The Spinal Injuries Association leads the way in supporting people with spinal cord injuries

Spinal Injuries Association Leads THE WAY FOR SUPPORT FOR SCI PEOPLE

Spinal Injuries Association (SIA) is the expert voice and leading source of support and information for people with spinal cord injury (SCI). For more than 45 years, we have helped spinal cord injured people throughout the UK lead fulfilled lives and represent the wider SCI community at government and national level.

From the moment of injury and throughout life beyond, the SCI community wants expert advice and support, and we are here to show that no one need be alone. We are also

Sophie Davis incredibly proud to be a user-led organisation that reflects the views of our 13,300 members. WHAT IS SPINAL CORD INJURY?

NEW ESTIMATES REVEALED

Recent estimates show that the number of people paralysed by spinal cord injury is much higher than previously thought and because of this, SIA is calling on all government departments to ensure every injured person has the care and support they need and deserve to lead a fulfilled and independent life.

There are about 50,000 people with a spinal cord injury in the UK and some 2,500 are injured or diagnosed each year – one person every three-and-a-half hours. Previously it was widely believed, including by the NHS itself, that only 1,000 people were injured or diagnosed each year and that the total number of people living with a spinal cord injury was 40,000.

Nik Hartley OBE, the Chief Executive of Spinal Injuries Association, said: “The revelation

that there are hundreds more people across the UK that will sustain a spinal cord injury every year is stark. However, it is not just the increased numbers; it is the decreasing provision of specialist services alongside this, that is truly shocking. The NHS and wider government must dramatically increase vital and extremely specialist health care and support to the 2,500 people each year who have to come to terms with a life of paralysis as a result of spinal cord injury. We will not stop fighting until that change in investment happens.”

The spinal cord can be damaged through accident and injury or because of a health condition that is either diagnosed at birth or later developed, such as a tumour or cauda equina syndrome. Just over half of all new cases are because of injury, while the rest are due to infections or tumours of the spine.

For many, this is a life-changing and permanent disability that causes paralysis and loss of sensation below the level of injury. This can mean being unable to walk or losing control of bladder and bowel function. Those with a high-level injury may also have limited or no hand and arm function or be reliant on a ventilator to breathe. Some people may retain the ability to walk, but they may experience other complications.

However acquired, spinal cord injury can be devastating. SCI people and their family and friends will also have to come to terms with the psychological impact of a life-changing disability that affects every aspect of their own lives and the lives of those closest to them. Alongside others with disabilities, SCI people also face inequality and adversity. Poor accessibility to buildings and transport, employment discrimination, poor care packages and an

assumption of mental incapacity are just some of the challenges SCI people confront daily. Nonetheless, SIA believes that with appropriate support, SCI people can – and do – lead fulfilled lives, making a worthwhile contribution to society and family life.

HOW WE CAN HELP

Our Support Network team, who all have personal experience of SCI, help newly injured people from the moment of injury or diagnosis, through rehabilitation and beyond. They also support those with longer-established injuries. Our Public Affairs team campaigns for change and fairness, lobbying government and other decision-makers, while our advocacy experts provide support with health and social care matters. Our SCI Nurse Specialists help drive improvements in the quality of care and nursing standards across the SCI community. Our freephone telephone Advice Line answers more than 2,000 calls a year to provide guidance on topics, including access, specialist rehabilitation and benefits. Our magazine, FORWARD, provides the SCI community with a wealth of information on everything from health and daily living to employment. The SIA Academy delivers education and training to professionals through study days, competency training and courses for solicitors, caseworkers and expert witnesses.

OUR SUPPORT GOES A LONG WAY

SIA member Miranda Jenks sustained a spinal cord injury when she was 21 years old. After six weeks in a district general hospital, she was discharged home with little information.

“Being in hospital was a scary time,” she says. “I was a

young woman surrounded by older people, and there was certainly no support network available. I felt lost and alone and was searching for information.”

The search for that palpably absent support in hospital led Miranda to SIA, and our Advice Line and Support Network team. “Sometimes I wonder where I would be now if I hadn’t picked up the phone that day,” she says. “It is

comforting just to know that SIA is there with so much knowledge and experience. It’s been amazing.”

SPINAL INJURIES ASSOCIATION

Freephone Advice Line: 0800 980 0501 Email: sia@spinal.co.uk Website: www.spinal.co.uk Registered Charity No. 1054097

Spinal Injuries Association (SIA) is the leading national user-led charity for spinal cord injured (SCI) people. We understand the daily needs for life with a spinal cord injury, and we meet those needs by providing services to share information and experience, while also campaigning for change to ensure every person can lead a full and active life. An estimated 2,500 people each year – 48 per week – are injured or diagnosed with a spinal cord injury in the UK. Previous estimates put this number at 1,000. About 50,000 people live with a spinal cord injury in the UK. Previously, the estimate was 40,000. The NHS Specialised Spinal Cord Injury Services

Annual Statement has been published for the last two years. In 2017/18 (the most recent year for which we have full statistics), 2,429 new patients were referred to the eight specialist centres in

England and there were 864 new admissions.

However, many more people with a spinal cord injury are not referred at all and do not benefit from the specialist care and support available. We have used a variety of reliable sources and methods to estimate the yearly incidence of SCI and the size of the total population. This includes an examination of the NHS’s annual statement, discussions with health service statisticians, consultants and analysing comparative international studies that give incidence and prevalence per million of population.

Find out more about Spinal Injuries Association at www.spinal.co.uk