This Saturday (5th September) marks the 10th anniversary of Spinal Cord Injury Awareness Day. Founded in 2016 by the International Spinal Cord Injury Society (ISCoS), it’s designed to raise awareness, improve care and promote prevention of spinal cord injury.

From Awareness to Action

Decade anniversaries are usually an opportunity for reflection, and this year’s theme "From Awareness to Action: Ten Years Advancing SCI Prevention” will no doubt encourage people to look back on how far we’ve come over the past 10 years and also assess how far we still need to go.

My own journey with SCI started 28 years ago, but coincidentally, on the 12th anniversary of my accident, I started work at the Spinal Injuries Association (SIA). When I joined SIA in 2010, we advertised the fact that someone in the UK sustained a spinal cord injury ‘every 8 hours’.

We advocated for better support for the 10% of patients that didn’t get into a specialist rehabilitation centre for acute rehab, and for the other 90% that waited an average of a month to get into one. The majority of the people we supported were young men injured through risky activities.

Someone suffers a SCI approximately every two hours

16 years on, it’s difficult to believe just how outdated those statistics, and the demographic of people sustaining SCI, are. Now, the talk is 'every 2 hours’, equating to around 4,400 instances of spinal cord injury every year in the UK.

We now know that the majority of SCI patients never receive any support from a specialist centre, and the age profile and cause of injury has changed beyond recognition.

Research in America in the 1970s suggested an average age of 28 at time of injury, Recent data for referrals to specialist rehab centres in the UK suggests the modal age has risen to 60–69. Road traffic collisions were the primary cause of injury, closely followed by falls.

Those sustaining SCI through illness or condition (we previously described this cohort as non-traumatic injuries until it was pointed out that every incidence of SCI is traumatic, regardless of the cause) were a forgotten minority, whereas global research now estimates the percentage to be somewhere between 20-61%. The reason for such a huge range? No doubt down to the inconsistencies in reporting those sustaining SCI through illness or condition.

Lack of referrals to specialist rehabilitation centres

My work spans both JMW's personal injury department (clients sustaining injuries through accidents) and the clinical negligence department (clients with injuries sustained through negligent medical treatment), and it is disproportionately unlikely that someone in the 2nd category will be referred to a specialist centre for rehabilitation. Without a referral to a specialist centre, the data associated with the patient isn’t recorded or reported on.

Research over the last 10 years has certainly given us a more accurate picture of SCI in the UK. Almost four and a half thousand people sustain a spinal cord injury each year, with over 105,00 living with the condition in the longer term. So how can this data help lead to prevention?

Safety features in cars have improved to help prevent injuries in road traffic collisions (RTCs) sporting equipment and practises have changed to negate the chances of injury on the pitch, emergency response personnel have improved their procedures, support and care for the elderly helps reduce risk, but ultimately people will continue to sustain injuries through RTCs, falls, sporting activities and in countless other ways.

Prevention of spinal cord injuries

My feeling is that the greatest opportunity we have for the prevention of SCI lies within the cohort of people sustaining injury through illness or condition, namely cauda equina syndrome (CES).

CES is a serious medical emergency that happens when the bundle of nerves at the base of the spine are compressed. It can cause several key symptoms (saddle numbness, bladder and bowel problems, leg weakness, back pain) and requires immediate decompression surgery to prevent permanent neurological damage. If this surgery is carried out quickly following the onset of symptoms, the results can be excellent, however if treatment is delayed, or symptoms ignored, the results can be life changing.

Cauda equina syndrome

I work with a lot of clients who have developed permanent CES due to a delay in treatment or missed red flags. I see on a regular basis just how devastating the impact of CES is on their lives. Lives lived in constant pain, struggling to mobilise, manage continence, feeling permanently fatigued and managing symptoms without any specialist support or rehabilitation. I see how much distress the fact that their injury was preventable causes them. ‘If only they’d acted quicker’, ‘if only they’d recognised my symptoms’.

Getting It Right First Time

In 2023, the NHS’s Getting It Right First Time (GIRFT) team reported that there were approximately 8,000 suspected cases of CES each year and that the condition accounted for 20% of NHS litigation costs relating to spinal surgery.

It’s unclear how many of these cases result in permanent neurological damage, or how many are included in the 4,400 new cases recent SCI research suggest occur each year, but it’s likely that a significant proportion of these cases did result in neurological deficit, and it’s also likely that the majority of those are not included in official data.

In the same year, a new clinical pathway was launched to help clinicians improve the diagnosis and care of patients with suspected CES. Yet despite this, within the next week or two I will receive a referral requesting support for another client with permanent symptoms of CES following delayed diagnosis or treatment.

Paving the way for improvement

Without a great deal of additional resource, or requiring a great deal of time, improving the way the NHS diagnoses and treats suspected cases of CES could make a sizeable dent in the number of SCI cases each year. With GPs and hospital staff better recognising symptoms, better referral processes in place to enable patients to access specialist care, and treatment delivered in a timelier manner, fewer lives are destroyed by preventable SCI.