Airport hand baggage allowance and CPAP

Replies to This Discussion

Permalink Reply by Rosemary Kemp on May 8, 2012 at 20:57

I know that Tigers Fan sounds a little cruel but I think he is probably right. OSA is an illness and not regarded as a disability by anyone I know. Disabilties' rights organisations might not be of a lot of help therefore but that doesn't mean that airport managers and directors can't be lobbied. Letters to the papers can bbe sent. Television news stories perhaps? Human rights are certainly being violated if we sufferers are being discriminated against. OSA could certainly be viewed as a "perceived disability".

The advice to buy a special, light cpap for travel is a great idea as Tigers Fan suggests. To have one with a detachable humidifier for travel is a sound idea. I tend to travel without the humidifier to make my bag lighter and I carry other things in the space it leaves behind. The hospital / sleep clinic may well privide a more modern machine. It's worth asking.  

These machines are expensive I know but I chose to buy an apap machine myself. The hospital had to become involved as they expect to be able to monitor my condition and the gear is prescription only. The amount of grief it would save to do this may well be worth its weight in gold for Christine's partner as well as for herself and mean that air travel might occur without so much additional stress which is also bad for our hearts!

I hope the airport authorities start to take this illness more seriously soon.

I would also like to put my hands up and admit that my huge weight (albeit in the past) has exaccerbated by condition and therefore much of my personal OSA grief was self inficted. This is not the case for everyone though. There are plenty of thin people out there with OSA. We should be cautious over comments about how we cause our own conditions but it can't be completely ignored that there is truth in the comments.

If we enter this sort of disucssion we need to ask whether, for example, we should refuse treatment for lung cancer when someone is a smoker or used to smoke? Do we refuse heart surgery for someone who has eaten fry ups all of their life? Gastric bands for people who refuse to diet and take exercise is also a hot potato isn't it? We've had this discussion on the forum already haven't we? 

We can help ourselves by taking proper exercise and eating appropriately. Perhaps if we did these things for ourselves, people might be more sympathetic and want to help people like us with OSA without being too judgemental.    

Rosemary

   

Tigers Fan said:

Let'1s begin by pointing out that OSA is NOT a disability.

 

Thee are two ways of flying with CPAP - the easy way and the way you appear to be doing it, Christine.

 

You can carry your CPAP extra to your luggage allowance but it MUST go in the hold to qualify. You'd have to be nuts to do that! So we carry it as hand luggage. Two things come into play then - the airport security restrictions and the airline regulations. You can circumvent both by carrying only one piece of hand baggage. Ah! I hear you cry - but my husband's NHS CPAP takes up all his hand baggage allowance. The way round that is to buy a small, compact CPAP for travelling (and back-up at home). Why should you? No reason - it's a choice. Battle on as you have been or take a pragmatic approach. From the trips you discuss, a travel CPAP is within your reach - or take a more modest trip next time and use the difference to buy a small machine.

 

Our fellow countrymen and women are indeed the worst for making a huge fuss about a piece of medical equipment. I've found it doesn't even get to the airline regs because the airport security people have decreed that we can carry but a single piece of hand luggage - too much work for them to look at two bags in the X-ray machine?

 

Another thought: if a CPAP takes up all your hand luggage allowance, it is a very cumbersome machine - so I guess it is old so I guess you should get onto your sleep clinic for a modern machine. You need one that detaches from the humidifier base if you intend travelling with it. (Not as nice, but smaller, lighter, more compact without a humidifier.)

• ▶ Reply

Permalink Reply by Christine Woods on May 8, 2012 at 21:24

Thanks
Have just read in another discussion forum the term 'controlled' disability. The person says sleep apnoea is similar to diabetes and insulin treatment ,saying the CPAP controls the sleep apnoea disability. Also read in NHS Choices item an expert talking about sleep apnoea being a disability. One item for equality and 'disability' argues disability only relevant if the condition affects activities of daily living.
So perhaps the final answer will be 'maybe' Stll no word back from the advisory service - you will be the first to hear when it arrives.

Rosemary Kemp said:

I know that Tigers Fan sounds a little cruel but I think he is probably right. OSA is an illness and not regarded as a disability by anyone I know. Disabilties' rights organisations might not be of a lot of help therefore but that doesn't mean that airport managers and directors can't be lobbied. Letters to the papers can bbe sent. Television news stories perhaps? Human rights are certainly being violated if we sufferers are being discriminated against. OSA could certainly be viewed as a "perceived disability".

The advice to buy a special, light cpap for travel is a great idea as Tigers Fan suggests. To have one with a detachable humidifier for travel is a sound idea. I tend to travel without the humidifier to make my bag lighter and I carry other things in the space it leaves behind. The hospital / sleep clinic may well privide a more modern machine. It's worth asking.  

These machines are expensive I know but I chose to buy an apap machine myself. The hospital had to become involved as they expect to be able to monitor my condition and the gear is prescription only. The amount of grief it would save to do this may well be worth its weight in gold for Christine's partner as well as for herself and mean that air travel might occur without so much additional stress which is also bad for our hearts!

I hope the airport authorities start to take this illness more seriously soon.

I would also like to put my hands up and admit that my huge weight (albeit in the past) has exaccerbated by condition and therefore much of my personal OSA grief was self inficted. This is not the case for everyone though. There are plenty of thin people out there with OSA. We should be cautious over comments about how we cause our own conditions but it can't be completely ignored that there is truth in the comments.

If we enter this sort of disucssion we need to ask whether, for example, we should refuse treatment for lung cancer when someone is a smoker or used to smoke? Do we refuse heart surgery for someone who has eaten fry ups all of their life? Gastric bands for people who refuse to diet and take exercise is also a hot potato isn't it? We've had this discussion on the forum already haven't we? 

We can help ourselves by taking proper exercise and eating appropriately. Perhaps if we did these things for ourselves, people might be more sympathetic and want to help people like us with OSA without being too judgemental.    

Rosemary

   

Tigers Fan said:

Let'1s begin by pointing out that OSA is NOT a disability.

 

Thee are two ways of flying with CPAP - the easy way and the way you appear to be doing it, Christine.

 

You can carry your CPAP extra to your luggage allowance but it MUST go in the hold to qualify. You'd have to be nuts to do that! So we carry it as hand luggage. Two things come into play then - the airport security restrictions and the airline regulations. You can circumvent both by carrying only one piece of hand baggage. Ah! I hear you cry - but my husband's NHS CPAP takes up all his hand baggage allowance. The way round that is to buy a small, compact CPAP for travelling (and back-up at home). Why should you? No reason - it's a choice. Battle on as you have been or take a pragmatic approach. From the trips you discuss, a travel CPAP is within your reach - or take a more modest trip next time and use the difference to buy a small machine.

 

Our fellow countrymen and women are indeed the worst for making a huge fuss about a piece of medical equipment. I've found it doesn't even get to the airline regs because the airport security people have decreed that we can carry but a single piece of hand luggage - too much work for them to look at two bags in the X-ray machine?

 

Another thought: if a CPAP takes up all your hand luggage allowance, it is a very cumbersome machine - so I guess it is old so I guess you should get onto your sleep clinic for a modern machine. You need one that detaches from the humidifier base if you intend travelling with it. (Not as nice, but smaller, lighter, more compact without a humidifier.)

• ▶ Reply

Permalink Reply by Rosemary Kemp on May 8, 2012 at 21:55

Hi Christine,

I suppose different people use words in different ways.

I ran an advocacy charity for twenty years and its remit was "special needs", which included all disabilities and illnesses and the families, carers and professionals invloved in the care. I think that this is probably as "muddy" a situation as it is because there are lots of people out there without partners / carers and they need to look after their own conditions with the aid of a cpap machine. Maybe the fact that they don't have carers means that they are more likely to be viewed as "ill" than disabled but the  I suppose there are plenty of people in wheelchairs, also lookingf after themselves. So it ends up being about perceptions.

Personally, I never say that I have a disability when I'm asked on the various forms I have to fill in at work. I do however say that I have an illness. When I was eight and a bit stones heavier, I definitiely regared myself as being disabled. The cpap and apap machines have helped me to view my illness in a different light. My sypmtoms are so many fewer now and I put that down to the fact that my sleep now makes self discipline for diet and exercise possible.

My diabetes and asthma are in remision. My hypothyroidism is now controlled and my blood pressure and cholestorol levels are also in  hand. This has happened because of my chaged life style. Not that it isn't a constant struggle and I am always at risk of sliding back. So it is scary but there is much more hope and a real life!

I wish you luck in your quest to get positive discrimination. That will help to give you and others with OSA equal access to the world.

Best wishes, Rosemary     

Christine Woods said:

Thanks
Have just read in another discussion forum the term 'controlled' disability. The person says sleep apnoea is similar to diabetes and insulin treatment ,saying the CPAP controls the sleep apnoea disability. Also read in NHS Choices item an expert talking about sleep apnoea being a disability. One item for equality and 'disability' argues disability only relevant if the condition affects activities of daily living.
So perhaps the final answer will be 'maybe' Stll no word back from the advisory service - you will be the first to hear when it arrives.

Rosemary Kemp said:

I know that Tigers Fan sounds a little cruel but I think he is probably right. OSA is an illness and not regarded as a disability by anyone I know. Disabilties' rights organisations might not be of a lot of help therefore but that doesn't mean that airport managers and directors can't be lobbied. Letters to the papers can bbe sent. Television news stories perhaps? Human rights are certainly being violated if we sufferers are being discriminated against. OSA could certainly be viewed as a "perceived disability".

The advice to buy a special, light cpap for travel is a great idea as Tigers Fan suggests. To have one with a detachable humidifier for travel is a sound idea. I tend to travel without the humidifier to make my bag lighter and I carry other things in the space it leaves behind. The hospital / sleep clinic may well privide a more modern machine. It's worth asking.  

These machines are expensive I know but I chose to buy an apap machine myself. The hospital had to become involved as they expect to be able to monitor my condition and the gear is prescription only. The amount of grief it would save to do this may well be worth its weight in gold for Christine's partner as well as for herself and mean that air travel might occur without so much additional stress which is also bad for our hearts!

I hope the airport authorities start to take this illness more seriously soon.

I would also like to put my hands up and admit that my huge weight (albeit in the past) has exaccerbated by condition and therefore much of my personal OSA grief was self inficted. This is not the case for everyone though. There are plenty of thin people out there with OSA. We should be cautious over comments about how we cause our own conditions but it can't be completely ignored that there is truth in the comments.

If we enter this sort of disucssion we need to ask whether, for example, we should refuse treatment for lung cancer when someone is a smoker or used to smoke? Do we refuse heart surgery for someone who has eaten fry ups all of their life? Gastric bands for people who refuse to diet and take exercise is also a hot potato isn't it? We've had this discussion on the forum already haven't we? 

We can help ourselves by taking proper exercise and eating appropriately. Perhaps if we did these things for ourselves, people might be more sympathetic and want to help people like us with OSA without being too judgemental.    

Rosemary

   

Tigers Fan said:

Let'1s begin by pointing out that OSA is NOT a disability.

 

Thee are two ways of flying with CPAP - the easy way and the way you appear to be doing it, Christine.

 

You can carry your CPAP extra to your luggage allowance but it MUST go in the hold to qualify. You'd have to be nuts to do that! So we carry it as hand luggage. Two things come into play then - the airport security restrictions and the airline regulations. You can circumvent both by carrying only one piece of hand baggage. Ah! I hear you cry - but my husband's NHS CPAP takes up all his hand baggage allowance. The way round that is to buy a small, compact CPAP for travelling (and back-up at home). Why should you? No reason - it's a choice. Battle on as you have been or take a pragmatic approach. From the trips you discuss, a travel CPAP is within your reach - or take a more modest trip next time and use the difference to buy a small machine.

 

Our fellow countrymen and women are indeed the worst for making a huge fuss about a piece of medical equipment. I've found it doesn't even get to the airline regs because the airport security people have decreed that we can carry but a single piece of hand luggage - too much work for them to look at two bags in the X-ray machine?

 

Another thought: if a CPAP takes up all your hand luggage allowance, it is a very cumbersome machine - so I guess it is old so I guess you should get onto your sleep clinic for a modern machine. You need one that detaches from the humidifier base if you intend travelling with it. (Not as nice, but smaller, lighter, more compact without a humidifier.)

• ▶ Reply

Permalink Reply by Pippa Gore on May 8, 2012 at 23:00

Just to add my experience so far, I'm travelling to the USA in 3 weeks time, having read this thread I must say it panicked me a bit, so I rang BA and they said no problem, the CPAP machine is NOT considered part of my hand luggage allowance and they have noted on my flight details my intention to travel with the CPAP machine for outward & return journeys.

They did advise me to check with my onward connecting airline and even provided the phone number. They couldn't have been more helpful and I was very pleased with their response.

I phoned Alaska Airlines who were slightly surprised at my question and said there would be no problem at all, they considered the machine as essential medical equipment, but not withstanding that fact, as it was an International flight they would honour any luggage allowances that the primary carrier has in place.

So I feel a lot happier now - perhaps it is who you travel with that dictates whether there is a problem, I will report back following my trip

• ▶ Reply

Permalink Reply by Tigers Fan on May 9, 2012 at 9:53

That's brilliant, Pippa, but ....... beware airport security, who are a law unto themselves. I'd check with the various airports if you are permitted more than one hand bag.

 

And again, did BA understand that you were talking about hand baggage only and not about in flight usage of the CPAP?

 

Christine, I'm born and bred English and anti-monarchist, probabaly Tory voting but with strong Socialist tendencies and beliefs. I certainly don't let the NHS bully me, mainly because I know more about using an APAP than the staff at my sleep clinic. I use my own pulse-oximeter and show them how to interpret the read-outs.

 

I down-loaded my first APAP prescription from an American site and took it to my sleep clinic and had them sign and stamp it - they had diagnosed OSA but did not have funding for a machine. I subsequently used that prescription to buy another machine in UK - my travel rig. I researched on-line and came up with the Apex series as being suitable - fairly 'cheap', light-weight and compact. I bought a humidifier but returned it as it bulked out the rig too much to travel. I bought the III model but if I had to do it again would go for the I model - cheaper and does the job but with fewer bells and whistles.

 

The NHS do NOT look at every night's data - no time let alone inclination. If they look at data at all, I doubt they'd go back a week - no need to, they are interested in what is happening now, not historically. As for your partner waking 36 times - in what period? Whatever, it sounds to me like that is the area you should be fighting about - his therapy is plain not working!! Not unless it's 36 times a month, anyway.

 

If you let OSA become a disabling condition for you and/or your partner, you are missing out on life! Properly treated, OSA is nothing more nor less that having to wear a mask and breath slightly compressed air at night - day-time, you are the same as everyone else! And you dip out on a bit on hand baggage space and weight, of course!

 

Me cruel? Nah! A tad indiscriminate with the truth on occasion when I see self-delusion around me, is all.

• ▶ Reply

Permalink Reply by Christine Woods on May 9, 2012 at 10:35

He has recently bought a FitLiife XL mask and says for the first time he has a mask that is helping him to get a longer sleep. Has bought a hose lift and says this is helping also. Says he is now looking forward to seeing what is said at next sleep clinc visit -they said he was ariousing/wakening up more than 36 times per night so hope this now reduced as slept for four and a half hours the other night.

However this is getting away from the travel issue and CPAP! The last thing I would want is to worry someone, Pippa, so really glad to hear your news. We did a Princess Canada land and Alaska cruise. Flew back from Anchorage , the airport staff behaved differently from the airline staff re CPAP - they searched every bit of the CPAP which was complely understandable but quite time consuming, our group got a bit delayed because of this but we all got on the plane in time!! . We only had the one piece of hand luggage so glad you have the OK to take two bags. We did not fly BA to Canada with Princess maybe we should have., regardbr/>
Tigers Fan said:

That's brilliant, Pippa, but ....... beware airport security, who are a law unto themselves. I'd check with the various airports if you are permitted more than one hand bag.

 

And again, did BA understand that you were talking about hand baggage only and not about in flight usage of the CPAP?

 

Christine, I'm born and bred English and anti-monarchist, probabaly Tory voting but with strong Socialist tendencies and beliefs. I certainly don't let the NHS bully me, mainly because I know more about using an APAP than the staff at my sleep clinic. I use my own pulse-oximeter and show them how to interpret the read-outs.

 

I down-loaded my first APAP prescription from an American site and took it to my sleep clinic and had them sign and stamp it - they had diagnosed OSA but did not have funding for a machine. I subsequently used that prescription to buy another machine in UK - my travel rig. I researched on-line and came up with the Apex series as being suitable - fairly 'cheap', light-weight and compact. I bought a humidifier but returned it as it bulked out the rig too much to travel. I bought the III model but if I had to do it again would go for the I model - cheaper and does the job but with fewer bells and whistles.

 

The NHS do NOT look at every night's data - no time let alone inclination. If they look at data at all, I doubt they'd go back a week - no need to, they are interested in what is happening now, not historically. As for your partner waking 36 times - in what period? Whatever, it sounds to me like that is the area you should be fighting about - his therapy is plain not working!! Not unless it's 36 times a month, anyway.

 

If you let OSA become a disabling condition for you and/or your partner, you are missing out on life! Properly treated, OSA is nothing more nor less that having to wear a mask and breath slightly compressed air at night - day-time, you are the same as everyone else! And you dip out on a bit on hand baggage space and weight, of course!

 

Me cruel? Nah! A tad indiscriminate with the truth on occasion when I see self-delusion around me, is all.

• ▶ Reply

Permalink Reply by Tigers Fan on May 9, 2012 at 20:23

Hi Christine

 

Would you please explain to me your assertion that " they searched every bit of the CPAP which was complely understandable". I would find that very objectionable.

 

A related issue - people in this thread have referrd to swabs being taken - can someone explain that to me, please?

 

Entirely your affair, Christine, but at 36 arousals a night of say 8 hours your husband has an AHI of 4 which is not bad but certainly isn't good - acceptable but would leave him stressed and tired. If they meant he has an AHI of 36 then he still lives with the equivalent of a fairly severe (a senior moment - the categories have flown from my mind) case of untreated OSA. Yes - UNtreated. We don't talk of arousals per night because it is a bit meaningless, we speak of the average per hour - an index no matter how long or short the night.

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Permalink Reply by Christine Woods on May 9, 2012 at 20:41

Thanks your assessment of how my partner reacts some days is correct. I do not understand the words AHI etc and neither does my partner who has OSA. Sounds very scientific. The clinic are talking of giving him medication but from what I have read this is not a good road to go down. My partner will tell the clinic he has bought the mask and hopefully this will lead to better recordings and improved quality of life. Today he has been very alert, no evening sleeping so can only put this down to the effectivenness of the new mask , hope we are correct.

Re your first question Lockerbie is not too far from where we stay.

Tigers Fan said:

Hi Christine

 

Would you please explain to me your assertion that " they searched every bit of the CPAP which was complely understandable". I would find that very objectionable.

 

A related issue - people in this thread have referrd to swabs being taken - can someone explain that to me, please?

 

Entirely your affair, Christine, but at 36 arousals a night of say 8 hours your husband has an AHI of 4 which is not bad but certainly isn't good - acceptable but would leave him stressed and tired. If they meant he has an AHI of 36 then he still lives with the equivalent of a fairly severe (a senior moment - the categories have flown from my mind) case of untreated OSA. Yes - UNtreated. We don't talk of arousals per night because it is a bit meaningless, we speak of the average per hour - an index no matter how long or short the night.

• ▶ Reply

Permalink Reply by Terry Vella on May 9, 2012 at 23:47

Christine, his AHI is basically how many time he stops breathing per hour on average for more than 10 seconds. I think you said his without CPAP was 36, that then measures the severity of sleep apnea he has which in his case is severe. His machine should give him basic information on the screen (depending on which machine he has) and tell him what his AHI is each night and how many hours he has used the machine each night. It's probably best not to get too technical at this stage but he can download his figures onto a computer each day. The AHI reading on the screen is just a guide as it is not as accurate as a sleep study and all sorts of things can affect it like movement etc. If his AHI is below 5 that is good, the normal person has a AHI of 0-5. It's good to have a look each day and see how he is performing, the best test is by how he is feeling. His AHI will change from day to day depending on all sorts of things i.e. meds, weather, what we eat, when we eat, leaks etc. If his AHI is higher than 5 for an extended period of time like a couple of weeks, that when it is good to have someone check the equipment etc.

• ▶ Reply

Permalink Reply by Rosemary Kemp on May 10, 2012 at 0:15

Hi again Christine. Terry's advice is helpful. If you have a hospial like mine though, you may not be able to see the statistics on the machine. They sometimes disable (or don't give us the necessary software) the machines and data can't be accessed. They don't seem to make it easy for us to get involved with our treatment. Many sleep clinics just expect us to plug it all in and use it. They call it "compliancy" and that is the only bit of jargon they give us (they gave to me anyway). No questions answered! I also had no idea what an AHI was. I have now bought an apap machine as I told you but the hospital still don't encourage me to try to manage my own condition.

You just have to do your best but we tend to find that the NHS only supply so much stuff because they have to help so many people on a linited budget. That is why many of us end up buying extra masks and even extra machines. In the end, we all want to feel well and sometimes we have to be prepared to spend money to succeed well. I get quite a bit of help from the NHS now but I like to supplement this. I only get to see my clinicians once a year and only when I make contact with them for a yearly visit. If I was in trouble, they would see me I am sure but state of the art equipment isn't on offer.

Good luck with the whole thing. It is a long battle on many fronts.

Rosemary

• ▶ Reply

Permalink Reply by Kath Hope on May 10, 2012 at 0:17

Well said Rosemary - you took the words right out of my mouth!

• ▶ Reply

Permalink Reply by Terry Vella on May 10, 2012 at 3:29

Rosemary, sorry I'm probably talking from an Australian point of view, our health system is very different, if you don't have private health insurance you have to wait years, if you do, like me, I only get reimbursed about 25% of all costs, so we are basically on our own and seeing we own everything ourselves, they can't block anything. I do think in all countries, you have to take your health into your own hands and do what you think is right for you rather than leaving it to so called professionals. That includes reading up on SA, understanding what it is, treatments etc.

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