"Getting a wheelchair is the best thing I have done for my illness"; "I can go out for longer and go to places that would mean too much walking"; "Mum pushes me round the garden"; "I can go for a ‘walk’ with my dog"; "having the electric wheelchair means I can get around independently"; "it gives me a lot of freedom and allows me to save energy".
Society doesn't view wheelchairs in quite the same way as other modes of transport, even though buses and pushchairs are mobility aids too. Perhaps because of this, many people feel embarrassed about using one. I would recommend anyone who thinks it might improve their mobility, to consider trying one. If you are concerned about bumping into people you know, go at first to a place where this is less likely.
Obtaining a wheelchair
Short-term - Branches of the British Red Cross have wheelchairs for short-term loan as do some social services departments. It is also possible to borrow them at some museums, supermarkets, hospitals, amusement parks etc. Over 200 UK towns have Shopmobility schemes, which lend out manual and electric wheelchairs and scooters for people to use in a town or shopping centre. Access guides to many large towns and cities can be obtained from Tourist Information Centres.
Long-term - Various wheelchairs are available on the NHS, if there is deemed to be a ‘clinical need’. Think about your needs beforehand so that you can describe them to the person assessing. For example, people who can’t sit up for long enough to use a standard wheelchair may be able to use one that reclines, and those with difficulty holding their head up might benefit from a supportive head-rest. It may be worth experimenting with different cushions etc. to try to minimise pain or discomfort. For me, this has taken a long time but has been worth the perseverance. Waiting times, understanding of M.E. and availability of equipment vary greatly. Request a home visit if you are too ill to travel to an appointment. The district wheelchair service repairs NHS chairs free (except where damage is the result of misuse).
Purchase - Wheelchairs can be bought privately, either new or second-hand. Prices for a new standard chair start at around £140. Find out as much as you can about different types before buying. It may be possible to arrange a home trial.
The Wheelchair Voucher Scheme is now being introduced around the country. This will enable people who would be entitled to a wheelchair on the NHS, to obtain a voucher instead which they can top up in order to buy a more expensive model. Wheelchair user Ruth Bridgens adds: ‘As the NHS buys these wheelchairs at a tremendous discount this can be an inexpensive way to get a lightweight wheelchair with more comfortable attachments.
‘If you plan to put the wheelchair in the car and be pushed around, the weight and foldability can be crucial. You may then need a hoist to put the wheelchair in the car. Lightweight wheelchairs start at about £400 and options such as more comfortable backs or elevating leg rests cost from £50. The most common makes are Invacare and Sunrise Medical.’
Local disability information lines should know if the voucher scheme is up and running in your area. Funding can also be sought through charitable organisations. People with chronic illness can claim VAT exemption on products designed specifically for disabled people.
Trying out a wheelchair
Using a wheelchair doesn’t take nearly as much energy as walking, but it does take energy. How much you will be able to do will depend on the degree of illness. If you are trying out a manual chair, you will need someone to push you. Going along is much more tiring than staying still so if your illness is quite severe it might be worthwhile to try it without moving. Some people are not well enough to use a wheelchair at all, even lying down. Vibrations are a particular problem for people with M.E. Larger wheels transmit less vibration and smooth surfaces are easier than rough.
Different Types of chair
Electric Wheelchairs and Scooters - There are many different designs. The motability scheme can enable people on the higher rate of the DLA mobility component to use their benefit to purchase or hire a chair, but people with M.E. may not qualify if their award of DLA is for a short period. Ruth adds: ‘Scooters are less expensive and possibly more “acceptable” but are more difficult to transport and need a larger storage space. They also don’t have all the comfort options that wheelchairs have.’
Recliners - Several models with semi or fully reclining back-rests are available, in both manual and electric form. Some are not designed to be pushed in the fully reclined position but Oxfordshire Wheelchair Service willingly adapted mine (see photo). If you want to move around in an electric chair while lying down, it may not be possible to see where you are going or to reach the controls.
Castor Chairs - These have wheels like supermarket trolleys so they require no turning circle and can be used where there is not enough space for a larger chair. Some designs have footrests and/or handles but they are not as easy to push as a standard chair. They are for indoor use only, and do not fold up. Many castor chairs can be foot propelled but I found this more exhausting than walking.
While writing this article I've discovered that my particular wheelchair can have pneumatic front castors which may be better for vibration than solid rubber wheels.
I also learned about a seat which can replace the usual seat of most standard wheelchairs. It has springs like some armchairs, is used with a cushion, and is supposed to reduce jolting. For details ring Crimp Hydraulics Services Ltd: (01279 871611) and ask about the 'sit-easy frame'.
Do not adapt or repair NHS chairs without permission.
A book with more information about wheelchairs is available from the AfME library
Useful telephone numbers:
|British Red Cross – medical loan service||tel: 02072 355454|
|The National Federation of Shopmobility||tel: 0207 6891040|
|DIAL UK (national co-ordinator for local disability information lines)||tel: 01302 310 123|
|Tripscope (advice on travelling including wheelchair and scooter hire)||tel: 08457 585641|
|RADAR (information and advice on all issues relating to disability)||tel: 02072 504119|
|Disabled Living Foundation (information and advice on equipment)||tel: 0845 1309177|
This article was printed in InterAction, the Journal of Action for M.E. Issue 28 December 1998
ACTION FOR M.E. P.O. BOX 1302, WELLS, BA5 1YE, UK Website: www.AfME.org.uk