Spinal Cord Injury Awareness Day 2023

A spinal cord injury (S.C.I.) is basically damage to any part of the spinal cord or nerves. This damage can happen through illness or injury. That interrupts the messages to and from the brain, leading to partial or full loss of strength, sensation or movement in parts of your body, below the injury site.

A spinal cord injury can have a devastating impact on an individual in a split second, changing their lives forever. You can lose your independence, your freedom and, for some people, your reason for living.

According to estimates by Spinal Injuries Association, Aspire and Back Up – three of the leading charities providing support to spinal cord injured people – there are an estimated 50,000 people in the UK living with a spinal cord injury and each year approximately 2,500 people are newly injured.

That means that in our country, spinal cord injury paralyses someone every four hours.

Life doesn’t suddenly go back to normal for SCI people with barriers to accessibility, lack of access to care and general stigma around being disabled having a profound impact on quality of life. These challenges were even more profound during the Covid-19 pandemic when elements of independence were taken away, such as leaving the house or having carers in for support. But, even not taking into account the effects of the pandemic, living with a SCI is full of physical and mental challenges and everyday mountains to overcome that a healthy person cannot begin to imagine.

So, if the general public and governmental decision makers better understand these needs, then that is the first step in providing the best policies and support that people living with a SCI imperatively need. Below you can find a list of key subjects of what really matters for people with a SCI, according to the SIA 2022 What Matters Report.

1. Access to specialized health care services

Spinal cord injury is also associated with a risk of developing secondary conditions that can be debilitating and even life-threatening—e.g. deep vein thrombosis, urinary tract infections, muscle spasms, osteoporosis, pressure ulcers, chronic pain, and respiratory complications. Acute care, rehabilitation services and ongoing health maintenance are essential for prevention and management of these conditions.

Right now in the UK there are 12 NHS Spinal Injury Centers that provide these specialized medical services and recent 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. Immediately after sustaining spinal damage a person’s rehabilitation is crucial and the idea that not all have access to the specialist care available at Spinal Injury Centers is devastating. Also, it is important to mention that a SCI patient typically spends about 3-6 months hospitalized.

Spinal cord injury may also render a person dependent on caregivers. Access to assistive and healthcare management services post hospitalization is critical for individuals with SCI and their families. However, access to these services can be complicated due to various factors, such as:

• lack of available resources,
• geographic location,
• financial constraints,
• or a lack of knowledge about the services available.

This can lead to a life that is unnecessarily complicated, adding more challenges to an already difficult situation.

Even more so, the survey for the SIA 2022 What Matters Report outlined that most people living with a SCI are concerned that even the most fundamental health priorities like bowel and bladder management cannot be properly understood and met by their GP or local healthcare professionals.

2. Financial security and employment

For the report SIA asked the community about what barriers prevent them from leading a fulfilled life and 69% said funding their care needs, accessing benefits and accessing social care support are their biggest concern. Eligibility for NHS care packages was highlighted as a primary concern for many, while others voiced their fears about financial hardship caused by paying for a lifetime need for carers, wheelchairs and home adaptations.

Another big issue for the SCI community was highlighted by 75% of respondents that cited limited access to employment as their biggest barrier to leading an equal life. The World Health Organization (WHO) cited that adults with spinal cord injury face barriers to economic participation, with a global unemployment rate of more than 60%.

Evenmore, WHO also reported that children with spinal cord injury are less likely than their peers to start school, and once enrolled, less likely to advance.

3. Fighting for mental health

As well as the physical impact of a spinal cord injury, there are also emotional and psychological effects on the person concerned – and their family. According to the World Health Organization, an estimated 20-30% of people with spinal cord injury worldwide show clinically significant signs of depression, which in turn has a negative impact on improvements in functioning and overall health.

Another SIA Report, It’s not just physical, published in 2021 exposed another dire struggle for a person living with SCI: that they are three times more likely to consider suicide than a person without injury. The report found that 28% of SCI people reported having had suicidal thoughts, compared to just 8% among the rest of the population. And that half of the participants have had mental health struggles.

The key factors that lead to the most common mental health problems experienced by SCI people – depression, anxiety and post-traumatic stress (PTSD) – are ongoing pain, being of low socio-economic status or having an existing mental health diagnosis, pre-injury.

In the same report done in 2021, it was also identified that the unpaid carers – usually the partner or parent of the injured person – desperately need their mental wellbeing supported too:

• 81% felt a shared sense of trauma with their injured family member;
• 80% felt unsupported by the NHS during period of hospital discharge;
• 75% of unpaid carers felt their own mental health needs had been side-lined;
• 75% masked their own mental health issues in front of their injured family member.
  

All these findings stress the importance of access to much more and more appropriate psychological support for SCI people at all stages of their post injury journey: immediately following injury; when they are discharged from hospital to another care setting or to their home; and for the rest of their lives.

4.  Mobility, Public Misconceptions & Stigma

Assistive technology is often required to facilitate mobility, communication, self-care or domestic activities. And another underlying issue for the SCI community is the lack of access to basic mobility services like things ranging from access to the outdoors/countryside, parking, shopping, hotels, leisure, public transport, air travel and blue badge schemes. If people with SCI can’t have access to certain outdoor spaces or recreational areas and can’t have access to certain public transports, that will only underline their isolation to the rest of the society.

Another issue for people living with SCI is the general stigma and misconceptions or lack of knowledge around the public perception of spinal cord injury (SCI) and the challenges a person faces when they sustain an injury. A SIA 2022 YouGov Survey on the general public highlighted that:

The YouGov Survey also uncovered that the general public had a lack of understanding around the many issues a person can experience following a spinal cord injury such as the ability to control skin temperature, or around how much a person’s breathing is affected by SCI. 

But probably the biggest problem in public perception is that they are viewed more through the lens of the disability that they bear rather than their own individual set of traits, skills and aspirations. Although public perception throughout the decades have improved significantly, in the 2022 What Matters survey, 92% of responders said the public’s attitude towards people with disabilities is one of the greatest barriers they face.

Misconceptions, negative attitudes and physical barriers to basic mobility result in the exclusion of many people from full participation in society.