My experience with narcolepsy has been turbulent and I've learnt that receiving quality and supportive medical care is vital for successful symptom management. I’m pleased to say that my symptoms are well managed, enabling me to work, drive and generally live a very balanced life. Sadly, it hasn't always been this way and life was incredibly difficult when forced to receive and consequently challenge poor medical care and support. My hope is that my story and this blog will help people with narcolepsy to equip themselves with knowledge around the condition and gain confidence that helps them to take an active role and improve their own healthcare.
I've had narcolepsy since my teenage years, with symptoms beginning gradually - falling asleep watching TV or whilst reading, nothing really to raise concern. By the time my early 20’s the sleepiness was invading car journeys and uni lectures, with uncontrollable sleep episodes striking after I’d eaten a meal, felt too warm / comfortable. Episodes were increasingly difficult to hide and endeavours to stop the dreaded head nodding always in vein. The embarrassment that accompanied my inability to control sleepy episodes was acute and equal to the frustration felt when GPs repeated that “I was just stressed”. In their defence, they weren’t altogether wrong. I was stressed, but only as a consequence of navigating life in a sleepy haze.
It took ten years to receive an official diagnosis. By pure chance, I came across an article written by someone with the condition in a magazine. The author’s description around the constant battle with excessive sleepiness mirrored my own daily struggle, as did other associated symptoms that weren’t even on my radar as oddities! It hadn’t occurred to me that my experiences of sleep could be different to other peoples and that the regular wobbly feeling I experienced when laughing wasn’t the norm. Equipped with this new insight and a greater understanding of sleep in general, I raised my concerns once more with my GP who agreed to refer me to a neurologist, who then referred me onto a neurologist specialising in narcolepsy. The relief I felt upon diagnosis was immense. Scientific tests proved that my sleepy episodes were out of my physical control; I wasn’t lazy or crazy and there were a number of treatment routes to consider.
Fast forward 16 years and I found myself in a position where quality and supportive medical care became a thing of the past, following the very sad death of my specialist. My care was referred to a general neurologist with little understanding or interest in the condition, who subsequently blocked alternative treatment options when I’d disclosed that current medications weren’t working as well as they had previously. He claimed that my descriptions of symptoms were inconsistent to narcolepsy (stating in letters to GPs that I was exaggerating symptoms) and diagnosed me with Chronic Fatigue Syndrome, referring me to a local CFS clinic where focus is placed upon graduated excursive regime. Subsequently, my health deteriorated to the point where I was unable to drive or work for five years.
Fast forward 16 years and I found myself in a position where quality and supportive medical care became a thing of the past, following the very sad death of my specialist. My care was referred to a general neurologist with little understanding or interest in the condition, who subsequently blocked alternative treatment options when I’d disclosed that current medications weren’t working as well as they had previously. He claimed that my descriptions of symptoms were inconsistent to narcolepsy (stating in letters to GPs that I was exaggerating symptoms) and diagnosed me with Chronic Fatigue Syndrome, referring me to a local CFS clinic where focus is placed upon graduated excursive regime. Subsequently, my health deteriorated to the point where I was unable to drive or work for five years.
Patients should quite rightly respect and value the opinion of the doctors involved with their care, however I’m also of the belief that this opinion should also be challenged on occasions. To do this, I needed to fully educate myself and become my own best advocate. Joining every online narcolepsy support group I found, I posted numerous questions and took time to build up my knowledge around the cause of narcolepsy and treatments options used other countries. Equipped and ready to challenge, I met with my consultant one final time. His response was not unexpected and it was his denial of the existence of Xyrem / Sodium Oxybate (frontline treatment in the US) that spurred me to officially voice concerns of my care.
The process of changing consultants wasn't easy. My request for a second opinion was rejected by my existing consultant and in Wales, patients don't have the right to choose who they can see. With grateful support from my GP, a request for transfer of care was sent to my local health board and eventually I was referred to Dr O'Reilly, a Consultant in Respiratory Medicine (with an interest in narcolepsy) based in Liverpool. It's no exaggeration to say that the care and support Dr O'Reilly has provided has been outstanding. He's gained access to treatments that have not just turned my life around, but actually given me a life! I will be forever grateful for his support and will never forget our first consultation whereby he confirmed that my symptoms where in fact completely consistent with my narcolepsy diagnosis.
The process of changing consultants wasn't easy. My request for a second opinion was rejected by my existing consultant and in Wales, patients don't have the right to choose who they can see. With grateful support from my GP, a request for transfer of care was sent to my local health board and eventually I was referred to Dr O'Reilly, a Consultant in Respiratory Medicine (with an interest in narcolepsy) based in Liverpool. It's no exaggeration to say that the care and support Dr O'Reilly has provided has been outstanding. He's gained access to treatments that have not just turned my life around, but actually given me a life! I will be forever grateful for his support and will never forget our first consultation whereby he confirmed that my symptoms where in fact completely consistent with my narcolepsy diagnosis.
This blog has been developed as a direct response to my experiences of poor medical care, in order to share information and resources, consider sociological / life effects aspects of narcolepsy and promote discussion on the issues that have historically attracted little attention.
I've also developed the Narcolepsy / Cataplexy Education Focused Group on Facebook, which provides a wealth of accurate and interesting information on both conditions. Please note that this is an open group and that you don't need to be a member to read posts / access information. A number of closed Facebook groups are listed here.
Thank you for taking the time to read my blurb. I truly hope that you find the blog interesting and useful.
I've also developed the Narcolepsy / Cataplexy Education Focused Group on Facebook, which provides a wealth of accurate and interesting information on both conditions. Please note that this is an open group and that you don't need to be a member to read posts / access information. A number of closed Facebook groups are listed here.
Thank you for taking the time to read my blurb. I truly hope that you find the blog interesting and useful.
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