Airport hand baggage allowance and CPAP

Replies to This Discussion

Permalink Reply by Christine Woods on May 10, 2012 at 9:42

We can link with you Rosemary regarding the CPAP. My partner was seen yearly at his previous sleep clinic but now he has been transferred to another hospital they have been asking him to visit more regularly

I went with him to his last appointment armed with my questions but I got ignored. Being me and not taking no for an answer I set up a Facebook sleep apnoea carer, partner, family self-help page. I met Kath via Facebook and now yourselves so my partner and I are ever so grateful. It was also thanks to a work colleague,a sleep apnoea researcher and a medic at a local sleep department that I first received help when I asked around for ways to volunteer for sleep apnoea in retirement. I then heard about the BLF OSA campaign and I really hope my facebook page will support this campaign for carer, partner, family sleep apnoea related issues.
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I had no experience of Facebook or Twitter but now am speaking to many around the world as a sleep apnoea partner. Have even joined Linked in -one group is involved in a stop the world snoring campaign!

I retire 31st May so after will be more free to tell my story as a sleep apnoea partner I have the blessing of my workbase for my page but I only refer to myself as a partner just now . I set up the page just before my foot surgery in April and for the past 4-5 weeks my partner has had more support for his sleep apnoea than he has ever had.

Your group is so much more knowlegeable than we ever knew was possible for sleep apnoea. My partner does not know about AHI. His CPAP , a Remstar with humidifier has the number 1007861 at its base. There is a computer styled disc slotted into the side but does not seem to show any personal readings.

Thanks so much for all your support , regards
Rosemary Kemp said:

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

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Permalink Reply by Rosemary Kemp on May 10, 2012 at 17:26

Hi Terry.

I think you are right about needing to help ourselves to the greatest extent. I have never been one to just do as I am told and not try to find out what is out there. Having said that, there are occasions when one is too tired to go searching for lots of extra information (not exactly surprising if we tend to be sleep deprived!?)

Sadly, we don't seem to be encouraged in the UK to take responsibility for our condition and as a result, people often assume that they should just accept the treatment on offer via the NHS. It simply doesn't occur to a lot of people automatically to be prepared to spend their own money to supplement their NHS treatment and instead, they enter into a battle with their doctors, who invariably don't want to spend too much of their limited budgets and a brick wall is faced.

It tends to be an all or nothing way of behaving and being treated. If we opt for private medical care we can find ourselves paying for everything and getting no help from the NHS, which we all pay into as tax payers. So we can often find ourselves paying for a lot of the care twice over and only receiving one lot of care. (Not always. There are times when a private consultation can be followed up with NHS treatment).

I have had one or two medical procedures done privately (to hurry treatment along for example) and I have had to pay for every last thing despite being entitled to the same things on the NHS for no extra cost. Sometimes, I haven't received better treatment at all by paying out of my own purse but on other occasions it has been wonderful and early treatment for certain conditions can obviously be a life saver.

It is very interesting to hear from people in different countries who experience different systems of care. We can learn a lot from each other.

Best wishes, Rosemary

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.

• ▶ Reply

Permalink Reply by Christine Woods on May 10, 2012 at 20:38

I have received an email that I have to phone the Equality and Human Rights Commission tomorrow. They have received similiar questions to myself before and I have been told they will advise me how to proceed with the airline -no mention of the airport in the email.
I know what they are going to advise but I will still try to state my case. Seemingly airlines come under the Montreal Covention so our European rules do not stand. In February this year two cases to do with disability and airlines were turned down and the Equality and Human Rights Commission are thinking about taking these cases to the Supreme Court.

Rosemary Kemp said:

Hi Terry.

I think you are right about needing to help ourselves to the greatest extent. I have never been one to just do as I am told and not try to find out what is out there. Having said that, there are occasions when one is too tired to go searching for lots of extra information (not exactly surprising if we tend to be sleep deprived!?)

Sadly, we don't seem to be encouraged in the UK to take responsibility for our condition and as a result, people often assume that they should just accept the treatment on offer via the NHS. It simply doesn't occur to a lot of people automatically to be prepared to spend their own money to supplement their NHS treatment and instead, they enter into a battle with their doctors, who invariably don't want to spend too much of their limited budgets and a brick wall is faced.

It tends to be an all or nothing way of behaving and being treated. If we opt for private medical care we can find ourselves paying for everything and getting no help from the NHS, which we all pay into as tax payers. So we can often find ourselves paying for a lot of the care twice over and only receiving one lot of care. (Not always. There are times when a private consultation can be followed up with NHS treatment).

I have had one or two medical procedures done privately (to hurry treatment along for example) and I have had to pay for every last thing despite being entitled to the same things on the NHS for no extra cost. Sometimes, I haven't received better treatment at all by paying out of my own purse but on other occasions it has been wonderful and early treatment for certain conditions can obviously be a life saver.

It is very interesting to hear from people in different countries who experience different systems of care. We can learn a lot from each other.

Best wishes, Rosemary

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.

• ▶ Reply

Permalink Reply by Terry Vella on May 11, 2012 at 1:33

Rosemary, I agree with you entirely, I even had to diagnose myself with the help of Dr Google. After two years and 5 specialists telling me I had depression, then continually upping the meds (I think to make more money for them and the companies), the sleep specialist diagnosed it as soon as I walked in his door. I was looking for the answer almost 24/7 and finally found it.

• ▶ Reply

Permalink Reply by Christine Woods on May 11, 2012 at 13:58

Have just spoken with the Equality and Human Rights Commission and they have sent me an email with links to airline mobility guidance on their website "http://www.equalityhumanrights.com"
Email includes a long list of conditions but OSA not included. Refers to diabetes, epilepsy, asthma. 2 pieces of mobility equipment are allowed onto plane under European regulations .The email has included letter templates for anyone to complain if required.
Condition must be long-term and does not need the person to be medically diagnosed for their impairment. Email says what matters is the effect of the impairment not the cause/>

Christine Woods said:

I have received an email that I have to phone the Equality and Human Rights Commission tomorrow. They have received similiar questions to myself before and I have been told they will advise me how to proceed with the airline -no mention of the airport in the email.
I know what they are going to advise but I will still try to state my case. Seemingly airlines come under the Montreal Covention so our European rules do not stand. In February this year two cases to do with disability and airlines were turned down and the Equality and Human Rights Commission are thinking about taking these cases to the Supreme Court.

Rosemary Kemp said:

Hi Terry.

I think you are right about needing to help ourselves to the greatest extent. I have never been one to just do as I am told and not try to find out what is out there. Having said that, there are occasions when one is too tired to go searching for lots of extra information (not exactly surprising if we tend to be sleep deprived!?)

Sadly, we don't seem to be encouraged in the UK to take responsibility for our condition and as a result, people often assume that they should just accept the treatment on offer via the NHS. It simply doesn't occur to a lot of people automatically to be prepared to spend their own money to supplement their NHS treatment and instead, they enter into a battle with their doctors, who invariably don't want to spend too much of their limited budgets and a brick wall is faced.

It tends to be an all or nothing way of behaving and being treated. If we opt for private medical care we can find ourselves paying for everything and getting no help from the NHS, which we all pay into as tax payers. So we can often find ourselves paying for a lot of the care twice over and only receiving one lot of care. (Not always. There are times when a private consultation can be followed up with NHS treatment).

I have had one or two medical procedures done privately (to hurry treatment along for example) and I have had to pay for every last thing despite being entitled to the same things on the NHS for no extra cost. Sometimes, I haven't received better treatment at all by paying out of my own purse but on other occasions it has been wonderful and early treatment for certain conditions can obviously be a life saver.

It is very interesting to hear from people in different countries who experience different systems of care. We can learn a lot from each other.

Best wishes, Rosemary

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.

• ▶ Reply

Permalink Reply by Christine Woods on May 11, 2012 at 14:32

Have also been sent a link by the Equality and Human Rights Commission which (providing I share it correctly) gives other info: http://odi.dwp.gov.uk/docs/wor/new/ea-guide.pdf

Christine Woods said:

Have just spoken with the Equality and Human Rights Commission and they have sent me an email with links to airline mobility guidance on their website "http://www.equalityhumanrights.com"
Email includes a long list of conditions but OSA not included. Refers to diabetes, epilepsy, asthma. 2 pieces of mobility equipment are allowed onto plane under European regulations .The email has included letter templates for anyone to complain if required.
Condition must be long-term and does not need the person to be medically diagnosed for their impairment. Email says what matters is the effect of the impairment not the cause/>

Christine Woods said:

I have received an email that I have to phone the Equality and Human Rights Commission tomorrow. They have received similiar questions to myself before and I have been told they will advise me how to proceed with the airline -no mention of the airport in the email.
I know what they are going to advise but I will still try to state my case. Seemingly airlines come under the Montreal Covention so our European rules do not stand. In February this year two cases to do with disability and airlines were turned down and the Equality and Human Rights Commission are thinking about taking these cases to the Supreme Court.

Rosemary Kemp said:

Hi Terry.

I think you are right about needing to help ourselves to the greatest extent. I have never been one to just do as I am told and not try to find out what is out there. Having said that, there are occasions when one is too tired to go searching for lots of extra information (not exactly surprising if we tend to be sleep deprived!?)

Sadly, we don't seem to be encouraged in the UK to take responsibility for our condition and as a result, people often assume that they should just accept the treatment on offer via the NHS. It simply doesn't occur to a lot of people automatically to be prepared to spend their own money to supplement their NHS treatment and instead, they enter into a battle with their doctors, who invariably don't want to spend too much of their limited budgets and a brick wall is faced.

It tends to be an all or nothing way of behaving and being treated. If we opt for private medical care we can find ourselves paying for everything and getting no help from the NHS, which we all pay into as tax payers. So we can often find ourselves paying for a lot of the care twice over and only receiving one lot of care. (Not always. There are times when a private consultation can be followed up with NHS treatment).

I have had one or two medical procedures done privately (to hurry treatment along for example) and I have had to pay for every last thing despite being entitled to the same things on the NHS for no extra cost. Sometimes, I haven't received better treatment at all by paying out of my own purse but on other occasions it has been wonderful and early treatment for certain conditions can obviously be a life saver.

It is very interesting to hear from people in different countries who experience different systems of care. We can learn a lot from each other.

Best wishes, Rosemary

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.

• ▶ Reply

Permalink Reply by Kath Hope on September 9, 2012 at 23:39

Just a little update from Thomas Cook confirming they do accept CPAP as extra hand luggage http://customer-community.thomascook.com/thomascook/topics/cpap_as_...

The number to ring is 01274 384 767 for them to take a few details from you.  Hopefully the confusion will soon be sorted with all the airlines.

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Permalink Reply by Tigers Fan on September 13, 2012 at 19:18

Good luck with sorting all the airlines - that would be a great result. However, I wonder about all the airport security people and/or regulations that forbid more than one piece of hand baggage.

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Permalink Reply by Kath Hope on September 13, 2012 at 22:19

With CPAP machines getting smaller + smaller it will get easier to pack them in one bag with other items.  I like the idea of those really light cabin bags that I put on the blog in July http://www.sleepapnoeablog.com/travelling-on-holidaysvacations-trip...

In fact I found a cheaper one which is even better (think I'll add this one to the blog).....

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Permalink Reply by Christine Woods on September 13, 2012 at 22:57

My husband still has his NHS bulky CPAP. We have just booked a holiday with Thomas Cook so thanks Kath for this Update. We have been told by Thomas Cook that if my husband shows his GP letter re sleep apnoea he will be able to take his CPAP plus extra hand luggage. The million dollar question now is -as Tiger Fan mentions - will the airport staff at Glasgow and at our foreign holiday airport also agree to this???

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Permalink Reply by Kath Hope on September 13, 2012 at 23:15

I know what you + TF mean, which is why I wouldn't take any chances, and pack the CPAP in one bag with my other hand luggage.

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Permalink Reply by Philip on September 14, 2012 at 19:35

I have been abroad lots of times with my CPAP as hand luggage, as well as seperate handluggage. I have never had any problems. I always clear it with the airline in advance first (the special needs contact number). Never had any problems. Even when my wife has been told she can only take one piece of handluggage through customs and so they insisted she put her hand bag inside her formal hand luggage (as when over her shoulder they counted the hand bag as hand luggage) the same airport staff let me take the CPAP machine as a second piece of hand luggage.  I do always have the CPAP label prominently attached that Kath sells though.

Phil

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