Stubborn family member

[don logan]

Hi, i have a family member who has OSA, not confirmed as they won't get tested due to the worry of losing their driving licence. I'm sure this kind of thing always comes up on here.

I've tried and tried and tried to convince them that they won't lose their licence and have sent emails to various sleep clinics who email back saying that their tests and treatments are completely confidential, they are not obliged to inform the DVLA on the patients' behalf, etc.

Family member still won't hear of it. There is simply no persuading them.

So, they have looked into renting a CPAP machine for a month to see if it helps. If it does then they'll look into getting one anonymously.

I know this isn't the way to go about it, but there are simply no other options that they will accept.

Can anyone advise on this? I thought that:

a) You'd need a prescription?

b) You need it set up and tuned properly to your needs by a sleep therapist, you don't just plug it in and go to sleep?

c) CPAP can cause adverse effect if not used properly?


Is this method of self treatment likely to have any effects?

Can anyone advise?

Thanks.

P.s. Please no 'You should inform on them before they kill someone' or 'Don't they realise they're putting other people's lives at risk?' type replies. I've heard them all and it's unfortunately either treatment this way and the possibility of positive results, or no treatment at all and then the continued danger of driving with OSA.

Thanks in advance.

[Sparticus]

Tough, very tough but unlike some I do understand and thats part of the big problem with OSA how many drivers do you think are still on our roads with sleep apnea must run into the thousands and will they get tested, not a chance. In todays climate no one is going to go to the doctors and say I need testing when they know theres a chance that they will have to hang up there keys. It comes down to morals, for me I went volutary as I couldnt go on but when your livelihood is at stake I think I would have had to think twice before going.

1. Yes you need a perscription from a doctor but again could pick one up secondhand

2. Yes and no, these machines can be set up by yourself IF you know what your doing.

3. NO. but it would be dam uncomfortable and again it wouldnt work unless it had been set up properly and to do this you HAVE to get a sleep test at the hospital so this would rule out buying one on the sly.


He could keep driving untill he has had the test which would prove if he has or hasnt got OSA and if he has, he would be given a machine and could be back on the road in a few weeks if he takes to the machine ok.

If he has an accident and there is any evidence that he fell asleep at the wheel then his licence will be away for alot longer than a few weeks it could be several months. The question is simple, do the right thing and live or chance it and die at the wheel or via is heart or his brain. Dont just take my word for it:




THE FAMILY of a woman killed when a lorry driver fell asleep at the wheel have warned “it could happen again”.

Robert Earnshaw, 42, from Hyde in Cheshire, walked free from court after he had been diagnosed with a sleep disorder which made him pass out at the wheel without warning.

Grandmother Susan Clark, 55, from Marshfield near Cardiff, was visiting her pregnant daughter in April 2008 when Earnshaw’s lorry smashed into her car as she queued at a motorway slip road near Catthorpe, Leicestershire.

The force of the crash pushed her car under an articulated lorry in front and caused a six-car pile-up.

Mrs Clark died at the scene after suffering massive internal injuries. Her son, Jason Clark, 37, of Pontyclun, said his sister Sarah Richards, 30, who was eight-and-a-half months pregnant at the time, “blamed herself” for the crash.

He said: “She was on her way to babysit for my sister while she had a scan – she had made that journey probably a hundred times before and she knew it like the back of her hand.

“An hour after the accident my sister called to say what had happened and that mum had died at the scene.”

Hundreds of people came to pay their respects at the funeral for the popular Tesco worker, which was held at St Mary’s Church near the home she shared with her husband Robert, 57, in Marshfield.

Jason was in Leicester Crown Court when Earnshaw was cleared of causing his mother’s death.

Speaking exclusively to Wales on Sunday, he told how the lorry driver had slept for 20 minutes in a motorway service station before going back out on the road and crashing into Mrs Clark’s car 10 minutes later.

He said: “How does someone go from awake to asleep in a matter of seconds? He didn’t even realise. He said it was completely out of the blue.

“He said he had a sleep 10 to 20 minutes before. He got back onto the motorway afterwards and 10 minutes later he crashed into my mum’s car.

“He claims he can’t remember anything from then until a few seconds after the crash.”

Earnshaw was diagnosed with obstructive sleep apnoea (OSA) 15 months after the crash. The condition which means he stops breathing during his sleep.

The condition is caused by throat muscles which relax and block the sufferer’s airway. This makes them wake up and take a loud breath or snore before falling back to sleep.

Acute suffers are often obese, have thick necks and can stop breathing up to 300 times a night.

It is estimated that about 3.5% of men and 1.5% of women have the condition – which equates to more than 70,000 people in Wales alone.

A jury cleared Earnshaw of causing Mrs Clark’s death when his defence claimed his condition had deprived him of sleep but, instead of feeling drowsy, he had fallen asleep at the wheel without any warning.

Jason and his wife Ceri-Ann Clark, 36, are now trying to raise awareness of the condition in the hope scientists will set out to prove or disprove its existence.

Jason said: “An expert said they had heard other people say this had happened but had never witnessed it themselves.

“If that is true, how many other people on the roads have this condition? If the experts are right, it could happen again.”

[Anniett]

Hi, i have a family member who has OSA, not confirmed as they won't get tested due to the worry of losing their driving licence.

When I went to my GP he suspected OSA and sent me to a specialist but as it had not been diagnosed I did not have to alert DVLA. The specialist arranged a sleep test and a few days later I saw him again and he confirmed sleep apnoea. I downloaded the forms from the DVLA and arranged the rental of an APAP machine straight away (the specialist supplied a prescription so that I could get one privately and quickly). The machine arrived 24 hours later and so when I filled in the forms for the DVLA I could truthfully say that I was being treated. By the time I got a response from the DVLA (you can carry on driving until they say you can't!) I was fully compliant and feeling wonderful! As a result they (DVLA) were quite happy for me to carry on driving with the proviso that I must continue to use the machine and notify them of any changes.

Can anyone advise on this? I thought that:

a) You'd need a prescription?

Yes, you do unless you buy one secondhand, privately.

b) You need it set up and tuned properly to your needs by a sleep therapist, you don't just plug it in and go to sleep?

This is debatable. A CPAP (Continuous pressure) machine does need to be set up to your personal requirements but an APAP (Automatic pressure) machine detects events and raises pressure as and when required. The prescription you are given should have the details of your requirements as found by the sleep test and the machine should arrive already set up by the retailer. However, once treatment starts the requirements can change and this is where the 'tweaking' by sleep techs comes in. However, once you are using the machine and showing improvement the DVLA are happy.

c) CPAP can cause adverse effect if not used properly?

I cannot comment on this as I have not done any research into it.

It is not easy to get used to sleeping in the mask with air being blown at you and there are many pitfalls down the route to compliance. You need the support of your specialist, technician, family and, for me, this forum. You need the right mental attitude and if you do not accept that you really need this treatment then you will not succeed. As soon as your family member feels the benefits of treatment (if they are diagnosed with OSA after their sleep test, after all it could be something else) it will be much easier for them to get used to it!

Good luck to them and to you!

Anniett

[Tigers Fan]

Is the stubborn family member over 18 years of age? Are you a Doctor and how did you diagnose OSA?

Does the nagging of a friend or family member to do something you don't want to do make you more or less inclined to do that thing?

You need a prescription to get a CPAP. It must be set up for the individual's needs and I wish the NHS would accept this fact. There are all sorts of problems involved in the use of CPAP and thiis forum is full of threads on how to overcome them. Of course there is the possibility of adverse effects but nothing to die from.

Your questions indicate that you do not have the knowledge to attempt a DIY solution for your family member, even if you could get him/her to use the kit.

TF

[don logan]

Thanks for the reply Sparticus. Do you think this approach (rental, then buying secondhand if it works) is likely to have an effect? What factors have to be considered when setting up a CPAP?

I haven't been on here long so don't know if anyone's posted up their experiences of DIY'ing it?

Thanks again.

[Fredxx]

Rental and buying secondhand is a bad idea.

In order to get your settings for the CPAP you need a sleep study. this is done with a machine that monitors you sleeping, detects apnoeas and then uses an APAP (Auto CPAP) machine to determine the pressure you need to stop the apnoeas. Without that test you do not know if you will respond to CPAP or APAP therapy, and if you will, the settings you need.

Yes, I guess you could do it by guesswork, Trial -and-error, but you could well spend many months trying to find a setting that works, assuming there is a setting that will work.

In the mean time, there is that risk to your health, and the increased risk that you will kill someone by falling asleep at the wheel. Do you think you could live with doing that?

The Sleep clinics in the NHS will not contact the DVLA, but if that is a risk you can't live with, there are private clinics who will do it ... for a fee. If it is with a private clinic it will only go on your NHS patient records if you consent to that.

An alternative is to do a mail order sleep study, which will supply the proper kit to do the sleep study effectively, and then give you a prescription to get hold of a machine. A full mail order sleep study will cost about £250

[don logan]

Thanks Fred. I have told them that people on here have said that rental and DIY is not a good way of doing it.

I'm also afraid that they'll get the rental unit, try it, not like the mask/feeling/dry mouth etc and give it up thinking that the machines won't work for them. They'll need to understand that finding the right mask/settings/humidity/etc, will take a while and can't be easily done without help from a clinic.


And as for the

<'In the mean time, there is that risk to your health, and the increased risk that you will kill someone by falling asleep at the wheel. Do you think you could live with doing that?'>

Like i said in my opening post, i've tried telling them this and they just say that they don't get tired when driving.

I really don't know what else to say to them. I wish they'd just go and get it done properly like everyone else seems to. I think the only way they might consider this is if you could do a mail order sleep study anonymously. And i can't see that being possible?

[Fredxx]

The problem with doing it anonymously is how do you then get a prescription...

The online mail order option is about the closest you get to anonymous, and they say they are fully confidential. worth a look, or even a phone call. I'll send you a private message with the link.

[andysnorer]

Thanks Fred. I have told them that people on here have said that rental and DIY is not a good way of doing it.

I'm also afraid that they'll get the rental unit, try it, not like the mask/feeling/dry mouth etc and give it up thinking that the machines won't work for them. They'll need to understand that finding the right mask/settings/humidity/etc, will take a while and can't be easily done without help from a clinic.


And as for the

<'In the mean time, there is that risk to your health, and the increased risk that you will kill someone by falling asleep at the wheel. Do you think you could live with doing that?'>

Like i said in my opening post, i've tried telling them this and they just say that they don't get tired when driving.

I really don't know what else to say to them. I wish they'd just go and get it done properly like everyone else seems to. I think the only way they might consider this is if you could do a mail order sleep study anonymously. And i can't see that being possible?

What makes you think that they have sleep apnoea then? I only ask, because when I found out that I had it, I had been concerned for years previous to being diagnosed, and would have given anything to have been diagnosed earlier.
I used to get tired when driving, and have to say that my eyes closed a few times on long drives, so if this person is not getting tired, what makes you believe that they have the condition?
Are they overweight?
Do they snore?
Do they fall asleep regularly, whilst in company, during conversations, watching television, reading books, going to the cinema?

[symmit]

Don't get too deep guys. My story is quite simple, kept falling asleep in the day, always snored, have gained weight over the last few years. Quick google, order an overnight oximiter test, send it back, get sent an APAP, snore no more.

I reckon there'll be plenty of simple OSA cases like mine - if someone wants to take a punt on renting an APAP to see what happens I doubt it's going to be detrimental, it'll be quicker than the NHS and just as effective. Stats from the machine and staying awake all day is all you need to know about effectiveness surely?

if it doesn't work, then all you lose is money, and you can earn that again.

[Tigers Fan]

Estimate £800 - £1000 spent on a guy who does not want to know.

TF

[andysnorer]

Don't get too deep guys. My story is quite simple, kept falling asleep in the day, always snored, have gained weight over the last few years. Quick google, order an overnight oximiter test, send it back, get sent an APAP, snore no more.

I reckon there'll be plenty of simple OSA cases like mine - if someone wants to take a punt on renting an APAP to see what happens I doubt it's going to be detrimental, it'll be quicker than the NHS and just as effective. Stats from the machine and staying awake all day is all you need to know about effectiveness surely?

if it doesn't work, then all you lose is money, and you can earn that again.

I wouldn't advise that anyone goes down the "DIY" route with CPAP/APAP machines or self diagnosis, there is too much to lose.
Let the experts make a decision, because they can be far more precise. What happens if you set the machine up wrong?

[Tigers Fan]

You don't get good sleep.

[Sparticus]

I wouldn't advise that anyone goes down the "DIY" route with CPAP/APAP machines or self diagnosis, there is too much to lose.
Let the experts make a decision, because they can be far more precise. What happens if you set the machine up wrong?

I have to disagree with this, Since looking after myself I am far better off, although I still have my clinic which know nothing of me ajusting my setting and checking my results. The problem is you need a clinic to start with as its all alien at first. Its took me 2 years to get where I am and I know I couldnt have got here without them and all the peoples help on here. I still wouldnt give up my NHS clinic and help as it would cost a small fortune to go it completely alone

[andysnorer]

I have to disagree with this, Since looking after myself I am far better off, although I still have my clinic which know nothing of me ajusting my setting and checking my results. The problem is you need a clinic to start with as its all alien at first. Its took me 2 years to get where I am and I know I couldnt have got here without them and all the peoples help on here. I still wouldnt give up my NHS clinic and help as it would cost a small fortune to go it completely alone

Yet you have started up a thread asking why you are so tired, and still keep nodding off?
Maybe if you let the experts deal with your OSA, then you may have better results?