my friends that day as I would be able to go next year in an off-roading wheelchair. At the time I hadn’t even sat up in bed properly, so the idea that I would need to use a wheelchair next year hadn’t even crossed my mind – I was still determined I would be able to climb again and go on the trips I’d planned! I also remember one night, probably 2 months post-injury, when I was told by a nurse that it was unlikely that I would gain any finger movement back and that people lived normal lives with the function I had but just needed PAs to help them. I struggled to comprehend how this was possible and how I would ever feel independent again.
This process of coming to terms with my situation and trying to feel “normal” and independent continued after I moved back to my parent’s house with a care package in place. This package consisted of having a team of 4 PAs with 1 PA working with me every 24 hours. It was a huge adjustment, not only for me but also for my parents, to get used to always having people in our space. To begin with, this sometimes prevented me from actually going out or doing things as I felt too conscious of needing support from my PAs.
I would sometimes limit what I did to only spending time with friends as I didn’t need a PA with me. I also struggled to find much in common with a couple of my PAs as they were 20 years older than me which made me feel self-consciousness around them. On top of this, it was incredibly difficult as a newly injured person to get used to telling people what I needed when I was still figuring out what worked well and what didn’t and what I could do without help. Often it was frustrating and I’m sure it was hard for my PAs too.
I spent only 6 weeks at home before I had to move away again to university and into student halls – this felt far too fast and I was not in any way prepared – I was still trying to adjust! My first semester was difficult as I lacked the confidence to put myself out there and meet new people which was important as I’m a sociable person and I didn’t live in a shared flat. I also felt held back by being in a wheelchair and having PAs around me constantly. But going on a Back Up ski karting course in Sweden at the end of my first semester was exactly what I needed to realise that things didn’t have to stay this way. The course was incredibly motivating and I came back with renewed confidence to take control of my life again.
Skiing in Sweden really did give me the push to start thinking about changing my care team. The setup limited me to certain changeover times and I didn’t feel entirely comfortable around my PAs as they weren’t always reliable. But I continued with that team for 2 more years because – despite my new-found confidence – I was worried that changing everything might be worse. However, in 2012, at a Back Up mentor training weekend, I remember a new friend telling me how his live-in care package offered him the flexibility to do what he wanted whenever he liked, and how comfortable him and his girlfriend were living with PAs. This motivated me to make the change. (Incidentally, this is one of the best things about Back Up – it offers people with a spinal cord injury the opportunity to make friends with people in similar situations who truly understand and can help you overcome issues).
I now use an agency who provide me with live-in PAs who stay for 2 weeks at a time. I have some great regular PAs – my main one, who has become a good friend, works 2 weeks on, 2 weeks off. Sometimes I have new PAs as the job attracts young people who enjoy travelling but the care managers have a good understanding of who I’ll get along with and it usually works really well. This change has enhanced my independence as I have more flexibility in my life and I am happier and more comfortable with the people who work with me.
I have learnt a lot along the way (and will continue to do so) about how to ensure my relationships with my PAs work. I am by no means perfect, but these are a few of the most important things I have learnt:
Feeling comfortable with PAs is essential. It is a close two-way relationship so we both have to get along well with each other for it to work. Everyone has very different personality traits and it may be that sometimes these clash. I try hard to get along with everyone and give it time, but if it isn’t working I have learnt to be OK with starting with someone new.
My care is my responsibility. Firstly, it is important to not rely on PAs to think for me – I should be in control of my own life. This requires being organised and explaining what I need in an understandable way. That said, this has been a difficult skill to learn and I try not to insult a PA’s intelligence by explaining the simplest of tasks or confuse them by listing loads of things at once! This obviously gets easier the more someone gets to know me. Secondly, I try to do as much as possible for myself without help. Sometimes this is a mental battle as I have to weigh up the exhaustion and time spent trying to do something on my own against actually getting it done so I can get on with my day and focus on my other goals (of which I have many!).
It is important to be honest and open. If there is an obvious issue or there’s tension in the house, I find it works well to talk about it to try make things right again. Don’t be afraid to apologise or to compromise. For the relationship to work well, both people need to be happy.
Be sensitive to each other. It is also important to remember that everyone has bad days and gets moody at times, myself included. If this is the case and it’s something small, or one of us is just tired, sometimes it’s not worth saying anything and it will all blow over.
Space is important. Especially with live-in care, we both need time to ourselves. I live with my boyfriend so we can just go out or I can see my friends. I do appreciate it’s a very difficult job for PAs to put their own life aside to help me live mine. That’s why it’s important that they have time to relax and do what they want, like go to the gym or head out for a walk.
In this way, the relationship is about mutual respect and teamwork – my PAs do become good friends and I enjoy having them around.
My life has changed so much since I was struggling to adapt to being dependent on others. Now, aged 26, like many other people in my position, I lead a fulfilling and busy life. I graduated from university (with a first!) and I am now studying towards a Masters with the aim of becoming a solicitor. I enjoy a range of sports, from wheelchair rugby to sit-skiing, and I love to travel. My favourite trips include sailing on a tall ship down the coast of Brazil, skiing in Colorado and driving through Italy. I have an active social life, a great boyfriend and I enjoy volunteering for Citizens Advice Bureau and Back Up. Having support from others to get to this point doesn’t take away from this, it’s made all of it possible.
Back Up has won the Snow Sport Industries of Great Britain (SIGB) Foundation’s award for ‘most deserving snowsport charity’. The accolade comes with a grant of £4,000 which will be used exclusively to help fund the charity’s ski courses in 2017.
The funding for the £4,000 grant is courtesy of The Slide Industry Trade Show – owned and organised by SIGB. The 3-day tradeshow is specifically for snowsport retailers.
Back Up was founded in 1986 to provide ski courses for people affected by spinal cord injury. 30 years on, the charity’s services have greatly diversified but Back Up continues to offer two ever popular skiing courses.
This year, 14 people will have the opportunity to learn to ski with Back Up in Sweden and Colorado. The participants will be able to push themselves outside of their comfort zone in an exciting and supportive environment.
The award was presented at a ceremony at The International Centre in Telford. Anna Turney, former GB Paralympic skier and Back Up ski course participant, was Back Up’s ambassador on the night. The tradeshow preceded SIGB’s AGM where the award was presented. Damon Street, President of SIGB said:
“Giving people who have sustained a life changing injury the chance to use skiing as a way to build confidence is fantastic. Back Up are a truly worthy recipient of the SIGB Foundation Award, and we are delighted we are able to contribute to their ski courses.”
Anna delivered a ‘passionate’ speech about the importance of Back Up’s work and the support it had given to her. Although the course isn’t for potential athletes, in the last 10 years alone 7 members of the GB Paralympic ski squad have been on Back Up’s skiing courses. After accepting the award, Anna said:
“Coming back home after the huge challenge of learning how to ski on a Back Up course makes the everyday challenges faced by the spinally injured seem much more manageable. This opportunity is truly life-changing, so support from the UK snowsport industry is massively appreciated.”
To find out more about Back Up’s Sit Ski and Ski Karting courses click here, or contact our courses team on firstname.lastname@example.org or by telephone on 020 8875 6741.
I have always been a very active, outdoorsy girl. I love going out with friends, being sociable and spending as much time as possible with horses! I started riding at the age of two and, before the accident, I had my dream job working for a top event rider. As her Head Girl, I would look after all the horses and ponies and help train them for competition. I was very happy, working every day in a job that I loved and I had a great bunch of friends around me.
In May 2015, I was on my way out for a night of laughs and smiles with my mates. Never did we realise that five minutes down the road a life changing event was waiting for all of us. A van travelling in the opposite direction made the decision to overtake on a bend, hitting us head on, leaving me paralysed and, the worst part, taking my friend’s life.
The first few weeks after the accident are a complete blur. I can’t imagine how my parents and brothers must have felt seeing me in a coma and being told that I only had a 5% chance of survival. I was brought out of the coma four days after the accident and following two life-saving operations. My first memory was asking where my friend was. It was down to my father to tell me the news. I didn’t understand what he had told me and just felt very numb. I felt a lot of guilt that I had survived and my friend hadn’t so I struggled to start my rehabilitation as I didn’t think it was fair that I was still here. All my friends and family would tell me that she would want me to get better so I thought all I could do was fight.
I had many severe injuries as well as a complete spinal cord injury which left me paralysed from the waist down. After nearly a week I was transferred from Dorchester hospital to Salisbury spinal unit. They stabilised my spine and once that was done I started the long, gruelling process of rehabilitation.
What had happened to me never really hit home until about the third time I was hoisted into the wheelchair. My legs were just dangling there and I had no control over anything I was doing. I couldn’t believe this was now my life. I had gone from living on my own, riding horses everyday to being hoisted into a chair and having to push myself around to get anywhere. I felt like I had lost everything. It took a lot of courage to finally accept this was going to be my life from now on, but with the help of other patients and talking to them about their experiences, I finally felt like I was ready to start adjusting to my new situation.
When I started basic wheelchair skills and physiotherapy, I remember feeling weaker than I had ever felt. But the more I did, the more I started to feel more capable. Even just carrying a glass was hard at first, but they showed us how to make it possible. It was all about finding ways that suit you and working around the problems. But being in a hospital is different to the world outside. Everything is easier there. The floors are smooth, doors open easily and everything is accessible to wheelchair users. I started to feel like I was in a protective bubble so I knew leaving that safe space was going to be a huge challenge.
The hospital staff told us about a charity called Back Up. They said if you ever get a chance to go on one of their courses, you have to go as you will learn so much. The Multi Activity course in Exmoor offered wheelchair skills training and activities such as cycling, canoeing and abseiling – things that I never thought I would be able to do after my injury. I was so nervous to go on the course as it was the first time away from my family since the accident and I really didn’t feel comfortable in my wheelchair yet. But it was one of the best decisions I ever made. I came away from that week with so many new skills for using my wheelchair and felt much more confident.
The Snowdon Push was mentioned when I was on the course but it was only a month away at the time. It sounded like an incredible challenge, working with a team of people to reach the summit of Mount Snowdon in my wheelchair. I spoke to my friends and family and managed to get a team together, start fundraising and find a chair – in just one month! The team at Back Up were so encouraging and helped find a chair for me to use. At the time I remember saying to myself ‘are we really doing this?’ I think I was most nervous about actually having to camp. I was never a big fan of camping before but now I had a lot more worries: how am I going to get into a tent? what will I sleep on? where are the toilets? But despite my fears, it was so much fun (and I’ve never been so comfortable in a tent!)
The last thing I wanted to feel was that I was just sitting there whilst my friends and family were pulling and pushing me so I made sure that I was always vocally encouraging and supporting the team. I helped them by looking for the easiest route we could take up the mountain, and I made sure that everyone on the team was happy and motivated. I really felt like I was fully in control, through helping and inspiring everyone to reach the top.
It was such an amazing achievement that I never thought would happen. It just shows that a spinal cord injury doesn’t stop you living your life, you just have to be a bit more creative and adapt to new challenges. The highlight of the experience was when we crossed the finish line as a team all smiling and cheering. All the teams did an incredible job and everyone there supported each other and had a fantastic time.
Doing the Snowdon Push made me realise how much was still possible for me. Since being back home, I have moved into a property by myself as I feel so much more capable doing things on my own. I am riding twice a week on a new pony that I bought and I’m working towards my first official para dressage competition. My main goal after the crash was to still be as active as I could be and Back Up have helped make that possible by introducing me to different activities and new people. Getting back to riding competitively will be a huge challenge for me, but with all the help and support that is around, I know I can do it.
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.
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 email@example.com or click here.
For Urology Awareness week, we want to share 5 tips for people with a spinal cord injury when they are travelling by plane.
It’s good to bring catheters in your hand luggage and your checked baggage so you’re covered for all eventualities. Don’t forget to also bring all your medications and a prescription in case they query you during security.
Try to organise your bowel routine around your flight and make sure you’ve been to the toilet before you board to drain your catheter. Sometimes it can take longer to board than expected so it’s best to go just beforehand. It’s also worth checking that there will be an aisle chair on the plane too, should you need it.
Once you’ve boarded the plane, take on liquids but just be aware of what you’re drinking. Anything that contains caffeine is a diuretic and should be avoided if you’re worried about needing to go to the loo too much
You shouldn’t assume that you’ll be able to use the toilet on board so have a plan of action. And even if you can transfer independently, airplane toilets can be tricky to manoeuvre in. One of service users suggests, ‘I like to bring a leg or a night bag with me because often airplane toilets are too small to use.’ An empty bottle can be useful to drain your catheter into and sometimes planes provide a blanket that will allow you to do it discreetly. If you’re a high level injury, you can discuss your plan of action with your PA prior to flying.
If you’re going on a long haul flight then it’s advisable to bring a pressure relieving cushion to avoid getting marks. Loose clothing can also help avoid pressure sores.
If you would like discuss your concerns around flying, get in touch with our Outreach & Support team on 020 8875 6723. They can refer you to people who can discuss your catheter requirements and any other questions you may have.
Research found that adults with spinal cord injury who were injured in childhood are less likely to live independently. However, with the right support, young people can live happy and fulfilling lives. Here, Katie, one of Back Up’s youth advisors, answers to a few questions about challenges she faces and how Back Up has helped her to adapt to life with spinal cord injury.
As a young person living with spinal cord injury, can you explain what independence means to you?
It means doing things on my own like anyone else my age would do and showing that I’m not incapable because I’m in a wheelchair.
What is the biggest challenge you face in order to be fully independent?
I experience a lot of pain and fatigue. I struggle sometimes to get around on my own and I need someone to push my wheelchair, carry my things or drive me places. I also experience anxiety – a lot of the time I’m too anxious to do something without someone there or doing it for me.
Do you think your friends (without spinal cord injury) are more independent compared to you?
Yes, I think they are. They tend to travel further afield and do more things than I do. When planning to go away, they seem to be okay to travel alone, whereas for me it takes a lot of planning and help from parents to ensure everything is there.
How has Back Up helped you to rebuild your independence?
Back Up has really helped me to regain independence. On my first Back Up course, I relied on my parents for everything. I didn’t do anything on my own. Within the week, I learned to do more by myself. When I came home my parents were amazed at the change in me. Since then, I have gone on weekend with Back Up, volunteered and stayed in places on my own. Without Back Up, I wouldn’t have done any of that.
What are your plans for the future?
I’m not really sure what my plans are. But I want to work with children or in a setting where I can help other people, as well as continuing to volunteer.
Back Up is the only charity with dedicated services for children and young people with spinal cord injury. You can find out more about our work here