That’s why, each day, Stoke Mandeville Spinal Research does the same, thinking long and hard about how we can make life livable for people with spinal cord injury. With new medical breakthroughs, technological innovation and social insight – and your generous support – we can do more to help people get on with life after paralysis.
Stoke Mandeville Spinal Research brings together the spinally injured, carers, healthcare professionals and researchers to:
As a charity, we can’t do it alone. We work closely with the National Spinal Injuries Centre at Stoke Mandeville Hospital and other spinal centres. And with you, through the generosity of your donation.
Please continue to do so, because your support helps people see there’s life after paralysis.
Founded in 2006, Stoke Mandeville Spinal Research is a national charity that promotes excellence and sustainability in applied clinical research into spinal cord injury. Motivated by the needs of people in the National Spinal Injuries Centre, our vision is to enable people with spinal cord injury to have life after paralysis without the setbacks of debilitating health complications.
Ludwig Guttmann first came across spinal cord injury when he was volunteering as a medic in Germany in 1917. He went on to study medicine in 1918, and by 1933 was considered the top neurosurgeon in Germany.
In early 1939, he left Germany because of the Nazi persecution of Jews, and was able to settle in Oxford, where he continued his research into spinal cord injury at the Radcliffe Infirmary.
In September 1943, the British government asked Dr Guttmann to establish the National Spinal Injuries Centre at Stoke Mandeville Hospital. When the centre opened on 1 February 1944, Guttmann was appointed Director (a position he held until 1966). He believed sport played a significant role in helping injured military personnel to build up physical strength and self-respect.
Guttmann went on to organise the first Stoke Mandeville Games for disabled personnel on 28 July 1948, the same day as the start of the London 1948 Summer Olympics. Dr. Guttmann used the term paraplegic games in order to encourage his patients to take part – which later became known as the Paralympics – and subsequently took the form of the parallel games to the Olympics, to include other disabilities.
Stoke Mandeville Spinal Research is a member of the Association of Medical Research Charities (AMRC) and governed by a Board of Trustees that oversees our charitable aims. In addition we are a member of the Institute of Fundraising. The trustees meet regularly to discuss and review our reports and updates from our team. Our trustees work for SMSR voluntarily and provide a wealth of experience, support and advice to the charity.
Peter has become a widely respected commentator on risk in all its forms, working with Thomson Reuters. Injured on an assignment in Sri Lanka, Peter became a tetraplegic, bringing new perspective to his life.
One of the successors to Dr Ludwig Guttmann at Stoke Mandeville Hospital, Professor Frankel continued the tradition of dedicated care, learning, and research at this institution. His contribution to SCI care and research is immense and still continues into his retirement.
Amanda has over 25 years’ experience of fundraising, publishing and marketing for not-for-profit organisations in the UK and overseas. She currently manages major fundraising campaigns for Buckinghamshire Healthcare NHS Trust, alongside consultancy and voluntary work for other healthcare, research and membership organisations.
Richard Tolkien has worked in the financial sector for over 30 years, now acting as a non-executive director for two companies and an independent expert witness. His brother David had a spinal cord injury in 1982 and spent nine months rehabilitating at the NSIC. Richard’s passion for Stoke Mandeville Spinal Research continues to be motivated by the memory of his brother, who despite overcoming numerous health complications throughout his life, sadly passed away in 2014.
Dr van Middendorp was appointed Research Director at Stoke Mandeville Spinal Research in March 2012. He began his medical and scientific career in the Netherlands and continued conducting clinical research in Brisbane, Australia. Having successfully developed the SMSR portfolio of projects, and achieving highly acclaimed results, he moved to the Netherlands to become a medical adviser for Pfizer. He is now the Medical Science Manager for Sobi (Swedish Orphan Biovitrum AB).
Mr Henderson is a co-opted member of Stoke Mandeville Spinal Research. He is Clinical Director of the National Spinal Injuries Centre.
In 2000, Jamie had a diving accident that left him paralysed from the chest down. Following this life changing incident, Jamie decided work needed to be something that he really loved doing, so he left the city and set up his own art dealership – the Animal Art Fair. Jamie is a passionate supporter of SMSR and helps raise awareness of the vital work we do through our Ambassador programme.
Nigel worked in the healthcare sector for twenty-four years firstly as a senior executive in NHS finance and support services and subsequently as an independent management consultant undertaking a wide range of finance and transformation projects within the NHS and elsewhere. He is a Chartered Secretary with an interest in governance issues and is also a practicing accountant. We are delighted that Nigel has agreed to be our Honorary Treasurer as well as a Trustee.
We were delighted that Professor Robert Brownstone became a trustee of SMSR in 2017. Professor Brownstone works at UCL in the Sobell Department of Motor Neuroscience. Here, work in the lab aims to understand how motor circuits contribute to rehabilitation of movement in disease or injury. As movement is affected in many neurological conditions, his research program has widespread impact for the development of new strategies to improve movement in people with neurological disorders. He joined UCL from Dalhousie University in Canada, where he was a Professor in the Departments of Surgery (Neurosurgery) and Medical Neuroscience, and a neurosurgeon at the QEII Health Sciences Centre in Halifax, Nova Scotia.
We were delighted that Professor Christopher Mathias became a trustee of SMSR in 2017. He is Professor of Neurovascular Medicine in the University of London, with an appointment held jointly between the Faculty of Medicine, Imperial College London and the Institute of Neurology, University College London. He has been a Consultant Physician at St Mary’s Hospital since 1982 and at the National Hospital for Neurology and Neurosurgery, Queen Square, since 1985.
James graduated from the University of Southampton in MSc Public Health Nutrition (2010). Since graduating he has worked in Dietetics and more recently in clinical research as a Research Support Manager at Oxford University Hospitals NHS Foundation Trust. James is excited to be joining the team as NIHR Research Manager for the PReSUTINEeB trial. This involves assessing the effectiveness of a new vaccine for the treatment of urinary tract infections. Those with paralysis are particularly prone to such infections due to damage to internal organs such as the bladder caused by spinal cord injury.
Bashak grew up in Cyprus and studied at the University of Hull where she undertook undergraduate and postgraduate study, gained clinical experience and won numerous awards. She is looking forward to submitting an ethical application for her multi-centric study identifying research priorities for young people with spinal cord injury.
Bethel joins us from University of Glasgow having recently complete his PhD. He looks forward to joining SMSR and combining his engineering background with the latest cutting-edge rehabilitation techniques.
Charlotte began her fundraising career at Macmillan Cancer Support, and has since worked for a range of different causes. She is passionate about working closely with supporters to ensure that every penny raised is maximised and appreciated.
Patricia is a respected communications consultant whose extensive experience in the media and public relations industry spans more than 25 years’. Passionate about healthcare, Patricia has lead a number of successful patient advocacy campaigns for both corporate and not-for-profit healthcare organisations in both the UK and across Asia Pacific.
Emily completed her Physiotherapy degree at Oxford Brookes University in 2008, during which time she spent time on clinical placement at the NSIC. Emily moved to Cardiff where she completed a wide range of specialties including intensive care and spinal rehabilitation. Emily worked at Welsh Spinal Cord Injury Rehabilitation Centre at Rookwood hospital for 1 year and then specialised in respiratory care for a number of years. Emily moved to NSIC in 2014 to work in spinal cord injuries. Since working at the NSIC Emily has managed a busy adult inpatient caseload and over the last year has worked with adults and children. Emily is excited to start the next chapter in her career in the field of research alongside her clinical work.
Ali sustained a spinal cord injury in 1996. She went on to study at the University of Nottingham and graduated in 2006 with a first class honours in Psychology. Ali is passionate about peer support and maximizing the outcomes of rehabilitation following spinal cord injury and other long-term neurological conditions. She has proven experience of academic and clinical research, clinical trial management, peer support, mentoring and public speaking. Having first-hand experience of living with the impact of spinal cord injury, Ali is committed to supporting research that aims to improve people’s quality of life following spinal cord injury. In her current position as Corporate & Community Liaison Officer for Stoke Mandeville Spinal Research (SMSR), she works closely with key stakeholders and in the community to raise awareness of living with spinal cord injury and to discuss the research that that is being undertaken by SMSR.
Here are some of the people who have experienced a major change in their life, adapted to it and made a success of it. Their stories are an inspiration to us, and hopefully to you.
Here, Nick tells us in his unique way about the difference SMSR is making…
Bony Buns, Phantom Limbs, Snakes and Bladders: The Trials of Living and Working with Spinal Cord Injury.
Stoke Mandeville Spinal Research was founded in 2006 with the vision to enable people with spinal cord injury to have a life after paralysis, without the setbacks of debilitating health complications. Nick, a Copy Writer at TBWALondon, became a trustee of SMSR following his spinal cord injury 23 years ago. Here he candidly speaks of his experience and of the incredible work done by Stoke Mandeville Spinal Research.
December 1994. There I was in intensive care; a ventilator shushing in my ear, a thousand questions racing through my mind.
I knew that a freshly broken neck meant I would never walk again. But what came was a surprise to me was the abrupt disconnect to my arms, hands, torso, skin sensation, lung function, bladder, bowels, nervous system, thermo-regulation and more.
Spinal Cord Injury is a highly complex condition, with the loss of mobility just one of a host of complications which can severely hamper quality-of-life.
It’s why I welcomed the invitation to become a trustee of Stoke Mandeville Spinal Research, a charity researching ways to improve life after paralysis.
Here are just some of the issues & research that they’ll be hoping to raise money and awareness for as the official charity partner of the European Neuro Convention.
And please forgive the occasional dark flippancy; it’s a coping strategy:
Being wheelchair-bound is infinitely more frustrating when you can’t even use the chair because of a pressure sore. With no movement or sensation below the waist, and with muscle mass wasting away, the sustained pressure of sitting on your bum can lead to skin breakdown. Spinal injuries units around the world are stuffed full of people who have had to come back for surgery on pressure sores.
SMSR is working with Liverpool University to trial new ‘shorts’ that deliver electro-stimulatoin to affected areas as a means of preventing pressure sores.
THE PHANTOM MENACE
An estimated two-thirds of spinal cord injured live with neuropathic (chronic) pain. It’s nerve-ending pain, like when an amputee can still feel his or her missing limb, and though it is sometimes also referred to as phantom sensation, the pain is very real and very debilitating. Myself, I’ve been luck, but I have seen other spinal injuries utterly consumed by it.
SMSR is embarking on a new project which will harness global expertise to improve the measurement and control of pain
SNAKES AND BLADDERS
UTI stands for Urinary Tract Infections. Spinal Injuries are particularly prone to them because many of us use indwelling catheters [Yes, ouch!] Once infection takes hold, things get ugly in a hurry. I woke up one morning with wee the colour of sunset and a vague headache. I regained consciousness a week later, back in intensive care fighting sepsis. F-word you, UTI
SMSR is conducting a trial of a vaccine which has the potential to prevent persistent UTIs
Imagine how frustrating it is to be able to reach for your beer but lack the grip to pick it up. Many higher legion spinal injuries have bicep and tricep control but extremely limited finger dexterity, making day-to-day tasks difficult.
SMSR is trailing the SEM Glove which mimics hand function and enables individuals to grasp and pick things up
BEING TOO YOUNG
“You’re too young to be in a wheelchair!” a sceptical steward once told me at wheelchair ticket gate at Wimbledon.
If I’m too young, then spare a though for the children and teenagers who have suffered spinal cord injury. For their recovery and rehabilitation trajectory can be markedly different to adults. This is why SMSR is collaborating on a pan-European project to raise awareness and effectiveness of paediatric spinal cord injury treatment.
SMSR is at the heart of a European Study identifying the unique needs of young people with spinal cord injury. This research and all our other projects are carried out with their future in mind.
Their whole lives are ahead of them. Help us make it a long, productive and enjoyable one.
To find out more and make a donation visit www.lifeafterparalysis.com
In 2000, I had a diving accident that has left me paralysed from the chest down. I decided work needed to be something that I love doing, so left the city and set up my own art dealership – the Animal Art Fair.
Urinary tract infections drive me up the wall. You can be as careful as you like but they still strike unexpectedly. That’s the difficulty. You cannot be sure, you cannot commit to things, and it really affects my business. Meetings have to be cancelled, clients are let down, artists get frustrated, and you cannot really give them the reason behind it.
I’m really excited that Stoke Mandeville Spinal Research is focusing more on the day-to-day impact of spinal cord injury. The sooner we can clear up UTIs, the sooner I can work on a level playing field.
In 1996 my motorbike collided with a tractor pulling an 18 tonne trailer that ran over my chest. I broke my T6-T8 vertebrae so am now paralysed below T6. I was a fit an active 24 year old who’d been working in the Royal Air Force for 8 years, losing use of my legs was one of the worst things imaginable to me. I spent the following 7 weeks in the Intensive Care Unit and I don’t have much recollection of that time, or of the accident itself.
I have now been working at the National Spinal Injuries Centre for 4 years. Since my injury I have continued to ski, scuba dive and cycle as well as abseiling and other activities. I have done a couple of charity cycle rides: London to Paris, and London to Amsterdam. I am probably most proud of having qualified as a scuba diving instructor subsequent to my injury.
It’s so important for people to get on with their life after injury and not to wait for a cure. There are many things that can affect your everyday quality of life. Things such as bladder care, bowel care and prevention of pressure ulcers; any of these three things, even individually, can stop an individual from being an active member of society and seriously affect self-esteem and psychological well being. Another important thing, which for me was always a priority, was to get back in to work. I wanted to be earning and feeling like I was contributing. To paraphrase Ludwig Guttmann, rehab isn’t over until you’re a taxpayer again.
In June 2008, I was involved in a car accident whilst driving back from my second year at university, in which I crushed my T10 to T12 vertebrae and became paralysed below the middle of my back. After a week in intensive care, I was transferred to Stoke Mandeville National Spinal Injuries Centre, where the nurses, physios and doctors taught me how to go back to living a ‘normal’ life, but now in a wheelchair.
I spent 10 weeks at the NSIC and then returned to Oxford to finish my degree. Whilst in hospital I watched the Beijing Paralympics and was in awe of the competitors I saw on screen, particularly the wheelchair track athletes. Therefore sport, which I had always participated in before my accident, became a huge part of my rehabilitation.
After graduating, I went on to represent Great Britain on the track, alongside working in Commercial Negotiations at the London 2012 Olympic Organising Committee. I proved to myself that being in a wheelchair didn’t stop me from achieving my goals – it actually pushed me to reach for even bigger ones.
I now work for a company called Tough Mudder which puts on big endurance events, running our commercial deals across Europe. This means lots of travel to our New York HQ, and around Europe which I find really easy with my wheelchair. However, travelling across London from Fulham to the City, where our London office is based, is far less easy!
I think it’s vital that SMSR continues to focus on issues affecting the quality of life for people with SCI. It’s all very well other foundations working to find a ‘cure’ for spinal cord injury, but in reality that is a long way off and is unlikely to be effective for someone who has been injured for a long time.
In addition, I really do feel that had I not broken my back and become a wheelchair user, I wouldn’t have had such incredible experiences, from traveling the world representing my country to working with incredible businesspeople.
For me then, the priority is continuing to make sure that my wheelchair doesn’t stop me living life as I want to live it – whether that be through prevention of pressure sores and infections or through improving technology. This is why I fully support the work of SMSR.
I began riding seriously at the age of 11 and was lucky enough to have been bought my first pony, with whom I competed in local show jumping and one day events. In March 2009, I entered my first season in British Eventing and began with promising results. On the 31st May 2009, I was approaching the final fence in a one day event when both my horse, and I, fell. I landed on my head and suffered a head and brain injury which, after many months in rehabilitation, left me unable to walk or talk and with left sided hemiplegia. After extensive rehabilitation I proudly represented Great Britain in Para Dressage in July 2013.
However, on the 18th December 2013, I was involved in a head on car accident. I suffered another bleed to my brain and lost the use of my arm among other more minor injuries. After weeks of physiotherapy, it was discovered that the three main nerves connecting my spinal cord to my arm; c5, 6 and 7 had become detached, and without surgery I would have no hope of recovery. In April 2014, I decided to undergo the six and a half hour operation in an attempt to regain some use. I am now working hard in my physiotherapy and rehabilitation in order to return to competitive riding.
The complications that come with an injury to the spinal cord are challenging, for me losing the function of my arm, make chasing my dreams of riding much more difficult, but I will never give up. My motto throughout has been: ‘look forward, don’t dwell on the past, turn every negative into a positive, and never let your disability hold you back or determine who you are.’