What is in a label?

We live in a time where labels, titles, descriptions and definitions are probably the most fluid they have ever been in history. There are currently over 72 recognised gender identities in addition to multiple preferred pronouns. As someone who grew up in the 1970s & 80s it can be a challenge to understand these identities and how they fit into the modern world. It is, however, reassuring that people can now find comfort and solace in being able to more accurately identify themselves and how they feel.

Despite significant progress there are still many terms in use that are outdated, inappropriate, damaging and hurtful and this is despite the rich media coverage of gender identities, inclusivity and appropriate use of language and terminology. If these challenges remain, despite such wide media coverage, what hope is there for the lesser covered inappropriate and outdated terms used in healthcare?

One such term is pseudoseizure.

The definition of pseudo is ‘not actually but having the appearance of; pretend; false or spurious; sham’. The very name, which is still widely used by nursing and medical professionals alike, immediately gives the impression of a ‘fake seizure’. The Epilepsy Society explains that the preferred term for seizures that are not caused by epilepsy is now ‘functional seizure’. By removing the link with epilepsy, we are reducing bias and better enabling us to look at the condition as separate from epilepsy which is likely to increase the accuracy of diagnosis and subsequent treatment.

Those living with functional seizures may be accused of ‘faking their seizures’ or ‘putting them on’, which ironically only increases the chances of further seizures occurring due to heightened stress levels. The root cause of functional seizures is often a traumatic event, which may or may not be identified, and appropriate psychotherapy, CBT and talking therapies can result in a positive outcome for patients.

Kindness, compassion and understanding are often the most productive ways to care for patients living with this condition. In fact, kindness, compassion and understanding are often the most productive ways to care for patients living with any condition.

Functional seizures are just one condition/diagnosis amongst many that are misunderstood and mislabelled but it is not just about the diagnosis. Cox and Fritz wrote about how the use of language disempowers patients, rather empowering healthcare professionals. Acronyms, complex medical terminology, a lack of time all contribute to the potential for miscommunication or misunderstanding. The information given to patients should be presented appropriately at the correct level necessary for full understanding and consent.

By using outdated terminology, we risk damaging the relationship between the patient and the healthcare professional. This relationship is already frequently stacked in favour of the healthcare professional who has the ‘power’ and ‘control’ in the relationship, with patients relying on the knowledge, understanding, availability and willingness to listen of the healthcare professional caring for them.

The NMC was recently the focus of national news due to a ‘damaging toxic culture’ within the organisation. Details of the issues were further described in the ‘Independent Culture Review’ report released in July 2024, which was deeply disturbing to read. Amongst the many challenges listed there were reports of staff using outdated language and tropes. When challenged on the use of these terms staff reportedly answered ‘well you know what I mean’.

As part of the Inspire Improvement Fellowship, which I recently completed with FoNS, we focused on ‘How we do things around here?’ and more specifically ‘How can we change how we do things around here?’

This brings me back to pseudoseizures.

How can I change how we do things around here when caring for patients with functional seizures?  By raising awareness of the condition. By respectfully challenging inappropriate terminology when it is used. By being willing and able to move away from those terms and be open to educating myself. By embracing the ideas and knowledge that our future generations of nursing graduates will bring with them.

We will not always get it right, but by having an open and honest dialogue with our patients, we stand a better chance of being more prepared and able to positively influence the outcome for those patients. I will continue to strive to educate myself, my team, future nursing students and any other healthcare professionals open to listening and perhaps, by doing this, we may improve or reduce situations where patients are made to feel ‘they are putting it on’ and are instead, more empowered to talk freely about the challenges they face.

References

The Epilepsy Society – Non-epileptic seizures https://epilepsysociety.org.uk/about-epilepsy/what-epilepsy/non-epileptic-seizures

NMC Independent Culture Review (2024) https://www.nmc.org.uk/globalassets/sitedocuments/independent-reviews/2024/nmc-independent-culture-review-july-2024.pdf

Cox & Fritz (2022) Presenting Complaint: use of language that disempowers patients https://www.ncbi.nlm.nih.gov/pmc/articles/PMC9273034/