The Spinal Injuries Association (SIA) have published their latest report on the needs and priorities of people living with spinal cord injury (SCI) in the UK. SIA's annual 'What Matters?' survey aims to better understand the difficulties that people with SCI face, to inform and focus their awareness-raising campaigns and support work. The 2025 'What Matters?' survey was carried out over six weeks in early 2025 and asked the SCI community and those who care for them about the issues which most commonly challenge their physical and mental health and inclusion in everyday life. SIA received 934 responses, including 761 from people with spinal cord injury. SIA's 'What Matters Report 2025' shares the results of that survey, which show that people with SCI continue to face barriers to equitable health care, employment and inclusion in multiple areas of everyday life. The charity say that this highlights the urgency of their ongoing work to ensure that everyone affected by SCI can access the right support, at the right time, from people who truly understand their needs. What are the findings of SIA's 'What Matters Report 2025'? According to SIA, around 105,000 people are currently living with spinal cord injury (SCI) in the UK, with an estimated 4,700 new spinal cord injuries occurring or being diagnosed every year. SIA's survey of the SCI community focussed on the issues faced by people with spinal cord injury which affect their body, mind and everyday life. They found that the top priority for people with SCI in 2025 was accessibility of general medical services and testing, and concluded that too many people with spinal cord injury are struggling to navigate a health and care system that doesn't understand them, represent them, or meet their needs. Access to health care for people with SCI SIA found people with SCI are concerned about hospital admissions and accessing standard health care services, owing to varying levels of understanding of spinal cord injury in non-specialist care settings. Their worries were echoed by 30% of the healthcare professionals who responded to the survey saying that training and specialist knowledge of staff is a challenge that they face when treating people with spinal cord injury. In addition, 21% of the healthcare professional respondents said that staffing levels were a challenge to their work. SIA found that 40% of survey respondents who had been eligible for cervical screening in the past five years, had not attended for the test, largely as a result of accessibility issues. Nearly half (47%) of the survey's SCI respondents had been hospital inpatients in the past two years. Bowel management was a severe challenge for them, with 46% feeling that their bowel care was managed poorly, with more than a fifth (22%) still waiting for their bowel function to return to normal following their hospital admission. In the past two years, 16% had experienced poor bowel care in a hospital setting, 10% in a community setting, and 10% had had poor bowel care in both hospital and community settings. Nearly one in five spinally-injured respondents had had a pressure ulcer in the past year, of which nearly a quarter said it wasn't diagnosed or treated correctly. 29% of those who shared more information with SIA about their pressure sore experience said their pressure sores were either caused by or worsened by poor standards of care. More than half (53%) were not moved regularly or helped to change positions, and only 46% were given a mattress designed to help prevent pressure ulcers and skin damage. SIA pointed out that any of these simple actions could have prevented the development of pressure ulcers. In addition, despite the acknowledged shortage of SCI-trained hospital staff, more than half of the SCI respondents who had been in hospital but had their own care team weren't allowed to have their own carers in hospital to support them. Nearly a third (30%) of respondents with an SIA Essential Care Passport (ECP) (which provides important information about their needs in the event that they are hospitalised) were unable to use their ECP whilst in hospital. Mental health concerns for people with SCI SIA's 'What Matters Report 2025' says that 65% of survey respondents with SCI had faced mental health challenges, more than doubling the UK average. Despite this, 72% still did not have access to counsellors or therapists with the appropriate specialist knowledge to help them. The most common mental health challenges suffered by people with SCI were depression (83%) and anxiety (77%). Just over a third (34%) had experienced PTSD, in some cases caused by the injury, and a similar number had experienced suicidal thoughts. Others had experienced obsessive-compulsive disorder, substance abuse and addiction. Nearly a third (31%) of survey respondents with SCI were not discussing their mental health support needs with anyone. 69% felt able to discuss them with healthcare professionals or family and friends, and 17% had reached out to SIA for support. Respondents said that barriers to accessing support with mental health issues included a lack of access to counsellors and therapists who understand SCI (72%), a lack of access to general mental health and wellbeing services and support (53%), and a lack of support with specialist rehabilitation (48%). Challenges faced by people with SCI in daily life SIA's 2025 'What Matters?' survey clearly highlighted that living with spinal cord injury not only reduces access to mental health and specialised health and care support, but also involves navigating everyday life in a society which neither understands the needs of people with SCI nor is properly equipped to help them thrive. Many respondents with SCI told SIA that their injury completely or significantly prevented them from accessing employment (50%) and hobbies (64%). Personal finances were also affected, with respondents having difficulty accessing benefits (70%), funding care needs (61%) or accessing social care support (60%). A top priority for people with SCI in 2025 was obtaining appropriate, adapted housing, with respondents telling SIA that they had faced challenges when adapting their homes (76%) or with the general accessibility of housing (53%). Travel and mobility was also a common theme for people with SCI, with respondents telling SIA that they had faced challenges with accessible parking (81%) and public transport (71%) including inaccessible trains and platforms. These problems restricted their independence and inclusion, particularly where that involved spontaneity. In addition, many members of the SCI community told SIA that they are misrepresented or misunderstood by the media (34%), despite 44% of respondents believing that public attitudes towards SCI are changing for the better. Nearly three quarters (74%) of respondents had experienced helpful gestures or actions from people in society, but many also reported being ignored (63%), stared at (55%), discriminated against (38%) or denied service (34%), with some even being subjected to verbal abuse (19%) and violence (5%). Compensation for negligently caused spinal cord injury (SCI) SIA's 'What Matters Report 2025' highlights the challenges experienced by people with spinal cord injury (SCI), which restrict their equitable inclusion in activities of everyday life, employment and access to safe healthcare. As specialist spinal cord injury (SCI) and cauda equina syndrome (CES) solicitors, we can make a meaningful difference to the lives of those who have suffered spinal cord injury as a result of medical negligence, or spinal injury caused by the negligence of others on the roads, in the workplace or during organised sports or leisure activities. Spinal injury compensation claims provide access to substantial compensation which can pay for suitable, adapted accommodation, specialist rehabilitation and private therapies and medical or surgical care, adapted vehicles and specialist equipment, as well as reliable care and support which meets the individual's specific needs. If you or a family member have suffered a spinal cord injury as a result of someone else's negligence and you would like to find out more about funded rehabilitation or making a claim for compensation, you can talk to one of our experienced solicitors, free and confidentially, by contacting us.
