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CONTENTS
INTRODUCTION INTRODUCING OSTEOARTHRITIS About the disease GETTING A DIAGNOSIS The process of getting diagnosed COMMUNICATING WITH HEALTH PROFESSIONALS Who you will see, what you will do LOOKING AFTER YOUR JOINTS Useful ways of living with arthritis PRACTICALITIES Sources of help USEFUL ADDRESSES 3 4 10
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INTRODUCTION
Osteoarthritis is a disease of the joints affecting almost everyone as they get older. Around eight out of 10 people over the age of 50 are affected. In its early stages, it can be very difficult to detect. Some people who have arthritis are not even aware that they have the disease, or only become aware of the problem when symptoms develop. Osteoarthritis also varies tremendously from person to person. Pain might be a problem for some, while others may find it difficult to move and use the joint. Osteoarthritis can begin at a young age, so it does not mean that you are over the hill teenagers have sometimes been known to develop it. Osteoarthritis cannot be cured, but an early diagnosis can help slow its progression and a lot can be done to ease the symptoms. It is not a good idea to ignore sore joints, inflammation and other warning signs. Some people delay seeking treatment because they believe chronic aches and pains are simply signals that they are getting old, and that nothing can be done about them. In fact, there is a wide range of treatments to try once a diagnosis has been made and a lot that you can do to make day-to-day living easier for yourself.
INTRODUCING OA
What is OA?
Osteoarthritis is a condition that usually develops gradually, over several years. It affects a number of different joints, but is most commonly found in the fingers, knees, hips and spine. The precise cause of osteoarthritis is unknown, but it does appear more in females than males and often starts after the menopause, which can lead to it being seen as part of the ageing process. For some people, the changes are so subtle and develop over such a long period of time that they are hardly noticeable. But others may experience gradually worsening problems, with pain and restricted movement, particularly in large joints such as the hip or knee, being involved. You may still have to see the doctor from time to time to have your condition reassessed and your treatment plan discussed. We do not yet know the causes or the cure for osteoarthritis, but recent research is uncovering the mechanisms which lead to joint damage as well as factors that control the healing response. For example, we now know some of the chemicals which thin out the cartilage in osteoarthritis. Drugs are being tested that inhibit the actions of these chemicals. Doctors and research workers have changed their attitude a great deal in recent years. They now see real possibilities of understanding and controlling osteoarthritis in the future. They no longer see osteoarthritis as an inevitable part of ageing or a wear and tear disease, but more as a major challenge and an important problem which they can one day solve.
What happens?
Healthy cartilage the protective layer that covers the bone end in the joint is very smooth, strong and flexible. It absorbs the stresses put on a joint, and protects the bones from damage. In osteoarthritis, this becomes pitted, brittle and thin, and, over time, can wear out completely. When the cartilage deteriorates, the bone underneath thickens and broadens out, spreading the weight that the cartilage has to support. As the cartilage becomes thinner, the bones of the joint rub 4
SYNOVIAL MEMBRANE
BONE
CARTILAGE
A normal joint
THINNING CARTILAGE
the amount of synovial (lubricating) fluid can increase, often causing the joint to swell. It may also become stiff and painful to move. Whilst the pain itself can be very unpleasant, it does not generally make you feel unwell.
Causes
Specific causes of osteoarthritis are hard to pin down and, like most conditions, there are many factors that can increase the risk of developing it. Usually, several factors need to be present before osteoarthritis develops including the following.
Age
People usually develop osteoarthritis from their late 40s through to old age and it is often undiagnosed. Although it is uncommon before the age of 40, it is not unheard of. It is not known for sure why older people tend to develop it, but it is probably due to bodily changes which come with old age, such as the muscles becoming weaker, putting on weight and the body becoming less able to heal itself.
Gender
Osteoarthritis is more common and often more severe in women, especially in the knees and hands.
Obesity
The effects of obesity on osteoarthritis are well documented. Carrying extra weight puts pressure on weight-bearing joints, especially the hips, knees and spine. It also increases the chances of osteoarthritis worsening once it has developed.
Joint injury
A major injury or operation on a joint may lead to osteoarthritis at that site later in life. Normal activity and exercise are good for the joints and do not cause osteoarthritis. However, very hard repetitive activity may injure joints. Osteoarthritis is common in people with certain occupations such as physiotherapists (osteoarthritis of the thumbs), and in professional footballers (osteoarthritis of the knee) if they have had cartilage surgery. Exercising too soon after an injury has had time to heal properly may also 6
lead to osteoarthritis in that joint later on. It is always best to check with your doctor, physiotherapist or nurse when it is safe to exercise after you have sustained an injury.
Heredity
There is one common form of osteoarthritis (nodal osteoarthritis) that runs strongly in families. This particularly affects the hands of middle-aged women. It is not known which inherited genes lead to nodal osteoarthritis, but it is believed that many genes are involved. In other common forms of osteoarthritis, heredity plays a small part compared to obesity, ageing and joint injury. There are some very rare forms of osteoarthritis that start at a young age and run in families and these are linked with single genes that affect collagen an essential component of cartilage. The standard explanation for osteoarthritis is that it is a result of wear and tear. This does not necessarily mean that you have done something to cause it, rather it is a term that doctors use to describe the type of damage that osteoarthritis causes in a joint. There are many people who have had very similar lives, one of whom will have virtually perfect joints, while the other has quite severe osteoarthritis. Therefore, there must be an inbuilt susceptibility to, or protection against, osteoarthritis.
Which joints?
Osteoarthritis is very variable and can affect different joints in different ways, but is most 8
commonly found in the knees, hips, hands and spine. Pain can vary in severity and can be so mild that many people dont even notice it, or so severe that mobility and quality of life is affected. The weight-bearing joints such as the knees, ankles and hips are most frequently affected by osteoarthritis, making sitting down, rising from a reclining or sitting position and walking difficult. Osteoarthritis in the fingers, thumbs and wrists affects grip strength and the ability to perform everyday tasks such as opening jars, picking small things up, writing and doing up buttons. Shoulder and elbow joints are also susceptible to arthritis although this is much rarer. Some people may experience a grinding feeling in the shoulder and a reduced range of movement. Pain from arthritis in the shoulder may also make it difficult to sleep. Arthritis in the elbow joint can make the elbow very difficult to straighten and bend, and grinding and swelling can often occur. Elbows are very sensitive to injury so very mild arthritis here can lead to quite a significant loss of mobility.
GETTING A DIAGNOSIS
It is usually not difficult to tell if somebody has osteoarthritis. It is more difficult to tell if the disease is causing the person's symptoms because pain in an area may not be due to osteoarthritis. Your GP will be able to assess whether you have osteoarthritis or whether your symptoms are due to another illness.
Your history
To diagnose osteoarthritis, your GP will begin by asking you to describe the symptoms, and when and how the condition started. Make sure you tell your doctor exactly how you feel, giving a good description of pain, stiffness and joint function, and how they have changed over time. It is also important for the doctor to know how osteoarthritis affects your work and daily life. Finally, you will be asked about any other medical conditions you may have and whether you are taking any medicines.
Physical examination
Your doctor will examine your joints and may check muscles, nerves and aspects of your general health. He or she will feel for any bony swellings and creaking joints. They will also see any restricted movement and will look for joint tenderness and any thinning muscle, excess fluid or instability in the joints. You may be referred, after a time, to a physiotherapist or occupational therapist who can give you special exercises to do and advice on how to relax, how to overcome mobility problems, how to avoid joint strain and how to cope with pain. If your arthritis is severe, you may be referred to a hospital specialist such as a rheumatologist or an orthopaedic surgeon.
you an X-ray that shows severe changes does not necessarily mean that you will have a lot of pain or disability. Also, they may not show early osteoarthritis damage, before much cartilage loss has taken place.
that they have been put on the scrap heap and that nothing can be done to help. Some argue that wear and tear is actually inaccurate since younger people can get osteoarthritis too and their bones are not old at all. However, the same disease factors are involved. If you hear the phrase wear and tear to describe your osteoarthritis, don't be afraid to use your joints. Appropriate exercise is actually very beneficial for osteoarthritis because it helps to strengthen the muscles that surround the joint, making the joint more stable and less painful.
to ask your GP before your appointment in case you become flustered or your mind goes blank. It will give you confidence too. If you feel that you need more time with your doctor to bring up the points that are worrying you, you can always ask for another appointment. You may even be able to book a double appointment. Your local surgery will be able to tell you of its rules. When you join a practice you can ask at reception if a GP is interested in a particular condition, for example, arthritis. Don't be afraid to discuss the treatment options available or to take on more responsibility for your own needs. It is worth reminding your GP of any other conditions you have or medications and supplements you are taking.
may be the most effective method of arthritis prevention. It also helps to reduce pain. Combining regular exercise with healthy eating is often better than dieting alone pacing yourself. Instead of attending to the jobs that need doing all at once, such as housework or mowing the lawn, spread them throughout the day or week wearing shoes with thick, soft soles can act as shock absorbers for your feet, knees and hips, and reduce jarring using a walking stick can reduce the weight and stress on a painful hip or knee joint. A therapist can advise you on the most appropriate one for you and how to use it properly.
successfully with simple over-the-counter painkillers, such as paracetamol or ibuprofen (a non-steroidal anti-inflammatory drug). Make sure you follow the dosage instructions on the packet. A GP may prescribe a different non-steroidal antiinflammatory drug (if this is appropriate for you) or a stronger codeine-based painkiller. Should your condition deteriorate to the point where your mobility is severely affected, you may be advised by your GP to see a rheumatologist for specialist advice on medical management, or an orthopaedic surgeon to discuss the possibility of joint replacement surgery.
affected joints are painful, often very stiff and are warm, tender and swollen with fluid (not with bone). Blood tests show widespread inflammation which affects the body generally, often causing anaemia, weight loss and tiredness. X-rays show that the bones can become thin and eroded, rather than the bony spurs and calcification which indicate osteoarthritis. There is a difference in the pattern of stiffness people with rheumatoid arthritis tend to be worse in the morning while people with osteoarthritis tend to be worse in the evening. Treatment is also different. People with rheumatoid arthritis will need to take a mixture of drugs to help control their disease and reduce inflammation. They will see a range of health professionals such as rheumatologists and orthopaedic surgeons who will keep an eye on the progression of their disease and help them to find the right treatment for them. Treatment of osteoarthritis depends very much on GPs who are more than capable of treating your disease. Just because you do not have to see a rheumatologist, it does not mean that you are not being as well looked after.
Analgesics
These are pain-relieving drugs, such as paracetamol, that do not affect the arthritis itself, but help relieve the pain and stiffness. They come in varying strengths and the stronger ones are only available on prescription. Paracetamol, which is available over the counter, is the simplest and safest painkiller, and the best one to try first. Side effects are unusual, although taking too great a dosage can cause liver damage. Many pain relieving drugs, including pain relief gels, can be bought over the counter without a prescription, but don't assume that, just because they are easy to obtain, they are
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harmless. Never take more than the recommended dose and, if in doubt, talk to your pharmacist or doctor. Combined painkillers such as coproxamol, cocodamol and codydramol are available on prescription. They contain paracetamol and a second codeine-like drug. These may be stronger than paracetamol, but are more likely to cause side effects, such as constipation or dizziness. Some anti-inflammatory drugs such as ibuprofen can be used as painkillers in low doses.
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Occupational therapists
Remember that OTs can provide you with equipment right up to bathrooms and stair lifts. My OT managed to get me a walk-in shower room installed because I just couldnt step into the bath. Jan Slaney Occupational therapists (OTs) are the best people to get help from if you are having difficulty with day-to-day tasks like washing, dressing, cooking and cleaning. They can also advise on your work environment. OTs are experts on what equipment is available to help you and where you can buy these items. They may also be able to supply some of the more expensive items on temporary loan.
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Your GP or hospital consultant can put you in touch with an occupational therapist. This may be at your local hospital or they may visit you at home. If you are having trouble getting a referral to an OT, then you can refer yourself by phoning your local social services department. You should ask for an assessment of your needs under the NHS and Community Care Act 1990.
Make sure that you tell the OT what you want and what youd find most helpful. I actually got the rails in my bathroom, the high loo and the railing up the stairway through social services. Veronica Jones Im a Walking for Health leader, which is a scheme to encourage people to get out and about. The fact that Im leading them with my new hip gives them all confidence too. Meriel Blake I try to do stretching and range of movement exercises every day. Im piling on the weight because its almost impossible to do any aerobic exercise. Anne Howard Im useless at doing my exercises, even though I know theyre good for me I find them boring. I know that its best not to be overweight with OA, but its difficult. Jan Slaney Im starting to ride my bike again after my hip replacement, but I have lost a bit of confidence because I dont want to fall and damage it. Meriel Blake
example.
Use less effort and shift rather then lift slide heavy
pans along a kitchen top; use a trolley to move things over longer distances. Use larger, stronger joints use larger joints to protect the fragile joints in your fingers and wrists by using larger ones. So, rather than pushing a door open with your hand and wrist, use your shoulder or hip. Avoid handheld bags: use a shoulder strap, satchel or rucksack instead. Don't grip things too tightly with pens, for example, choose a fatter one, hold it as loosely as possible or expand the grip with padding, and take frequent breaks when writing. Change positions often shifting position or stretching every half an hour will help you dodge joint stiffness, fatigue and pain. Watch your posture if you slouch, the weight of your body falls forward putting added strain on muscles and joints.
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appropriate for you to be referred to a physiotherapist, who will help you work out a programme combining different types of exercise: flexibility or range of movement these exercises gently take your joints through their range of movement, then ease them a little further strengthening these tighten and relax muscles around a joint to protect it aerobic any exercise that raises your heart rate and gets you slightly out of breath.
Range of movement
Range of movement (ROM) exercises form the backbone of every exercise programme. Everyone should do these as they help maintain flexibility, and are important for good posture and strength. The exercises involve taking joints through their full range of movement and then easing them a little further. ROM exercises are done smoothly and gently so they can be done even when in pain. Ask your GP or physiotherapist for examples of these exercises or call 020 7380 6540 for Arthritis Care's Fit for life booklet, which includes these exercises.
Strengthening
Strengthening exercises are important for everyone, especially people with arthritis, because they help to strengthen the muscles which move, protect and support your joints. Many people become less active when they develop arthritis because of the pain and fear of causing damage. This can lead to muscle wastage and weaker joints. By developing strong muscles, joints become more stable and things such as walking and climbing stairs are easier. Start slowly, gradually building up the repetitions. As the muscles get used to doing more, they adapt and become stronger. The type of exercises you do will depend on which joints are affected and how severe your condition is. Always check with a doctor or physiotherapist before starting a regime.
Aerobic
Aerobic just means exercise that raises your heart rate. This type of exercise burns off calories, 18
speeds up the body's metabolism, helps maintain a strong heart and helps muscles work more effectively. It also helps control and reduce weight, improves sleep, strengthens bones, reduces depression and builds up stamina. The best forms of aerobic exercise for people with arthritis are walking, cycling and swimming. Your doctor may possibly refer you for hydrotherapy. This involves exercising in a heated pool under the supervision of a physiotherapist. It allows people with arthritis to exercise their joints and muscles whilst being supported with warm water at body temperature. The warm water aids muscle relaxation and eases pain in joints, making it easier to relax. Because the water supports your weight, the range of movement in your joints should increase and pain decrease. You can improve muscle strength by pushing your arms and legs against the water. Most hydrotherapy pools range in depth and if you cannot lower yourself into the water, there will usually be a hoist. The first meeting will last about 45 minutes and 30 minutes thereafter. Hydrotherapy sessions may be held in your local hospital. For more information on hydrotherapy, contact the communications department at the Chartered Society of Physiotherapy, 14 Bedford Row, London, WC1R 4ED. Tel: 020 7306 6666. Begin any exercise by stretching to warm up. To get any benefit, aerobic exercise must be done for a prolonged period (20-30 minutes) two to three times a week. You are at a good level if you start to sweat and can still carry on a conversation at the same time. Build gradually each day until you reach your goal. Check with a doctor before beginning any regime, especially if you have moderate to severe arthritis, a heart condition or high blood pressure. These exercises done correctly and consistently will provide some relief from the pain of arthritis, help with good posture, and increase your energy and vitality.
I tried hydrotherapy, but found that it wasnt effective enough at alleviating the pain for me. The good effects of it wore off pretty quickly. Joyce Cox
will usually be heated to around 34 degrees centigrade.The warm water soothes the joints, relieves stiffness, and promotes better blood circulation. The water enables gentle and lowimpact exercise, and also offers the resistance needed to keep muscles and joints in shape.
Regular exercise is one of the best ways to relieve
the symptoms of osteoarthritis. Keeping active strengthens the muscles around the joints helping to prevent further degeneration. Develop a moderate exercise programme a strenuous programme may cause more pain and possibly accelerate damage. Range of movement exercises should be done every day in every joint. As with any exercise programme, consult your GP before you begin this type of exercise. Start slowly and make sure to avoid exercising in water that is too hot. It is very important not to overdo things. Rest your joints especially when they are inflamed or particularly painful. Resting painful joints will make them more comfortable, but too much may make them stiff. You need to strike a balance between rest and activity.
A healthy diet
Not eating certain foods doesnt make any difference to my arthritis. Jan Slaney I try to steer clear of citrus fruits because they seem to add to my pain. Joyce Cox I have eliminated tomatoes, aubergines, green peppers and potatoes from my diet. I find that I am in less pain when I dont eat these. It has definitely helped me. Mrs Lipman Your body needs a range of nutrients, so make sure you eat a healthy, balanced diet and include lots of fruit, vegetables, pasta, pulses (such as beans and lentils), fish and white meat. Try to also cut down on sugary and fatty foods. Eating well will also help you lose any extra pounds which can put extra strain on your joints. There is a lot of debate about whether what you eat affects arthritis. Certain foods may help. Studies on essential fatty acids (found in oily fish) show that they can ease joint pain and stiffness. Try to include more of these in your diet and consider taking a supplement. Some people claim that certain foods seem to make their inflammation or pain worse. If you notice this, and can work out which food is the trigger, it makes sense to avoid it in future, as long as you don't miss out on essential nutrients. Get advice if you are unsure, and don't assume that
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what works for someone else will work for you. Some doctors believe that special diets are worth trying, although research in this area is complicated and much more needs to be done. If you are considering one, talk it over with your doctor or dietician first. Beware of diets that claim to cure osteoarthritis, and never begin a diet that involves stopping medication without discussing it with your doctor. Read Arthritis Care's Food for Thought booklet for further information on diet and arthritis. Call 020 7380 6540 for your copy.
Ive found that orange juice, oranges and hard cheese all make the pain of my arthritis worse so I try not to eat them. Meriel Blake
Supplements
People with arthritis take a huge range of supplements including herbal remedies, homeopathic medicines, vitamins, minerals and dietary supplements. So far there is little evidence that dietary supplements improve arthritis or its symptoms, though recent findings for omega-3 fatty acids and glucosamine are promising. Before you start taking supplements bear in mind the following: find out as much as you can about the supplement in which you are interested remember that supplements will not cure arthritis check with your doctor or pharmacist for interaction with prescription drugs tell your doctor if you are taking any supplements and report any side effects immediately keep a record of how you feel so you can see if they are having an effect buy brands from reputable manufacturers consider the cost. Taking supplements can be expensive. Below are a few of the supplements most commonly taken by people with osteoarthritis. Ginger in capsule form really seems to help my arthritis. Mrs Lipman I drink lots of semi-skimmed milk and take a homeopathic supplement to keep my bones strong and to encourage the bone to knit into my new hip replacement. Meriel Blake Cod liver oil capsules seem to have been useless for me. Veronica Jones
Glucosamine
Glucosamine is popular with people who have osteoarthritis. It is a natural substance extracted from crab, lobster or prawn shells. While it does not cure arthritis, some people believe that it does help ease the pain and stiffness of their osteoarthritis. There is not much scientific evidence to support this at this stage. It doesn't 21
help everyone, so if you haven't seen an improvement after two months, it probably won't help you. There are no known major side effects, but lesser ones include nausea and indigestion. Glucosamine, which comes in capsule form, is often taken in combination with chondroitin.
Chondroitin
Chondroitin sulphate exists naturally in our bodies and is thought to give cartilage elasticity and to slow its breakdown. In supplement form it is derived from the trachea of cattle or sometimes shark cartilage, and is often taken alongside glucosamine. There is no proof that it reverses cartilage loss, but some studies suggest that it helps stop joint degeneration. Chondroitin is a slow-acting supplement so don't expect to see any improvement for at least two months. It doesn't help everyone if you have severe cartilage loss you probably won't get any benefit. There do not seem to be any serious side effects, but minor ones include nausea and indigestion. It could increase the chances of bleeding if you are taking any blood-thinning drugs. The long-term effects of this supplement are not known.
Fish oils
Fish oils, like cod liver oil, can produce a modest improvement in joint pain and stiffness and have a good record of easing the symptoms of osteoarthritis. Recent research has found that omega-3 fatty acids are effective because they reduce the activity of the enzymes responsible for cartilage damage, and they switch off another enzyme known to cause much of the pain and inflammation of arthritis. A daily dose, often in capsule form, must be taken for at least three to six months. Any benefit is lost when you stop taking it. Care should be taken not to exceed safe levels of vitamin A and D when taking cod liver oil. Studies still need to be carried out on the possible long-term toxicity of taking fish oils.
However, other studies have shown no benefit. The more concentrated versions are more likely to be effective. New Zealand green-lipped mussel extract commonly comes in capsule form.
Complementary therapies
Many people with arthritis have tried a range of complementary therapies in addition to the conventional drugs prescribed by their doctor. About 30 per cent of the UK population has used, or is using, some form of complementary medicine. This increases to nearly 60 per cent among people who have arthritis. However, what works for one person may well not work for another. Some people find them helpful and others try them and choose not to continue. There are a multitude of different therapies. Some of them are thoroughly reputable and are regulated by statutory bodies. At the other end of the scale are therapies making highly dubious claims with little or no evidence to back them up. Complementary therapies can generally be used alongside orthodox treatment, although doctors may vary in their attitudes to them. Practitioners of these therapies may advise people to stop using conventional medications and they should be regarded with extreme caution. Some complementary therapies are available on the NHS and some private health insurance companies will pay for treatment. However, the majority of people who visit complementary therapists each year in the UK pay for their own treatment and they can be costly. Like conventional medicine, complementary therapies do not offer a cure for arthritis. They can, however, help alleviate some of the symptoms such as pain and stiffness as well as dealing with some of the unwanted effects of taking drugs. Complementary therapies can play an important role in encouraging positive changes in lifestyle and outlook, such as increased self-reliance, a positive attitude, learning relaxation techniques and appropriate exercises. Lifestyle changes like these may help to stabilise or improve your arthritis. Some of the complementary therapies that are beneficial for osteoarthritis are listed over the page. I managed to get on three 10week physiotherapy courses. The hydrotherapy sessions were wonderful and I met lots of other people in a similar position, but I had to drive 15 miles there and back so by the time I got home, I undid all the good work. Anne Howard Ive tried everything for my arthritis, but nothing made a blind bit of difference to me. Jan Slaney I had laser acupuncture done on my lower back, but at 25 a time, it was just too much money. So, I only had it done when the pain was really bad. Anne Howard
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Acupuncture
Acupuncture is a traditional Chinese medicine that has been practised for thousands of years. It aims to restore the natural balance of health by inserting fine needles into specific acupoints in the body. The theory is that health is determined by the flow of internal energy through the body. By using needles at these special points, imbalances in the flow of energy can be corrected, thereby relieving pain. The first visit to an acupuncturist can take between 40 minutes and an hour. The acupuncturist will ask about your lifestyle and medical history, then examine you, your complexion and your tongue and look at how you walk, sit and talk. Acupuncture needles will be inserted into chosen points on the arms, legs, feet and hands. This is not painful, but feels as though you are being lightly pinched. Generally, between three and six sessions are required; long standing complaints may need more. An initial consultation will cost around 40 with subsequent visits from 25. Some health insurance policies will cover the cost. Some GPs will you refer you on the NHS. The British Medical Acupuncture Society, 12 Marbury House, Higher Whitley, Warrington, Cheshire, WA4 4QW. Tel: 01925 730727. Email: Admin@medical-acupuncture.org.uk
Alexander technique
Ive practised the Alexander technique for years and find that it really helps my posture and relieves pain Judith Morris The Alexander technique concentrates on how we use our bodies in everyday life and how this can adversely affect their functioning. It teaches pupils new ways of using the body to improve balance, co-ordination and awareness. By learning to stand and move correctly, people can ease stresses on their body and alleviate conditions that are exacerbated by poor posture. Alexander technique is generally taught oneto-one, and you need regular practice to successfully change a lifetime of bad habits. Lessons last between 30 and 45 minutes and most people need between 15 and 30 lessons to become proficient. The Society of Teachers of the Alexander Technique, 129 Camden Mews, London, NW1 9AH. Tel: 020 7284 3338. Email: stat@stat.org.uk
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Aromatherapy
Aromatherapy uses essential oils obtained from plants to promote health and well-being. Essential oils can be used in many ways vaporised, inhaled, used in baths or a burner but one of the most common methods is as part of an aromatherapy massage. Aromatherapy massage combines the techniques of massage with the therapeutic properties of essential oils. The oils then exert their effect both through the powerful aromas and by being absorbed through the skin. Each oil has its own range of properties some are invigorating, some relaxing, some act as antiinflammatories, some as antibiotics. A full body massage will last between one and two hours and cost about 30-35 per hour. To vaporise essential oils, add two or three drops to water in the bowl of an oil burner and light the candle underneath. For an inhalation, add four drops of oil to a bowl of steaming water. Lean over the bowl with a towel over your head, for up to 10 minutes. For an aromatherapy bath, add six drops of oil to the water and lie back and relax for at least 10 minutes. Pure essential oils can be bought at health food shops, chemists and by mail order. Oils which are particularly good for muscular and joint aches and pains are rosemary, camomile, marjoram and juniper. If you have any other health conditions, check if there are any oils you should avoid. The Aromatherapy Organisations Council represents 12 associations and 6,000 practitioners. AOC, P O Box 19834, London SE25 6WF. Tel: 020 8251 7912
Chiropractic
Chiropractic focuses on mechanical problems of the joints, especially the spine. Chiropractors use their hands to adjust the joints of your spine and extremities where signs of restriction in movement are found, improving mobility and relieving pain. While they cannot reverse the degeneration of joints with arthritis, chiropractors claim that by regularly adjusting them they can keep them healthy and mobile, reducing pain and helping to slow further degeneration. On your first visit, the chiropractor will 25
probably take X-rays of your spine. An initial assessment will take longer (about 30 minutes) and cost more (35) than follow-up appointments (10-20 minutes, 20-30). Treatment should not be given where there is inflammation, infection or sometimes if osteoporosis is suspected. To find out more about the general register of chiropractics, contact: The British Chiropractic Association, Blagrace House, 17 Blagrave Street, Reading RG1 1QB. Tel: 0118 950 5950. Enclose an SAE.
Massage
Massage is popular with many people with arthritis. On a physical level, massage can loosen stiff muscles, improve the tone of slack muscles, increase the flow of blood and lymph and ease tension. On a psychological level, a good massage leaves you feeling relaxed and cared for. Before starting treatment, a professional masseur will ask you about particular problem areas and general preference (a gentle touch or firmer pressure). A full massage can last between 60 and 90 minute and costs around 30 per hour. Massage is poorly regulated and your GP may be able to recommend a therapist or your local sports centre or health club is likely to offer it. Some private practitioners will come to your home. The British Federation of Massage Practitioners, 78 Medow Street, Preston, Lancashire P1 1TS. Tel: 01772 881 063.
I find massage really relaxing. I know its not going to make any difference to my arthritis, but being relaxed helps relieve the pain. Judith Morris
Osteopathy
Osteopathy focuses on the importance of the spine and peripheral joints for the proper functioning of all parts of the body. Osteopathy was founded on the belief that disease is the result of a disturbance in the normal balance of the defence and repair mechanisms in the body. Osteopaths manually adjust the alignment of the body and apply pressure to the soft tissues of the body. This corrects structural and mechanical faults and allows the body to heal itself. They may also give advice on lifestyle changes and exercises to do at home. An initial assessment is similar to that carried
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out by a chiropractor, but X-rays are rarely used. Further examination is normally carried out in a variety of positions lying on your back, front or side, or sitting with your legs over one side of the couch and your back towards the osteopath. An initial assessment may take up to an hour and cost 30. Follow-up appointments are usually around 20-30 minutes and cost approximately 20-30. The number of treatments required will depend on the nature of your problem. For further information contact: The General Osteopath Council, Osteopathy House, 176 Tower Bridge Road, London SE1 3LU. Tel: 020 7357 6655.
some therapies are available on the NHS, so it is worth asking your GP if he or she can recommend a therapist or a particular therapy. If possible, talk to other people with osteoarthritis who have used the therapy you are thinking of trying. Ask them if they can recommend a therapist, but remember that what works for someone else may not suit you. The Institute for Complementary Medicines (see page 38 for contact details) can also help you find a qualified therapist. Ask how much treatment will cost, and how many sessions you will need to feel a benefit. Ask if the therapist is a member of a professional body, what kind of training they have had and how long have they been practising. Ask if they have insurance in case something goes wrong. Tell your therapist about any drugs you are taking, and your doctor about the therapy. Don't stop taking prescribed drugs without talking to your doctor first. There is more information about complementary therapies in Arthritis Care's booklet, The Balanced Approach.
Surgery
While some people with arthritis will never need to have surgery, some people find it is very successful in relieving pain caused by arthritis, improving mobility and reducing stiffness. Surgery is a big decision to make and is usually only 27
Having my hip replacement was the best decision Ive ever made. I chose to have a spinal block as I wanted to be awake. I thought that if I could see what they were doing, it would give me a sense of power and the confidence to get better. I still have a bit of pain, but it doesnt limit me like it used to. I could hardly leave the house before. Meriel Blake My knee replacement failed due to an infection setting in. I think Ive just been unlucky and it certainly hasnt put me off trying again. Joyce Cox Three months ago I broke my hip replacement when I fell over. The new one is far superior its great. The worst bit was waiting for it to be done. They gave me an epidural when I had the operation and I had no pain at all. My recovery started straight away. Mr Viv Williams I think a long stay in hospital does affect you. For a while I just couldnt see a light at the end of the tunnel and I was a bit frightened of managing when I came out, as I live alone. It does get better though. Mr Viv Williams
considered after all other suitable treatment options have been explored and when the joint is badly damaged by arthritis. Surgery can be minor to assess damage done or smooth joints and repair cartilage (also known as an arthroscopy) or it can be more intrusive to replace or to fuse a joint. There is a risk the operation won't work, or will lead to further physical complications. Recovery may take some time and a lot of effort on your part. It is a good idea to weigh up the pros and cons of surgery with your healthcare team, including your orthopaedic surgeon. However, many people decide that the positive effects on their lifestyle will outweigh any risks. Having surgery could bring about a dramatic improvement in your pain levels and quality of life. Surgery can also prevent joints deteriorating further and prevent disability. You will find more information and advice in Arthritis Cares Surgery booklet. Call 020 7380 6540.
New developments
In spite of great progress with artificial joints, there are, unfortunately, still many people who have to live with their osteoarthritis and the daily pain it can cause. You may still have to see the doctor from time to time to have your condition reassessed and your treatment plan discussed. We do not yet know the causes or the cure for osteoarthritis, but recent research is uncovering the mechanisms which lead to joint damage as well as factors that control the healing response. For example, we now know some of the chemicals which thin out the cartilage in osteoarthritis and drugs are being tested that inhibit the actions of these chemicals. Doctors and research workers have changed their attitude a great deal in recent years. They now see real possibilities of understanding and controlling osteoarthritis in the future. They no longer see osteoarthritis as an inevitable part of ageing or a wear and tear disease, but more as a major challenge and an important problem which they can one day solve.
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PRACTICALITIES
Living with osteoarthritis may not be easy, but there are plenty of sources of help. The organisations listed on pages 38 and 39 of this booklet also have a wealth of practical advice and experience to share.
At home
Most homes arent designed for people with arthritis. But there are many ways you can set things up at home to make sure that it is as streamlined and stress-free as possible. There are lots of handy gadgets and useful adaptations that can help around the home. In the kitchen, for instance, they might include: rearranging cupboards and drawers so the things you use the most are nearby lightweight pans, mugs or a kettle equipment with easy-to-use buttons and switches an electric tin opener, a cap gripper, or knives and peelers with padded handles a stool to sit on while you are preparing food, or a trolley for moving heavy items across the room devices for turning taps more easily evening up your worktops, or raising the oven and fridge, so they are at the right height for you and you can slide things around.
Im very conscious of the heights of furniture, such as chairs, and the latches and knobs on doors, cupboards and gadgets. When I need something new, I make a list before I go of criteria that must be met. It means that I dont get something home and am then unable to use it. Anne Howard When its really cold, I find that wearing thermal shorts under my trousers really helps to keep my hip joint warm. Mens thermal boxer shorts are best because they are bigger and go almost down to my knees. Meriel Blake I find that ceramic hobs are far easier to keep clean and I only use the top oven to avoid bending down. Its the same with the fridge. I made sure that the fridge was at the top and the freezer at the bottom because I use the fridge more. Anne Howard I find a tea trolley is great for moving things around. Its far easier than trying to balance a tray. Jan Slaney Use a small travel kettle rather than a large one if your wrists are weak. Jan Slaney Reaching things high up and low down is difficult so I now arrange my things so that they are within easy reach. Anne Howard
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Care assessment
You have the right to an assessment of your care needs at home again, contact your local social services department. If you have a specific carer, the assessment must also take their needs into account. Help varies a lot from area to area, but social services may be able to arrange for care workers to visit you for domestic care, such as cleaning and shopping, or to give you support with personal tasks.
Other people
If you find you are doing a lot of work around the home, what about getting someone else to help? Friends and family may be able to lend a hand. You could also think about paying a cleaner, or getting a handyperson in for bigger tasks. Local 30
organisations may be able to put you in touch with volunteers to help you with jobs around the house. Ask your local council, citizens advice bureau or library if they know of a local volunteers organisation which can help. Theres lots more information about home life in Arthritis Cares booklet, Reaching Independence.
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the time may come when you need to consider changing jobs. Some people do have to stop working altogether this is never an easy decision and its important to get professional advice about your rights and options. Remember that giving up work doesnt mean that you are giving up your life: retraining, further education and voluntary work may all open new doors. It is important to discuss options before deciding to give up work. The Disability Discrimination Act (DDA) says that companies with more than 15 employees must take reasonable measures to ensure they dont discriminate against disabled people. These can include changing the working environment, moving your workspace to the ground floor, or retraining you and reallocating your duties. But you will only be protected by the DDA if your employer knows about your arthritis. The DDA also covers recruitment, training, promotion and dismissal and only if you fit the definition. Information for people with arthritis looking for or already in work can be found in Arthritis Cares booklet Working Horizons. If you are going into higher education (post18), you may be eligible for a disabled students allowance. The allowance is intended to cover any extra costs or expenses students have because of a disability. You dont have to be a full-time student to get it. For more information, contact Skill (see page 39).
Transport
I find trains very hard to get on and off. And there are often so many steps at stations. Judith Morris Getting around is very important. If it becomes difficult for you to use public transport or drive a car, your life can become very restricted. There are some transport schemes and services run by local authorities, and voluntary and commercial organisations to allow you to maintain your mobility. However, service provision throughout the UK can be patchy. You can apply for a blue badge, which means that you will be allowed to park in a designated parking space closer to your destination. The badge belongs to the disabled person who qualifies for it (who may or may not be a car driver) and can be used in any vehicle they are
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travelling in. For further details visit the Department for Transport website at www.dft.gov.uk Some local authorities (in the phone book) produce guides to accessible bus, train and minicab services in their area; and some run their own transport schemes. Your local disability organisation (in the phone book), library or local newspaper may also be able to tell you about whats on offer locally, and any other schemes run by voluntary or commercial organisations. Individual railway operating companies can give you information, help you plan and book your journey and arrange any assistance you need. Get their details from the National Railway Enquiries Line on 08457 484950 or the Rail Travel for Disabled Passengers booklet, available from any train station. The booklet also tells you how to get a disabled persons railcard. Most international airports produce their own disability access guides. Tripscope (see page 39) runs a free information service and can help you plan local, national and international travel. For more ideas, you can order two free leaflets from the Department of Transport which are a guide to transport for disabled people: Get Wheelchair-Wise and Wheels within Wheels. See page 39 for details. If you prefer to drive then just a few minor adjustments such as a padded steering wheel, a headrest, extra side-mirrors or a wide-angled mirror may make driving easier. An automatic gearbox and power steering can be essential for many people with osteoarthritis as they reduce strain on joints and muscles. If you get the higher rate of the mobility component of the disability living allowance, you may be able to use it to hire or buy a car through the Motability scheme (see page 39). If you prefer to get around by wheelchair or scooter, again the Motability scheme can help. If you need a specially adapted car, contact an accredited driving assessment centre. Ask the Mobility Advice and Information Service (MAVIS) for a list of centres. Don't forget to tell the Driver
Buses are great where I live. You dont even have to stand at the actual bus stop they stop and pick you up just if they see you. Public transport isnt all bad. Meriel Blake I cant use public transport its too far from my house and buses dont come often enough. I have to rely on my car. Judith Morris People have been generally very kind to me when using public transport. A nice train conductor helped me off the train at Manchester once, carried my case and asked someone else to help me on to my connecting train when it came. Meriel Blake
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Vehicle Licensing Authority (DVLA) and your insurance company if your arthritis affects your ability to drive. You may be eligible for free or discounted travel too. If you are disabled or over 60, your local council may run a scheme making you exempt from paying for public transport. Contact your local council or social services for more details.
Benefits
I am eligible for the DLA low rate care component and the higher rate mobility component, but what a fight that was. It took two and a half years to thrash it out. I was turned down to begin with, but reapplied and was awarded it without quibbling. Anne Howard Im lucky because I worked in the welfare department of the NHS so I knew how to fill out the benefit forms. The mobility component of the DLA allows me to be able to run a car its a great asset and has opened up my life. Joyce Cox I didnt want to use the Motability scheme because I didnt want to be locked into a three-year contract. My car has everything I need fully adjustable seats and electric windows. However, if anything goes wrong with it, its my responsibility. Anne Howard The DLA has helped me. It has allowed me to do and have the things which I would have had to give up, like running a car. Anne Howard 34 You may be entitled to state benefits to help with the extra costs of having arthritis or if you are unable to work. Claiming benefits can be complicated and time consuming so, before you start, it is worth getting expert help and advice from: a social worker or welfare rights officer at your social services department (social work department in Scotland, health and social services board in Northern Ireland) your citizens advice bureau or other advice centre your local social security office or Jobcentre Plus office (under Jobcentre Plus or social security in the phone book) Benefit Enquiry Line an information line run by the government, which aims to advise disabled people of their benefit entitlements and assists them in making a claim. Call 0800 882200 Arthritis Care's booklet, Benefits for Beginners.
DLA and AA
Whether you are working or not, you can claim disability living allowance (DLA) if you are under 65 and need help getting around or with personal care (such as washing and dressing). If you are 65 or over you may be entitled to attendance allowance (AA) for help with personal care. DLA and AA are not means tested, are tax free and are paid in full on top of other income and all other benefits you get. They also mean you may qualify for other benefits or help, so it is worth applying for them if you think you are eligible. Dont be put off if your claim is initially unsuccessful. It is worth reapplying as many people go on to qualify on further attempts.
When you apply for DLA or AA, you are asked to explain how your condition affects you. Keep a diary over a couple of weeks, listing any things you have trouble doing and the time it takes you to do them, so you don't underestimate how much help you need. Reflect the bad days as well as those when you can manage. Benefits for Beginners guides you through the forms and helps you think out things to mention.
The Benefits for Beginners booklet is absolutely excellent for benefit information. If you get turned down, then fight. I had to fight for DLA and got it in the end, thank goodness. Jan Slaney
Incapacity benefit
If you can no longer work because of osteoarthritis or other health problems, you may be able to claim incapacity benefit. You usually need to have paid a certain amount of national insurance contributions to get it. Any occupational pension or health insurance you receive may reduce the amount of incapacity benefit you are paid.
Other benefits
If you are on a low income, there are several other benefits you can apply for such as income support, pension credit (if you are over 60), housing benefit and council tax benefit. Carers can apply for benefits too but should check first before claiming carers allowance that their claim will not affect the benefits of the person they care for. The Benefits Enquiry Line (BEL) is a free telephone information service. It cannot deal with claims, but it can provide answers to any questions about benefits. Tel: 0800 882200 (or, in Northern Ireland, 0800 220674). See Arthritis Care's Benefits for Beginners for more details on other benefits. 35
Your emotions
Since my hip replacement I do still have the odd black day. The operation was such a challenge and I was on a high for quite a long time. I thought I could do anything, but of course I couldnt and this frustrated me. Meriel Blake I had a gruelling time after my knee replacement. I was quite down. However, there comes a time when you realise that you are making progress. The best thing is to be positive. Joyce Cox When you want to go out socialising you end up making a deal with yourself and accept that you might feel a bit off colour the next day. Anne Howard The invisibility of the pain of osteoarthritis is most frustrating for me. Nothing is more annoying than when someone says: But you look so well. Veronica Jones I think that self-management is a wonderful thing. The more you know about your condition, the more powerful you feel. Veronica Jones I decided to have my hip replacements one at a time rather then both together as it knocks you a bit for six. I did get a bit depressed when I was recovering because of the weakness and painkillers. Mr Viv Williams 36 Everyone's experience of arthritis is different. Not all people experience the same symptoms, level of pain or the same feelings. So, just how does arthritis feel? Depending on how advanced your arthritis is, we know that pain is high up on the list as well as fatigue and a whole host of other physical symptoms. But when it comes to emotions, things get a bit more complicated. Don't be surprised if you feel frustrated one day and perhaps angry the next. You may not be the type of person who expresses their emotions freely, but it is good to let your emotions out. Bottling them up can make things worse. Pain can usually be controlled, stiffness and inflammation relieved, and there are ways to overcome the loss of strength, grip and mobility. Some people find that their lives do not change that much and that they can more or less carry on as normal. Some people become stronger and more determined as a result of having to adapt their lives to fit in with their arthritis everyone is different. Your own reactions to arthritis will differ from time to time, feeling positive one week and negative the next. Remember though, that it is perfectly natural to feel out of sorts sometimes. You may find Arthritis Cares booklet, Our Feelings, Our Emotions, helpful.
Your relationships
Sharing information about your condition with family and friends can really help them to understand what youre going through. People you are close to may really want to help, but not know how. Well informed friends and family members will be in a much better position to help you should the need arise. You may be worried about letting them down or about depending on them too much. Talking and listening is key. Explain how your arthritis affects you and be as clear as you can about how you are feeling. Your relationship may come under a bit of strain too. Talk to your partner about how you feel, both physically and emotionally and encourage them to ask questions If you are feeling stiff or having trouble moving
around, it is hard to be spontaneous; and even a hug can be difficult if you are in pain. There will be times when you are just too tired or painful to get close to your other half, but there are alternatives. Try different positions; supporting your body with pillows and cushions to make love-making more comfortable. A warm bath or shower beforehand will help to loosen your joints. You could even try persuading your partner to give you a gentle foot or back massage. Dont be embarrassed to raise the issue with your healthcare team. You may find Arthritis Cares booklet, Our Relationships, Our Sexuality, helpful.
When I feel achy and stiff I get bad tempered and depressed. I am like a bear with a sore head and my poor partner is the one who has to pick me up and put me back together again. Pennie Cumming Friends mean well, but theyre not necessarily tactful. Ive been really hurt by what people have said. My daughter has been excellent, though. The first time I used a wheelchair at the mall, we had a real laugh together it took away the embarrassment. Jan Slaney I had to give up gardening I used to have an allotment. However, I still grow tomatoes and have very good neighbours who help to pick them for me. There are ways round things its a lot to do with your own attitude. Mr Viv Williams I love DIY and gardening and when I have a job to do I just have to finish it and get it right. I often stubbornly keep going when common sense tells me I should stop and rest my joints. Despite this, I will just go out and do it again because even if Ive got OA, it certainly hasnt got me. Pennie Cumming
Living well
From time to time, your arthritis will get on top of you. Anger, frustration, uncertainty, depression and fear are all very understandable and very common. Several things may help. Try to build a good relationship with your health professional. If you like and trust them, you will feel more positive and it will make it easier to approach them if you have a problem. Find out as much as you can about your arthritis. It will make you feel less worried about the future. Accept your limitations. Focus on the here and now, and remind yourself about what you can do and enjoy, rather than the things you cant. Get out and about keeping up with friends may become tricky if you are having problems with your osteoarthritis, but try to make space for your social life. Include exercise in your day. It will build your strength, help you to keep flexible and boost your mood. Talk to somebody who understands how you are feeling. This could be someone close to you or someone else with arthritis. Our popular course,Challenging Arthritis, focuses on what you can do for yourself, how to get the most from your health professionals, handling pain, fatigue and depression, relaxing, and keeping active. It is a great chance to meet with others in the same position. For more on what Arthritis Care offers, see the back page.
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USEFUL ADDRESSES
General
arc (Arthritis Research Campaign)
Copeman House St Marys Court St Marys Gate, Chesterfield Derbyshire S41 7TD Tel: 01246 558033 www.arc.org.uk Funds medical research into arthritis and produces information.
Complementary therapies
Institute for Complementary Medicine
PO Box 194 ,Tavern Quay London SE16 7QZ Tel: 020 7237 5165 www.icmedicine.co.uk Umbrella body. Can put you in touch with qualified practitioners locally. Send large sae and state the therapy.
DIAL UK
St Catherines Tickhill Road Doncaster DN4 8QN Tel: 01302 310123 www.dialuk.org.uk Details of your nearest disability advice and information service.
Health services
NHS Direct
Tel: 0845 4647 www.nhsdirect.nhs.uk Information about health, local NHS facilities and waiting lists.
Ricability
30 Angel Gate City Road London EC1V 2PT Tel: 020 7427 2460 www.ricability.org.uk Researches and publishes guides on services and equipment.
Pain management
Pain Society
21 Portland Place London W1B 1PY Tel: 020 7631 8870 www.painsociety.org Information about chronic pain and pain clinics.
Daily life
Disabled Living Centres Council
Redbank House, 4 St Chads Street, Manchester M8 8QA Tel: 0161 834 1044 www.dlcc.org.uk Provides information on disabled living centres (demonstration and resource centres for disabled people) around the UK.
RADAR
12 City Forum 250 City Road London EC1V 8AF Tel: 020 7250 3222 www.radar.org.uk National campaigning organisation which also publishes a wide range of information on general disability issues.
Pain Concern
PO Box 13256, Haddington East Lothian EH41 4YD Tel: 01620 822572 Information and helpline.
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Getting around
Motability
Goodman House, Station Approach, Harlow Essex CM20 2ET Tel: 01279 635666 www.motability.co.uk Provides cars and powered wheelchairs through the Motability scheme.
Other
British Association for Counselling and Psychotherapy
BACP House 35-37 Albert Street Rugby, Warwickshire CV21 2SG Tel: 01788 550899 Information line: 0870 443 5252 www.bacp.co.uk Details of local counsellors.
Tripscope
The Vassall Centre, Gill Avenue Bristol BS16 2QQ Tel: 08457 585641 www.tripscope.org.uk Arranges travel for people with disabilities.
AbilityNet
PO Box 94, Warwick Warwickshire CV34 5WS Helpline: 0800 269545 www.abilitynet.org.uk Support for people with disabilities to use computer technology.
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Arthritis Care is the largest UK-wide voluntary organisation working with and for all people with arthritis. It aims to empower people to take control of their arthritis, their lives and their organisation. It has over 500 branches and groups, and 70,000 supporters. ARTHRITIS CARE: provides a helplines service by telephone and letter, weekdays 12 noon-4pm on a freephone helpline (0808 800 4050). It is also available 10am-4pm charged at the national rate. Tel: 020 7380 6555. Email: Helplines@arthritiscare.org.uk offers The Source, a helpline service for young people with arthritis by telephone, letter and email. Freephone: 0808 808 2000 weekdays 10am2pm. Email: thesource@arthritiscare.org.uk offers a range of self-management and personal development training courses for people with arthritis of all ages to enable people to be in control of their arthritis runs four hotels in the UK produces a range of helpful publications including a bi-monthly magazine, Arthritis News campaigns for greater awareness of the needs of all people with arthritis has a local office in Wales, Scotland and Northern Ireland, and four regional offices in England. Phone 020 7380 6540 to find your nearest one.
Arthritis Care
18 Stephenson Way, London NW1 2HD Tel: 020 7380 6500. Fax: 020 7380 6505 www.arthritiscare.org.uk
Written by Sarah Rastrick. Edited by Kate Llewelyn. Design: Jon Heal. Production: Chris Hogg. Thanks to members of Arthritis Cares readers panel and Arthritis Cares medical advisory group for their guidance in producing this booklet..
Published by Arthritis Care. Registered Charity No. 206563. Printed by Manor Creative. 1st Edition, November 2003 ACR124
ISBN 1 903419 31 X