Chapter fifteen
OVERCOMING THE INFORMATION BARRIER
Finding help to help yourself
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Chapter fifteenOVERCOMING THE INFORMATION BARRIER
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Your Infokit of free or low-cost information
Using the internet to find things out
Buying and borrowing books and other publications
Self-help/patient support groups
Selective guide to further sources of help and information
For the full address of all organisations mentioned in this chapter, go to the separate Addresses List.
To deal with any new situation you need information, and especially with something like chronic arthritis. Not easy if you don't know anyone else in the same boat, or when your body stops you going where and when you want, or if the world seems full of rules and regulations most decidedly not designed for your totally unique situation. Well — get organised, start finding out, and some barriers at least will start to fall. Life should start to get a little easier.
Get two smart large cardboard wallets from a stationer's, or use a couple of large envelopes or cardboard boxes. The first is for your Infokit; the second for your Medikit (see chapter 4). Next get some notepaper, cheap envelopes, and some second class stamps. Also helpful and cheap — ready printed self-stick address labels (eg from Able-Labels, tel: 0870 444 2733, email: sales@able-labels.co.uk). Although some information will be free or downloadable from the internet, when writing for other leaflets or information (especially from a charity) it'll help ensure a reply if you enclose a stamped addressed envelope (SAE) or a stamp, at least.
Your computer and the internet will be a source of lots of useful information too, of course. In your computer folders, or 'favourites' have a file where you can copy any useful website addresses you come across. And for when you haven't got access to a computer, keep a small notebook where you can quickly jot down any website and other addresses you come across.
Then have fun collecting all your Infokit goodies!
1 Some useful phone numbers
Keep these all together in your Infokit:
By the way, if you can't manage to hold, handle or read the numbers in the phone book directory, eg because of RA hands, you can apply for BT's free directory enquiries service: 0800 587 0195, Mon - Fri, 0900 - 1700. Ask for the 'registration team'. You can also check the phone book online at www.thephonebook.bt.com
2 Some starter publications
Most of these are free, unless it says otherwise, below, and all are full of really helpful information. At the very least I'd suggest you get the two introductory booklets mentioned, one by ARC and the other by Arthritis Care. They'll give you links to further info.
Arthritis information from the Arthritis Research Campaign (ARC) (see below)
ARC (charity) concentrates mainly on medical, research, and educational aspects. There's a full list of publications, mostly free, on the ARC website. Download any which interest you, or order online, or send an SAE for a copy by post. Subjects include:
Arthritis information from Arthritis Care (see below)
Arthritis Care (charity) concentrates mainly on social, practical and welfare aspects of living with arthritis. There's a full list of publications, mostly free, on the Arthritis Care website. Download any which interest you, or order online or by post (free but donations welcome). Subjects include:
For other specific information on AS, lupus, rheumatoid arthritis, etc
contact the appropriate self-help group (names in chapter 3, addresses in the Addresses List). For information about other conditions there's also the BMA’s Family Doctor Series of health advice booklets, produced in association with Family Doctor Publications: low-priced booklets covering many topics, eg pregnancy and childbirth, childcare, sex education, psychological medicine, and general health. Available in many pharmacies, or online or tel: 01202 668330.
3 Other starter information to make life easier
Adding to your Infokit
Continue to add anything else you come across, eg any specifically local information, like your local access guide. Keep useful newspaper cuttings (regular health pages appear in the Times, Independent, Daily Mail, etc, and in local newspapers and in magazines like Woman, Woman's Own, Prima, Family Circle, Top Sante, Good Housekeeping, Best). Pick up free leaflets in the post office and chemist's.
Keep up-to-date by listening to radio programmes like You and Yours, Case Notes, Medicine Now, and local radio programmes. Choose informative TV programmes to watch too. Jot down useful addresses and books to read.
Disability Now is a well-written, lively monthly newspaper full of useful disability-related updates and information. It's available by post — for a free sample copy tel: subscription hotline 0845 120 7001 or email dnsubs@servicehelpline.co.uk (quoting 'samweb06'). There's a website too. The newspaper is also available on cassette, CD or via email from Talking Newspapers Enterprises Ltd, tel: 01435 862 737.
Worth knowing about for general health information are the British Medical Association (BMA)'s reference books. They're expensive though, so see if your local library has copies. They include:
One thing leads to another, and information already in your Infokit will entice you to go after yet more information specific to you and yours. Eventually you'll have so much clutter you'll wish you'd never started!
Guidelines
While the internet is a vast mine of health information it's not always easy to distinguish the good from the bad, and to sift out what's trustworthy from the mass of suspect quackery and old wives' tales. Please surf with care! Some tips:
Be wary of pseudomedical jargon. Instead of offering to treat your disease, some quacks will promise to 'detoxify' your body, 'balance' its chemistry, release its 'nerve energy', or 'bring it in harmony with nature', or to correct supposed 'weaknesses' of various organs. The use of concepts that are impossible to measure enables success to be claimed even though nothing has actually been accomplished
The BMA suggests you consider the following when looking for information on the internet:
Medical and disability information on the internet
Apart from the arthritis-specific organisations already mentioned in this chapter and chapter 3, a good introduction to finding medical/health information is an excellent section on the BMA website 'finding reliable health information on the internet' full of helpful links and advice. Try some or all of these, too:
Throughout this book I mention lots of other books worth dipping into. Most of them are paperbacks, so cheapish, but that doesn't mean you have to get them all! You can see many of them in your local library, and some publications can now be read and downloaded from the internet. Some of those I mention are now out-of-print, but to find secondhand books you can try sites like Abebooks — use the advanced search to input keywords and to narrow the search to find the cheapest available in this country.
When you see new and interesting books mentioned on TV and in magazines, make a note in your Infokit (title, author and, ideally, publisher, price and ISBN number) ready for your next visit to the library or bookshop. Good local bookshops will order books for you if not in stock.
The internet is a wonderful way of finding out about old and new books and other publications, and ordering them too. One of the best-known sites is Amazon, and there are plenty more to explore! Though you might have to pay post and packing costs, balance that drawback against the exhaustion of trekking from bookshop to bookshop only to find something's out of stock. For other bookselling sites do a 'Directory' search on a search engine like Yahoo or Google.
Another way of finding out about new books and ordering books is via the listings and reviews in The Good Book Guide, online or by subscribing to the monthly magazine. Even if you don't have internet access you can still phone or write to them (email: enquiries@gbgdirect.com, tel: 01626 831122, The Good Book Guide, Hamilton House,Fairfax Road, Heathfield, Newton Abbot, TQ12 6UD).
If you have difficulty getting a particular book, you could try contacting the publishers to see if they'll send books direct. Your library can help you track down the contact details — for instance in the excellent Writers' and Artists' Yearbook (published by A & C Black), which includes masses of other fascinating info —: magazine listings, radio, television, literary agents and prizes, writing courses, online resources, etc.
Libraries and librarians
Librarians are information specialists, not just issuers and storers of books. Most enjoy being asked to show off their skills, so do ask, not just about books but information of any sort, for example local organisations, bus services, evening classes. Every chartered librarian is bound by his or her professional code of ethics to provide information unless that information is restricted by law. Public libraries are free, though there may be a small charge for some special services.
If you can't get there yourself or send anyone on your behalf, then see if the social services or local library can arrange for the visiting library service to call. You can also telephone the library with queries, eg for specific addresses. If at first they're unhelpful, explain you're disabled/have got mobility problems.
If you can get along there yourself, so much the better. What they offer nowadays besides books is amazing — periodicals, newspapers, timetables, maps, talking books, videos, CDs and DVDs, computer access, children's stories and activities, and information about other specialised libraries, eg how to get information on a medical matter. Some libraries arrange guided tours to explain what's available. Or you could phone to ask if someone would have time to show you around, explaining you're keen to have help in making the most of your limited ability to walk/get about. Ask where to find, and how to use:
One last tip. Besides public libraries, it may be worth knowing that many academic and institutional libraries have obtained a Library Licence, which means that they have to agree to be open to the public and not just to their own academic staff and students. So they're obliged to provide a reference service (though not lending service) to the general public.
One of my main reasons for joining ARC, Arthritis Care, and Young Arthritis Care (no longer exists) was to get information, to find out all I could about arthritis and about how best to help myself. Since then I've joined other support groups too, for instance one concentrating on driving for disabled people, and another, the Association of Disabled Professionals, which focuses on employment. Self-help groups now exist for almost every condition under the sun!
Some people are put off joining a group. They may have a fearful vision of regular moan-ins, where everyone sits around swapping demoralising horror stories. Maybe some groups are like that, but fortunately I've managed to avoid them so far. You could always resign, or simply subscribe to the magazine. Other people question what benefits there can be in joining a group of people brought together by the very thing they would surely most like to forget? Fortunately, on the whole, the benefits outweigh any drawbacks.
Groups vary a lot in what they do and how they do it. Some concentrate on fund-raising and research, or act as pressure groups to educate and change society. Others help with information, welfare, finance, counselling, and practical matters. For many people social contact through a group is important; it can break feelings of isolation and be a source of information and inspiration to 'keep going'. If shyness puts you off going try contacting the secretary asking to meet just one or two members first. Invite them in for coffee maybe, so you'll know someone before going along. If getting there's the main problem, see if the secretary can help. Or take part via the internet.
People who already lead full social lives may choose to join because they value the information and ideas in the group's magazine, or because they feel they'd like to help other members in some way. Members have the advantage, over professionals, of firsthand experience.
Good self-help groups can also give healthcare professionals and 'sufferers' a special opportunity to learn from each other. The pros can learn more about the effects of treatment they recommend and a condition's social impact, and the non-pros can learn more about the illness than rushed surgery and hospital visits allow time for. Ideally, both sides can work together to educate society as a whole. In 2005, for instance, Arthritis Care and the National Rheumatoid Arthritis Society (NRAS) partnered with Boots the Chemist in a project to educate pharmacists about the impact of arthritis and provide simple tips to people with arthritis on how to improve their quality of life.
People like us with a chronic disorder may find different groups helpful at different times. Besides the specifically arthritic groups, we might at various times find helpful others focusing perhaps on parenthood, driving, coming off tranquillisers, employment, swimming and other leisure activities. To find out whether any specific group exists, consult reference books or Patient UK's directory of over 2000 UK patient support/self-help groups.
Regardless of its mildness or severity, a younger person with arthritis (YPA) can feel very isolated. Those of us going through bad patches can benefit tremendously from the support of other members who've been through the bad patches but who know the good times too. Having the opportunity to talk to and share feelings with fellow YPAs is a wonderful escape valve for something you can't discuss at length with other 'non-arthritic' people, however loving and concerned. Here are the comments of three Arthritis Care members in their 2Os. The first two are girls, the third a fellow:
"One of the worst things about being young is that one rarely meets anyone in a similar situation and one is therefore very isolated. I do not wish to meet other people like myself in order to sympathise with one another; rather to break the isolation and the feeling that one is somehow inferior to able-bodied friends and to be accepted as a person in my own right."
"The advantage of talking to another 'sufferer' besides sharing helpful tips and experience is you both know there is no need to explain anything and you can be perfectly natural."
"Of the 35 Group [formerly part of Arthritis Care] it needs to be said, they are the best people I know. I have changed, just by joining them. Gone is the introverted shy man I once was. In his place strides, with head high, an extrovert, confident and without fears. Not scared to play the fool, if it makes someone else laugh. Not too scared to take responsibility, if it is given to him. Quite simply the 35 Group are fun to be with, they make me happy when I should be sad."
For me the main benefits have been first, access to masses of information and ideas through the group's magazine Young Arthritis News (no longer produced) and Arthritis News, and second, making a special friend like Gwen. We found plenty to talk and laugh about besides RA — boyfriends, French, German, cooking, eating, travelling, etc, — and it was Gwen who inspired me to take up singing and came with me on hilarious singing courses. Gwen too who inspired me to think I might learn to drive one day, like her.
There's more information about ARC and Arthritis Care in the alphabetical list of organisations which follows, below. Other arthritis-related self-help/patient support groups are mentioned in chapter 3. Other chapters include yet more helpful organisations!
Note: These are in alphabetical order; for addresses see the Addresses List. I've not specified where info differs for Scotland, Wales or Northern Ireland as that's usually signposted by the sources given here. Most arthritis-related support groups are mentioned in chapter 3 rather than here.
Access guides and groups
Find out if local access guides and groups are available for your local area. Can help make planning your outings much easier. A good guide for London is Access in London produced by Pauline Hephaistos Survey Projects, who've also produced access guides to Paris, to football grounds, and to Israel. (see also 'Centre for Accessible Environments', later in this chapter, and 'Tourism for All', who produce lots of area factsheets).
Action on Disability and Development (ADD)
Charity. Not specifically arthritis-related, but mentioned here because learning about ADD's work can sometimes give a different perspective to our own lives and problems. In Africa, Symporosa, who lost the use of her legs as a result of childhood polio, is married to Patrick, who has been blind since he was 15. But with the help of their local Disabled Persons group, supported by ADD, they've become successful farmers, supporting themselves and their children.
Patrick cultivates the fields with guidance from Symporosa who sits on a low stool and works with a hoe. When they take the crops they've grown to sell at market, they also take cane chairs made by their non-disabled neighbours - Patrick carries five on his head and Symporosa ties five to the frame of her trike for the 18km round trip along a narrow rutted track.
When five-year old Innocent Sombie, in Burkina Faso, lost the use of his legs, his parents abandoned him to relatives, who kept him hidden away in a hut. At last, 11 years later, he has been discovered and is being helped by the local ADD-supported people's organisation to gain confidence and independence.
In developing countries disabled people are among the poorest, most disadvantaged and socially excluded. ADD works to help them, by supporting organisations of disabled people in Africa and Asia to influence policy and practice, aiming to end social prejudices, exclusion and poverty.
http://add.org.uk
Age Concern
Charity. Mainly for older people, but some of their information is helpful for anyone, eg Help with health costs, Getting legal advice, Dealing with debt, Planning a holiday, Help with heating.
www.ace.org.uk/AgeConcern
Arthritis Care
Charity. The UK's largest voluntary organisation working with and for people with any type of arthritis. Focuses mainly on social and welfare aspects; providing information, support, training courses. Campaigns to improve access to treatment and services. Has welfare department, free phone helpline (0808 800 4050), 24-hour information line (0845 600 6868). Particularly helpful, too, are the charity's self-management courses, which include health and welfare advice, confidence skills, and educational, employment and careers development advice.
Local branches are a way of making friendly contacts, or finding advice or help of some sort. Some groups arrange get-togethers, eg with a speaker, or social evenings, or swimming sessions. Joining is an excellent way of sharing experiences of living with arthritis, and can also help break feelings of isolation.
Membership is cheap and entitles you to receive Arthritis News, the excellent bi-monthly magazine packed with news, views and information. See also the other publications mentioned earlier in this chapter.
(One YPA commented: "Arthritis Care are liberal with information and caring support.")
www.arthritiscare.org.uk
Arthritis Research Campaign (ARC)
Charity concerned mainly with research, also education and information. Nationwide network of groups raising funds for research. Membership open to anyone who has or is concerned about arthritis. Publishes excellent free booklets and factsheets — see the note about these earlier in this chapter.
Also publishes the magazine Arthritis Today, four times a year. Excellent buy, containing articles written specially for the layperson — general interest and news about treatments, research and self-help. To subscribe, send a donation of £15 (2006) or more to ARC.
www.arc.org.uk
Arthritis and Musculoskeletal Alliance (ARMA)
UK umbrella association bringing together support groups, professional bodies and research organisations in the field of arthritis and other musculoskeletal conditions. ARMA has produced Standards of Care giving recommendations to local service commissioners and providers for the main groups of musculoskeletal conditions: inflammatory arthritis, osteoarthritis, and back pain. There's a useful links page on ARMA's website.
arma.uk.net
British Healthcare Trades Association (BHTA)
Worth knowing about if, for instance, you want to complain about unsatisfactory specialist equipment or services (such as wheelchairs, stairlifts, stoma and continence products, orthotics, prosthetics, etc) or if you want simply to identify a company that you should be able to trust.
Members of BHTA must meet its Code of Practice, which sets out standards and best practice, to eliminate 'cowboy' behaviour and ensure that member businesses are ones that members of the public can trust to give good service. BHTA helped me when I was having trouble with one of their wheelchair-supplier members.
BHTA publishes the 'Get Wise' series of leaflets: Get wise to using public transport, Get wise to using electric scooters and wheelchairs and Get wise to buying a mobility vehicle, Get wise — get more from your battery, Get wise to buying a stairlift and Get wise — how to make sure your wheelchair remains stable. One free sample copy of each is available on request from the BHTA Secretariat, email bhta@bhta.com or tel: 020 7702 2141.
www.bhta.net
British Red Cross Society
Voluntary organisation, with branches nationwide, aims to help people in crisis. Trains and provides first aiders, and offers services to help people with health issues lead full and independent lives, eg help with practical problems such as transport for housebound people, short-term loan of wheelchairs, commodes, other medical equipment; short-term help for someone returning home after an illness or operation; skin camouflage help, etc. Some branches also visit housebound people, eg to help with foot care, cooking, shopping, changing library books, posting letters, transport for hospital appointments, provision of escorts on journeys. (The St John Ambulance can sometimes help in similar ways, too.)
Lots of independent living products for sale in the online shop, eg sticks and other aids for mobility, toileting, pressure care, bathroom, bedroom, etc.
www.redcross.org.uk
Care and Repair
Charity. Promotes and supports housing initiatives to enable disabled and older people to live independently in their own homes. Local Care & Repair or Staying Put agencies can give advice on funding and finding a reliable builder or tradesman, or give other practical help to enable you to live independently in your own home. Some run 'odd job' or 'handyperson' services. Self-help information guides In Good Repair, Staying in your own home, Improving bathing facilities in your own home are downloadable from the website or can be ordered, tel: 0115 982 1527, email: info@careandrepair-england.org.uk
www.careandrepair-england.org.uk
Centre for Accessible Environments
Charity. Information, training and consultancy service on inclusive design. Useful to know about if, say, you wanted to tell your office or local shop where to go for advice on improving access. Publications include quarterly journal Access by Design. Useful links page.
www.cae.org.uk
Also worth knowing about: Employers' Forum on Disability, who publish Open for Business a guide which combines the business case for making premises accessible with the technical information required. Aimed particularly at hotels, shops and restaurants. (more about the Forum later in this chapter)
Citizens' Advice Bureaux (CABs)
Voluntary organisation, with over 900 local branches. Long-established and very helpful. Most staff are volunteers, but all are trained. Can advise on benefits, housing problems, local voluntary organisations, legal or financial problems, etc. Can help you deal with difficult bureaucrats and phone calls, filling in forms, drafting important letters, and obtaining specialist advice. Can sometimes arrange home advisory visit if you're housebound.
www.citizensadvice.org.uk
Also lots of clearly-written advice from them, free, in their online Adviceguide, on legal, money and other problems.
www.adviceguide.org.uk
Community Health Councils (CHC)
These no longer exist. Used to be the consumer's voice in the NHS. Try, instead, Patient Advice and Liaison Services (PALS) and Patient and Public Involvement (PPI) Forums, and the Patients' Association. (more later in this chapter)
Consumers' Association
Independent non-profit-making campaigning body, offering consumer advice and information to members and the public. Publishes the newsy monthly Which? magazine — good for shopping around from your armchair (or public library chair): you can study information about products and services before buying. Helpful website, too.
The CA also publishes clearly written treasure troves of independent and unbiased information, eg:
Councillors
(Find out names and phone numbers from your local town hall, library, CAB or internet) Part-time, locally elected representatives on Parish/Community Councils, County or District or Borough Councils. If you're having problems with your local authority see if your councillor can help. They know how the council works and have useful contacts. Most councillors hold regular 'surgeries' where you can ask for a personal interview.
One YPA was elected as one of two Labour Councillors for a ward of Thanet District Council. She wrote in In Contact:
"How did I cope? Well my knees hurt like … much of the time, but our local pharmacist is a great guy and advised me on which pain killers I could take over a long period. Thanks to him I managed about four hours on the doorsteps every day, although the inflammation in the joints was almost constant…
"I hope to specialise in planning, and I have already made the Chief Executive — who I have known for some years because of my agent's work — look carefully at access for disabled people. He has now come to understand that disabled people should use the same doors as the rest of the public — not be pushed 'round the back'. He has been pushing wheelchairs and is coming to understand the problems."
Department of Health (DH) and Department for Work and Pensions(DWP)
(To find internet sites and contact details for these and other government departments, try the Directories section of www.directgov.uk)
The DH deals with the NHS, health and social services (including child care services), pharmaceutical issues, preventive health care, mental health, and hospital services. In 2006 DH produced the Musculoskeletal Services Framework (MSF), which aims to improve the assessment, diagnosis, and treatment of people with arthritis and musculoskeletal conditions. Arthritis Care has a patients' guide to the MSF: Information for people with bone and joint problems.
www.dh.gov.uk
The DWP is responsible for the government's welfare reform agenda, delivering support and advice to people of working age, employers, disabled people, pensioners, families and children. Includes job-seeking, benefits, pensions. Website has an A-Z list of benefits and services. Includes the Disability and Carers Service (DCS) and the free Benefit Enquiry Line (BEL) for disability-related general benefits enquiries over the phone (0800 002200, textphone 0800 243355).
dwp.gov.uk
Look too at chapter 18 for tips on dealing with bureaucrats, and remember that people in your local CAB, DIAL, PALS or PPI Forum can help you find your way through what can be a difficult system.
DIAL UK Group (Disablement Information & Advice Lines)
(For your nearest DIAL Group, look in the phone book, on the internet or contact DIAL UK) Network of local advisory and information services run by and for people with direct experience of disability. Former OT student and YPA Sue now works for her local DIAL. Free, impartial and confidential. You can write, phone, or visit. Some groups offer counselling as well as practical and personal help. Questions covered include, for instance, community care, holidays, access and mobility, education, aids and equipment, income and benefits, discrimination, accommodation, personal care, personal relationships. They can also help you deal with officialdom, eg can help with form filling, accompany you to a tribunal.
The website lists masses of helpful factsheets, CDs, video and other publications (some downloadable).
www.dialuk.info
Disability Alliance
Charity. Set up in 1974, national federation of over 400 organisations of and for people with disabilities. Campaigns to 'break the link between poverty and disability'. Aims to promote a wider understanding of the needs and views of people with disabilities, especially their living standards. Is a major disability benefits publisher and information provider, especially known for its excellent annually revised Disability Rights Handbook, mentioned earlier in this chapter. Local CABs and Arthritis Care Contacts have copies, or you can buy your own. They also publish many very helpful factsheets and other publications, some priced, some free, and some downloadable. For instance an online checklist of benefits and tax credits, also 'help at home, 'moving into work', etc.
Besides publications, you can also find regularly updated information about benefits, tax credits and community care as well as disability related campaigns and parliamentary news on the website. The links sections are particularly helpful guides as to where else to find information, for instance about the often confusing mass of government bodies. The FAQs (frequently asked questions) section covers benefits, community care, education, law, tax credits, transport, work.
www.disabilityalliance.org
Disability Rights Commission (DRC)
Even if you don't consider yourself to be a 'disabled person' — and many of us with inflammatory arthritis don't, you do still have rights under the Disability Discrimination Act (DDA) provided you 'have an impairment or a long-term health condition that has an impact on your day-to-day life.' You can find out more from the DRC website, and seek their advice on tackling discrimination.
There's a helpline enquiry service. To email them they ask you to do it via the website form. Or the phone number is 08457 622 633 if you prefer. Useful too to know about DRC's conciliation service which the helpline may suggest, instead of legal action.
Over the next few years the Disability Rights Commission will combine with the Equal Opportunities Commission and later with the Commission for Racial Equality to form the CEHR, the Commission for Equality and Human Rights.
www.drc-gb.org
Disabled Living Foundation (DLF)
Charity. Free impartial advice and information service for disabled people and professionals, about all types of gadgets and equipment to help you stay active and independent; and, in London, one of the largest Equipment Demonstration Centres in the country. There's a helpline (0845 130 9177, textphone 020 7432 8009, email centre@dlf.org.uk), for enquiries about specific problems (except anything purely medical). Can give up-to-date information about manufacturers, stockists and prices of many gadgets, and about demonstration centres in London and around the country where you can try out equipment
DLF also produces excellent downloadable free factsheets on masses of different topics, from clothing to footwear, stairlifts to walk-in baths, jar openers to tap turners, bath seats to walking sticks, wheelchairs to scooters, 'sources of funding' to 'disability awareness', buying and hiring. The Disability Awareness factsheet is a particularly good, easy-to-read, concise guide, including topics like 'what is a disability?', 'cultural and social influences', 'barriers to ability', 'legislation affecting disabled people', 'terminology', 'education', 'employment', 'housing', transport', 'leisure activities'.
www.dlf.org.uk
Employers' Forum on Disability
The Forum, which has around 400 members, focuses on disability in the workplace, sharing best practice to make it easier to employ disabled people and serve disabled customers. Publications include Disability Communication Guide, which advises on specific impairments and preferred modes of assistance, gives guidance on language and etiquette. and practical advice on how to recognise and avoid attitudes and behaviour which can create misunderstandings and barriers. You might find it helpful to tell your employer about the Forum if s/he doesn't know it exists.
www.employers-forum.co.uk
Habinteg (Housing Association Ltd)
Habinteg's objective is to campaign for, and to provide, homes for disabled people that are accessible, adaptable and affordable, and integrated into mainstream housing schemes. It operates in all England's Housing Corporation regions; similar schemes exist in other parts of Britain. It currently has over 2000 homes, of which 530 were built specifically for wheelchair users and the rest to Lifetime Homes standards. Most new tenants are referred to Habinteg by local councils, though you can discuss your housing needs and ask for general information by phoning Lo-Call 0845 6065 202 and asking to speak to one of Habinteg's Tenant Services Assistants.
www.habinteg.org.uk
Legal advice
Many Citizens' Advice Bureaux (CAB) have volunteer lawyers — solicitors or barristers — who can give free advice. There's also lots of clearly-written legal (and other) advice from CAB, free, in their online Adviceguide
In larger cities Law Centres offer help with legal problems (addresses from local library, CAB, or Law Centres Federation, tel: 020 7387 8570, email info@lawcentres.org.uk). Many trade unions offer free legal advice to their members.
Free legal advice on benefits, tax credits, housing, employment, education or debt problems can be obtained from Community Legal Services (CLS) Direct or their helpline 0845 345 4345, in certain circumstances. On the CLS website there are also lots of helpful free legal information leaflets and factsheets, and a 'Find a Legal Adviser' directory to help you find a legal adviser in your area.
The Disability Law Service runs an advice line giving legal guidance to disabled people and their carers in the areas of consumer contract, community care, disability discrimination, education, employment, and welfare benefits. Can help with tackling discrimination, for instance by an employer. Does not cover divorce, conveyancing, criminal cases or personal injury claims. You can book an appointment for a telephone or minicom consultation, and the legal adviser then phones you back at the agreed time, tel: 020 7791 9800, minicom: 020 7791 9801. Or you can email on advice@dls.org.uk or write to the Disability Law Service, 39-45 Cavell Street London E1 2BP.
The Law Society's website has information on 'choosing and using solicitors' which includes a section on paying for legal services, free help, etc. Some solicitors operate a 'Fixed Fee Advice Scheme', where you can go to a solicitor's office and receive half-an-hour's legal advice for a set cost.
MPs and voting
Our elected representatives in Parliament — there to work for us! You can write to your MP at the House of Commons (London SW1A 2TT) or, if it's a very simple question, you could try phoning (020 7219 3000); you'll be put through to a relevant office or be asked to leave a message. If you want to find out your MP's name, you can phone the Information Office on 020 7219 4272 or use the internet Directory of MPs. There's a lot more about Parliament and how it and our MPs work on the www.parliament.uk website.
MPs have 'surgeries' where constituents can see them locally about problems. As their time's limited, sort out what you want to say before writing or meeting your MP. Keep it short and to the point. (Polite too, even if you're angry!)
It's worth writing about anything you feel strongly about, especially health, arthritis, and disability issues — keep reminding MPs of our needs and existence. Write to the Prime Minister, too, at 10 Downing Street, London SW1A 2AA, or email via the www.number10.gov.uk website. It all helps, and you usually get some sort of answer even if it's not the one you wanted.
There's an All-Party Parliamentary Group on inflammatory arthritis, encouraged and assisted by the National Rheumatoid Arthritis Society. There's also an All-Party Disablement Group, a group of MPs and peers who take a special interest in disability issues. It's chaired by Lord Jack Ashley of Stoke, who has done a considerable amount for disabled people. The impact of his own acquired disability (total deafness) on himself, on his actions and on his family makes his autobiography particularly fascinating reading.
The late Labour MP Jo Richardson (1923-1994) had RA for around 30 years. In Michael Leitch's Living with Arthritis (Lennard/Collins) she wrote about herself:
"My constituents know about my arthritis and they have always been sympathetic. Nobody has ever said, 'You shouldn't be doing this'. They just pile more work on me. Perhaps some people find it easier to relate to me because I have a disability. 'You've got your problems' they say, then pour out their own.
"My friends in the House of Commons give me help and support. They will pick up a bag for me without being asked, that kind of thing. There is one set of interview rooms in the House which has very difficult door handles: you have to twist them. I can't manage that so I have to ask someone to do it for me… "
If you can't get out to vote, get a postal vote. Apply, at any time, to the electoral registration officer at your local council office or complete a form on www.aboutmyvote.co.uk. Free and downloadable factsheets on the Electoral Commission's website include Absent voting in Great Britain and Access to voting for disabled people.
National Centre for Independent Living (NCIL)
Run by disabled people. Source of information, training and expertise on independent living and the direct payments scheme. Priced publications include Everything you need to know about getting and using direct payments, The Rough Guide to managing personal assistants, Direct Payments: A Beginner's Guide (video). To make an order, or for information, email info@ncil.org.uk, phone 020 7587 1663 or write. Website includes a forum for discussion related to independent living and direct payments.
www.ncil.org.uk
By the way, if you want to know about the future of direct payments, and pilot schemes to replace them with 'individual budgets' or 'self-directed support', try the 'individual budgets' website.
Office for Disability Issues (ODI)
The ODI is the focal point within government to coordinate disability policy across all departments. However, for advice and information about independent living, rights, financial support and more, ODI asks you to visit the disability section of the Directgov website, www.direct.gov.uk
www.officefordisability.gov.uk
Patient Advice and Liaison Services (PALS)
NHS Trusts throughout England each provide a PALS, where patients and public can get information, advice and support with using the NHS and other health-related issues. To contact your local PALS try the PALS website, your phone book, or the NHS website.
Patient and Public Involvement (PPI) Forums
PPI Forums are made up of volunteers who work together to improve health services. There's a PPI Forum for each NHS Trust. The Forums are supported by the Commission for Patient and Public Involvement in Health (CPPIH).
Not the same as PPIP, which is NICE's Patient and Public Involvement Programme. The PPIP works with NICE (National Institute for Health and Clinical Excellence) to involve patients, carers and members of the public with NICE's work. NICE's website explains how you can get involved if you want to.
Patients' Association
Charity. Helps and advises patients, campaigns, and publicises the patient's viewpoint. You can contact them if you want to share your concerns or experiences of using health services, or want information about how to complain. There's a helpline: 0845 608 4455 (limited availability), ordinary number: 020 84E9111, or write, or email: mailbox@patients-association.com
Publishes Patient Voice magazine, and other publications, some downloadable, which include How to obtain access to your medical records, Patient rights in Europe and the UK, You and your doctor, You and your dentist, and the 'Simple Guides' series, which includes A simple guide to arthritis, A simple guide to osteoporosis and others. There are some useful FAQs (frequently asked questions) on the website.
www.patients-association.org.uk
PHAB (Physically Handicapped/ Able Bodied)
Charity. PHAB aims to 'promote and ancourage people with and without physical disabilities to come together on equal terms, to achieve complete integration within the wider community'. PHAB supports a network of over 200 clubs in all age ranges offering activities and holidays which all members, whatever their disability, can share and enjoy together. For the address of your nearest group, contact PHAB head office, tel: 020 8667 9443 or email: info@phabengland.org.uk
www.phabengland.org.uk
RADAR (Royal Association for Disability and Rehabilitation)
RADAR is a national network of about 600 disability organisations and individuals, run by and working for disabled people. It lobbies policy-makers and legislators and campaigns to promote equality for all disabled people. RADAR provides the secretariat to the All Party Parliamentary Disability Group, which meets bi-weekly. RADAR also co-ordinates an annual 'MP Dialogue Scheme', which gives individuals the chance to have a one-to-one discussion with their local MP to talk through current disability issues, or their local concerns.
RADAR also produces a variety of publications including Get motoring, Holidays in Britain and Ireland, Leisure time: days out, Leisure time: sport and outdoor activities. Runs the National Key Scheme (NKS), which offers independent access for disabled people to some 7,000 locked public toilets around the country.
www.radar.org.uk
Religious bodies/churches
Many people find a lot of emotional, social and practical support through religion and from local churches.
Samaritans
Charity founded in 1953. The Samaritans' 24-hour telephone helpline is best known for providing a confidential ear for suicidal people, but they're also there to provide confidential emotional support for anyone who's especially miserable, not only people who are suicidal. The Samaritans' international name explains their work best: 'Befrienders Worldwide'. Some YPAs (young people with arthritis) have been Samaritan volunteers.
You can call: 08457 90 90 90 for the cost of a local call (textphone: 08457 90 91 92), or write (to Chris, P O Box 9090, Stirling, FK8 2SA), or email: jo@samaritans.org
For admin queries, eg about donating, volunteering, or to find out more about their fund-raising gift catalogue, contact your local branch, or the central office in Ewell, Surrey, tel: 020 8394 8300, email: admin@samaritans.org
www.samaritans.org.uk
SPOD (Association to Aid the Sexual and Personal Relationships of People with a Disability)
Closed in 2004. There's a 'sex and relationships' section on www.netdoctor.co.uk which includes lots of factsheets on contraceptives, etc. See also chapter 27.
Stene prize
Every other year, EULAR (European League against Rheumatism) and the Social Leagues offer the Edgar Stene Prize for the best essay by a 'rheumatic patient' on a topic chosen by EULAR. The 2005 topic was about coping with the fatigue and tiredness of a rheumatic disorder. See the EULAR website for more information.
Tourism for all UK
Charity. Includes the former 'Holiday Care'. Provides information to people with disabilities and older people about accessible accommodation and other tourism services, and provides expertise and support to the tourism and hospitality sector to promote accessible services for everybody. Masses of really helpful factsheets and publications, covering the UK and some overseas destinations. Info line: 0845 124 9971, admin: 0845 124 9974, email: info@tourismforall.org.uk
tourismforall.org.uk