³ÉÈËÂÛ̳

Downloaded from www.bbc.co.uk/radio4

Ìý

THE ATTACHED TRANSCRIPT WAS TYPED FROM A RECORDING AND NOT COPIED FROM AN ORIGINAL SCRIPT.Ìý BECAUSE OF THE RISK OF MISHEARING AND THE DIFFICULTY IN SOME CASES OF IDENTIFYING INDIVIDUAL SPEAKERS, THE ³ÉÈËÂÛ̳ CANNOT VOUCH FOR ITS COMPLETE ACCURACY.

Ìý

Ìý

IN TOUCH – Sleep

TX:Ìý 07.05.2024Ìý 2040-2100

PRESENTER:Ìý ÌýÌýÌýÌýÌýÌýÌýÌý PETER WHITE

Ìý

PRODUCER:ÌýÌýÌýÌýÌýÌýÌýÌýÌýÌýÌý BETH HEMMINGS

Ìý

Ìý

Ìý

White

Hello.Ìý A great deal of attention is paid these days to the nation’s sleep problems.Ìý And surveys suggest that for a whole host of reasons – stress, bad diet, too much heat, too little heat, alcohol – many of us aren’t getting the quality or quantity of sleep that we need.Ìý All of those are as likely to apply to visually impaired people, of course, but what is also well established is that there are factors that particularly interfere with visually impaired people’s sleep patterns, especially those with little or no light perception.

Ìý

Well, in this programme, we’ll be trying to disentangle some of these factors, what treatments are available, who they’ll work for and indeed why people are still getting very conflicting advice and sometimes no advice at all.

Ìý

Our first guest, whose email prompted us to return to this subject, has no light perception and has had severe sleep problems throughout her life, she’s also had difficulties in getting the treatment she thought she needed.

Ìý

Tina Snow, explain what your sleep problems have been in a bit more detail.

Ìý

Snow

It’s a very historic problem.Ìý I’ve got retinopathy of prematurity.Ìý When I was a child, I would be asleep all day and awake all night…

Ìý

White

It must have been hell for you but hell for your parents I would have thought?

Ìý

Snow

Yeah, nothing was known about non-sleep-24-hour disorder, not in 1968.Ìý It wasn’t until very much later in my life that I thought this just can’t be normal because I’m constantly battling with having the desire to sleep at about two or three o’clock in the afternoon.Ìý My sleep pattern roughly runs two weeks on average of about three to four hours sleep.Ìý The actual sleep deprivation is actually worse than sight loss because it does wear you down.Ìý You’ve got to go to work, you’ve got to hold a job, you can’t stay in bed all day and say to people – well, I can’t come to work – or – I can’t minute that meeting for you – because I’m an admin assistant for the local authority and you can’t sort of stay in bed, but life isn’t like that, you’ve just got to get on with it.Ìý But it’s impacted on my physical and mental health over the years.Ìý I’ve had periods of depression, sometimes a small problem can seem to be a big problem because you’ve had lack of sleep.Ìý There’s been a lack of understanding of what non-24 wake disorder is.Ìý I was driven to do my own research and I thought I recognise this condition; I think this is me I’m looking at.

Ìý

White

And this tends to always come back to this issue of melatonin, doesn’t it, which is a natural hormone and the idea is that this treats the problem that you’ve got, because you haven’t got light perception you don’t regulate your body clock as the 24-hour cycle gradually gets a bit out of whack.Ìý But why has it been so hard for you to get the treatment you needed, do you think?

Ìý

Snow

Well, melatonin is a prescription only drug.Ìý Well, I’ve contacted my GP who referred me to the Oxford Sleep Clinic in 2020.Ìý It was during lockdown, so I had a telephone consultation and they recommended I be prescribed 10 milligrams of melatonin, which does seem quite high.

Ìý

White

And there are other concerns about it which we may talk to with one of our other guests.Ìý There is the problem of the quality of it, there’s the issue of cost, there are all sorts of things.

Ìý

We’re also joined by your current GP, Dr Tim Whelan from Newport Health Centre, on the Isle of Wight, where you live.Ìý Dr Whelan, does just explain what you’ve been able to do for Tina and what you haven’t been able to do, I suppose.

Ìý

Whelan

Thank you, Peter.Ìý Well, Tina recounted this story to me and I have to say it’s new territory for me too but I did have the benefit of reading the letter from the consultant neurologist in the Oxford Sleep Centre and he had recommended melatonin but admitted that it was not available on licence, it was not licensed for this particular condition and that many GPs, around the country, might have difficulty in prescribing it.Ìý But melatonin is licensed for the treatment of insomnia in the short term in older adults and it’s also licensed for longer term treatment of children and younger adults for other conditions, such as learning disabilities and challenging behaviour.Ìý So, I did a bit of research around the subject and frankly there’s not much evidence about the treatment of this specific condition but there is anecdotal evidence that melatonin can improve the onset of sleep and reduce the amount of time spent awake subsequently during the night.Ìý So, I checked that we had covered all the other possible reasons for Tina’s sleeping difficulties and there are also a few little basic background checks to ensure that kidney function, liver function are alright.Ìý As I say, I had the recommendation from this consultant neurologist, I also decided to check with the chief pharmacist of my integrated care board, which covers the whole Hampshire and the Isle of Wight, and he thought it sounded a sensible proposition.Ìý So, I decided it was fair to prescribe.Ìý Now I have to say that prescriptions are very much a matter of individual responsibility for GPs, some GPs might not be comfortable but just because the drug is not licensed for a particular condition, it doesn’t mean to say it’s unsafe, it just means that the company, when they submitted their original request for a licence for this medication, didn’t mention that condition.Ìý So, we started at the very lowest dose because I’m always… I’m the sort of GP who tries not to put patients on unnecessary medication and always use the lowest dose which might produce the required benefit.Ìý And all I can say is that so far, so good.Ìý This is very early days, I have to add that little caveat, and we have to see how things go but I’ll be reviewing Tina’s progress over the next few weeks to see how we get along, it’ll be very interesting for me as well to inform future possibilities.

Ìý

White

And just so we’ve understood this properly – you’ve done this basically on your discretion, it’s not licensed, so who’s paying?

Ìý

Whelan

GPs and hospital doctors are allowed to prescribe medications even if they’re not strictly licensed for that condition, so long as we adhere to the guidelines of the General Medical Council, which does say we should put the welfare of our patients first, of course.Ìý And one could argue that by denying Tina this medication, I could be leaving her exposed to potentially avoidable misery.Ìý But you’re right, it is a personal decision by each doctor because we are all individually responsible for the prescriptions we issue.

Ìý

White

To go back to Tina, just briefly.Ìý Your GP there said so far, so good, what’s been the effect for you?

Ìý

Snow

It’s been a miracle and I really can’t thank Dr Whelan enough.Ìý I’m waking up feeling quite bright, quite focused, no napping in daytime or drowsiness and I’m just feeling mentally and physically feeling really happy and really well in myself.

Ìý

White

Okay.Ìý Well, in a moment we will hear from someone whose situation is rather different but it’ll be clearer, I think, if we stay with Tina’s situation for a moment and bring in our expert Professor Steven Lockley, Vice-Chancellor’s Fellow at Surrey Sleep Research Centre and Associate Professor of Medicine at Harvard University and Steven’s been studying non-24-hour sleep-awake disorder, which is what Tina has, for the past 30 odd years.

Ìý

Professor Lockley, we’re not expecting you to provide an instant diagnosis and a treatment plan for an individual, without a lot more information but, generally, what do you take from Tina’s experience?

Ìý

Lockley

So, Tina’s description of non-24-hour disorder is very accurate.Ìý It’s really not a sleep disorder per se, it’s really a circadian clock disorder.Ìý Normally our 24-hour clocks in the brain would be synchronised by the daily light/dark cycle but if your eyes are not functional to detect the light, to send that signal to the brain, so someone with no light perception or no eyes, then the clock runs on its own internal time.Ìý On an average in blind people, that’s around 24½ hours a day.Ìý So, what the biological clock does is try to make Tina go to sleep half an hour later every day.Ìý Now for a few days that’s fine but, of course, after 24 days the biological clock is telling Tina to go to sleep in the middle of the day and then stay awake all night and then she goes round and round in this cycle of disruption.Ìý And so, sometimes it’s hard to understand that there’s a cycle because you need to really to look at the sleep pattern over some weeks or months but what you end up observing in patients is good sleep, then bad sleep, then good sleep, then bad sleep in this never-ending cycle and that’s why it’s called non-24-hour sleep-wake disorder.Ìý

Ìý

Now, there are only two treatments for this – melatonin is one and we reported that for the first time really over 20 years ago at Surrey.Ìý And then there’s a melatonin like drug, a melatonin agonist, which has been approved by the European Medicines Agency but I don’t think is available yet in the UK.Ìý But both of these drugs act in the same way.Ìý They provide a replacement time cue for the light signal that is missing.Ìý There are actually melatonin receptors on the clock in the brain and then if you take melatonin or tasimelteon, which is the other compound, every 24 hours it provides a time cue for the body clock to lock onto.

Ìý

So, it’s quite different to how you would take a sleeping pill, you may take it relative to bedtime.Ìý What’s very important for… in training or resetting the biological clock, which is what we’re trying to do here, is to take it at the same clock time every day, so that the 24-hour clock has got a time cue to latch on to.

Ìý

White

The question I must ask you is, you know, you said that this has been known for 20 years or more, why would it take so long to have a solution to Tina’s problem?

Ìý

Lockley

Well, there is a solution in that you can obtain melatonin and as Dr Whelan has done and I’ve worked with other physicians in the past you can get a melatonin prescription on a named patient basis.Ìý So, access isn’t really an issue, it’s just a step more you have to go through to obtain it and it’s quite an inexpensive drug, I understand, so cost isn’t really a problem.Ìý It is just about having the GPs or the sleep physicians or neurologists understand the real cause of the disorder because this isn’t a sleeping disorder in itself, it’s a clock disorder and so melatonin is working through resetting the clock, which then resets sleep but also resets mood, metabolism, immune function, all the rhythms the clock controls.Ìý So, it’s absolutely the right treatment and, yes, we probably do need an easier way for people to access it…

Ìý

White

Well, that’s the problem, isn’t it, and that’s what blind people have been complaining about.Ìý I suppose what I want to ask you, is there a simple answer to the question – when it is appropriate to prescribe melatonin for someone?

Ìý

Lockley

So, if a totally blind person, meaning someone with no light perception, who reports cyclic sleep disturbances they’ll very, very likely have this disorder, we think anywhere from 55-70% of totally blind people have this disorder, then melatonin would really be the first-choice treatment or tasimelteon if that’s available in the UK.Ìý And the lower doses, as Dr Whelan mentioned, a lower dose is actually a little better than a higher dose and so even something as low as a 0.5 milligram dose has shown to be very effective to treat this disorder but it’s important to be taken at the same clock time every day to give that time cue to the brain.

Ìý

White

Let me therefore introduce Kaukub Asia.Ìý You also have a considerable sleep problem but you do have some light perception, just explain a bit more about your situation and why you think melatonin is the right thing for you.

Ìý

Asia

Absolutely.Ìý So, again I was born with retinopathy of prematurity, I have no functioning vision in my right eye but I have, what the ophthalmologists steer as light perception in my left eye.Ìý My sleep pattern has been disturbed for many a year.Ìý And I’ve looked at alternative remedies but again, sadly, I was told I couldn’t access any melatonin, I couldn’t access anything in relation to support until now and it was a GP that prescribed me melatonin.

Ìý

White

So, you’ve been prescribed melatonin but you were complaining, I think, about the extent to which you’d had conflicting information and you’d also been told, pretty definitely, if you’ve got any light perception it won’t be any use to you, I think you have been told that.

Ìý

Asia

Yes, so, I was told that if an individual… if they can see any differentiation between daylight and night, then it wouldn’t work for them, that it’s not of any benefit, you have to be a totally blind person with no functioning vision.Ìý So, there seems to be a lot of contradiction.

Ìý

White

Well, it does.Ìý Just while you’re on, let me come back to Professor Lockley and say, I mean is that right, would you say to someone this won’t be any good for you at all, even though she’s obviously taken it at different times?

Ìý

Lockley

No, not necessarily.Ìý So, there are a small number of cases of people with light perception and even with false sight that can develop non-24-hour sleep-wake disorder.Ìý It’s much rarer in those individuals than someone who is totally blind but more work up is needed.Ìý And so what we usually do, in our research studies, but can also be done clinically, is we measure a marker of the biological clock, we measure sometimes your natural melatonin rhythm or your natural cortisol rhythm, usually in urine samples, it’s very straightforward to do, we’ve done it in hundreds of people and then we measure your internal clock time, to see if it’s synchronised to 24 hours or to see if it shows a non-24 hour rhythm.Ìý If we can confirm that there is a non-24-hour rhythm in these hormonal markers, then Kaukub would have non-24- hour sleep-wake disorder and then would be eligible for melatonin treatment.Ìý But we need to make sure that people don’t think that melatonin is useful for non-circadian sleep disorders, it really isn’t, it’s not a very good sleeping pill, it’s not very good at tackling insomnia, for example, it really only is very useful at resetting the clock for someone who has this non-24- hour sleep-wake disorder through visual impairment.

Ìý

White

But I suppose therefore the thing I want to kind of press with you is I’m just wondering why people are getting such conflicting information and why Tina and Kaukub have, you know, lived much of their lives without apparently getting the answers to the questions that you’re actually giving us now and which Tim Whelan has attempted to do for Tina.

Ìý

Lockley

Well, you heard it from Dr Whelan, this is new to him, there is not very much education around sleep disorders in general, in medical training, there’s even less known or talked about circadian rhythm sleep disorders, which is what this is.Ìý And non-24 hour is quite a rare disorder.Ìý But, of course, there are centres to contact.Ìý We’ve been studying this at Surrey, in fact, since the 1980s, in fact Professor Josephine Arendt, who sadly passed over recently, was the first person to give melatonin to a blind man to treat this disorder.Ìý And so, there is the information out there, there’s a lot of research out there but, you know, doctors need to be a little bit of digging to reach it.Ìý And we’re happy to help if patients want to get in touch with us at the University of Surrey, we’re happy to provide the information to GPs with the reasons why this is important for this group of patients.

Ìý

White

Okay, that’s really helpful.Ìý Just finally, because we’re now short of time, but Tina, you have a world expert at your disposal, I do think you had certainly something you wanted to ask.

Ìý

Snow

Actually, he has answered my questions during his comprehensive discussion but I was just going to say is it one of those treatments which you stay on for life, now we’ve discovered it?

Ìý

White

Professor Lockley?

Ìý

Lockley

So, it is a lifetime treatment, yes because it’s providing that replacement for the loss of light information each and every day, so if you stop taking the melatonin you will revert back to that non-24-hour day, which is unfortunate but at least the treatment on a daily basis works.Ìý In terms of the optimal treatment, we should be looking for a fast release preparation, not a sustained release, and a low dose, something around 0.5 milligrams would be ample.Ìý So, an hour or two before you maybe want to go to sleep, that’s fine.

Ìý

Snow

So, do I need to change that to a short release 0.5?

Ìý

Lockley

Well, Dr Whelan and I can get in touch about dosing the preparation just to make sure you’re getting the optimal one but taking whatever dose of melatonin at the same time every day is what’s key for this disorder.

Ìý

White

Well, that’s great, we’ve brought you and Dr Whelan together, so hopefully we’ve got a whole team on your case now, Tina.

Ìý

Snow

Well, I’d like to thank Dr Whelan and also Professor Lockley.Ìý It’s like a miracle has occurred in my life after 56 years, well, it’s life changing, thank you very much.

Ìý

White

Well, to Professor Steven Lockley, to Dr Timothy Whelan, to Kaukub Asia and to Tina Snow, who raised this, thank you very much indeed.

Ìý

And that’s it for today but whenever we’ve raised this issue in the past there’s always been a host of comments and questions from you.Ìý So, if you’d like to add it, you can email intouch@bbc.co.uk, leave a voice message on 0161 8361338 or go to our website bbc.co.uk/intouch.

Ìý

From me, Peter White, producer Beth Hemmings and studio managers Mitchell Goodall and Jack Morris, goodbye.

Ìý

Ìý