TRAVEL
JOHN ON HIS MOBILE SCOOTER
Some people buy smaller models and place them on a trailer behind their car - brilliant. You do not have to drive the car yourself and still claim the mobility allowance for the person who does.
TRAVELLING AROUND LOCALLY WITHOUT A CAR AND SOME BENEFITS TO BE CLAIMED
If COPD severely affects your walking ability you may qualify for a mobility allowance (now known as a Disability Living Allowance) if you ARE UNDER 65. http://www.direct.gov.uk/en/DisabledPeople/FinancialSupport/DG_10011925
The benefits have now been updated for the year 2008-2009.
MOBILITY ALLOWANCE (affects most people with severe COPD)
Currently the highest component of this is £46.75 and lowest is £17.75 and you should be able to qualify for for one of these. If you use the MOTABILITY - www.motability.co.uk - you can use this money to adapt your car, buy a car or mobility scooter such as mine above. Or spend it on taxis .This allowance is not taxed and is not means tested.
Again if you are under 65 , you may claim for a Disability Living Allowance Care. However unless you are relatively immobile and have to be helped to wash and dress, you are unlikely to be able to claim more than a low allowance – if you are unable to cook proper meals for yourself etc. This now stands at £17.75, middle rate £44.85 & highest rate £67.00. Again this is tax free.
TIP - WHEN APPLYING, BASE YOUR ANSWERS ON YOUR WORST DAYS NOT YOUR BEST!
You will also be able to claim Incapacity Benefit ( short term £63.75, higher term £75.45 & highest level is now £84.45) but this is taxable. Otherwise it is not affected by any other pension you receive.
Over 65 you may qualify for an attendance allowance (which will include a mobility element). The higher rate for this is £67(2008/9) and the lower rate £44.85. This is in addition to any pension that you might receive and is not taxable.
PLEASE CLAIM THESE BENEFITS - IF YOU DESERVE THEM CLAIM THEM.
The cost of the mobile scooters varies widely according to the type of machine you require. Many people buy smaller machines that can be folded up and placed in a car or bus. If you buy on the web it is generally much cheaper and a typical outlet is
www.factoryoutletscooters.co.uk/compare_prices_shoprider .php
This reference is for Shoprider models but there are many other models available and other web sites, so browse through them. If you wish to pay a little more buy from a local shop then that might give you more peace of mind. But bear in mind that you may have less models to choose from and make sure the shop is not likely to close in the future!
Once purchased, it will give you a great sense of freedom and independence – you will be able to carry shopping bags and oxygen. Mine has a top speed of 10 mph plus(downhill!) and a range of 36 miles. It will even carry me up very steep hills but bear in mind I am not overweight! Cheaper machines do not have this ability.
Use of a car or mobile scooter should NOT replace exercise.
Do your 30-60 minutes of that first and then reward yourself with a trip to the shops or the park or in my case to the promenade.
THE EXERCISE ONLY APPLIES TO THOSE COPD PATIENTS WHO DO NOT HAVE A HEART CONDITION AND HAVE BEEN CLEARED FOR EXERCISE BY THEIR GP OR CONSULTANT.
If you use a scooter, in case you break down in the middle of nowhere always carry a mobile phone! You do not however have to pay tax or VAT or have a driving licence for a mobile scooter, but you should obtain insurance for about £60 plus.
TRAVELLING BY BUS
For people over 60 or people under 60 with severe COPD there are now FREE BUS PASSES throughout England on local buses, but not NATIONAL EXPRESS.
CONTACT YOUR LOCAL BUS COMPANY BUT FIRST READ THE FOLLOWING ARTICLE ABOUT JOHN'S EXPERIENCE WITH STAGECOACH.
HOLIDAYS WITH OXYGEN
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You should be able to be supplied with oxygen for all holidays in England and Wales from your supplier. This service will not cost you anything and the oxygen (ambulatory and/or tanks) will be delivered to your holiday destination. However, you must fill up a holiday HOOF form in advance at your local surgery - ask the oxygen company that will supply you with oxygen at your destination (see below) how much notice they require. You may also be able to rent mobile scooters from a supplier at your destination.
If you are travelling in your own car, then you can take your concentrator or cylinders with you in case there are any difficulties in a company delivering them. Of course you will have to inform the hotel or holiday cottage and ask if the presence of oxygen on their premises is acceptable.
If you are travelling say by National Express they will not accept cylinders carried in suitcases for the luggage department. They will allow one cylinder on board (lightweight) for your use. You are advised to ring up the day before you intend to travel to let the driver know about this. They will also help you at your destination.
All rail companies should allow you 2 or 3 lightweight cylinders on board (used or not) - they seem to think less than 2 feet would be appropriate. Concentrators or fold up chairs or very lightweight scooters are also acceptable. Any passenger that needs assistance either at their station of departure or on arrival will receive help as long as the company knows this in advance.
Bus companies vary in their attitude to oxygen - the BLF and Breathe Easy members are contacting each one to remind them of the Disability Act. John changed Stagecoach Devon's policy with three phone calls. They had never been approached on the subject before!! (see above)
If travelling abroad in the European Community it may be possible for your supplier to arrange for you to receive supplies of oxygen at your holiday destination. Ring your company and find out at least 4-6 weeks before departure and preferably before booking!! You will also need to complete a HOOF holiday oxygen form - ask your GP well in advance of your trip.
However John had difficulty with Allied Medical/Medigas (serves Southampton) when he went on a cruise from Southampton. They were meant to deliver oxygen to the ship and although he followed the correct proceedure they refused for some reason to telephone him. So he had to cancel the order because he did not want to depart without oxygen. Therefore he took oxygen cylinders from Air Products with him on to the ship. That was in May 2006 so hopefully those difficulties will soon be resolved.
If you have plenty of money, the equipment pictured below will excite you a great deal. This is a truly portable concentrator. The unit provides three pulse settings equivalent to 1-3 litres of oxygen per minute (remember that pulse means that it only delivers oxygen when you breathe in). If you normally walk with the highest setting (3) the internal battery will last 2 hours. However, you may also buy an additional battery on a belt and this will add a further three hours. Of course if you use only 1 litre, it will, with the belt, last 10 hours. The weight of the concentrator is 2 kgs and with the battery belt 2.8 kgms. BUT you will have no trouble carrying it on public transport. In the USA it is now also accepted on airlines and we expect that will happen soon in the UK. And of course all you need is an electric point to recharge. No more ordering cylinders.
The photograph on the left shows the battery belt which weighs less than a bag of sugar and of course you don't feel it round your waist. John has opened the jacket deliberately but normally it would be hidden. The right hand photograph shows how the system looks from the front and again he has rolled his sweater up slightly to show the belt. As for the tubes you can place them where you like - John just left them hanging there so that you could see them. It really is spectacular.
Good points of the Freestyle (above) as John found out on a cruise in May
1. It is truly light and easy to carry. John was the only person on the Aurora (P & O) using oxygen moving around because the old cylinders would have been too heavy. There were plenty of people in wheelchairs and scooters but nobody avoided him because he was using oxygen. And that would apply to the Freedom 300 (see oxygen page).
2. It is easily recharged - up to 4 hours each for main unit and belt. And there is an electric plug in every cabin just as there would be if you were staying in a hotel or rented property. Fully charged it lasted me all day, but he did use it only for walking.
3. It is smart and fashionable!!!
Bad points
1. The quality of the oxygen it delivers is to an extent dependant on the air around you. So he found it was not wise to use it in polluted parts of a city (diesel fumes etc!) or in confined spaces with little air movement. However, John said it did not bothered him in Venice!
2. It only delivers up to 3 litres of oxygen a minute (and John did not feel that it did that). He couldn't manage hills but it did help a lot in moving around on flat ground.If you need a high flow of oxygen do not buy it. Pity because the alternatives weigh so much. However if you need oxygen 24/7 you can arrange for a mid-weight concentrator to be brought on board P & O ships, or in a car for example.
AIR TRAVEL
Surface travel does not really affect COPD patients any more than it does at home. But air travel does. Remember that cruising to 30.000 feet the oxygen content of the air in the cabin is equivalent to being at an altitude of 8000 feet plus. So consult your GP about whether or not you are fit to travel by air – he may refer you to a hospital for tests. You are not allowed to take your own oxygen on board the aircraft and the costs can be considerable. Check with your airline of choice if you will need oxygen on board.
The BLF (08458 505020) provide a useful list of airlines and the cost of oxygen provision .
British Airways for example charge £100 per flight. So if you have to change planes that will be £200. But ring BLF for a leaflet.
INSURANCE
Also of course your holiday insurance costs may be much higher with emphysema or copd– it depends on whether or not you have been hospitalised in the last twelve months, whether you are on LTOT and how far you can walk and so forth. You may not be able to cover yourself for COPD if you do not give satisfactory answers. John said he couldn't get it for Europe but you can qualify for medical assistance within the EEC by filling in the correct form at the Post Office. The European Health Insurance card - not the E111 form which is now invalid.
I HAVE PLACED THE LATEST INFORMATION ON HOLIDAY INSURANCE FROM THE BRITISH LUNG FOUNDATION. GO TO INSURANCE PAGE
CRUISES
Cruises from Southampton or another UK port and back again are an excellent travel opportunity for COPD patients. You can get up to 60% off some cruises - John used the following company, www.1st4cruising.com , and have found them reliable, helpful, and friendly. And they offer some great deals.
Cruises are great because you are looked after so well and are spoilt rotten. You can take your concentrator on board or your supplier will deliver oxygen to the ship. Also you can take a small scooter on board to simplify moving about the ships (all lifts) and into the restaurants and even on some shore excursions!! Or if you prefer you can rent equipment - ask your shipping company for details. There may be some good bargains.