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Misunderstanding Spinal Cord Injured Patients' Ongoing Needs

View profile for Jon Rees
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We have covered elsewhere how spinal cord injuries are relatively rare (even though seven people will suffer the injury each day – one every 3.5 hours or so). If there are 50,000 people living with spinal cord injuries in the UK, that number represents just 0.07% of the UK population.

Although there is a wealth of knowledge, understanding and support for spinal cord injured people within the community of people affected by or working with people who have suffered spinal cord injury; unfortunately, outside of that relatively small community, the level of ignorance of what the individual endures daily as a result of spinal cord injury constantly disappoints.

The woeful inadequacy of care; the constant battles with bureaucracy; the grinding day to day difficulties in daily routines; the thoughtlessness of others being relied upon to make journeys or visits anywhere less arduous than they already are; in fact, the dependence to any extent on the reliability of others, are all areas of life where what is needed is all too often not what is experienced. What is reasonable to think might be available (as opposed to what is merely needed as an essential) can sometimes seem to be even further beyond reach.

Yet when any of us engage with what the situation is actually like for the person in need, we are appalled that so much is endured that is so obviously inadequate. As one speaker put it when talking about how people articulate this, what is aired is usually only the tip of the iceberg – perhaps the most immediate rather than all the urgent needs.

Whilst our main area of work is as litigation specialists helping people claim compensation after spinal cord injury, we pride ourselves on doing what we can where we can to help anyone affected by spinal cord injury and irrespective of whether they may have a claim or not. Increasingly though we are seeing people approaching us as spinal cord injury litigation specialists not just immediately following their original life changing injury but later on – often much later on - and in connection with what has happened subsequently.

It may be noted many of the injuries we are instructed to explore compensation claims in are spinal cord injuries sustained in circumstances where greater understanding of the risks of spinal cord injury might have avoided the original cord injury arising. It is a fact that clinical negligence as a cause of spinal cord injury is increasingly common. The older person who falls, but the contusion or oedema (bruising or swelling to or around the cord isn’t noticed); the spinal precautions applied at the roadside being overlooked by hospital staff; the failure to recognise symptoms of cauda equina syndrome; the failure to identify neurological deterioration, pain and fever in spinal epidural abscess cases – all these and more have seen the tax payer paying literally millions of pounds in compensation, and these are just a few examples from the last few years in our practice alone. These are not one-off cases where lessons are learned – they happen a lot.

It should perhaps not be too much of a surprise that, given what seems too low a level of awareness of how spinal cord injury might be prevented in the first place, we have seen  clients who have needed emergency hospital care as their cases have progressed, (or subsequently).  We have seen people who have suffered as a result of those treating them not understanding or implementing effective bowel and bladder care; or not understanding the basics of manual handling and log rolling.  We have helped where clinicians and carers have not been engaging with the importance of skin management to avoid pressure sores; or they have not been aware of autonomic dysreflexia signs and treatment; or they have not been aware of the signs and symptoms of syringomyelia and how it might be treated if identified early.  We have also helped in cases where there has been poor awareness of the risk of UTIs and other infections that have led to sepsis and septicaemia, to necrotising fasciitis and terrible wounds needing extensive plastic and reconstructive surgery; and sadly in more than one case, death.

Effective care and case management; the right therapies and the right accommodation can make a significant difference (as can access to medical reviews, psychological support and financial security) - that is where compensation can be so vitally important; but their absence can and does matter. That absence can be life limiting and indeed life ending.

As with all injustices, raising awareness and the profile of issues often overlooked is an important start on the journey to effective change. Perhaps this blog will go some small way to provoking more engagement with what is a real and pressing need for those who have suffered spinal cord injury to be heard on.

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