New estimates by Spinal Injuries Association, Aspire and Back Up – three of the leading charities providing support to spinal cord injured people – show that the number of people paralysed by a spinal cord injury is much higher than previously estimated. The charities are calling on all government departments to ensure that every spinal cord injured person has the care and support they need and deserve to lead a fulfilled and independent life.
Using the NHS’s own statistics, as well as data from other countries, the charities estimate that the number of people injured or diagnosed with a life-changing spinal cord injury in the UK is 2,500 per year, whilst the total number of people living with a spinal cord injury in the UK is 50,000. 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.
The charities attribute the increased figures mainly to improved reporting and record keeping as well as a more inclusive definition of spinal cord injury which includes non-traumatic causes such as illnesses as well as accidents. Additionally, medical advances now mean that life expectancy for people living with a spinal cord injury is broadly the same as non-injured people.
Not only are very many more people now known to sustain a spinal cord injury than previously estimated, but the nature of injury has also changed. The NHS’s own recently published data shows that the stereotypical view of a spinal cord injured person as a young man who has come off a motorbike is reducing. More older people are sustaining a spinal cord injury through, for example, falls in the home, more women are sustaining an injury and more people being diagnosed with an illness or condition, such as Cauda Equina Syndrome or cancer, that leaves them paralysed. Additionally, the research indicates that only between one third and half of recently injured people are able to access specialist NHS care and those that do can expect lengthy delays prior to admission.
Nik Hartley OBE, Chief Executive of Spinal Injuries Association said. “The revelation that there are hundreds more people across the UK that are now known to sustain a spinal cord injury every year is stark. But it is not just the increased numbers; it is the decreasing provision of specialist services alongside that, 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 are having to come to terms with a life of paralysis from spinal cord injury. We will not stop fighting until that change in investment happens.”
Brian Carlin, Chief Executive of Aspire said. “Whilst we believe that anyone with a spinal cord injury should have access to the specialist rehabilitation available at Spinal Injury Centres, the revised figures here show that so many people are missing out on this vital care. As we call for increased resources to be made available to the specialist Centres, so it is crucial that we find new ways to reach those who never make it to a Spinal Injury Centre. We will be ensuring that all the organisations and decision makers that we work with have a better understanding of the needs of people who have been paralysed by a spinal cord injury. The revised figures mean that it is more imperative than ever to make long-term plans for the services offered to spinal cord injured people throughout the UK.”
Sarah Bryan, Chief Executive of Back Up added. ‘’The new statistics show that there are over twice as many people out there who need our help – people who may have never received specialist support at a spinal centre and have no idea where to turn for help. This is deeply troubling to us, as we know that having the right support at the right time is key to making a positive start to life after spinal cord injury. At Back Up we are determined to expand our reach so we can be there to support all these people with our peer led services to get the most out of life.’’6
About The Spinal Injuries Association
Spinal Injuries Association (SIA) is the leading national user-led charity for spinal cord injured (SCI) people. We understand the everyday needs of living with a spinal cord injury meet those needs by providing services to share information and experience and campaigning for change, ensuring each person can lead a full and active life.
Aspire is a leading national charity that provides practical support to people who have been paralysed by Spinal Cord Injury, helping them move from injury to independence. Aspire exists because there is currently no cure. Our services include Grants, Accessible Housing, Independent Living, Welfare Benefits Advice, Assistive Technology, Campaigning and Research. For more information, visit www.aspire.org.uk.
Back Up is a national charity that inspires people affected by spinal cord injury to get the most out of life. Each year, they reach over 1,000 people with their award-winning services that are designed and delivered by people affected by spinal cord injury. With a team of over 400 volunteers, they offer wheelchair skills training, an accredited mentoring service, telephone support, life skills and activity courses, and support returning to work or education. Back Up also offer support to family members, and they are the only UK charity with dedicated services for children and young people with a spinal cord injury. Find out more at www.backuptrust.org.uk
- The number of people being injured or diagnosed each year in the UK with a spinal cord injury is now estimated to be around 2,500 – 35 per week. Previously the estimate was 1,000.
- In the UK it is now estimated that there are around 50,000 people living with a spinal cord injury. Previously the estimate was 40,000.
- The annual NHS Specialised Spinal Cord Injury Services Annual Statement has now been published for the last two years. In 2017/18 (the most recent year for which we have full statistics), 2429 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.
- Whilst we know we will never have a precise figure, we have used a variety of sources and methods to triangulate the yearly incidence of SCI as well as the size of the total population. This has included an examination of the NHS’s own national statement, discussion with NHS statisticians, consultants as well as looking at comparative international studies which give incidence and prevalence per million of population