Chapter twenty SANITY-SAVERS Gadgets, adaptations and alternative methods

Practical and psychological pros and cons

Finding your sanity-savers
Some helpful general reading and websites
Some helpful organisations
Disabled Living Centres
The Disabled Living Foundation
NAIDEX
Social services departments and Occupational Therapists

Commercial suppliers of gadgets and disability equipment

Advice before you buy
Consumer advice
Doorstep salesmen
Online shopping
Funding of disability products and equipment
Value Added Tax (VAT) relief and disabled people
Hiring or borrowing disability products
Buying secondhand
One-off or tailor-made aids, and Remap

Overcoming some communication difficulties
Phoning
Writing and gripping
Reading
Computers and word processing

Keeping up-to-date with equipment, products and design

Practical and psychological pros and cons

How can we outwit the arthritis in a practical way, in our everyday activities, from washing and dressing, or coping with cooking and housework, to getting out and about or coping with work? The world simply isn't designed for people like us with weak grip, stiff joints, and limited strength — frustrating enough before you even begin to add the fatigue and aches and pains that multiply the misery. All too easy to feel very disabled and frustrated, however able-bodied we may look.

Fortunately there are plenty of ways of getting over practical problems, to maximise abilities and retrieve some sanity! 'Disability products' or 'tools for living' are jargon phrases replacing the old 'aids' (for disabled people). Why not gadgets? A related term is ADL, meaning 'activities of daily living'. And you may also come across the term 'assistive technology' (AT). Assistive technology is any product or service designed to enable independence for disabled and older people.

The right gadget or piece of equipment or adaptation can make a dramatic difference to keeping yourself as independent and sweet-tempered as possible, and can help you protect your joints and conserve energy. It doesn't have to be expensive, or even 'specially for disabled people'. A piece of wire, bent the right way, has served me as a boot zip puller-up in the past. Spending a few pounds on an extension plug (the sort with curly-wurly leads, found in hardware or DIY shops) can temporarily 'raise' an unreachable electric socket. Often the simplest and cheapest solution is the best, or maybe just a new way of doing something. — Or even, as one younger person with arthritis (YPA) put it "some things I just leave"!

Some of us are too embarrassed to use special gadgets or adaptations; we feel we're making ourselves look 'odd' or 'different'. I'm still cross with myself for having delayed so long using an 'easyreach/longreach' gadget at work, through embarrassment. It makes life so much easier. Using it is now so automatic that my embarrassment is long forgotten, and because I'm not embarrassed, other people too accept it as just a part of me, and forget about it. Any comments I get tend to be expressions of genuine interest or envy — even 'where can I get one?' If a gadget helps, use it! After all, people who wear glasses are using special 'aids', aren't they, and they're accepted as perfectly normal.

Using special gadgets doesn't mean you're 'giving in'. — Is it really better to carry on moaning (outwardly or inwardly) about problems which could be solved, or nagging other people to do things for you which a gadget would enable you to do instead? Why let the arthritis give you more problems than there need be? Defy it! — If a gadget helps, use it!

Special gadgets aren't only for severely disabled people. Look at all the 'aids' used by cooks, gardeners, car drivers, housewives. What's a computer or a drill or a food mixer if not an 'aid'? It's just that they're called gadgets or tools or labour-saving devices. So what if it's a gadget 'for disabled people'? — Magically, by using it, you're actually making yourself more able and less disabled.

Moreover, one of the most important reasons why someone with inflammatory arthritis should use gadgets or adaptations (provided they're used the right way) is to avoid becoming severely disabled, to help avoid joint damage or deformity, and to conserve energy for more essential or enjoyable activities. Maybe you can struggle to open a tin manually, but at what cost to your joints? An electric can-opener (the right sort) could save time, energy, pain, and help avoid further joint distortion.

So please do take joint-saving and sanity-saving devices and tricks seriously. They're as essential a part of your treatment as going to the doctor or taking the tablets. ARC have a free booklet Looking After Your Joints When You Have Arthritis (downloadable), useful for people with other inflammatory types of arthritis too, such as psoriatic arthritis, and for people with osteoarthritis, especially of the hands.

Your doctor may give you some advice, but where can you find out more? Occupational Therapists (OTs), also known as 'Disabled Living Advisers', are the experts. Babette, a newcomer to RA, found just one visit from the OT solved several 'small' problems which added together had been getting her down. Lorraine's life was transformed by a bedsit extension with shower and toilet, built on to her family's home. Another young housewife and her family got totally frustrated by her inability to do anything, especially in the kitchen, and her husband even gave up work to try to help. Someone suggested they contact the social services OT.

In the kitchen, the OT arranged for cupboards and surfaces to be lowered so they could be reached sitting down. A trolley helped with moving things around the kitchen, and a washing machine/tumble drier meant heavy wet washing no longer had to be lugged around. Cupboards were replaced by large storage drawers to avoid having to reach into awkward corners. Other gadgets provided by the OT included an automatic bath lift, a longreach gadget, and a spring-loaded chair. The husband was able to return to work, and the whole family felt much happier generally.

Finding your sanity-savers

Your rheumatologist may refer you to an Occupational therapist (OT). Or you can ask for referral to a community OT through your doctor, or you can refer yourself direct, through your local authority social services department. Ask for referral as early as possible: it's never too early, and there's a shortage of OTs in some areas, so you may have to wait anyway. If there's a very long delay try asking your doctor if s/he can help hurry things up for you. More about OTs below, and in chapters 4 and 6.

You can help yourself, too. Train yourself (family and friends too) to look at the oddest things with the question 'could that somehow make life easier for me?' Try DIY shops, pet shops, even sports, camping and cycle shops. In an art shop I found just the right long-handled paintbrush for applying moisture cream to my dry, rapidly ageing neck! In a shop selling climbing or sailing gear you'll find carabina clips, used for clipping ropes together. They remain firmly closed in use but are opened easily by pressing down lightly on one bar. Attached to dog-lead clips they proved ideal for one YPA (younger person with arthritis) for attaching her baby's walking reins or safety harness. In a children's mail-order catalogue I found a perfect battery-operated pencil-sharpener, and lightweight melamine plates and bowls in bright cheery designs. Simple plastic bags or long-handled dustpans become nifty devices for getting things out of the fridge or off shelves. If you can manage safety pins, clip one on your watch strap — they can slit open tight plastic wrappers wherever and whenever — other things too.

Let your brain ease the strain, and help conserve energy. Work out shortcuts or new ways of doing things, at home, at work, at leisure. Boil potatoes in their skins or cook jacket potatoes instead of peeling them. Use convenience foods. Plan the week's menus ahead. Shop around from your armchair when possible. Make your home (even just a part of it) the one place where you feel as little disabled as possible. List the obstacles to be overcome and set about finding the solutions.

Books, leaflets, and the internet can give you ideas. I can't tell you here about all the gadgets and tricks available, but can tell you where to start looking. Other chapters will also help, and you'll pick up tips from other people with similar problems. Seek your OT's advice where possible, before buying things, especially anything expensive when you can, alas, all too easily 'be taken for a ride'. Find out all you can beforehand about different options and try before you buy. Disabled Living Centres (DLCs) or NAIDEX exhibitions are good places to see what's available. And window-shop from your armchair by sending for Disabled Living Foundation (DLF) factsheets and the catalogues of commercial suppliers mentioned later. Full addresses are in the Addresses List (Appendix 2).

Some helpful general reading and websites

• Arthritis Care's Reaching Independence. Guide to living at home for people with arthritis (1.14 MB) includes information on aids and adaptations, technology and security, and people who can help.
• ARC's Occupational Therapy and Arthritis includes practical advice on overcoming everyday problems. See also ARC's Looking After Your Joints When You Have Arthritis, and Your Home and arthritis.
• The College of Occupational Therapists website has a section designed for the public, 'How can OT help me?', with information about occupational therapy services, and helpful leaflets (downloadable) such as Imagine Being Undone by a Button (688Kb), We Like to See Patients in a Home — Their Own (841Kb) and Our Anti-ageing Remedies Don't come in a Tube (970Kb).
• Ricability (the Research Institute for Consumer Affairs) is a national charity which researches and publishes independent consumer reports with practical information for disabled and older people. Topics include childcare and household products, mobility, telecoms and alarms. A general report, Who can Help? Key sources of information for older and disabled people includes sections on 'making your home easier to live in', and 'getting around outside'. You can read other booklets on the website too, such as Making Your Kitchen Easier to Use and Stay in Touch — A guide to telephones and services plus lots of factsheets on products like kettles, vacuum cleaners, washing machines, microwaves, tumble driers, irons, etc.
• Factsheets from the Disabled Living Foundation (DLF), like Making a Difference, very wide-ranging. Includes everyday living needs, communication, leisure and sports, etc; Equipment to Assist with Dressing or Putting on Footwear, and many others (more about DLF later).
• A Practical Guide for Disabled People or Carers: where to find information, services and equipment (2003) can be read on the Department of Health website, or you can order a free copy by telephone, fax, email or post (quote product code 29614). Write to DH Publications Orderline, PO Box 777, London SE1 6XH, tel: 0870 155 54 55. However for the most up-to-date information visit the Directgov website.
• Jasmine Jardine's Living a Full Life with Rheumatoid Arthritis (The Expert Patient's Guide), (Howtobooks, 2005). Jasmine Jenkins, mother of three small children, was diagnosed with RA at the age of 32, and later trained to become a fully qualified OT, so it's written from the point of view of both OT and patient.
• Heather Unsworth's Coping with Rheumatoid Arthritis (Chambers, 1987). Excellent paperback, by experienced OT, with lots of emphasis on joint care, and helping yourself.
• Michael Leitch's Living with Arthritis (Lennard/Collins) is inspiringly full of tips from a variety of people who themselves have a rheumatic disorder.

Look out all the time for ideas that could help. 'Disabled' literature and websites can give you ideas, but don't overlook all the gadgets and labour-saving devices and tricks around for non-disabled people too. Look in magazines (including the small ads), and shop-by-post leaflets and commercial suppliers' catalogues like those mentioned later in this chapter.

Some helpful organisations

Disabled Living Centres (DLCs)
Each centre (DLC) includes a permanent exhibition that enables people to see and try products and equipment and get information and advice from professional staff (mainly OTs and physios) about what might suit them best, though the centre doesn't actually supply products itself.

Referral from a doctor isn't essential, though may help the staff help you more effectively. They can recommend equipment, and supply leaflets, costings, and details of where gadgets may be bought privately or provided through the NHS or social services. Phone first to make an appointment and to check whether what you're interested in is available to see. For details of your nearest centre use the Assist UK website — Assist UK coordinates the UK-wide network of local centres. Or phone the Disabled Living Foundation (DLF) helpline (0845 130 9177, textphone: 020 7432 8009).

The Disabled Living Foundation (DLF)
This is the national disabled living and information centre, a charity, based in London, that provides free, impartial advice (non-medical) about all types of disability equipment and mobility products (including suppliers' addresses) for older and disabled people, their carers, families, and professionals. There's a lot of information on the DLF website, and DLF also publishes an incredible variety of free very informative leaflets (downloadable); Equipment to Assist with Dressing or Putting on Footwear, for instance, and the very wide-ranging Making a Difference includes everyday living needs, communication, leisure and sports, etc.

Very useful too is the DLF's helpline, a phone/email/letter enquiry service, tel: 0845 130 9177, textphone: 020 7432 8009, email: advice@dlf.org.uk The helpline operates five days a week, answering queries on mobility products and disability equipment, where to buy or hire, and related queries.

By prior appointment, you can see and try out disability products in the DLF's Equipment Demonstration Centre (EDC), the largest in the South East. You'll get information on costs and suppliers, though can't actually buy anything there. Displays include wheelchairs, hoists, products to help in the kitchen, bathroom, bedroom, toilet, living room, and to help with reading, writing, eating, mobility. The EDC includes a SmartHome, designed like a flat and displaying the latest technology for independent living at home.

NAIDEX (National Aids for the Disabled Exhibition)
Held every spring and autumn, alternately in London and somewhere else in the UK. An excellent opportunity to see what's available and try before you buy. Contact NAIDEX to find out when and where the next exhibition's being held.

Social services departments and Occupational Therapists
(In the phone book under the name of your local authority/county council, or there's a 'find your local council' link on the government's Directgov website.)

By law, a local authority, through its social services department, is required to assess the needs of a disabled person for any of the following, if asked to do so by that person or by a carer: aids and adaptations, help in the home, recreational facilities in or outside the home, assistance with transport to such activities, holidays, meals, telephones. You can request a social worker's visit if 'in need or at risk'. You can ask your GP for referral, or request their help directly. They may also be able to liaise for you with other departments or organisations. If you can't get out to see them because of disability, ask for a home visit. Social services also administer the Blue Badge scheme which allows parking in certain restricted areas (see chapter 24).

Contact social services to ask to speak to the community occupational therapy service (aids and adaptations), mentioned earlier. Take a quick look beforehand at ARC's Occupational Therapy and Arthritis leaflet and the College of Occupational Therapists website section 'How can OT help me?'. Some community OT services have kitchen/bedroom/bathroom facilities where you can try out sanity-saving gadgets and adaptations. You may find the 'ICES team' (Integrating Community Equipment Services) mentioned. ICES aims to develop and integrate community equipment services in England, remove unnecessary barriers for users and modernise services. It's funded by the Department of Health.

Social services are entitled to charge for some services though can't refuse to provide the service if the disabled person can't pay. What happens in practice varies a lot. Contact Arthritis Care or NRAS or RADAR or other support group for advice if you have problems. Departments are also required to inform disabled people of any other possibly relevant service they're aware of.

You can ask to be put on the social services' Register of Disabled People (see chapter 16). You don't have to be registered though it may help with getting some services.

Some social services employ people part-time to visit disabled people regularly in their homes, eg to help with shopping or fetching prescriptions, or may be able to put you in touch with voluntary organisations like Home Start, which in some areas provide volunteer 'family friends', helping families with young children. See chapter 22 for the immense help one YPA got from her social services. For more background information try the latest annual Social Services Year Book (Prentice Hall, 880 pages!) in your local library.

Commercial suppliers of gadgets and disability equipment

I've room here to tell you about only a few (addresses are in Appendix 2). Find out about others through DLF leaflets or information service, through your OT or DIAL, or from other sources listed earlier. Some commercial suppliers produce free catalogues you can browse through at home, and order from by post, or online. Their websites vary; some are better illustrated and easier to navigate than others.

Pictures and information in the catalogues can be really helpful. Why not send off for one for ideas not just for you, but for labour-saving presents for other people, too? Frankly, I think it's worth getting several!

• A friendly catalogue service for non-internet home browsing and buying is Chester-care, part of Homecraft Rolyan, covering over 4000 products to aid daily living. You can order by post or by phone. Tel: 08702 423 234 for a catalogue. From the Chester-Care catalogue I've bought things like a folding walking stick, stick ferrules, folding easyreach gadget (ideal for travelling, hospital appointments, office drawer), harpoon weeder, one-handed tray, eye mask, etc. There are masses of nifty gadgets, for kitchen, garden, house, reading/writing, mobility, bathing, and a portable, wonderfully discreet (not bulky like a bedpan) female 'urine bottle' (Warwick SASCo Ltd's 'Cygnet') usable standing, sitting, or lying down (useful in the car, or if visiting friends with no downstairs loo). Urinals for men, too. Many of these items are available from the other suppliers mentioned here too, of course.
• Nottingham Rehab Supplies sell over 3000 daily living aids, listed on their website, with ordering by phone. For non-internet home browsing and buying, their free Ways & Means catalogue contains over 500 products to assist with mobility, dining, bathing, toileting, reading and writing, etc. For a catalogue and general enquiries tel: 0845 120 4522.
• There's a nationwide chain of Keep Able stores where you can try and buy a huge range of products, from household, personal care and leisure gadgets to walking aids, scooters, wheelchairs, wheelchair clothing, ramps and toileting aids, etc. You can also look at pictures of products on the Keep Able website and order online. For non-internet home browsing tel: 08705 202122 for a free catalogue.
• Promedics has a vast range of products divided online into different well-illustrated catalogues. Through Promedics you can get the 'Wrist Easy', designed by Sebastian Conran, an amazing improvement on the usually ugly wrist brace. Made of cotton and lycra breathable fabric, machine washable, and easily removable with a zip fastener, it even comes in a glamorous black! Or beige, if you prefer.
• The Helping Hands Company has a well-illustrated website, with special focus on longreacher variations including a folding helping hand, an extra long 'litterpicker' reacher (127 cm, 50 inches), a kid's 'litterpicker'. Other gadgets too include the 'Soxon' sock/stocking soft puller-on.
• Boots the chemist has an online shop with independence products in the health section. All sorts of other health and beauty and general products online too, including tampons and sanitary towels and condoms and pregnancy tests.
• Care Necessities' well-illustrated website stocks a range of products, and services include 'Rentacare', rental of wheelchairs, beds and hoists.
• Youreable.com website has a well-illustrated shopping section.
• The British Red Cross have an online shop of independent living products, or you can request a mail order catalogue from their Indequip service, based in Knutsford, Cheshire, tel: 01565 682308.
• Independent Living is a marketing website that brings together links to many commercial suppliers of disability products, for healthcare professionals and for users. The site map gives you an idea of the huge range of suppliers and products or you can do a search.

Advice before you buy

Consumer advice

For lots of really clear advice and tips about consumer issues try Consumer Direct, the telephone and online free service funded by the Office of Fair Trading. You can email via the website, or phone for advice on 08454 040506, minicom 08451 231384.

The 'Before you buy', 'After you buy', and 'Watch out!' website sections include info and advice about buying from home (doorstep salesmen or online selling); scams and other things to be wary of; knowing your rights; buying on credit and borrowing money; advice on resolving disputes and gaining redress when things go wrong, etc. There's a really excellent section on a huge range of scams — miracle cure scams, doorstep selling scams, work-at-home scams, cheque overpayment scams, premium rate phone scams, debt consolidation, etc.

Look too at the Citizen's Advice Bureau's online Adviceguide on consumer affairs.

Beware doorstep salesmen
Do read what Consumer Direct says about doorstep salesmen, as it updates and expands on these warnings from Arthritis News in 1987:

• Think before you sign. Doorstep salesmen can be very persuasive, especially when they are offering you hope of relief from pain. Some suppliers of medical and massage equipment and special furnishings employ such salesmen. Whilst this practice is within the law, members are advised to be most careful before committing themselves to any form of direct purchase or hire purchase agreement under these circumstances. In the case of medical apparatus you should always consult your medical adviser. If in doubt, write to Head Office [of Arthritis Care] for advice. [or consult your OT or the Disabled Living Foundation]
• Do not sign any form unless you are quite convinced of the suitability of the equipment that is being offered.
• Ask the salesman to show you some form of authority for selling the company's goods.
• Do not pay over any money until you are quite sure that the equipment that you are buying is suitable and reasonably priced.
• If you pay a deposit, make sure that you obtain a proper receipt, stating the name of the company from whom the equipment is purchased, the amount paid and the whole clearly signed by the salesman.

Online shopping
More about this on Consumer Direct website, and in chapter 23.

• Is the company reputable? Use those you already know about, or which have been personally recommended to you.
• Make sure you know the company's full geographical/physical address and phone number; ring before you buy. Be especially cautious if the company's based outside the UK; even if the URL has 'uk' in it, the company may be based elsewhere and therefore not subject to UK regulations.
• Check all costs including post & packing, and delivery details before you order. Be sure you know exactly what's included — will delivery of a new washing machine include free installation, or is it a delivery-only service? Will they take away the old appliance?
• What happens if you need to cancel or complain?
• If ordering and paying online, check that the web address begins 'https' and that a padlock symbol appears at the bottom. Paying by credit card can have some advantages, for instance for purchases between £100 and £30,000 your credit card issuer is jointly liable with the retailer for faulty goods.
• Or you may prefer simply to note the online details, but use your phone instead to pay by credit card rather than paying online.
• Be very wary. Look at Consumer Direct's warnings about the huge range of scams, which includes the cheque overpayment scam. Read too the 'Fraud Alert' section on the Metropolitan Police website, which includes 'internet auction' and 'money transfer' frauds, relevant whether you're buying or selling online.

Funding of disability products and equipment

A good starting-point is DLF's factsheet Sources of Funding and Obtaining Equipment for Disabled and Older People (downloadable). Some gadgets and equipment are provided free on loan by the NHS or social services. For others you may be asked to contribute some or all of the cost. Don't let that put you off. If you can't pay, explain you have a problem. Perhaps costs can be reduced or waived, or you may be eligible to apply to the discretionary social fund for a non-repayable grant or an interest-free loan. Contact your DWP Disability Benefits Centre for more information.

If you need alterations to your home, to the bathroom or kitchen for instance, ask your OT or social worker whether you qualify for help of some sort, perhaps a disabled facilities grant, which is a grant to help meet the cost of adapting a property for the needs of someone with a disability. There's useful information and advice on the Disability Alliance website and in their Disability Rights Handbook, and on the Directgov website.

The House Adaptations Advisory Service (HAAS) assists disabled people, their families or carers to find an architect or designer who might help them with a house adaptation. HAAS is part of the Centre for Accessible Environments (CAE). (tel/textphone: 020 7840 0125, email info@cae.org.uk).

Special equipment for work can be organised through Disability Employment Advisers (DEAs based at your local JobCentre Plus) under the Access to Work scheme, see the Directgov website and chapter 31. For studying, see Directgov's 'Education and training' section, and chapter 30.

You may be able to get financial help from a voluntary or charitable organisation. Ask your local DIAL or CAB or library for advice. Books in your local library may give you ideas. Try:

• A Guide to Grants for Individuals in Need (published by Directory of Social Change). Contains list of charities and organisations that will give grants and funding. There's an asociated website.
• The Association of Charity Officers provides a helpline service (tel: 01707 651777) for people in need looking for charities and benevolent funds that may be able to help.
• Recycled furniture, white goods and other household items at affordable prices may be available through one of the re-use organisations supported by the 'Furniture re-use network' (FRN).
• If you do have to fund yourself, or you're looking for something that's not specifically a 'disability' product (like a vacuum cleaner or cordless phone maybe), make your money go further by trying internet price-comparison sites such as www.ciao.co.uk (includes reviews by people who've already bought the product), www.phonesreview.co.uk, www.pricerunner.co.uk.

Don't forget fairy godmothers and Father Christmas too. My notebook has a section 'Presents I would like', where I jot down not only idle luxuries but all the useful gadgets and labour-saving devices I covet. As soon as Father Christmas or his helper appears, sighing with lack of inspiration 'What do you want for Christmas this year?' — sigh — yawn — sigh — out comes my notebook, brimful of solutions to both our problems.

Value Added Tax relief and disabled people

There's a helpful summary 'VAT relief on products and services for disabled people' on the Directgov website, with links to fuller details on the HMRC (HM Revenue & Customs) website.

VAT relief is allowed by HM Revenue & Customs on certain products, equipment and services for personal or domestic use by a disabled person, eg wheelchair, longreach gadgets, key-turners, stocking aids, stairlifts. The order for the product must be accompanied by a statement signed by you or on your behalf, confirming that you are a chronically sick or disabled person and that the goods are being supplied for your personal use. Most commercial suppliers of disability products provide a ready-made declaration form which you need to sign and date; there's an example on HMRC's website, in summary like this:

"I [full name] of [address] am chronically sick or have a disabling condition by reason of [give details], and I am receiving from [name and address of supplier] the goods on this order form, which are being supplied for my personal use. I claim that the supply of these goods is eligible for relief from VAT. [signature and date]"

Sometimes repairs, adaptations or services may qualify for VAT relief, for instance adaptations to make your home accessible, but the rules are complex, so check the facts first. VAT relief may be allowed on some disability adaptations to a car — read 'Motor vehicles for disabled people' HMRC Reference Notice 701/59 (March 2002) on the HMRC website.

The rules are complex, and not everything supplied to a disabled person qualifies for VAT relief. For full details see VAT reliefs for disabled people (HMRC reference notice 701/7, August 2002), available online on the HM Revenue & Customs (HMRC) website or from your local VAT office. If you can't find the answer to your questions there, you can call HMRC's National Advice Service, telephone: 0845 010 9000, textphone: 0845 000 2000.

Hiring or Borrowing disability products

Some of us need only occasional use of something like a wheelchair or commode — on holiday, for instance, or visiting friends with no downstairs loo, or when we're only temporarily less active than usual. Useful to know that the Red Cross or St John Ambulance can loan out some equipment on a short-term basis for home use. Some commercial firms hire out wheelchairs on a weekly or monthly basis. DLF has a factsheet Wheelchair Hire Services in the London Area or you can email or phone the DLF helpline for help, or try your local Disability Living Centre (DLC). More and more places like the National Trust, museums, and shopping complexes are providing mobility scooters or wheelchairs for temporary use by visitors. Phone first to check.

Some commercial companies selling disability equipment may also offer a hire service for some items, such as special beds and hoists on a monthly or weekly basis (eg Care Necessities, Pegasus. Try looking on the internet or in your Yellow Pages under Disability, Mobility or Hire. Some hire costs may be VAT-free — check out the VAT relief information above.

Buying secondhand

Look at DLF's factsheet Sources of Secondhand Equipment. There are also useful tips on Equipmentdirect's website. Refer too to the telephone and online free service Consumer Direct.

Be very careful. If something looks 'too good to be true', it probably is. Again, seek professional advice and 'find out and try before you buy'. And whether you're buying or selling used goods you need to be wary of scams that could part you from your money. Look at Consumer Direct's section on the huge range of scams, which includes the cheque overpayment scam. Read the 'Fraud Alert' section on the Metropolitan Police website, which includes 'internet auction' and 'money transfer' frauds. Others to look at are Justmobility's warnings and eQuip For Life's page on scams.

Secondhand availability is limited: your local DIAL or Disabled Living Centre may be able to suggest local sources. Equipmentdirect.org.uk, run by Hampshire Coalition of Disabled People (HCODP) in association with Hampshire County Council Social Care Services department, lists sources of secondhand disability equipment. Disability newsletters, journals, and websites with adverts for secondhand products include:

• Monthly newspaper Disability Now, which also has adverts on its website.
• Arthritis News, Arthritis Care's magazine.
• Mobilise magazine, which also has adverts on its website.
• eQuip For Life is a free online service for disabled people wanting to buy or sell a wide range of affordable equipment. Established with the help of National Lottery Funding, it's a not-for-profit project inspired by its founder's "experience of suddenly being confined to a wheelchair and having the expense and emotional trauma of adapting the house and car etc. whilst adjusting to a reduced income."
• The Disability Equipment Register is another not-for-profit website for disabled people buying and selling a variety of secondhand disability equipment.
• Besides using Ebay in the usual way, you may find helpful its special 'Disability resources' gateway web page.
• Mobility Market — for buyers and sellers of used mobility aids and equipment.

Many secondhand products may not be specifically 'disability' products, but could still help make your life easier, help make your limited funds go further, and may also include a recycling feel-good factor! Investigate local charity shops, local newspaper classified adverts, car boot sales, bring and buy sales and even auction rooms, or:

• to find your local charity shop, try the Charity Shops Locator;
• for car boot sales info (priced), try the Car Boot Calendar;
• try one of the re-use organisations supported by the 'Furniture re-use network' (FRN) for recycled furniture, white goods and other household items at affordable prices.

One-off or tailor-made aids, and Remap

Maybe you've scanned all the booklets and seen gadgets galore but still have an unsolved practical problem? Contact the DLF helpline, in writing, by email or by phone — they may just come up with a solution! Other possibilities:

• Hospital OT or community OT may be able to get something made specially for you.
• Your local DIAL may know of a local college or voluntary group who might like a challenge.
• Try taxing the brains and talents of friends and relatives. They'll enjoy using their skills to find solutions.
• Maybe Remap (also known as 'Technical Equipment for Disabled People') can help? Remap is a wonderful voluntary organisation with groups nationwide, who'll design, make, or adapt products and equipment, free, for local disabled people, provided that the technical aid required can't be obtained commercially. Their volunteer experts include engineers, carpenters, machinists, handymen, OTs, physios, nurses, social workers, doctors. Something already on the market might do, modified, or they might design something specially for you.
  
  Remap publishes an annual Yearbook showing examples of work recently carried out. Creations in the past have included a driving seat for a very short person; help for someone with RA in opening a car door and lifting the handbrake; a special chair for a hairdresser who couldn't stand for long periods; a bath hoist modification so a woman with severe arthritis could operate it herself; a dressing frame for someone with poor shoulder movement (based on an upturned clothes hanger and two plastic balls); modifications to control knobs to make them more 'graspable'; a variable height trolley so a heavy casserole from the cooker could slide across to the trolley at one height, and be lowered to work-top height at the other end of the kitchen; and a gas-fire control device for someone with bending problems.

Overcoming some communication difficulties
phoning — writing and gripping — reading — computers

Phoning

How would we manage without the phone? In our frailest moments it keeps us in touch with the outside world, lets us chat to friends, do mail-order shopping, even talk on radio phone-ins. A phone means you can work from home and a phone-line means you can use a computer to talk to other computers anywhere in the world.

Some people are nervous about using the phone, especially at work, or for talking to officials. Overcoming any fears is well worthwhile. The phone can 'do your walking' for you, and help you gain 'access' to physically or bureaucratically inaccessible buildings. (See chapter 18 for tips on phoning techniques.) Invisibility on the phone is valuable: make the most of it. No matter how weak and frail you look, you can sound authoritative and get responses which might be difficult face-to-face. Or you can 'put a smile' in your voice, when talking to friends or business contacts, no matter how immobile or painstruck you really look and feel.

Probably the best general independent guide to phones and disability solutions is Ricability's online Stay in Touch 2004, full of information on mainstream and specialist telecoms equipment and services provided for disabled and older customers by the 20 largest fixed and mobile operators, with links to their websites where you can look at products and services.

Helpful too is DLF's factsheet Choosing a Telephone, Textphone and Accessories. The www.phonesreview.co.uk website is 'non-disabled', but may help you assess what's available generally.

Phone companies are keen to help people with disabilities overcome practical problems. Look, for instance, at BT's Age & Disability Action webpages. If you're not on the internet try BT Customer service on 0800 800 150 or an alternative provider's customer service. Look too at communication/telecomms products stocked by commercial suppliers listed earlier.

Try before you buy if you've got special problems, for instance at local disability living centres. Or ask your OT or local BT sales office where you can do this. If you're housebound, they might be able to arrange a home visit.

Some ways of making phoning easier:

• Sockets can be fixed at waist height, to save bending.
• Plug-in sockets for new phones can be fixed in more than one room, so you can move the phone about the house with you. (DIY kits are available.) Or buy more than one cordless.
• You can use hands-free speakerphones without having to pick up the handset. The phone becomes a sort of intercom, with inbuilt loudspeaker and microphone. (One disadvantage: other people in the room can listen in!). A too-tiny mobile may perhaps be easier if you use a hands-free Bluetooth earpiece/microphone.
• One YPA (younger person with arthritis) who couldn't raise the phone to his ear extended the handle by fixing a stick or ruler to it with sticky tape. The 'extension' could be left permanently in place. Some phones come with a headset option. Or ask your OT for advice; perhaps a handset support would help — for instance a shoulder rest to hold the telephone between the shoulder and ear?
• Push-button sizes vary. Specially large push-buttons may help, available on both corded and cordless phones (for instance Keepable's Geemarc digital cordless with big buttons). Handsets differ a lot too: some are easier to grip than others. My OT helped me find a special detachable handset handle which hooks over my hand.
• Stop your phone slipping about by using a telephone mat, or a slip-resistant pad like Dycem, or try a wall-mounted phone.
• On-hook dialling ('pre-dial') saves having to lift the handset until the call's connected. 'Last-number redial' saves fingers by automatically redialling the last number you called. Memory facilities store frequently used numbers: just press one or two buttons for automatic dialling.
• If you have a telephone answering machine with two way record, instead of writing notes, you can tape both sides of the conversation and play it back later to remind yourself what was said. You'll need to tell the other person you're doing this if you intend to use the information as evidence.
• Cordless phones can be carried with you anywhere, inside and out, provided you don't move more than the specified distance from the base unit. — Handy while you're in the garden or the bath or cooking the meal, or just resting. Real luxury. The base unit connects to the phone socket and electricity supply. The handset's batteries recharge automatically from the base unit. You do need another ordinary phone in the house too, to rely on if the electricity supply fails, or the battery runs down. 'Cordless Door Entryphones' combine remote control of telephone and door entryphone.
• If you live alone and can't afford to pay for your phone apply to your social services department for help: you may or may not be lucky. Or try the other sources mentioned in the 'Funding of disability products and equipment' section above.
• Keep bills down by 'shopping around' for the best deals. Save personal calls until cheap rate times, usually evenings and weekends. Try the Say-no-to-0870 website, which lists cheaper alternatives to 0808, 0844, 0845, 0870 and 0871 numbers for many well-known companies.
• Directory Enquiries. Weighty phone-books are unwieldy for arthriticky hands. The Directory Enquiries service is, alas, no longer free. However, as a condition of its operating licence BT has to provide free Directory Enquiries for people whose disability means they can't use directories. Phone 0800 587 0195, Mon - Fri, 0900 - 1700 and ask for the 'registration team'. You can also check the phone book online at www.thephonebook.bt.com. If you make very few calls, BT has payment schemes which may suit you. Light User gives you a rebate on your bill, while In-Contact Plus lets you receive and make outgoing calls to emergency and freephone numbers only. You have to agree not to use lines or services from other companies.

Writing and gripping

Weak grip, and stiff and painful fingers are a warning to treat your joints with care. So do please avoid straining them by trying to grip things too tightly, such as pens and pencils that are too thin, and do avoid having to press down hard to write. Look at the tips in ARC's Looking after your joints when you have arthritis; advice includes:

"Take frequent breaks to rest your hands briefly. Reduce the length of time you spend doing these activities and try to relax your grip. Use padding to enlarge the grip on things such as your pen, knife, toothbrush or spanner."

Other tips:

• Use felt-tip pens and soft lead pencils which need less pressure. Or you can get specially designed easy-grip pens, pencils, scissors, etc, one example being the wishbone-shaped 'Pen again', which comes in yellow highlighter and black permanent marker versions as well as plain ink.
• You can enlarge the width or extend the length of a pen or pencil. Enlarge the diameter by wrapping foam rubber around and fixing it with sticking plaster, or buy special plastic foam tubing (eg Plastazote Tubing), which comes in different diameters and lengths.
• You could mould your own 'grip': using a plasticine-like substance which sticks to an object and sets hard after you've moulded it to the shape you need, for instance 'Gripkit' from Homecraft Supplies uses two plastics you mould together, like plasticine, but which sets solid.
• You can buy ready-made enlarging pen grips and finger yokes, which may look neater though may not fit every pen/pencil. Or try inserting the pen/pencil through a 'holey' practice golf ball or foam rubber ball. There's also something called an 'Arthwriter', a round plastic ball to hold pens, pencils and cutlery. The 2cm hole in the centre has a screw to adjust for size.
• You can buy magnetic writing boards which hold paper firmly in place as you write.
• Send tapes instead of letters.
• Try word processing if you're not already a fan! (See the 'computers and word processing' section below). If you're planning to write something lengthy like a bestseller, think about dictating into a cassette recorder, microwriter or work straight on to a word processor/computer.

Of course writing isn't the only area where you need to deal with weak hands and gripping problems, and you'll find suggested solutions in other chapters, and below in the 'Computers and word processing' section. Some more ideas:

• Peta (UK) Ltd specialise in products for people with arthritis and reduced grip strength. Take a look on their well-illustrated website at the range of specially designed scissors, nail-care products, kitchen and garden tools. Examples include lightweight kitchen tools with angled non-slip handles to keep hand and wrist in a natural position, eg bread knives, spatulas, graters, cheese slices, and self-opening kitchen shears, plus EasiGrip and long reach garden tools, etc.
• Try cordless battery-powered scissors, eg Easy Snip Motorised Scissors from Promedics.
• Eating and drinking: using a steak knife to cut, and padding the handles of cutlery may help, or look at the variety of specialist cutlery available, eg angled or with a large grip. Use lightweight crockery and cups with large handles which can be gripped with several fingers. Insulated mugs can be held with both hands because you can support them underneath without burning yourself. When I was in hospital I found a two-handled toddler's mug handy as a holder for thin plastic disposable cups. The Neater Drinker is a large stay-warm mug, made for yachts so it doesn't tip easily, and has a non-retractable straw. If you use drinking straws you might be interested in the Straw Beri, which sits on the edge of a mug and stops the straw slipping about.
• Disabled Hands is an American website, but it may give you helpful ideas.

Reading

• Put a book on a table or book rest to spare weak hands and finger joints. Some book rests, like those used for cookery books, stand on a table. Others look like music stands or fix with a clamp on to a table. Some of the suppliers mentioned earlier have book rests; contact the DLF for other suppliers.
• Or try those book/document rests designed for computer users (look for instance in office or computer suppliers' catalogues).
• Maybe a special table would help? — Some have castors, and others are cantilevered so that the base slides under a chair or bed.
• A rubber thimble may help with turning pages (from a stationers or office supply shop), fixed on a stick if necessary. Powered automated page-turning devices are available too.
• 'Prism glasses' are expensive but a nifty device, especially if you're trying to watch TV or read a book while lying flat on your back. Worn like spectacles your eyes look up at the ceiling, but what you actually see is anything at an angle of 90 degrees to your eyes! Could help avoid neck strain. (From various suppliers mentioned before, eg Chester-Care.)
• See also 'Reading for Pleasure' in chapter 35, for information about books on tape — another solution to book holding problems.
• Readplease 2003 is a free Windows screen reader that claims to read any text on your computer screen. It's available as a free download at www.readplease.com. Other text-to-speech software programmes are available too.

Computers and word processing

Old-fashioned typewriters were exciting liberators for both Marie Joseph and Pamela La Fane. Quicker, easier on the joints, and with a much easier-to-read output. Both Marie and Pamela were talented writers with rheumatoid arthritis. Taking up typing launched Marie Joseph on her successful writing career just before her 40th birthday: "As my swollen hands skimmed over the keys, I felt a moment of sheer elation. This was something I could do. This was me…"

In the 1940s and 1950s, teenager Pamela La Fane, whose hands became very crippled with RA, worked out a way of typing using a stick, and embarked on a correspondence course in journalism. One result was her moving autobiography It's a Lovely Day, Outside (Gollancz, Ulverscroft), and later, the sequel No Going Back (Ulverscroft).

Many more liberating opportunities are open to us now, through computers, word processing, the internet, emails, forums and chatrooms. No need to travel miles, or to struggle to get reference books off the shelf — the books and libraries and information resources of the world are at our finger tips. We can shop from home, communicate with all and sundry, learn online, express ourselves in readable text and graphics, and even produce blockbuster novels if we want! And what a difference computers and information technology can make to the jobs we do, too.

You may have practical problems in using a computer, but there are many ways of overcoming them. Plenty of help and advice too, on other aspects such as funding, choosing, and training. If you're planning to buy a computer, try out as many as you can, and find out as much as you can beforehand. A short introductory course at my local adult education college helped me pinpoint what to look out for and where I had special needs, eg did I prefer a mouse or a touchpad or a trackball? And the local library had computers I could try out, too.

If you need a computer or computer-related advice for your work, ask the Disability Employment Adviser for help, and see chapter 31. For help with studies, see chapter 30.

Don't overlook all the 'non-disabled' information and advice available, for instance on the independent Consumers' Association Which? website. Which? tests, assesses, and reports on best buys in hardware and software and internet provider services.

Look too at product reviews and news in something like WebUser magazine, and its companion website www.webuser.co.uk. Lots of useful info and features for existing users too, such as forums, website reviews, product reviews and updates.

Ask other users, too! Some other sources of information:

• AbilityNet is a national charity helping adults and children with a disability use computers and the internet by adapting and adjusting their technology. For factual information, or to learn about AbilityNet services, or simply to discuss your concerns, you can visit the website, or phone their freephone helpline 0800 269545, or email enquiries@abilitynet.org.uk Other services include advice and factsheets, personal training, help with home installation.
  
  Rheumatoid arthritis and Computing is one of AbilityNet's online factsheets, co-produced with the National Rheumatoid Arthritis Society. It includes examples of how people have dealt with problems such as pain and gripping and tiredness. Solutions include smaller, lighter, standard-layout or ergonomically-designed keyboards; mouse alternatives; voice activated software, etc.
  
  Other factsheets include 'keyboard and mouse alternatives', 'Keyboard Shortcuts in Windows', 'Voice Recognition Software – An Introduction'. One of AbilityNet's best guides is, I think, their online My Computer My Way! — Lots of illustrations help you see the great variety of devices available, including size-adjustable and different shaped mice, joysticks, touchscreen devices, and touchpads available as separate devices. I thought they only came inbuilt in laptops!
  
  AbilityNet's preferred supplier for 'single assistive technology solutions' is Techready, another website well worth visiting for ideas. Two other 'non-disabled' websites with a variety of mouse, keyboard, etc solutions are Ergo2Work and Posturite.



• The Aidis Trust (Technology for Life for Disabled People) is another charity offering free advice, information, simple user guides, and support on all aspects of computing for disabled people. The Trust can tell you what software and hardware adaptations exist; can advise on what to think about when buying; and can give straightforward, simple troubleshooting advice on keeping your computer healthy and working well. If you receive DLA or AA the Trust may be able to help you get discounts through its partnerships with Fujitsu Siemens, Maxi Million and Inclusive Technology.
  
  You can contact the Aidis Trust on a Big Lottery funded helpline, 0845 120 3719 or email: support@aidis.org



• The British Computer Society (BCS) main website is well worth visiting. BCS also has a specialist group for disabled people and can provide information for employers and potential employees. The British Computer Society Disability Group organises meetings, roadshows and conferences and has a local support network for disabled people.
  
  The Group launched Ability Magazine, a campaigning publication for people who have difficulty using IT. It is aimed at those who buy, run and use accessible systems, users who find it difficult to use standard software and hardware, and topics include products, techniques and skills. Ability magazine is now published by John Lamb Media.



• If you're feeling ambitious, the European Computer Driving Licence (ECDL) is one widely recognised qualification you could work towards. There's an overview of ECDL on the British Computer Society's website together with a learning centre locator; also information about many other qualifications. The full ECDL syllabus is available on the ECDL Foundation website.
  
  Parts of the ECDL are also useful learning tools even if you don't want to 'go the whole hog'. For instance I wanted to learn at home and at my own pace only three ECDL modules: 'Using the computer and managing files', 'Word processing' and 'Information and communication' (includes emails and internet). The textbooks I saw first were huge and unwieldy, and very arthritis-unfriendly, but then I found some neat A5-sized books produced by CIA Training Ltd, one book per module, and spiral-bound so they open flat.



• The ITCH Network is a network of skilled volunteers who offer free local computer assistance to disabled people. ITCH stands for Information Technology Can Help. Ways ITCH volunteers can help include: providing impartial advice on computer hardware and software; helping you get connected to the internet, using email, and getting you started with standard packages such as word processing; solving technical problems; and helping you to get the most out of your computer and software. If you're already a confident computer user, you could even think about becoming an ITCH volunteer yourself! Contact ITCH Network via AbilityNet freephone (and minicom) on 0800 269545 or email: enquiries@abilitynet.org.uk



• Free software — There's masses of free software on the internet from games and voice readers to typing tutors. Be wary and make sure your computer is protected against any possible viruses, but if you want to explore, you could try Tucows, gateway to hundreds of free programs, ranging from fun educational programs and media players to colouring books and video editing software.

Keeping up-to-date with equipment, products and design

Assistive Technology (AT) is any product or service designed to enable independence for disabled and older people (King's Fund consultation, 2001). The Foundation for Assistive Technology (FAST) works with the AT community to support innovation in product development and good practice in service provision. Visit the FAST website, especially its online E-bulletins, for the latest AT news.

Inclusive design is also known as universal design, and design for all. For too long we and disabled people and older people have suffered from 'design exclusion', suffered from thoughtless product design making life unnecessarily difficult for us. But we're not the only people struggling with, for instance, unfriendly shrink-wrap plastic coverings — if they and so many other products, facilities and services were designed more thoughtfully, and designed not just for young able-bodied consumers, everyone would benefit.

Roger Coleman, Professor of Inclusive Design and co-Director of the Helen Hamlyn Centre at the Royal College of Art, explains inclusive design:

"In recent years there has been a shift in attitude, away from treating disabled and older people as special cases requiring special design solutions, and towards integrating them in the mainstream of everyday life through a more inclusive approach to the design of buildings, public spaces and, more recently, products and services. This is important for social equality but is also a significant opportunity for business growth through new products and services." (Design Council website Inclusive design, November 2006, updated February 2007)

The whole of Professor Coleman's article, with its related links, detailed bibliography and many references, is well worth reading. Other sources of information on inclusive design include:

• The Helen Hamlyn Research Centre at the Royal College of Art in London is a multi-disciplinary centre for inclusive design. HHRC works to advance a socially inclusive approach to design through practical research and partnership projects with industry.
• The Cambridge Engineering Design Centre (EDC) undertakes research to improve the design process, and EDC's website includes plenty of examples of poor design and of better inclusive design.
• The British Standard on Inclusive Design Management (BS7000-6)
• Ricability's web page on inclusive design

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Page last updated on 1 July 2007.
© Copyright Jill Holroyd, 1992, 2009. All rights reserved.