Spinal Injuries Association (SIA) has published its 2023 What Matters report about what really matters to SCI injured people in the UK today. The report aims to provide a snapshot of the reality of living with spinal cord injury and to identify the barriers which prevent SCI injured people from living a fulfilled life.
The report’s findings are based on the responses of 994 people, including 876 people with spinal cord injury, to SIA’s annual ‘What Matters?’ survey, the largest response rate SIA have ever had to the survey.
The report summarises the main concerns of people living with spinal cord injury, in relation to their body or physical health, their mind or mental health and their daily life.
Body and physical health
In relation to physical health, SIA found that 50% of SCI people were concerned about bowel management, particularly in relation to the lack of knowledge about SCI bowel management from their healthcare professionals, such as GPs and hospital staff. More than a third (36%) of people with SCI who responded to the survey had stayed in hospital at some time during the last two years. More than two thirds (69%) of those who had stayed in hospital hadn’t received a good standard of bowel management care.
Examples of respondents’ hospital experiences included finding that no hospital ward staff had the knowledge or skills to provide adequate SCI and bowel management care. In one case, the ward staff had refused the spinal cord injured patient’s request that they seek advice from the National Spinal Injuries Centre (NSIC). SCI inpatients were left suffering from bowel compaction and at risk of further complications, needing to self-manage their own manual evacuation despite suffering from bone fractures, or dependent on their spouses/partners coming into hospital to provide them with bowel management care.
SIA are working to raise awareness of this issue through their #SeriousSh1t campaign.
Other body or physical health related concerns included:
- bladder (urinary) management (47%);
- pain management (42%);
- general medical access (37%);
- getting older with a spinal cord injury (35%);
- wheelchair provision (35%);
- fitness and exercise (30%);
- skin care and management, including accessing information about pressure ulcers (pressure sores) (22%).
The report highlights that general or non-specialist hospital staff and GPs may rarely encounter patients with spinal cord injury (SCI) during their careers and may have no training, experience or awareness of their specialist needs. For this reason, people with SCI are justifiably fearful about being cared for in hospital or care homes where staff do not have the skills and training to provide them with safe care.
SIA’s What Matters 2023 report says that SCI people’s long-term physical health depends on access to appropriate health care from suitably qualified and trained health care professionals, as well as access to regular physiotherapy and rehabilitation post-injury. GPs and hospital medical staff need to have a greater awareness of the clinical implications of SCI and be willing to listen to SCI patients, who often have greater expertise about their own condition. People with SCI also need access to good educational resources to help with their own self-management.
Mind and mental health
SIA’s What Matters 2023 report found almost half of people with spinal cord injury (SCI) felt that their mental health and inability to access mental health support was one of the biggest challenges preventing them from leading a fulfilled life.
47% of respondents had been affected by anxiety or depression, and 41% said that friendships and family or intimate relationships had been affected. Many had experienced a lack of specialist rehabilitation support (41%), lack of access to counsellors or therapists who understand SCI (36%), and lack of available services, such as wheelchairs or housing adaptations (30%). SCI people had experienced isolation or loneliness (36%), disconnection from other SCI people (20%), and issues with self-confidence (36%) or self-image (27%).
SIA says that improving the mental health of people with spinal cord injury depends on access to timely, post-injury or rehabilitation psychological support, with ongoing counselling and mental health support following hospital or spinal centre discharge. Mental health support should also be available for families of people who suffer spinal cord injury (SCI). Mental health and general medical services must have a better understanding of the psychological issues that SCI people face.
Spinal Injuries Association’s What Matters 2023 report highlighted the challenges faced by SCI people in multiple areas of daily life, often in relation to activities that most of us take for granted, such as getting out and about. 9 out of 10 survey respondents faced challenges with getting outdoors and into the countryside, with almost as many concerned about accessible parking (84%) and society’s attitude towards disabled people (89%). 70% had concerns about access to vocational (work) activities.
Concerns around suitable living accommodation included challenges with finding accessible housing (80%) or adapting their home to their needs (82%). Another very common theme was concerns about care, with nearly two thirds (64%) of SCI people worried about accessing social care, including in their own home (51%), and others concerned about funding their care needs (61%). Half (50%) of all respondents were concerned about standards of care.
Money and finance remains a major concern for those living with the increased costs of SCI disability, with the cost-of-living crisis causing 8 out of 10 SCI people to worry about how they will manage financially next winter.
SIA calls for SCI people to be enabled to lead fulfilled and happy lives alongside those who are able-bodied, by having access to:
- health, social care and care support that that provides for spinal cord injured people’s needs;
- safe and comfortable adapted homes;
- wheelchairs and mobility aids that are fit for purpose;
- job opportunities that reflect SCI people’s skills, experience and aspirations;
- health and leisure opportunities and access to outdoor spaces;
- a decent standard of living and a valued place in society.
Compensation for spinal cord injury (SCI)
Spinal injuries charities estimate that around 50,000 people are living with a spinal cord injury in the UK. Each year, a further 2,500 people suffer a new spinal cord injury (SCI), the equivalent of one person’s life being permanently changed by SCI every four hours.
Spinal cord injury is commonly caused by accidents, such as falls at work, road accidents (RTAs) or sports injuries, or by mistakes in medical care, such as surgical errors or delayed in diagnosis and treatment of cord compression leading to cauda equina syndrome (CES). Disability from SCI affects the individual’s mobility and independence both at home and outside, their physical, emotional and mental health, and their work and finances. Where the disability was caused by the negligence of an employer, driver, organisation or healthcare provider, a spinal cord injury claim can provide compensation to ease financial hardship for the injured person and their family, and provide funding and access to rehabilitation, mobility aids and other specialist equipment, adapted accommodation and other essentials, such as medical treatment and care.