CBS: continuing to fall through the cracks of the health system

By Scot Muirden

 

Over the past decade, the Charles Bonnet syndrome has had more public exposure and clinical journal coverage than ever before. Importantly, the personal accounts of people’s lived experience of CBS is increasingly reaching radio airwaves as well as print and social media platforms. These are undoubtedly encouraging developments.

Yet the sobering reality is that on the ground in health care settings spanning hospitals, medical consulting rooms and community based services, CBS is being misunderstood or more commonly, overlooked altogether. We would like to briefly share two recent CBS stories that speak to this gap in service provision. One involves a young woman and another an octogenarian male.

Almost 3 years ago, a woman aged of 25, was diagnosed with glaucoma and prescribed anti-glaucoma eye drops. Around this time, she also began to have visions of text in various languages appearing on walls, floors or hovering mid-air.

She was prompted to go to the emergency ward (ER) at her local hospital. It was there that she was diagnosed with ‘unspecified psychosis’. After this diagnosis, she sought further clinical help. First, she visited her eye specialist who informed her that her eyes were ok and could not therefore account for her visions. She subsequently sought help from multiple psychiatrists all of whom confirmed the ‘unspecified psychosis’ diagnosis. Some prescribed antipsychotic medication to relieve her of her symptoms but none worked.

For nearly three years this scenario persisted. None of the specialists thought she had schizophrenia but so too none could explain her ongoing unusual visual experiences. And this powerful label - ‘unspecified psychosis’ - made her feel very worried. It was only when she undertook an online search of the term ‘hallucination’ that she first came across CBS. She read more and strongly felt this applied to her. 

 

(Photo courtesy of Shridha Vashistha)

Case two. A man in his 80s had been diagnosed with the dry form of macular degeneration. He happened to mention some strange visions he had been having to his general practitioner whose curt reply was, “I’d keep that to yourself if I were you”. This made the man feel unsupported and stigmatised. The visions continued but he tended to withdraw. He thought he was going bonkers.

When he saw his macular specialist, he plucked up the courage to raise the topic once more. This time, the specialist indicated that he should be referred to a psychiatrist. The referral was made but the man opted not to go. Later, while attending an information session on macular degeneration, the topic of CBS was first raised. It was a liberating revelation for the man after having endured over two years of isolation, uncertainty and emotional distress.

Regrettably, these two cases are not isolated stories. Rather, they speak to a disturbingly common scenario encountered across the world. Still today, CBS doesn’t seem to register amongst many health care professionals as a possible explanation for why someone is ‘seeing things’. The implications of this can be stark: misdiagnosis, being led down an inappropriate (medical) path and meanwhile the symptoms continue for the person with no understanding of what is actually happening to them.

The syndrome is (still) falling through the cracks of the health system. This most unfortunate situation will continue until and unless health care professionals are more aware of, and responsive to, CBS. Part of the responsibility falls upon the peak bodies (for general and specialist medicine, nursing, optometry etc.) to establish CBS clinical guidelines and share to all their members. Ideally, health peak bodies should go a step further by pushing - as much as is practically possible – for these guidelines to be incorporated into members’ everyday practice protocols.

Then - and only then - will CBS begin to receive the health attention that is so desperately needed.