One of the aspects of your life that Vasculitis may affect is your ability to walk and get about. If that happens this does not mean that you are condemned to staying at home. There is help available to you out there if you search for it. However, it may be that when you are in pain or trying to deal with being disabled, you don’t feel you have the time or energy to go looking. So here are some pointers to sources of help and information.
It is important not to be put off by the views of people who are not disabled or a fear of looking silly. Do what you need to do to make your life easier. If that includes using mobility aids such as wheelchairs or scooters then so be it!
A word of caution. Using mobility aids such as scooters can be a great benefit. However, the ability to travel without pain can be highly addictive and you should watch that you don’t get into the mind set of always using them in case you lose what ability you have to walk.
Don’t forget, if you buy equipment specifically for a disability, you may get the VAT off or be able to claim it back.
See this link for the full list of benefits that you can apply for. Be aware that some of them, such as Disability Living Allowance (formerly Mobility allowance and soon to be PIP in most of the UK) are more useful than others when it comes to unlocking benefits.
The Car Is The Star
Having your own vehicle can be a great aid to mobility and independence.If you have one, do be aware that vasculitis may affect your ability to drive. Details of what needs to be done about retaking tests, altering your driving licence etc. can be found here. See also here . You can also get a free vehicle licence.
If you haven’t got a car, getting hold of one can be more complicated for people with disabilities, particularly if you need hand controls or other adaptations that make taking a car for a test drive impossible. If you’ve decided on a vehicle, you then need to pay for it. You may be able to obtain a salary advance from your place of work, a grant from a charity, or use your benefits. For reasons best known to the government, you are apparently not allowed to use a benefit like Disability Living Allowance as collateral on a loan. However, you can use it within the Motability Scheme.
The Motability Scheme gives those on the higher mobility level of DLA (or its PIP equivalent) or War Pensions access to cars you can purchase on HP, cars you rent on a monthly basis and also to purchasing mobility scooters or wheelchairs. In exchange for part or (usually) all of your monthly disability living allowance and a deposit you can rent a suitable car and have it adapted. Rental covers pretty much everything except petrol, though you do need to plan your budget. If you’ve handed over all your benefit, you need to make sure you have enough spare money to actually fuel it!
The one problem with the car, which affects no other form of transport, is that you have to park it somewhere. While some councils are currently experimenting with a sensor net service that alerts your mobile phone to available parking spaces, it may be a while before every town has one.Most places do now have parking spaces for disabled people. On public streets and even some of the more fussy shops, this means Blue Badge holders only.
Be aware of special conditions within London’s Congestion Zone. If your car is registered for tax as ‘disabled’ you can travel through the Congestion Zone without charge. However, do be aware that many inner city boroughs in London do NOT recognise and will fine non-London users of the EU-wide Blue Badge.
If you believe some UK newspapers, pretty much everyone on the road has a Blue Badge and they picked one up by sticking their head around their GP’s door. In reality, while the scheme has undoubtedly been abused, you do need to do a bit more work to get one. See https://www.gov.uk/apply-blue-badge for details.
Having a Blue Badge makes life easier and gives you access to bays but watch out that your parking bay does not become a ‘loading/unloading’ bay between certain hours or you may incur a fine. On the plus side, displaying a Blue Badge should prevent your car being clamped or towed away except where it is causing considerable danger. https://www.citizensadvice.org.uk/consumer/transport/driving-and-parking/wheel-clamping/when-your-car-can-be-clamped-or-towed-away/ While being in the wrong place and time with a Blue Badge can cost you, you can also save money at bridges, events, etc. As ever, check with the place you are visiting for any discounts.
Your satnav can usually point out Blue Badge parking if you select that option.
For those with geography issues, or who want to focus on driving, buying a Satnav can be a considerable benefit. Not only will they tell you how to get from A to B but will (if correctly programmed) also point out useful things like banks, shops, public toilets etc. If you like to keep your information up to date buying the ones with lifelong maps work out cheaper. Many taxi drivers use satnavs these days.
For those who do not drive, taxis can be an excellent way of getting around and being dropped off exactly where you want without any parking issues.
Surprisingly, the word for TAXI is usually the same wherever you are in the world. (Want to check? See here)
In the UK, great strides have been made over the last few decades and most taxi companies should be able to provide a car which is wheelchair accessible or can store a wheelchair (or small scooter) in the boot. The London Taxi Association claims that the London Taxi is the most accessible there is (see here) but all taxis should be accessible by law. London taxis are examples of Hackney cabs. They exist in most towns or cities and are the ones you can flag down if you need to.
The tough bit is getting a taxi back from your destination (unless you’ve booked a return trip at a certain place/time). This is where a mobile phone and the taxi company’s phone number come into their own. Failing that, you need to either flag down a Hackney Carriage or make it to the nearest taxi rank. Your local council’s transport or tourist departments should be able to provide you with a map showing where ranks are. You could also ask your driver on the way in. Standing about and flagging down a cab can be a pain (literally). So having a sign with the word ‘TAXI’ on it may help, or you could use a taxi hailing phone app on a smart phone.
On The Buses
Many buses and coaches have spaces for wheelchairs, seats for those with disabilities and drop-down ramps which makes life a lot easier. Making life that bit cheaper for local bus users is the bus concession scheme if you are disabled or over 60. Each nation within the UK has its own set up:
If you are travelling further than your local service then you will want to choose a coach service such as National Express. You should approach them for details of their coach stations (parking, toilets, access, etc.) and their coaches. See here for details of the coach card discount and also who to contact to arrange travel or find out about station facilities.
Let the Train Take the Strain
Travel by train is both possible and comfortable if you plan and book ahead. The first thing to do is obtain a Disabled Person’s Railcard covering you and a travelling companion. (Railcards are also available for several other groups including 16-25, military, and the relatively recent Two Together card for any two people who will travel together). Details of how to get a railcard and the discounts provided are here. Remember, you can also railcards to get discounts at some attractions.
Once you have the Railcard, contact the stations you plan to travel from/to. Ask for details of the station layout so you can see which is the closest entrance, where the toilets and other facilities are. Details of train stations, as well as train facilities, which companies allow scooters on board, can be obtained from here.
All rail companies will – given notice – arrange assistance at staffed stations, both with getting you to and from your train, and to change en route. You can book this assistance when you book your ticket at a ticket office, and from some online ticketing platforms – or you can arrange it afterwards (but always at least 24 hours’ in advance). Once arranged, depending on the level of service offered, you can be met at the taxi rank with a wheelchair or picked up in a baggage trolley/scooter and driven through barriers directly to your train where ramps can be used to allow access to wheelchair users (and occasionally scooters).
Even if you don’t need a lot of help, it can be a good idea to book assistance for complex journeys: if services are disrupted, staff will have the responsibility for working out how to sort out your journey for you, rather than leaving you on your own to try and reschedule things.
Links and phone numbers for the Passenger Assistance teams for the various rail companies can be found here
If you can afford it, you may find it useful to travel first class. This is more about practicalities than prestige. Trains typically have their first class section closest to the start of the platform, or there is a specific place in the station where first class passengers can sit and wait for the train (and where the train’s first class section typically pulls in) rather than having to stand about in discomfort. In first class you have fewer people so more chance of getting a seat. Additionally, several first class services have attendants who provide food and drink rather than you having to make your way through a wobbly train to the café/shop.
So you have finally got where you want to be. While you could pack a wheelchair or folding scooter into your car or taxi, you may find it less bother to become a member of the relevant local Shopmobilty scheme. Shopmobility is a service providing wheelchairs, mobility scooters and other mobility equipment. They are usually found in the carpark of major shopping/town centres but the location, equipment, hours etc. of each site are all different. See the main Shopmobility website for details of how to sign up and your local site. At shopping centres, Shopmobility units can often be near public toilets, particularly those for the disabled.
Saving the Pennies
Don’t forget that many places like The National Trust, cinemas, theatres, libraries, zoos, etc. often give discounted or free entry to someone with a disability and/or their partner (typically if you have a visible disability or show a Blue Badge). Check with the place you want to visit for any discounts. You don’t ask, you don’t get!
Spending a Penny
Depending on your disability, you may find that you need the toilet when out and about. Public toilets can be unhygienic. A better bet for cleanliness (because they are locked and not used as often) can be the dedicated disabled toilet (look for the wheelchair symbol). For many disabled toilets you need to have a RADAR key. For more details about RADAR keys see here. Having a RADAR key can make you very popular when you are with mothers with babies or others who need to ‘borrow’ the facilities’.
When booking tickets for a flight, always make sure that you have ticked the box showing what assistance you need. You can add requirements to a booking at a later date if necessary, but make sure that you give plenty of notice before the flight.
For wheelchair users, the key things to tell the airline are whether you plan to use your own wheelchair in the airport or would you like them to provide one – and if using your own wheelchair, whether you would like to be pushed.
Some airports (including Gatwick, East Midlands and Manchester) offer special lanyards for those with “hidden disabilities” who don’t want to share details of their disability or to use the airport’s assistance service. The lanyards will “identify you to staff as someone who may need additional support or understanding” from staff who “have been specially trained to recognise the lanyards and act accordingly”. Arrangements for collecting lanyards vary, so check details for the specific airport that you will be using. The CAA has a report reviewing progress with the scheme
Arrangements differ depending on airport and airline, so talk to your airline to establish the best entry point to the airport, and how to get from there to the point at which you will access your assistance. And remember to allow plenty of time to get through the airport.
There is little point in paying more for priority boarding because the mobility assistant will state whether you and your party get on first or last. They will often push you through customs etc. ahead of others in the queue. Depending on what assistance you have selected, you can either walk up the airplane steps yourself or be hoisted up to the plane door using a special car on stilts.
By prior arrangement when booking, you may be allowed to take wheelchairs or scooters in the hold but this depends on weight, size and battery type.
During the flight, the flight crew may want you to sit in designated spaces (away from the emergency exits) and exit the plane after the rest of the passengers on landing. Your wheelchair or scooter may be provided on leaving the plane rather than during luggage retrieval.
The Heathrow Airport Guide has some useful air travel hints on their website
See our Insurance page
Being at Home can be OK
If all else fails and your vasculitis means that you are largely stuck at home, please remember that this does not mean that you are cut off from the world. Telephones and mobile phones will keep you in touch with friends, family and other support. If your vasculitis affects your eyesight, BT offers a range of phones with large buttons and clear displays – details here
Although they can prove invaluable when you are out, mobile phones may seem unnecessary when you are in your own home. That said, they can prove more economical than a landline depending on your package. The newer ‘smart’ phones have app and email facilities. They may seem complicated but most families have a young person who can advise. You might also try the provider’s help line. See here for information on mobile phones designed with the disabled in mind.
You could also consider buying a laptop or tablet computer (those reading this guide online will presumably already have done this!). While this may seem expensive or complicated, computers can be obtained second hand from second-hand stores that appear in most towns or from charity shops. Charities may also offer a grant for equipment. See here for details
The key thing is to get connected to the Web. It is not difficult and once done the world is out there. You can speak to and see friends and family via a service such as SKYPE.
While ordering online may require greater care for those with hand tremors, it is possible to get pretty much anything delivered to your home. From flowers, to books to the weekly shop, it is all available online. Additionally, many GPs and chemists such as Lloyds and Boots offer an online repeat prescription and delivery service
Being online can give you access to a whole world of people and services. As well as helping with hobbies and socialising, being online can help you stay in the world of work. Check whether your employer will allow you to link in to the office network while working from home. You may be able to claim back the cost of working from home (but check your household insurance). See here for details.