From the patient’s perspective; Narcolepsy
Narcolepsy is a rare neurological condition that causes a person to suddenly fall asleep at inappropriate times. It means the brain is unable to regulate sleeping and waking patterns normally, resulting in excessive daytime sleepiness, sleep attacks where sufferers fall asleep suddenly and without warning, cataplexy (a temporary loss of muscle control resulting in weakness and possible collapse), sleep paralysis, and excessive dreaming and waking in the night. Although narcolepsy doesn’t cause serious or long-term physical health problems, it can have a significant impact on daily life and be difficult to cope with emotionally. In this blog, we interview a patient who took part in a narcolepsy study, in order to humanise our patient journey research.
Many cases are caused by a lack of the brain chemical hypocretin (also known as orexin) which regulates wakefulness – and although narcolepsy is often thought of as a sleep disorder, this underlying cause actually means that it is better classified as a disorder of the central nervous system. It’s difficult to know exactly how many people have narcolepsy because many cases are thought to go unreported, however, it’s estimated the condition affects 1 person in every 2,500 – which means approximately 30,000 people in the UK have it. About 5,000 of these people are currently receiving medicines to treat it.
Men and women are thought to be affected equally, although some have suggested the condition is more common in men. Despite symptoms of narcolepsy often beginning in adolescence, the condition is usually diagnosed between the ages of 20 and 40 with cases usually being diagnosed at one of 36 specialist sleep centres in the UK. Whilst there’s currently no cure for narcolepsy, making changes to improve sleeping habits and taking medication can help to minimise the impact the condition has on daily life.
At GKA, we have over 15,000 expert healthcare professionals on our panel, including 189 neurologists. A recent study in this area aimed to understand people’s experience of living with narcolepsy and how they manage and treat their condition. Here, we speak to one of the patients who took part in the study in order to get to know the patient’s story behind the study:
How would you describe narcolepsy in your own words?
This is a great question and something I get asked a lot. The best way I can think to describe it is that everybody gets tired, but with most people, a cup of coffee can help you become more awake. With narcolepsy, it’s like you just hit the floor and can’t get up. It’s like falling through the floorboards – and it’s only medication that can stop you from hitting the floor. Yes, I still get tired like everyone else, but narcolepsy is different and needs more than a cup of coffee to stay off the floor. It’s really hard to explain, and people without it often can’t understand it.
When were you first diagnosed with narcolepsy and what did the doctors tell you about it?
I was first diagnosed in 1999 and I remember the doctors describing it as when you fall asleep in a bowl of soup. I was teaching at the time, and would be sat writing something and would just fall asleep yet continue writing illegible words. When driving I had to pull over and stop, and I was too afraid to drive on motorways anymore. It took me a while to come to terms with it and I couldn’t get my head around it, I just put it down to the stress of everyday life or just being tired. I just didn’t see myself like that and was in denial that I had it for two years.
How long did it take to get a diagnosis?
Once I went to the GP I was referred to a sleep clinic and diagnosed straight away – although I think if it had been better explained to me initially I would have probably been more responsive to thinking I could have it rather than living in denial for so long.
What’s it like living with narcolepsy?
I’m now lucky enough to be on a good medication that works well enough that my symptoms have completely gone away – I’m even driving again finally! – but there have been ups and downs. There have been times where my medication hasn’t worked or I have suffered from awful side effects that are antisocial, intolerable and at times life ruining. For me personally, before it was under control when I hit that level of being tired, my whole body would need to collapse and I would just have to lie down and go to sleep. It would strike suddenly and I could be anywhere. It meant I couldn’t leave the house, which is why finding a medication that works was completely life changing
How does narcolepsy affect your daily routine?
Because of the medication, I’m currently taking it doesn’t affect my day to day routine too much now. I no longer have to take daytime naps, so I go to bed at 7 pm and don’t have to take sleeping tablets to deal with uninterrupted nighttime sleep. I sleep well and tend to wake up between 5 am and 6 am. However, I do get tired very easily, and I often have one week out of every month where I feel flu-like and poleaxed with utter lethargy and a complete inability to do anything and as if my body is completely shutting down. When this happens, I can’t stay awake at all any of the time. I just have to give up and accept that I am out of action for a week.
How do others react when you tell them you’ve got narcolepsy?
Without a doubt, the most common question is “is that where you fall asleep all of the time?” That’s the most common one because that’s how it’s shown on TV, but the truth is that everyone is different and it’s not a representation of all narcolepsy sufferers. People also think that those with narcolepsy are just lazy, that it’s just an excuse or that it’s something that can be fixed by having a quick nap or drinking a coffee. But if you hit that level of tiredness and fall through the floor, a coffee just isn’t going to help.
Do you feel you receive enough information and support from HCPs?
I’d say that the level of information and support has been ok. There’s been one neurologist who has been amazing throughout the entire process, but the rest have been average.
Have you used any websites or support groups?
Back when I was first diagnosed I visited sites such as Narcolepsy UK which had some really useful information, but I haven’t used them in a while. Other than that I didn’t use other websites or support groups.
Tell us about your market research experience with GKA
I was put forward for market research by my specialist neurologist because I had been on the medication being researched for two years and was responding really well to it. I took part in a 60-minute interview about how I’d been before using the medication, all the different factors to do with taking it, how I’d improved or not improved, any side effects, what information I’d been given by doctors about the medication and more. As a result of the research, the medication is now funded by the NHS and I’m absolutely thrilled to have been able to help people.
What do you feel you got out of the process?
From a personal perspective, taking part in the research made me more confident to ask doctors questions and to think about medications and side effects more. It was very empowering, and I’m so grateful that others can benefit from the research too. That’s why it was so great to take part – everyone who suffers from narcolepsy is different, there’s a whole spectrum of how it affects people and it was great to give others like me a voice. All in all, I felt a huge feeling of warmth and was really pleased with the entire process.
Would you consider taking part in future projects?
Without a doubt, yes. I really enjoyed the whole process and seeing first-hand the benefit of market research. I’m now a total advocate for getting involved!
If you are thinking about conducting patient journey research, why not download our guide to successful fieldwork with patients? It’s full of advice on how to carry out patient-centric research, from project set up tips to recruitment advice, moderation ideas and our exclusive access to healthcare experts.