Nemaline Myopathy Support Group

Resources

Travel - Holiday - Insurance advice

Airlines

All airlines require that you have 150% battery power available to you on flight. (This will be in case of flight delays or detours.)

Accomable.com A website listing accessible accommodation in over 60 countries.
Air Travel Air Travel Tips for Ventilator Users. Includes airline phone numbers. Page copyright 1999, so info may be out of date by now.

Air Canada

Personal experiences from people with NM. And specialised agencies.

  • Charge of CAD$150 to supply oxgen during each flight. (2008)

Delta Airlines

Personal experiences from people with NM. And specialised agencies.

  • Do NOT allow oxygen. (2009)

West Jet

Personal experiences from people with NM. And specialised agencies.

  • I've heard that West Jet is very accommodating and let's you bring your own oxygen on. (2009)

US Airways

Personal experiences from people with NM. And specialised agencies.

  • US Airways was wonderful. (2009)

Various

Personal experiences from people with NM. And specialised agencies.

  • See oxygen details in table below






Travel advice or assistance


General

Tourism questions and answers.
You can download the Trailblazers 30 page report on travelling with a wheelchair.

Download Emergency list (Microsoft Word file)

  • Arthur flies with us quite often. we have tried a few airlines. AA, BA, CX and etc. Here are the things you might want to know.
    1. Some airlines issue some sort of 'medical card' to long term patients. it's valid for a few years. The card has the patient info and the medical equipment names/models on it. It's really convenient as you only need to apply once and then for the rest, you just need to tell them the card no. and they know what you are going to bring on board. The form should be filled out by a physician. It's a shame AA doesn't have such a thing. One needs to apply everytime he/she travels.
    2. you must inform the airline what medical equipment you will bring along with you. For 1st time traveller, they check everything very carefully. I usually will hand in forms when I book my tickets. Then medical team will call back to verify more details. It normally takes 4 weeks. Once you are a requent traveller, it takes only 1 to 2 weeks to complete everything.
    3. I would suggest you apply for inflight oxygen too. So there will be enough oxygen supply for the whole journey reserved for Paul.
    For taking off/landing, some flight attendants don't allow us to use Bipap while some do allow. Most of them allow Arthur to use oxygen though. So we always use oxygen at all time. Oxygen in flight tends to exhaust Arthur less.
    4. please ask about the connecting tube to oxygen bottle. The 1st time we flew with AA, we found out the tube connecting to oxygen bottle doesn't go with our bipap. It is fixed to the bottle so we can't replace it with ours either. There was a moment I was under great pressure.
    5. You are supposed to bring your own battery for the equipment for the whole journey. some requires batt lasts 1.5 to 2 times of the whole journey. We always charge in flight but the 1st time we flew, the crew did check if we brought batt. Simetimes electricity cuts off so it's safer if you have spare.
    Those are the major things I can think of.

Canada

Tourism questions and answers.
You can download the Trailblazers 30 page report on travelling with a wheelchair.

Download Emergency list (Microsoft Word file)

UK

Tourism questions and answers.
You can download the Trailblazers 30 page report on travelling with a wheelchair.

Download Emergency list (Microsoft Word file)

Advice & Info
  • Many Local Authorities have Access Officers and Public Transport Officers. Larger urban areas have Public Transport Executives who must provide info for disabled travellers. See www.pteg.net
  • Disabled Holiday Information publish a very useful website and info sheets on accessible accommodation, etc. Most properties have been assessed DHI. All places featured in this website have been visited by a wheelchair user.
  • Managing Passengers with Respiratory Disease Planning Air Travel
    British Thoracic Society Recommendations 2004
    Summary for Primary Care
Insurance
  • European Health Insurance Card Allows UK residents free medical treatment in EU countries. This card requires renewing every five years, but this can be done online.
    When applying for travel insurance you may be better to phone the company and explain about NM. A contact in London, UK had to pay a premium of 73% over the standard insurance rate because of this particular disability! Apparently the insurance company had to add NM to their computer system and check with their Underwriters! In Europe a basic E111 should be sufficient to cover medical expenses alone. You should apply for a European Health Insurance Card which replaces the E111.

    I have used Insure and Go twice now. They had to consult a doctor about NM, but accepted the policy without any extra charge. Check that any illness or hospital treatment caused by the NM is covered. (D.McDougall)
  • Family Fund
  • Insure For All 0845 8800 694
    Advert found in Target MD magazine. Muscular Dystrophy Campaign receives a donation for each policy sold.
  • Able2Travel 0870 750 6711
  • Unique (MD Campaign get a commission if you quote ref. UNQ/TMD01) 01603 828218
  • AllClear Travel Insurance Services 08712 088579
    All Clear web address is similar to Unique. Companies must be connected somehow.
  • Chartwell Insurance 0845 260 7051/52
  • Try the Association of British Insurers for information on travel insurance for disabled people. www.abi.org.uk
  • The Post Office
    The Post Office gave me a good deal, but the policy would not cover any illness relating to NM. (2008)
    I used the PO again this year (2009). Initial questionaire. As long as physical condition has been stable for 12 months, then no additional charge. (DMcD)
  • Free Spirit 0845 230 5000
Holiday Providers

Oxygen

Tourism questions and answers.
You can download the Trailblazers 30 page report on travelling with a wheelchair.

Download Emergency list (Microsoft Word file)

  • Imogen One for in flight oxygen machines approved by many airlines.
  • Oxygen To Go Provide equipment and support to travellers requiring oxygen in flight. Also rent oxygen concentrators.
  • Recommended by an adult trache/vent user who has NM. I used an Inogen oxygen machine. They are lightweight, small and run on gel batteries. It uses ON DEMAND oxygen, so not sure it can be hooked up to a BiPAP.
    Useful advice.

Vent use in flight

Tourism questions and answers.
You can download the Trailblazers 30 page report on travelling with a wheelchair.

Download Emergency list (Microsoft Word file)

Breathing at 30,000ft

Tourism questions and answers.
You can download the Trailblazers 30 page report on travelling with a wheelchair.

Download Emergency list (Microsoft Word file)

  • Second Wind Newsletter
    Not sure if anyone is interested, but I found this website that talks about techniques to use when flying to keep oxygen levels up with or without supplementary oxygen.
  • Altitute Clinic.com
    Read how a person is tested to see if they are fit to fly.






























































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